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Camille Offline OP
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Hello everyone,
I was diagnosed with squamous cell cancer of the tongue on March 17, 2017. Towards the end of January I discovered a spot on my tongue, that looked like a canker sore. I thought that's what it was but after 2-3 weeks when it wasn't getting any better I made a appointment with my dentist. On Feb. 6th he looked at it and told me it looked like I had bitten my tongue because it lined up perfectly with my back molar. I had no recollection of biting it and the ulcer part was deep so I had a hard time thinking I could have done that. He sent me home and told me to continue rinsing with warm salt water and come back in 2 weeks so he could check it again. Still feeling in my gut something wasn't right I made a appointment with a different dentist. He looked at it and took a picture of it and agreed with the first dentist- simply trauma to my tongue from a bite. I told him I was stressed and concerned it was something more, but he said I didn't have any of the risk factors for oral cancer. I have never smoked a day in my life, have never used tobacco products, and don't drink. He wanted to see me back in 2 weeks or if I wanted I could see a oral surgeon to put my mind at ease.That appointment was on Feb. 24th so leaving there with still a feeling knowing something wasn't right I made a appointment with a oral surgeon. I wasn't able to get in till March 10th but I saw a excellent oral surgeon who did a biopsy. (He later told me he knew what it was the minute he saw it). The pathology report came back on March 16 and I* got the results...squamous cell carcinoma. Needless to say I was devastated, though i was prepared because I knew in my heart it had to be more because it just wasn't healing up. I am so scared that the month I wasted going to those 2 different dentists cost me valuable time.
The oral surgeon got me in the following week to see the ENT doctor he recommended and i had my first appointment with him. He examined me and confirmed what the oral surgeon said. He also did the procedure where they put the tube in your nose and down to your throat. He said everything looked normal there as far as he could see. He discussed with me 2 options...trying radiation first or surgery. My husband and I talked about it with the doctor and he said he felt confident he could get it all with surgery so that is the choice I made. In the meantime before surgery I have had blood work done, a chest x-ray, a appointment with my cardiologist and a EKG to clear me for surgery and last Friday a CT scan and a PET scan. My question for anyone who could be so kind to answer is...does this seem like a exceptionally long time to wait for surgery? He also said the surgery will take about 2 hours and I should be able to go home from the hospital that same day barring any unforseen complications. Does that sound accurate? Since being diagnosed I have been reading everything I can get my hands on and I am just overwhelmed and scared from all the varying things I keep reading. Any advice or kindness shown will be very much appreciated. Thank you so much.


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Camille...sorry about your diagnosis. I had a chronic sore throat in mid January. I got a CT scan in mid February and had surgery for a mass in my epiglottis 3/2/17. The mass was the same thing you have...squamous cell carcinoma. I been in radiation and chemo for 2 weeks. Be aggressive in asking questions and getting answers. My surgery on 3/2 was outpatient. I was in at 8 and out by 1 pm. Find a good cancer doctor and go from there. In the mean time, keep your chin up ( I know it's hard). This is a great support group! I wish you the best!

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Welcome to OCF! You are in the best place for info and support.

What bothers me about your treatment plan is the choice between surgery or rads. All physicians should be going by a flowchart to determine which path would have the best outcome for their patient. Then hearing a 2 hour window and outpatient surgery this further makes me think it does not sound right. Of course, I am not a physician and I dont have a medical degree or background but Ive been here on this site talking to hundreds, probably more like thousands of people over almost 10 years. Ive picked up quite a few things about treatment plans and how things should go. I strongly suggest going for a second opinion at a Comprehensive Cancer Center (CCC) before starting any treatment. Gather all your medical info and make an appointment. Being this is your first time having cancer, you should not have much of a change even waiting for another month. If the CCC doesnt have open appointments for a while its ok to ask about being placed on their cancellation list and calling a couple times a week to see if they can move you up. This usually works to get an earlier appointment for most patients Ive talked with. Only after getting that second opinion can you begin to make your treatment plan decisions. Its so much better for you to have faith in the medical team you select and not second guess what they tell you. When I read about your hesitation, I knew you were not comfortable with the info you had been told. Its tough enough on a patient getting diagnosed and going thru so many tests and appointments. I think you will see a big difference in how a CCC does things compared to the doctors you have already been to. Below you will find some helpful links.

Best wishes with everything!!!

List of CCCs

OCF main site --- DIAGNOSIS

OCF main site --- TREATMENT







Last edited by ChristineB; 04-17-2017 05:59 PM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Welcome to the forum. I'm sorry you have to deal with oral cancer. However, all of us here have dealt with it one way or another, so we know and understand what you're going through.

Since you only had the CT scan and PET scan on Friday, I would think the treatment should depend on those results rather than on the scope. So, you may have to prepare for a possible change of plans. I agree with Christine that you should consider a second opinion at a CCC. There the doctors work as a team and there are treatment protocols that they have to follow. You will probably benefit from other services there, such as a dietitian or counseling at any point if you need it.

When my husband was diagnosed, we were told that the timeline given by the government (I'm in Canada) for oral cancer patients was to get them to start treatment in six weeks. Those weeks actually flew by. We saw the radiation oncologist, the medical oncologist, the dental oncologist (all at the same hospital), had the teeth checked, mask made, and then the first treatment started. My husband was followed by a dietitian all through to make sure he was eating enough. I really can't think where else we could get that kind of service.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Camille -

Sounds like they are going to try a resection of the tongue and verify clear borders. I would recommend going to the best available ENT with a proven history of treating oral cancers for a second opinion.

Read my Signature. The partial glossectomy I had at the beginning of my journey had clear borders. However, the cancer cells had already metastasized to my lymph nodes, but did not show during the surgical prep x-rays and scans.

Don't mess around with this. Get a second opinion

Good Luck


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

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Camille Offline OP
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Thank you so much everyone for your kind words and suggestions. I feel so thankful to have found this forum to be able to talk to kind, caring people who can understand what you are going through. I live in Las Vegas and have talked to quite a few people about this ENT doctor who will do my surgery. Everyone has reassured me, including the oral surgeon who referred me to him that he is the best in this field. I have not heard the results of my scans yet, but he did say he felt surgery would be the best first option and then radiation if needed. This is all just so overwhelming to me. In 1986 when I was pregnant with my first child I was diagnosed with melanoma. After my son was born I had surgery to remove it. The cancer had not spread anywhere else so other than regular visits for many years to my oncologist and dermatologist I didn't have to have anything else.
So am wondering if I should call my prior oncologist and get in to see him before my scheduled surgery. I did have a long talk with the oral surgeon a couple of days ago and he said in his opinion he agrees with the doctor that surgery should be the first option dependent on how the scans turn out. Have not heard the results of the scans yet however. Just having such a hard time accepting this as like I said I have never smoked a day in my life and don't drink either. Just trying to stay positive and tell myself you beat melanoma 31 years ago, now you just have to beat this and once again. I appreciate everyone taking the time to respond very much!
Camille

Last edited by ChristineB; 04-18-2017 01:52 PM. Reason: removed religion from post

February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Camille,

I had to read everything I could when my husband was diagnosed on Valentine's day. He had his partial glossectomy and neck dissection on 3/27. It took over 3 weeks to coordinate the surgeons's schedule and get all the necessary testing done prior to surgery. He was in the hospital for 2 days following surgery. He had the best case scenario based on everything that had been explained to us prior to surgery. After surgery, the final pathology actually downgraded his cancer to T2N0M0. He did not have to have a skin graft or free flap. He was able to speak right after surgery. He did have a nasal feeding tube for 10 days. That allowed him to heal. He was ready when they removed it and has not had difficulty swallowing or resuming his regular diet. He does have a lisp with certain words but I'm sure that will continue to improve. The pet scan appeared to have involvement in the lymph nodes. However, the final pathology all lymph nodes removed were negative. At this time, his team of physician's have changed his course of therapy and now recommended observation instead of radiation. He was back to work after taking off 2 weeks. I was prepared for the worst and so far things have been much better than expected. Best of luck to you and I hope you find this encouraging.


