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Hi everyone. I don't want to get into the details, but the short version is... My husband was diagnosed with squamous cell carcinoma on his tounge in September of 2010. He has mentally and physically battled with this ever since. Upon diagnosis, surgery was performed to remove the tumor from his tongue as well as a bilateral dissection of the limphnodes in his neck. He leans more towards homeopathic resources rather than modern medicine. He has experienced several scares of possible reoccurrence over the past 5 years, yet is always in denial that he ever had cancer to begin with. I have faith in modern medicine, which is our relationships major shortfall, as we take different approaches to diagnosis, care, and treatment. Right now, I am concerned that the cancer is back... Too many details to get into here. I feel like he isn't willing to fight...I'm scared and feel so alone. How can I convince him to see a real doctor again? We are young- 36, and have young children. I'm scared that he will avoid treatment and then options will be reduced and survival rate will demisnish.


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Only modern medicine will save his life if he does have a recurrence. Unfortunately belief in homeopathy and denial are strong emotions and not easily overcome. You can tell him people here have had recurrences and are still fighting fit if a little battle scarred. I've had two. The cancer has to cut be out and usually zapped to make sure it doesn't come back again. Letting the cancer run it's natural course (because alternative treatments won't stop it) will lead to an unpleasant demise. What can you do to get him to a doctor? The only thing I can think of is to show him how deeply concerned you are. Have a meltdown, show him that you are heartbroken and beg him to go for your sake. Ask him to see a cancer counsellor of some sort.

I wish you all the best.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Welcome to OCF. Im so sorry to read of the other battles besides cancer you are having. Being in denial is a common issue with many patients especially when facing recurrences. Oral cancer is a horrible disease that is curable when found and treated. The earlier its found, the easier it is to treat. Delaying treatment only causes it to be more difficult to treat causing more side effects and a much harder road for the patient.

The only way that has been scientifically proven to eliminate oral cancer is thru surgery and radiation with or without chemo. Nothing else will get rid of the cancer no matter how much faith anyone has in their other "options". There isnt a single patient who wanted to go thru cancer treatments but in order to survive we all have done what was necessary. Time also plays a role in this. The longer someone pretends there is nothing wrong the more time the tumor has to grow. As a parent, ignoring the symptoms is putting the childrens futures in jeopardy. Im a single parent and almost chose to do nothing when diagnosed with my third round of cancer within 3 years. But the wonderful members of this forum helped me see the bigger picture. They helped me understand by letting nature take its course and think I could prepare my children better for my death than to try and fighting I was basically quitting before I even tried to beat it. Denial was what it really was, I didnt want to believe I was sick again. I hope your husband will wake up and see the bigger picture of what would happen to the family if he ignores the chance of having cancer again and i runs it course, ultimately taking his life. If he cant do it for himself, the least he could do for the family is to see a doctor and get a biopsy to know if he is sick and needs to get treated. Oral cancer can grow and spread quickly, especially in cases of recurrence. There are also hundreds of scam artists out there who make promises of easier ways to treat cancer with other "natural" (and usually lesser known) remedies. I dont mean to sounds harsh, so please understand I always have the best interests of each and every member in mind when I make my replies. This is a life or death situation and the longer its put off the higher the chances of not getting thru this are. There are many, many patients who sought other avenues to rid themselves of cancer only to realize too late that only conventional treatments like surgery or radiation will do the job.

I wish you and your husband all the very best with everything you are dealing with.


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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Im putting this on another post in case you would like to print the above reply.

I feel so bad for you. The situation really stinks!!!! Being a caregiver is difficult enough without having a stubborn patient. You really have your work cut out for you. Many caregivers have found that by printing out posts and leaving them laying someplace where the stubborn patient can "accidently" find them has worked. This way its not a battle, the printed posts will do the work for you and hopefully get your husband to seek out treatment instead of doing nothing and ignoring the situation. Ive seen this trick work many times with patients who were being stubborn.

Ive seen patients who have been in denial for months then to go for some type of alternative treatments. Unfortunately those patients realized when it was too late that the cancer can only be treated by the conventional methods. I hope your husband will understand that being in denial can be seen as being very selfish and in the end its harming everyone close to him.

As a caregiver, you have a hard job. Be kind to yourself. You have your hands full. Stop back often and know we are always here for you to lean on.