Wife to James 39,
Scc tongue dx 2/14/17
Partial glossectomy & neck dissection 3/27/2017
T2n0m0
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Camille Offline OP
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Well today I am one week away from my surgery. I am trying to stay positive and stress free, but boy is it hard! I did get a second opinion and they were also in agreement with the surgery. The doctor said he would not recommend going the route of radiation yet, if surgery is able to remove it all, and the surgeon feels confident he will be able to. The results of my scans were not back at that time yet, so I have my pre-op appointment Monday May 1st and I will get the results then. My surgeon has been on vacation so have not been able to get any results yet. Am hoping and praying that the cancer has not spread anywhere else, but am really scared because every once in a while (mostly when I lay down at night) my jaw, ear, and throat on that same side will hurt. I am just so ready to have this all behind me and start on hopefully the road to recovery. I am still so upset and discouraged by the fact that I wasted the whole month of Feb. going to 2 different dentists who both thought it was nothing. Guess I can't dwell on that though, because it doesn't change the outcome. I just hope it hasn't cost me precious time in this battle. Thank you so much to everyone for your uplifting messages and responses. They truly do mean so much. And to AandJ I am praying I have a more positive experience like your dear hubby's and appreciate your encouraging words so very much.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hello everyone,
Well today I come home from work to a message on my answering machine to call the insurance girl at my doctor's office. I call and she tells me my insurance has denied my surgery which is scheduled for a week from today. I am devastated and don't know what to do, and am really confused on why they would deny it. She didn't have much info to give me other than they want to speak to my doctor about what he plans to do and why he plans to do this. I just don't understand because they approved the chest x-rays, blood work, CT scan, and PET scan. Why would they then deny the surgery? I tried calling my insurance company but of course they were gone for the day. I will call first thing in the morning, but now I am really even more stressed and feel I am at my breaking point. Has anyone here had to deal with this or have any suggestions on what i should do with my surgery so close now? I know I have to get this surgery as this has gone on a while now, but know we won't have the money to pay all this outright. I am so down tonight and just feel like everything is just weighing on me so heavy. I am so tired of the constant pain when trying to eat, drink, or even talk and not being able to sleep at night, and now this. Please keep me in your prayers that this will out work out o.k. for me.
Camille

Also this doesn't make much sense either...my insurance paid the pathologist fee, and the oral surgeon's fee, but they denied the fee for the biopsy. I don't understand that at all either
How can you have a pathology report without a biopsy? Just more stress when I don't need it..


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Camille Offline OP
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I had my pre op appointment on Monday and the surgeon went over all my tests and scans,. There was a suspicious area in one of my lymph nodes in my neck so now he has added a neck dissection to my surgery to remove lymph nodes. My chest x ray and my other tests were good and he said I am actually pretty healthy. On a positive note my insurance has now approved my surgery but instead of going home today. I will be staying overnight in the hospital. My surgery is at 4 this afternoon and just praying all goes well. Thank you to everyone for all your kind words and thoughts.


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Best wishes with everything, Camille! I hope everything goes as planned and you will be soon cancer free. Please update us when you can.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Thank you so much Christine for all your advice and kindness​ shown to not only me but to everyone on here. I am trying to not stress and remain positive. Have to be at the hospital at 2 so trying to not stress too much Can't have anything to eat or drink so of course this is when. I am the most thirsty. Did spend the last week eating as much as I could lol. Just ready to get this over with because the last week or so I have had a lot of pain. In my ear and neck or throat which has made it hard to sleep at night. Guess I will know ow more after surgery if this is going to require radiation or chemo. Thank you so much for your thoughts and prayers


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Camille,
I hope everything went well for you this week.
I am so glad I came across your post. I will be seeing an Oral Surgeon on Tuesday to have him evaluate an area on my tongue. Like you, I have been dealing with a chronic sore throat, ear and neck pain since February. I have seen 2 ENTs as well as my regular doctor. I did have a head/neck MRI which revealed thyroid "nodules' which subsequently came back negative. I know something is not right, as my voice has also been hoarse this whole time as well.
I will be looking forward to your update and pray your surgery went well!


MrsSmitty
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Camille Offline OP
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Dear MrsSmitty, Christine, and everyone who has been so kind to reply and send positive thoughts and prayers,
I am relieved to say the surgery is now behind me. Monday was very stressful because at my pre op appointment I still did not know if my insurance company was going to reverse the denial for my surgery My doctor was livid about them denying it but once they found out the pet scan showed a suspicious node in my neck and he added on the neck dissection, they then approved it. That was just so unreal hearing it was denied.

I had my surgery Wednesday afternoon at 4:30 and it took about 3 a day half hours. My doctor said he got all the cancer out of the tongue and it had clear borders and he was able to stitch my tongue up saving my nerves and most all of my tongue. He said the one node was a really ugly, hard mass and he was glad he got that out and took additional lymph nodes and a wide margin I hopes he got it all. They kept me overnight in the hospital and I was released Thursday afternoon . I have a drainage tube in my neck which will be removed at y post op appointment on Monday and boy will I be glad to get rid of that. It is uncomfortable and makes it hard to sleep comfortably.

My tongue feels very big but I guess that is par for the course and neck is swollen. The weird thing is my ear on that side feels very late though it isn't so I am guessing it is nerves I have been able to eat soup jello, pudding etc and I have pain mess so all in all I am hanging in there. Guess I will find out on Monday if additional treatment is needed. Right now just thank goodness the surgery is behind me Will keep you in my thoughts and prayers MrsSmitty that you get good news. You are doing the right thing by not ignoring it.


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
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Wow!!!! Sounds to me like you are doing very well with your recovery. Im so glad to hear the surgery went as planned and your doctor says he got clear margins. Hopefully this will be all the treatment you need and you can get back to living life smile You are doing great with being able to eat. Im sure its not the easiest thing to do and must be uncomfortable, you are definitely a trooper!

Keep us posted on your progress and upcoming appointment.

Best wishes with your continued recovery!!!



PS... Im not sure what you mean about your ear feeling "late"???