Good luck with everything!


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: 1,024
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Boy, this is a terrible situation for you.
Your Husband needs to realise that alternative Medicine just won't cure a cancer.
If mine had behaved like this, I would have been furious with him and would have let fly. How dare he be so selfish. He has a wife who loves and wants him and young children who need him to be here to parent them. Keep stating that to him.
Does he want to see his children grow up? How difficult does he want your life to be?
I would also make sure he knows that untreated oral cancer leads to an awful death, a horrible death.
When my husband was told that he would need to have his entire tongue and his voice box removed to save his life, well, he initially refused. He asked how long his life would be without treatment. He was told less than a year. Fortunately the surgeons also told him he would die an awful miserable death. I then spent some time talking to him. Reminding him of all the good things in life, all the good things to live for. To see our sons all grown and married. Eventually to be a grandparent and all the joys that go with that. How different , difficult and lonely my life would be without him. It took less than 5 minutes to change his mind. This was also a recurrence and he had stated after his previous radiation and chemo that he would not do that again.
You need to really talk with your Husband. Pour your heart out. Cry. Be honest with your feelings. Stress how much he means to all of you. Tell him that you do not want to see him die in this terrible manner . Maybe you need to research untreated oral cancer and let him read about it. Let him see the awful pictures of huge exploding tumours, gaping holes in the face, neck etc. let him read of bleeding out from tumours that erode blood vessels such as the Carotid artery.
Graphic? You betcha. Make it so to get your point across. He needs to get this treated. Life can be and indeed does continue to be great. He needs to fight, with your support and love .
Oh, I wish you the best.
Tammy

PS; you dont yet know that he does have a recurrence. Only a biopsy and scan will tell you that.


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Thank you all for your kind, supportive and "real" responses. I was very hesitant to join this forum, and now, I am really glad I did. I have broken down, lost my cool, and expressed my extreme concern for my husbands health with him. I see now that I must continue all of these things until he finally see the bigger picture. With your suggestions, I have a few more tricks up my sleeve.

Yesterday was a very rough day. I was being the supportive wife, and tagged along to an apt with the homeopathic "dr". When we finally went back to the patent room, and in just one moment I knew I was in for the fight of my life. The "dr" prescribed a yeast cleanse, and some other herbal treatment. He also suggested a finger prick blood view for analyzing for a viral infection. HE NEVER EVEN LOOKED IN MY HUSBAND MOUTH!!!!! HELLO???? Don't you think any "professional" should at least look at the area of concern???? I then had thoughts of just giving up, and letting my husband make all the decisions himself, that we were no longer a team. Your posts have reminded me that I can't give up on him, on us, on him for our kids, and our futures. I will continue to fight, I will continue to nag, and push and push until he goes to see his actual DOCTOR. He needs a biopsy done to verify our fears of a reoccurrence or not. He has not followed the post opporative appointment and preventative care appointments since his original diagnosis, which makes things harder. At an appoinment two years ago, he was recommended to have a second surgery to assist the cell structure regrowth since things had already started changing at that time. He never went back to the doctor after that appointment. The preventative surgery was never done.

Thank you all again for your support. I needed it more than you all know. In this very scary situation, I now have the strength to continue the fight. Thank you for that. I know I'm alone in this battle with my husband, yet with your responses, I see that I am not alone in this battle of supporting my husband...THANK YOU!!!


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I'm so glad you found this great place to be! - there are so many knowledgeable, compassionate people here to give you and your husband support and information. It is so heartbreaking to see someone you love so much just giving up. When I was at that point with my son, someone told me I needed to put my "nurse from Hell hat on" and tell him what's what. So I did, I went through all the things mentioned about family, but what clinched it was the mention of his 5-year-old daughter and what would happen to her should he lose his battle against the cancer beast. That did it. So keep going . . . The sooner your husband gets a biopsy to tell for sure what is happening, the sooner you can relieve the stress of not knowing,and imagining the worst. And whatever the outcome, you can start taking active steps to do what needs to be done. Stay close to us here, and let us know what's happening. Don't forget to take care of You, too.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Im so glad you found all the responses helpful. Since your first post, you are part of our online family. We will help get you both thru this (even if your husband is stubborn). Hang in there and push him to do whats best for your whole family. Im sure this will bring conflict but if you dont make him face reality then he wont be around to have these choices to make. Thats something he must come to terms with, oral cancer is a very serious life threatening disease that will progress weather he acknowledges its existence or not. Im sure he will put up resistance to your suggestions but you must push him for his own good. Its better to have an angry husband than one who isnt here. Maybe he needs to hear that to snap him out of his fog?