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Christine. I should not try to type on pain meds clearly lol. I meant to type my ear on that side feels really large ad very numb. Thank you for your kindness and concern I keep telling myself one day at a time and every day gone by is another day behind me! Just can't wait to get this tube out.


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Ok, now I understand it! One day, you will look back on this and laugh. smile

Numbness is from the swelling. You may have numbness for a few days but dont be surprised if it hangs around for several weeks, even months as swelling can take a very long time to be gone completely. Weeks late, you may appear that you are back to normal but inside there could still be swelling you cant easily see for a very long time.

To me, you sound like you are doing very well. Im sure you have some pain and discomfort. Those drain tubes can be so annoying! But they are actually doing a good thing by removing all the fluid build up.

Hang in there and best wishes with your upcoming appointment!


PA... When you have a few minutes and feel well enough please review the link I sent you in a private message (PM) and add your signature. It will greatly help us to help you. The detailed instructions are also listed in the very first post titled Posting Etiquette in the New Here, Read This First section. Thank you! I hope you have an easy day today.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 10
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Camille,
I am so glad surgery went well. Hopefully tomorrow you get good news as well!
Like you said...one day at a time. I will be following for sure!
Take care of yourself and listen to your body!


MrsSmitty
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Very happy to read that your surgery went well! I have surgery this coming Tuesday.
I can only imagine how stressful the insurance nonsense was. Best wishes for speedy healing!


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
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Camille Offline OP
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Hello everyone,
I had my post op appointment yesterday and just wanted to give a update. All I can say is I feel so fortunate! My doctor said he got all the cancer from my tongue with clear borders so no more cancer there at all. He took 34 lymph nodes out of my neck and 1 node was a very hard, ugly, cancerous mass measuring about 1 centimeter but the node was still totally encapsulated so the cancer did not spread and he was able to remove the node totally intact. All of the other nodes were negative. He removed the drain tube from my neck and that was such a relief to get that out. I was actually able to sleep for a full night last night since last Tuesday. He downgraded my cancer from stage 3 to stage 2 since there was no spread. I will be seeing a radiation oncologist within the next 2-3 weeks because my doctor just wants him to go over my file and confer that at this time he agrees with him that nothing further is needed. I will see my doctor every 3 months from now on. My neck is still very sore as is my tongue but it is getting better every day and I am starting to eat more each day. Today is my first day back at work and it just feels so good to feel somewhat normal again. My speech is still a little slurry on some words and my neck and right side of my face are still numb and swollen but I can live with that. Each day is a joy and i will take it one day at a time and be grateful for every day. Thank you to all the very special people here for your kind thoughts, prayers, and concern, and just know you are all in my thoughts each and every day.

Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Good for you! Enjoy your health and be grateful the problem was caught and addressed with minimal interruption to your normal daily activities.

Great news and Good Luck in the future!


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

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Camille Offline OP
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bjmpittsburgh,
Thank you so much for your kind and encouraging words. I just feel very lucky and blessed to be at this point 1 week from my surgery. I am just so glad I didn't ignore the nagging feeling in my gut telling me something was wrong, even though both dentists kept insisting I was not at risk because I have never smoked and don't drink. I will be seeing the radiation oncologist sometime in the next month and as long as he agrees with my doctor I won't have anything until my next check up in August. After battling melanoma 31 years ago, and basal cell carcinoma a few years back, now squamous cell I feel like I have had the trifecta of those 3 and ready to be done lol! I am just taking it one day at a time and being grateful for each day given and thankful for each day starting to feel better. I will keep you in my thoughts and prayers and wish for blessings for you.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi Christine or anyone who can answer this,
Today is exactly 2 weeks from my surgery and overall I am feeling pretty good, and much better than I had anticipated. Have a couple of questions though...1 is it seems like over the past few days I have had a lot more saliva than before and was wondering if this was normal? Also starting to have like a pins and needles feeling in my tongue at times. And my other question is where my doctor did the neck dissection and the stitches are it feels really tight. Was just wondering how long that would last. Am able to eat and drink somewhat normal but not trying anything too crazy yet. I have a consultation with the radiologist oncologist next Friday so will see what he says then. In the meantime hanging in there taking it one day at a time and feeling very blessed and grateful. My daughter graduated from UNLV on Saturday and I was able to attend and enjoy her special day she had worked so hard for.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Likes: 6
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Hi Camille! It sounds like you are doing great with your recovery! Congrats to your daughter with graduating!!!! Congrats to you the proud momma who worked so hard to well enough to attend smile

I think the things you are noticing may be from your swelling receding. Of course, we arent doctors but over the years we have learned a thing or two about this disease. It can take a very long time for inflammation to completely disappear but usually most patients have most of their swelling dissipate in about the first 2 or 3 weeks post op. I also think the tightness of your neck dissection is partially the swelling going down and part of the healing process. I would suggest seeking out a physical therapist to help you do some very light stretching exercises to help with your range of motion. Most patients who have done a neck dissection will talk about their neck being stiff or too tight which is why PT is needed. The earlier you get started on PT, the better results you will have. The pins and needles are the nerves starting to work again where the swelling is going down. All the things you mentioned sound like they're part of the healing process to me.

Best wishes with your continued improvements in your recovery.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi Christine,
Thank you for being so kind and taking the time to respond to my questions, and yes you were absolutely right...I was one proud Mama to watch my daughter walk across that stage on Saturday because I remember the fear I wouldn't be there back in March when I was diagnosed. I am going to get in touch with physical therapy and take your advice and get that started. I have been doing at home on my own this arm lifts my doctor advised me to do to keep from getting frozen shoulder, which I had never even heard of, but think I need more because like I said my neck feels really tight in one area especially when I get up in the morning. I am happy to say though I have not had to take any of my pain meds in a week now, only Advil every once in a while. I have my appointment next Friday with the radiation oncologist so will see what he says. Again, thank you so much for all your kindness shown and hope you have a wonderful day.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi everyone,
I had my appointment last Friday with the radiation oncologist and got great news. I don't have to have any radiation! I feel so very lucky. I had about a 50 minute consultation and he went over everything in great detail, and concluded that the negative effects of radiation far outweighed the need for it looking at all my results at this time. He said the cancer was removed completely from my tongue with clear borders and the 1 lymph node in my neck with the cancer was very small...less than 1 centimeter. The other 33 nodes removed were all negative and he said my surgeon got extra large clear borders in my neck. I will now be followed every 3 months and will definitely get myself in right away if I notice the least little thing.
It has now been 4 weeks since my surgery and I am feeling pretty much back to normal and eating normally again. My neck is getting better and the glue is finally starting to come off so the tightness isn't as bad as before. Still have a lot of excess saliva, but feel i don't have anything to complain about. My thoughts are with everyone here that you will all be healing quickly and have many good days ahead.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
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Likes: 6
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Hi Camille!

Thats excellent news!!! You are very fortunate to have gone thru surgery so successfully that you do not need rads. Sounds like you are just about recovered in only a month. Now thats fast healing! Wishing you all the very best with your continued recovery and many happy, healthy days ahead smile

Be well!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Oct 2012
Posts: 1,275
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That's great news!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Camille Offline OP
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Hi all,
I'm hoping Christine or someone here could be so kind to answer a question I have. I had my surgery and neck dissection on May 3rd, and have actually been feeling better than I
ever expected to. I feel very lucky that within the first month I was pretty much back to eating normally...and now probably more than I need to! My question is for the first month following surgery the whole right side of my head (ear, jaw, neck, etc..) felt really numb. Now it is different...it just feels really tender when I press on that area. My neck is healing up really nicely, however it feels really tight at times on part of the incision area. Is this something I should be concerned about? I have my 3 month check up appointment with my surgeon on August 4th. Thank you so much for any advice anyone can offer and have a blessed day.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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That's great, I'm so happy for you!

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Hi Camille! Glad to hear you are doing so well!!!

Numbness and tightness can be from many different things. Usually its from inflammation that over time gets a little better or it could subside completely and goes away. Other times its caused by something that was done during surgery. There could be something now pressing on a nerve that hadnt been that way before. It could be any number of things, most of which are no big deal. To be honest, you could have some numbness permanently, or it could slowly go away. Believe it or not, even at over 2 months post surgery, you still have some swelling. The body takes a full year to bounce back and adjust itself after a major surgery. Theres all kinds of teeny tiny blood vessels that were cut and reconnected during surgery. Id definitely ask the doc at your next appointment in August. What I mostly see patients with this type of surgery saying are that their tongue now seems too big and is awkward. If you havent already, you should seek out a speech pathologist to help you learn how to better adjust to your new tongue. They can make a huge difference even in patients who seem to have been doing well with their adjusting. At least give it a try. you have nothing to lose.

Best wishes with your continued recovery smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi Christine,
Thank you so much for your kindness in taking the time to respond to my post and question. Today is 11 weeks since my surgery and I am just taking it day by day and feeling very blessed and grateful for each day given. I will admit some days I do get scared reading some of the posts on here ,and thinking about all the stories I read of all the wonderful people like yourself and others on here that have had to deal with this horrible disease coming back. I just try to stay positive and just take it one day at a time. I tell myself ,,,listen you were diagnosed with melanoma in 1986 and are still going! I work in the special education classroom at a high school so have been off all summer. Looking forward to going back to work to have more to occupy my mind than stress! I have not seen a speech pathologist but my husband says my speech is totally normal. however some days it seems a little mushy to me on certain words. Of course I have a really southern accent so he says that makes it worse lol. I have been doing the exercises the surgeon asked me too and i think I have a touch of the frozen shoulder he warned me about. Other than that I feel wonderful and very blessed.
I had lost around 18 lbs. from Jan. when I first discovered the spot on my tongue till around May right after my surgery but have now put back on around 6 or 7 lbs. so eating is not a problem for me at all! Another reason I am looking forward to getting back to work. I will definitely mention to my doctor on the 4th the tenderness in my incision area and see what he says. It's weird because one side of my neck where the incision goes is totally normal feeling but on the right side where the cancer and 1 bad lymph node was is the area that feels very tender to touch, however the swelling gets better every day so hopefully it just needs time. Anyway thank you so much for your kindness shown and I hope you have a wonderful weekend coming up soon.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi everyone,
I have a question hopefully Christine or someone here can answer. I had my tongue surgery and neck dissection on May 3, and the 4th of August had my 3 month check-up. My surgeon said I am doing excellent and coming along very good. where previously the whole right side of my head, including my ear was numb and felt very weird, now the feeling has returned to it. It now feels a little sore and especially at night as I like to sleep on that side, I have noticed over the last several days my head hurts on that side and also my ear every so often. It seems to ease up once I get up out of bed. Just wondering if this could be the nerves in that area coming back. Like I said I just saw my surgeon on the 4th who examined me thoroughly and said all looked great. don't want to run back to the doctor if this is normal and to be expected, but also don't want to let it go if this is not normal. Thank you all so much for any info anyone can offer. In the meantime will go take some Advil.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Camille, Im one who always errs on the side of caution. I would advise you to call your doc and get checked again. Thats what the doc is there for. It cant hurt to be overly cautious but delaying if it would be something serious could cause more issues. Swelling can take months to resolve itself so even 6 months later patients can notice differences. Hopefully it turns out to be nothing serious. Please keep us posted.

When in doubt... check it out smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi everyone,
I would like to ask if you could all keep me in your prayers. I have a appointment Thursday with my surgeon to see what this constant pain in my head and ear is. I am so scared and stressing myself out that it is the cancer returned. I am trying to stay positive but being in pain and not being able to sleep at night has wore me down, and of course my mind and emotions are racing. It has only been a little over 3 months since my surgery so am praying it is just something related to that. I will appreciate any prayers and positive thoughts that can be said for me. Thank you all so much for all your kindness shown from this wonderful group and as always you are all always in my prayers.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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I had my appointment with my surgeon last Thursday. He is scheduling me for another PET scan, which he says he normally does 3-4 months after surgery. I am still having some ear pain every once in a while and some head pain during the day. He said everything looked and felt normal as far as he could see and my neck dissection is healing up nicely and my tongue looks great. He thinks the pain might be my nerves regenerating where previously that whole side of my head was numb. I am praying that is all it is but right now stressing waiting on the call to tell me when the PET scan will be.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi all,
I finally heard back from my surgeon and my PET scan is scheduled for a week from Friday on September 22. I am still having the intermittent head, ear, and every once in a while jaw and throat pain. I am praying this is just my nerves coming back after my surgery since that whole area was numb till about a month ago, but am really scared that the cancer has come back or that the cancer is now in my nerves. If you would keep me in your prayers I would very much appreciate it. I am trying to stay positive. I will admit though that some days are harder than others and the pain and fear overwhelm me.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi everyone,
I had my PET scan last Friday and as of today have still not heard from my doctor on the results. Hopefully I hear something soon, as I am stressing myself out so very bad. My next check-up is not till November. I am still having the intermittent ear, head, and jaw pain so of course this is adding to my stress level. Praying I get good news soon.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Hang in there, Camille. Its not unusual to have PET results take several days. After the test a pathologist needs to read it before its sent to your physician. Hoping for the best news possible. Keep us posted.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi Christine,
Thank you so much for answering to my post and for your encouraging words. I am trying not to stress, as hard as it is and trying to stay positive. Hopefully I hear something soon. Have a wonderful day!
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Got my PET scan results back today. The cancer is back only 5 months after my surgery. I am at my lowest tonight, and feel so defeated.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Im so very sorry!!!! Ive been there and know how horrible you must feel. Please do your best to think positively. Remember... The cancer has been found very early, you have your medical team, and now you have us here to lean on. You can do this!!!

So far you have only been treated with surgery,. That means you have all treatment options available to get every single cell this time around.

I know this must be devastating news , its ok to lean on us. We'll get you thru this you as much as possible to get thru this.

((((HUGS))))


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Oct 2008
Posts: 246
Likes: 1
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Camille, I'm sorry to read that the news was not better and that you had to post this...