Im hoping a biopsy gets done quickly so you will know what you are dealing with and can get moving on taking care of it. Even more Im hoping its not cancer so you dont have to go thru everything again.

Please keep posting, we understand and have your back.



PS... Im not aware of any herbs that have been scientifically proven to eliminate oral cancer. I agree with you that something isnt right when the doc doesnt even look at in your husbands mouth but recommends a cure. Sounds to me like this is one for Quackwatch.


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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Hi all. I have finally convinced my husband to go in for a biopsy. The apt is tomorrow. Please keep him in your thoughts and prayers tomorrow and for the next several days until the results are in. I am praying that the results are negative and all is ok.
I will update you all when I can.
Thanks again for your support!!!!!


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Hello, I have been wondering how you both were.
I'm really happy to hear that you have managed to persuade him to see a Dr and get a biopsy.Well done you.
I'm sending you heaps of positive vibes and thoughts. Please let us know the outcome.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2009
Posts: 1,406
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That's great news. I'll keep all good thoughts flowing for a negative result.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I am wondering how things went with the follow up and biopsy?


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
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Hi everyone. I am just here to give a quick update. I wish I could say that all is well, however everything is still up in the air. My husband has now been to the Dr. several times, one of which is because we have switched insurance as of January 1st 2016 and had to see a new Doctor. Luckily, the new Doctor is actually the same Doctor from 5 years ago when my husband was originally diagnosed. Anyway--- LONG STORY SHORT- an in office biopsy has not been done at any of the visits. Both Doctor's my husband has seen say that the area of concern is too large to biopsy in their office and state that the entire area must be surgically removed and biopsied during surgery. The Doctor's are also stating that the surgery needs to be done soon, (30 days) in case the cancer is back, as action will need to be taken for treatments immediately.

Well, my husband is not going to go forward with the surgery to perform the biopsy, as it is something he doesn't want to take on right now, and is too much to handle.

Thank you all for your support and kind words. Please pray for my husband, myself and our children. I will continue to fight for him...


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Im very sorry to read about your husbands refusal for surgery, I was hoping to see you write a positive update. Im sure you have your hands full with everything going on with your husband. Being a caregiver is a difficult job, even harder when the patient doesnt cooperate as much as the caregiver wants.

Which type of doctor has he seen so far? Im wondering if it is a surgeon as surgeons usually will recommend surgery is the best option. Is it possible to have another opinion at a comprehensive cancer center (CCC)? Im also wondering why your husband is refusing to have the biopsy now. Is it the size of the tumor that has changed his mind? By putting things off it only gives it the opportunity to advance further. No matter what his decision, we will be here to lean on.

Wishing you both all the very 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: Nov 2015
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Hi Christine. He has been seeing ENT's who specialize in head neck and throat cancers. We just switched over to Kaiser, so I don't know what options we would have for cancer care centers and still remain in network with our plans. Honestly, I don't think he would be open to going to anyone else anyway. When we went into the doctor on Thursday last week, I think that when the doctor began speaking about radiation as the next course of action should the results come back positive, then my husband just shut off. Denial is a very hard thing. This is by far the hardest thing I have ever had to deal with. If it was my child, I am the parent and I make he choice....this is my husband, and he is an adult, it is his body....and his choice. Very hard.
Do you know if anyone on this site is local to Colorado? Just curious... Referrals maybe... But like I said, I doubt he will be willing to see anyone else anyway.
Anxiety is now creaping up with me... But I guess that's expected.
Thanks again for being here...I appreciate it more Than you know.


Wife of a stubborn survivor
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At OCF, we all understand what you and your husband are going thru. Its ok to lean on us for support. We get you!

There are many members here from Colorado. Not all members list their location. Maybe one from your area will respond to this thread.

Best wishes with everything!


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: 18
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Thanks Christine, I hope that any Colorado contacts read this thread and comment as well. I wonder if it would be worth starting a new thread just for that... What do you suggest?