I hope that we can help you here on this forum. There really is much hope as you have not already had radiation, but it's difficult to hear when you've been told that further treatment was unnecessary. Perhaps allowing yourself a few days of sorrow before getting back into a fighting frame of mind might be one approach to regain some control.

Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Camille,

I'm sorry for any concerns with the PET scan. Have they done a biopsy? As you know, or don't, no scan can prove cancer 100%, only a biopsy can. I've been in your shoes dozens of times, and scans light up (SUV) like a Christmas tree, and are highly sensitive, for the good and bad, especially post treatment, in your case surgery when there can be false positives. Even still, it's not uncommon for patients to be treated further, and many here were, including myself.

Curious as to the area of concern on the PET scan, and the doctors thoughts, and plan moving forward?



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Posts: 39
Camille Offline OP
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Hi Lottie,
Thank you for taking the time to respond to my post and your very kind words. I have definitely met and had some very kind and comforting words from others such as yourself on here. I am trying to stay positive, and I think I have exhausted all my tears for the time being. Will definitely keep you also in my thoughts and prayers.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Update on my situation
Well yesterday I saw my surgeon who went over the results of my PET scan with my husband and I. He also put the scope in my nose and down my throat. It appears I have a new tumor at the back of my tongue. My surgeon is so bewildered by this as once again he stated he had such good clear very large margins and the pathology report after my surgery also confirmed this. At my PET scan prior to my surgery absolutely nothing showed up at all in that area of my tongue. So now I am scheduled for a biopsy on October 21 to see if this tumor is from some microscopic cells that may have broken away from the original tumor at the front of my tongue, or if I am just unlucky enough to get a 2nd different tumor only 5 months after my surgery. He said he doesn't want to do surgery on this tumor due to the location and the fact I would lose most of my tongue, have swallowing and eating issues, plus talking issues. He said this kind responds well to radiation and chemo so that is the plan. I will also have a port for my chemo and a feeding tube put in while I am out from the biopsy,
I left there and went to meet with the radiation oncologist where they fitted me for a mask. It wasn't pleasant but not as bad as I had imagined. The worse part for me was having to bite down on that wax thing in my mouth for so long as my tongue is so sore. The radiation doctor went over everything but I was so overwhelmed not sure I even heard it all. Thank goodness my husband was there to hear it. I then left there and they had squeezed me in at my primary doctor because I had to go there for bloodwork, and a EKG to be medically cleared for the biopsy. Then it was next to the radiology place to have a chest x-ray for the clearance.It was such a exhausting day and by the time we got home last night I was mentally and physically exhausted. We have to go to Las Vegas for our doctors as there are none where we live, and that is a 207 mile trip each way which makes for a very long day. On the ride home last night i kept feeling like I am in a nightmare I can't wake up from. Right now i am just feeling so down and overwhelmed. Can anyone here be kind enough to tell me what I can expect with this chemo and radiation? I just have so many questions that I have no clue about, and was not thinking straight enough yesterday to ask them. On a positive note my surgeon did give me some pain pills for this excruiating pain I have been having. he said the tumor is pressing on nerves and that's why the ear, jaw, head and throat pain. If anyone here could tell me what to expect, it will be so appreciated. My daughter wants to know if i will lose my hair, and i just want to know everything.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi Paul,
I appreciate you taking the time to respond to me. The area of concern on my PET scan says as follows: There is a interval increase in hypermetabolic activity involving the right posterior molar trigone region extending into the adjacent floor of the mouth and right base of tongue. Then it compares the size of a right level 2 neck node from my previous scan in April . Under impression it says there is interval worsening of active malignancy in the right neck as described as well as bilateral neck nodes. I am just having a hard time wrapping my head around how it is back only 5 months after my surgery and neck dissection. I have never smoked a day in my life, nor used tobacco products, don't drink, and was negative for HPV. Anyway, thank you so much for your kind thoughts and words.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Camille,

I’m so sorry about the bad news. You did not say what kind of chemo you’ll be getting, but if it’s Cisplatin, you may have slightly thinner hair, but you won’t have any dramatic loss of hair. As for radiation, you may find that the hair and the back of the neck, where the radiation enters the head, you will lose some hair or some thinning. It will slowly grow back but it is hardly noticeable. Do you know if it is cancer at the back of your oral tongue or is it at the base of the tongue? My husband had the second type and he did not have surgery. It’s just too difficult to get to the cancer.

ChristineB mentioned before that there are Hope Lodges for cancer patients near certain major CCC’s. If there’s one at your hospital, you can consider staying there and it will save you the two hundred mile ride for treatment. If there isn’t a Hope Lodge, then find out if there are medical rates at the hotels near to the hospital. They usually offer a substantial discount.

I can fully understand how you’re feeling. My husband finished radiation in January and in August he was told the cancer had metastasized. We were in shock. My husband simply would not believe it. He was offered a clinical trial and from that point on, it was taking it a day at a time for him and me. That I have found was a helpful state of mind to be in.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Camille, thank you for getting back. Not going across the grain, but I'm still holdinh onto some hope that it's treatment inflammatory response or at least not as severe as it appears on scan, A recurrence, or thought of a recurrence, is worst than the initial cancer, in my opinion, because of lesser treatment possibles we've been told or read, but that's not always true as others, invkifong myself, have had multiple recurrences and can prove that it's possible in select patients.

You'll get all the help you may need right here, minus your healthcare and caretakers, so you won't feel alone going through this. Whatever question you have, just ask and we'll try to answer as to what our experience ease or at least point you in the right direction for help.

Take care,
Psul


,


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Camille, thanks for elaborating on your info! An estimated 5-10% of all OC patients are those with no known risk factors (not HPV and/or no tobacco usage). Im sure that must be very troubling not knowing what caused your illness. Theres a million and one things that could be behind why one person gets this horrible disease while someone very similar does not. Treatment is mostly the same regardless of the cause. Most important right now is getting rid of the cancer. You do have many options available with surgery and/or rads with or without chemo. Best thing you can do is push to get appointments in the very best medical facilities you can get to, get your treatment plan and get started on becoming cancer free ASAP.

We're here for you to lean on. Wishing you all the best!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Gloria,
Thank you for responding to my post. I don't know yet what kind of chemo I will be getting. I have a appointment on the 16th with the chemo doctor and he will go over all that then I imagine. My surgeon said this tumor is on the back of my tongue, and the biopsy will tell if it is from the original or a whole different one. I am trying to stay positive but still having a hard time wrapping my head around another cancer only 5 months after my surgery. thank you so much for your words of encouragement.

Paul,
Your kind words mean so much to me, and I am holding out hope that this tumor will turn out to be benign when they do the biopsy. Thank goodness my surgeon gave me some pain meds, as this was the first weekend in a while I was actually able to have some relief from the constant pain. I actually feel quite normal today for the first time in over a month or so. If you have the time can you please tell me what to expect from the radiation and chemo? I am trying to prepare myself mentally.
Again, thank you for your kindness shown.


Christine,
I appreciate so much you always taking the time to respond to my post. Right now I am overwhelmed and just don't know what to expect for what lies ahead. If you could give me any info on what to expect on this journey, I would be very grateful.

Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jul 2012
Posts: 3,267
Likes: 1
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Camille,

I'm sorry for your pain, which I didn't know you had, and may have been an indication something was out of the ordinary that may have prompted your care.

What type of biopsy do they plan on doing, extent of surgery, if it's a surgical biopsy as the back throat, oropharynx is difficult to get at with a fine needle biopsy?

Surgery is usually the preferred treatment for a recurrence, minus or plus radiation or chemoradiation, which surgery was not mentioned? Sometimes the location of tumor, tumor burden makes it inoperable, but still does not mean incurable. Sometimes they do induction chemo to shrink a tumor, and do surgery. There may be many options available, including clinical trials.

Radiation side effects can be acute, less than 3 months, and long term, lasting longer than 3 months, and vary based on the type of radiation, if used with chemoradition, the dosage with Grays, the frequency in fractions, prior radiation, prior surgery, age, health status and other cornorbities. Chemo basically can have the same side effects, but are usually acute.

I assume it's squamous cell carcinoma? Usually the preferred chemo is Cisplatin, but others are used if the patient can't have this due to hearing, kidney issues etc

There is plenty to go over, and don't want to bombard you with any listings, so here is treatment page from OCF, which you can review the different sections when you get a chance for an overview, and we can go over.

Besides myself, many here have plenty of experience, such as Christine, Gloria to name a few. As for myself, I had about 21 different type cancer treatments between surgery, chemo, radiation and others, so there's not much we can't help you with!

Christine has important information on nutrition and hydration that she usually provides.

Main OCF site, Treatments


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi Paul,
I don't know if you have gone back and real my posts from the start ( which details my whole journey so far), but yes I was originally diagnosed with squamous cell carcinoma of the tongue. I don't know what kind of biopsy will be done on the 21st, as I was so overwhelmed that day, not sure what I heard.I know my surgeon said it will be done in the hospital as a outpatient procedure. This is also when the other surgeon will insert the port for the chemo and the PEG tube. I am really dreading the feeding tube and wondering if it is an absolute necessity that I have to have it. I really thought I had made it out of the dark place I was in after the surgery and neck dissection when I was told I didn't need any chemo or rads. I think that and the fact that it was all only 5 months ago, is what makes it so hard for me to wrap my head around. I appreciate very much you always taking the time to respond and answer my questions and thank you also for your kind thoughts and concern. Today has been a really difficult day. I work as a Para-Professional for a High School and only work 6.5 hours per day. I called our lady in charge of our insurance to inquire if I am eligible for FMLA only to be told I don't qualify because I have only worked 1170 hours in the last 12 months, and not the required 1250. ( have the summer months off.) She said I can take a leave of absence from my job, but if I do I lose my health insurance. Needless to say right now I feel like I just keep getting knocked down at every turn. Trying to stay positive, but if I have no insurance I know I can't afford the radiation. I could do the chemo if it's only 1 day a week and still continue to work the other 4 days of the week. Just don't know where to turn to right now.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Camille, Im sure you are not the first person in your location who has gone thru a serious medical issue. Try to think of others who have had major health problems over the past couple years and talk with them on how best to handle your HR. As a former union rep, our members were always told NOT to share their health conditions with the company (management), to keep it private to avoid bigger issues down the road.

Hope this helps you!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi Christine,
I am a little confused. Should I not have told my insurance rep my diagnosis and inquired about using FMLA if possible? I know I will have to be off work for 7 weeks, so knew I would have to let them know as I have exhausted all my sick leave from my previous tests and surgeries 5 months ago. I hope I haven't done something wrong.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Dont worry... you're ok!!! I suggested trying to think of others who had serious illnesses and talking with them about ideas to help get your absence ok'd. Im certain you arent the only one who went thru something where you needed long periods of time off. There's got to be others who went thru the same thing. If you are a union member, try talking with your union rep.

I was fortunate when I went thru OC for 3 consecutive years... I was eligible for FMLA and I had 3 months of fully paid sick time. Things have changed since that time and no longer would I have been able to take the time off I needed.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2012
Posts: 3,267
Likes: 1
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Hi Camille,

I just spent an hour writing a response and lost it because I let my iPad battery run out. Hope I remember what I was saying...

I read your posts and responses from the start. I understudied you're having a biopsy under anesthesia, probably an endoscopy, often an pandendoscopy or triple scope to check the upper aero digestive tract for any possible malignancies to be biopsied.

I liked the peg tube so much I had two lol. I didn't have my port or peg tube put in during the surgical biopsies, but on later dates. I had the 2nd one for 5 years, which I used intermittently during other treatments and surgeries. No, it may not be necessary, especially these days when they're pushing patients to maintain their swallowing during treatment, but your surgeons may feel your swallowing, weight, may be already compromised from surgery, pain, and soon Chemoradiation, that it may be necessary in your case. The problem with having one put in when needed during treatment is the risk of infection, which is not good, but they could put in a nasal tube, which is usually meant for use 6 weeks or less. Personally, I'd rather have a peg tube.

I'm sorry to hear about your work/insurance issue. It seems like you're 40 hours short in the past 12 months. I don't know when you're treatment is going to start, but sounds soon being your mask was made, and CT simulation is usually done at the same time, but my experience was it started about 2 weeks later after a treatment plan is made. Chemo can be started a few days after meeting the oncologist, having orientation, blood work, and sometimes that's started before radiation if there is a delay, and to sensitize the tumors for radiation. Some breeze through treatment, and continue working, and others may have a difficult time. It's all dependent on a number if factors, as each treatment is individualized, and toxicities may be depended in a number of other factors, including type, areas, dosage, frequency, etc. The effects of radiation are usually felt after the 2nd week or 10th day, but can be sooner. Chemo side effects may be felt 2-3 days after infusion, but depends on the type of chemo.

It sounds like the cat is out of the bag so to speak for your reason for FMLA. It's been a while for me, but you may not even need to give full details for the absence for a serious health condition. Is it possible to take sick days, vacation intermittent FMLA in hours, days, etc, which they may to accommodate you under ADA as long as its not an undue hardship for them, thus maintaining your insurance coverage or hold out as long as you can until you reach the 1250 hrs in a 12 month period, and hopefully they have 50 employees, in a 75 mile radius to be covered under FMLA, but your health is most important.

What about short term medical leave? Some places may still cover health insurance during that time. If you don't qualify for FMLA I think you may be eligible for COBRA. You would have to pay the full premium, plus an administrative fee. If you had dental while employed, you'll be entitled to dental too, as long as similar type employees still have it. I called the U.S. department of labor twice after I was employed, and they open a case number and try to rectify the situation. ACS, and other cancer hospitals may offer free legal advise.

Many hospitals and cancer centers, like non profit, offer medical assistance or grants. They may even help with Medicaid, SSDI or SSI during treatment and beyond.

A concern of mine is the distance you may need to travel for treatment? As mentioned, ACS have Hopes Lodges, which I've stayed at in NYC during one of me treatments for 6 weeks free! They were the best, and better than most hotels charging hundred of dollars a day. There is Harrah's Hope Lodge, possibly others, and ACS often gives vouchers to areas where there are no hope lodges. Many hospitals have their own housing or area hotel discounts.

I didn't see if you had dental clearance? This is a must! Any teeth that can be salvaged should, if not, extracted, to prevent any issues during treatment. If any are extracted, there should be a 3 week healing time, minimum 2, to helper bet Osteoradionecrosis in the future. I believe the dentist makes mouth guards to hemp prevent radiation scatter from any metal fillings to help reduce mococitis. They also make dental trays, so you can use with with prescription fluoride to help prevent Carries or at least paint the fluoride on. The radiologist may make a latex tongue depressor to help prevent swallowing during radiation, which I had none of these, and,had major complications later on.

I better post this before I lose it again.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jul 2012
Posts: 3,267
Likes: 1
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I'm back lol.

Just a suggestion, is to start your own recordkeeping. I keep copies of all my bloodwork, tests reports, surgical reports, pathology reports and cd copies of scans for my records, and do come in handy with other doctors I visit. My other doctors often picked a concern that was not previously addressed.

Many hospitals have patient portals on apps or internet where you can get some reports, but not all, and it's a step in the right direction for patients. Quest Labs, where I have my blood work send to copies of the bloodwork to my app. I think most labs have to follow some extent of this law enacted several years ago for most states. Many did before, but NY was one of the last holdouts.

Knowledge is power, and enable you to better advocate for yourself


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Apr 2017
Posts: 39
Camille Offline OP
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Joined: Apr 2017
Posts: 39
Paul,
Thank you so much for taking the time to respond to my questions and give me so much info. I am still just so overwhelmed by all this but trying to just keep putting one foot in front of the other and make it through another day. I have a appointment this Monday with the chemo doctor so imagine I will find out a lot more then. Some of this is so confusing, as last week when I saw the radiation oncologist and my husband inquired about would I need teeth removed prior to starting the radiation, he said no he wouldn't advise it, not at this time. He said down the road if the need arose, then we would cross that bridge. It seems like every doctor I talk to has a differing opinion, and I don't know what to do. Have a wonderful day, and again thank you so much for all your help and kindness.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
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Camille, if you are going to be doing rads and have any teeth that may need pulling, you may want to do it before doing rads. Doing so afterwards could create problems down the road with osteoradionecrosis. But theres also the healing time to consider. Normally rads begins at least 6 weeks after having teeth pulled. This could delay your treatments which could allow the tumor to grow for 6+ more weeks. Plus down the road you probably would need to do 20 hyperbaric oxygen treatments beofre the tooth extraction and 10 more afterwards (Marx Protocol). HBO is where the patient lays in a glass cylinder breathing pure pressurized oxygen.

If you are able to go to one of the countries top comprehensive cancer centers (CCC's) you would have a team based approach. This would eliminate all the different opinions and running around from one doc to the next. The CCC's team based approach mean all the professionals are working together as a team. They meet and discuss each case individually. Patients and their caregivers can sit in on the team meeting. CCC's have many benefits besides their tumor board meetings, they have been proven to give patients the best chance of beating their cancer. I think I gave you the link for CCC's a while back. Please consider going to one.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 3,267
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I know, it can be overwhelming. Eventually everything will fall into place.

As far as all your teeth being removed, that's not done automatically anymore. It depends on the condition of your teeth, and gums, and if compromised can they be repaired or then extracted. Before my initial radiation I had one extraction, one root canal and filling. During and after radiation utmost oral care is needed, including prescription fluoride for life.

On another note, after treatment, dental care is not covered such as the case with Medicare. Before treatment, if any dental work needed to have treatment is covered.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Camille Offline OP
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Christine,
I am being treated at the Comprehensive Cancer Center in Las Vegas. Is this what you were referring to, because the link does not work?
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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There are many CCC's. The top CCCs that come to mind are MD Anderson, Moffitt, Sloan Kettering, Johns Hopkins. Im not familiar with a CCC in or near Vegas. Sometimes it gets confusing trying to tell the difference between facilities. Are they using a team based approach where all the professionals work together as a team to create a treatment plan? Maybe your treatment facility is a cancer center instead of a CCC? At OCF, we value our members privacy and since we arent in the physician/facility referral/feedback biz, dont feel you need to tell us where you are being treated thats your private business.

I'll fix the link and add it below. Im very sorry it didnt work!


NCI Designated Cancer Centers, search by state or map



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Oct 2012
Posts: 1,275
Likes: 7
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If you are with a CCC, it’s worth finding out if there is a dental department. The dentists there specialist in cancer patients and their difficulties with teeth, mouth opening etc. they can also consult with your regular general dentist if necessary.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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I hate to add to your confusion and debated whether to post, but feel I must comment about the rad oncologist's response to your husband about dental questions. It is correct that teeth are no longer routinely removed prior to rad therapy. However, saying it can be taken care of down the road is not good advice (unless delaying rad therapy is inadvisable.) However, I do not see that that reason was given. Any dental restoration that can be done prior to treatment should be considered. It's not just extractions as Paul explained.

Were you not advised to have a comprehensive dental evaluation with teeth mapping and fluoride trays made? Only then can an educated decision be made about any dental problems. It's important to see a dentist knowledgable about oral cancer, which is difficult outside of a CCC. It's overwhelming, I know and sorry you have to deal with this.



CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Posts: 39
Camille Offline OP
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Hi all,
Well I had my appointment on Monday with my surgeon and he went over the biopsy he will do this Saturday. I also met with the surgeon who will do my port for the chemo and my PEG tube at the same time while I am out for the biopsy. I keep having conflicting feelings on this PEG tube. Part of me thinks I don't need it and I am really dreading it, and then part of me says maybe it's for the best. I just don't know what to do, but know the thought of it really scares me. Can anyone here that has had one be so kind as to enlighten me what it is like? I also met with the oncologist who will do my chemo and he said it will be once a week for 7 weeks. He said he could go once every 3 weeks but that is very brutal and he doesn't think I would tolerate that well. He is supposed to talk to the radiation oncologist and give me a date they will start all this. I think reality has really set in now, and it feels like I am in a nightmare I can't wake up from. Just having a really down day, but keep telling myself it will get better.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Wow, you have done alot! Im glad to see you will do weekly chemo instead of the 3"big bag" method. Smaller weekly doses are so much easier to tolerate.

Often cancer patients feel so overwhelmed and like they do not have any choices regarding their treatments. When they get the opportunity to make a decision they will usually say no. This is all too true when it comes to feeding tubes. I too thought it would be awful to have one but that quickly changed when I started having problems eating and was dropping weight so fast my nurses started weighing me daily. Its better to have one and not need it than to need one and have to wait a couple weeks to get one. Your sense of taste will change and you will probably have a very sore throat making swallowing a challenge. You could have these issues for many weeks making eating and drinking pretty difficult. Im very pro-tube. After watching hundreds of patients over the years go thru rads, its pretty rare someone gets a feeding tube and doesnt use it. On the other hand Ive seen too many suffer thru not being able to eat or drink very well and drop significant weight only to end up getting an emergency feeding tube. Its better to have it than to end up struggling and waiting to get one. I also suggest eating all your favorite foods now so you dont go into your treatments having any cravings.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Christine,
Thank you for answering my question. I know the PEG tube will be for the best, as right now I am having a hard time eating anything. My tongue is so sore and in constant pain, if I try to chew anything. I just tried to eat some pudding for lunch and couldn't even manage more than a few bites of that because of the pain. My ear and jaw are still aching also, so eating anything is just too painful right now. I have lost 4 pounds since last week, so know that's probably not good. Guess I will see what I find out from my biopsy on Saturday and then find out when my treatments will start. My chemo oncologist gave me a prescription for Magic Mouthwash and i tried that last night but my tongue and throat burned so bad after that. Is that normal or is it too soon to start using that already? Thank you for all your help. I just want to get this started and done and over with.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi all,
I had my biopsy of my tongue on Saturday and my surgeon said it is another squamous cell carcinoma (this time at the back of my tongue). He thinks it broke away from the one at the front of my tongue and was too small to be detected by the PET scan I had done in April before my first surgery. I also had the PEG tube inserted along with the port for the chemo. I don't even really feel any pain or tenderness where the port is, but where the PEG is my stomach is so sore I can hardly stand it. Can anyone that has had the PEG tell me if this is normal and will this soreness subside? The surgeon showed me how to do the cans of J (forgot the name sorry) and I have been doing them as my tongue is still so sore, I am having a hard time eating anything. Not sure what happened either during all the procedures but got home from the hospital Saturday evening and my left eye is all swollen and bruised on the eyelid. Looks like I lost a boxing match lol. Anyway, looks lie I will start my chemo and radiation next week. Hope I feel somewhat better by then.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Yes, unfortunately most patients are very sore after getting their feeding tube. It does subside but the first 2-5 days most patients are in alot of pain. You never know just how much you use your abdominal muscles until you try taking it easy and not using them. I felt like I was sore for a couple days more due to moving differently and babying my abdominal muscles. Kinda like when limping the next day your entire body hurts from walking differently.

If you need any help with the feedings, let me know. Ive used a feeding tube for most of 10 years and have many little tricks to help make it easier to tolerate. For example... if you have an upset stomach after feedings, usually slowing down and adding water will solve the nausea.

You should be feeling much better by the time you begin your chemo and rads.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi Christine,
Once again, thank you so much for getting back to me so fast with my questions. I am open to any and all tips and guidance you can give me and will appreciate it very much. I know I have a long, hard, road ahead of me and the unknown is so scary. The worst part for me right now is I am so hungry and want to eat so bad, but my tongue is so sore it is not allowing me too, I am so tired of Ensure, yogurt, pudding, etc. already. I just want to be able to eat a meal so bad. The surgeon said the tumor was very ulcerated on Saturday and that is what is causing so much pain. What I wouldn't give for a big old cheeseburger right now! My stomach is still very sore today and where they put the port in is all black and blue. I look like I went 12 rounds in a fight and lost lol! Anyway, thank you for your concern, and I would really appreciate any and all advice you have time to share with me,
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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The only thing I can tell you about helping to recover from your most recent surgery is it takes time and some good strong pain meds. If your doc gave you any prescription pain meds, take them and get some relief. I remember how sore I was when I first got my feeding tube. I also had a port done at the same time. It was supposed to be outpatient but the hospital kept me as I was in so much pain.

Now is the time you should be eating as much as possible, especially all your favorite foods. You do not want to go into rads having cravings. Heres a list of foods that are easier to eat. Most are fairly mild without very many spices. I suggest at least giving some of these things a try. I originally started the list for patients who were just finishing rads and trying to relearn how to eat normally. It also works for those with very sensitive mouths. Im sure some of the foods you should be able to eat, probably not everything on the list.

Hang in there!!!

List of Easy to Eat Foods


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2017
Posts: 39
Camille Offline OP
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Hi all,
Well started my treatments yesterday. Had my first round of radiation yesterday and just got back from today's. 2 down and woo hoo only 33 more to go. The worst part of the radiation for me is having to bite down on that tongue quard as my tongue is so swollen and painful and it hurts like heck. Had my first chemo yesterday also. I am having Cisplatin once a week for 7 weeks.Can anyone here tell me what to expect with this? I did have a patient comment to me yesterday while I was sitting there getting my chemo "your hair is so pretty and thick and long. It's a shame you are going to lose it all". I appreciate so much any advice or tips anyone wants to share with me that has traveled this road as everyone here has shown me such kindness through the ones that have been so patient to answer my questions.
Camille


February 2017 saw 2 different dentist for ulcer on tongue. Was told by both it was a bite
March 10 biopsy done by oral surgeon
March 17 biopsy results are keratanizing squamous cell carcinoma
May 3 partial glossectomy and right modified radical neck dissection
May 8 post op appt. given news in surgery 34 nodes removed from neck, 1 with cancer but still encapsulated and had not spread
drainage tube out and feeling pretty good!
May 26 appt. with radiation oncologist- No rads needed
Joined: Jun 2007
Posts: 10,507
Likes: 6
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First... tomorrow you can go thank that "overly kind" stranger who told you your going to lose all your hair that they are WRONG!!! Your hair will be just fine. Cisplatin does NOT cause hair loss. Not all chemos do. All you should lose is a small circle near the back nape of your head where the radiation beam exits. I think my bald spot was about the size of a nickel. The only way it was seen is if I put my hair up or in a pony tail.

Since you are now officially into your rads w/ chemo treatments, its vitally important to make certain you hit your daily minimums of at least 2500 calories and 48-64 oz of water every single day. Water is even more important on chemo days and to be safe the day after as well. Chemo is hard on the kidneys so you want to flush that poison out of your system. I cant stress for you to focus on your intake enough. Every single day you need to make a point of hitting those minimums. If you can push to 3000 or 35000 calories every day that will only make this whole thing easier on you. I would hate to see you fall into the habit like I did of playing catch up. I wouldnt hit my minimum thinking Id make it up tomorrow... but, tomorrow never came. I quickly fell into a routine of skimping and that led to dropping significant weight and great suffering. This is why I am such a nag to everyone about their intake. I do not want to see anyone struggle and suffer like I did. Every single day your main focus should be meeting your daily minimums of calories and water intake.

As far as pain goes, make sure you relay all this to your oncologist. You do not want to suffer in pain and not say something. Being in pain is actually unhealthy for a patient, it makes everything so much more difficult than it has to be. Your doc can give you pain meds. They can also set you up to get extra hydration in the chemo lab if you are not taking in at least 48 oz of water every single day. All it takes is a prescription from your doc. Your doc can also give you a prescription for magic mouthwash which could be one of several formulas. I had lidocain, malox and benedryl which worked very well to temporarily numb my mouth. Magic mouthwash can help you eat or maybe even for the times you need to hold your mouth guard. I would ask your doc about it and if they think it would help you not be so uncomfortable holding the mouth guard during rads.

Hang in there! Take it day by day and before you know it you will be finished.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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