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I'm really sorry to hear your update.
Does your Husband take anti depressant medication? Just a thought.
Tammy.


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jun 2007
Posts: 10,507
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With our site having members from all over the world, finding someone from a specific area isnt easy. Even with a new thread, its a needle in a haystack. If you would find someone, they may not have the info you are looking for.

If you want to speak to someone about things you can call me. I dont have info about your specific area. But maybe your husband would want to talk with another OC patient/survivor. Often patients feel alone with their ordeal and it can easily feel overwhelming. Talking with someone who has been thru it could help your husband see the bigger picture.


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: Nov 2015
Posts: 18
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Posts: 18
Tammy, He is against everything having to do with medicine...so No, he isn't. However, if things continue, I may be the one having to take antidepressant meds- smile

Last edited by Scaredwife; 01-25-2016 03:34 PM.

Wife of a stubborn survivor
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Something clicked. I'm not sure what, and it really doesn't matter what it was. But as of yesterday, My husband has finally agreed to go through with the biopsy!!! Surgery is tomorrow AM! Positive thinking and lots of prayers for negative results!! Thank you everyone for your thoughts, prayers and personal messages. I will keep fighting for my husband, and our future. I will update the board as soon as I can.
Thank you all for being here!!!


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Good luck with everything tomorrow!


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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That's really good news. A biopsy is a must. I so hope that this is negative and you don't have to persuade him to do any more.
Keeping all my fingers crossed,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Apr 2015
Posts: 91
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Glad to read this today!! Good luck with everything! Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
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Big checkpoint to pass. Hope all goes well all worry is for not. don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Nov 2015
Posts: 18
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Joined: Nov 2015
Posts: 18
Good morning everyone, at least from where I am. The biopsy from surgery yesterday didn't give the results we wanted. The cancer is back. It was a very rough day. We are home, and he is resting. Eating is really hard, they took more of his tongue to ensure clear margins. It is amazing how much my memory has flooded back from the first surgery 5-years ago? Not sure what's next, PET scan to make sure it hasn't spread I think. I am pretty sure radiation is next on the list too, but all depends on what he's willing to do. I am sure I will be back on here a lot more now...
Thank you all for your thoughts, prayers and support.


Wife of a stubborn survivor
Scared of the unknown
Joined: Jan 2006
Posts: 756
Likes: 1
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jan 2006
Posts: 756
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Very sorry to hear the cancer is back. I had a recurrence 5 years after first surgery (also had RT). My cancer was also in my tongue. I went for multiple opinions when I had a recurrence, ended up with 2 surgeries that year, and then a 4th when I was diagnosed with dysplasia a year later, but I've been in the NED category since 2011.

As others have stated, surgery, RT, and chemo are really the only options to get rid of this cancer and I hope you and your husband's doctors are able to convince him to seek conventional treatment. Wishing you both the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
I'm sorry to hear the news nobody wants to hear. Once you get past the shock, you have a jump on getting through the next months. Having the first hand experience and support here you can get prepared to deal with the tests results, decisions. Please do stay close here. Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Mar 2014
Posts: 110
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Mar 2014
Posts: 110
Early detection will help, and it will increase your options. This is difficult and frightening, but try to stay calm, gather your resources and recommendations, and remember that many exciting things are happeining in this field.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Jan 2016
Posts: 4
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Joined: Jan 2016
Posts: 4
So sorry to hear it is back. But have hope and strength! I know it seems grim, especially for your husband. It's daunting with the pain and discomfort let alone the bills and psychological issues. But at the end of the day, if you make the simple decision you want to live, then I think the rest comes along a little easier. It sure sounds like he has a supportive wife and (I can say from experience) that's a huge help. Good luck! Sending positive vibes from North Carolina. Peace...


Matthew 44 years old
Former smoker
12/09 diag Stage IV SCC Nasopharyngeal
1/10 6 rnds cisspl/35 rad
PEG tube 6 mo
Xerostmia (permanent)/Loss of taste/smell 6 mos+
Clear PETs 2 years
Clear MRI 2 more years
12/14 HPV pos SCC left tonsil
1/14 Tonsillectomy on left + one for clr mrgns
3/14 Removal left lymph nodes
Ongoing-check ups and screening at ENT
QOL overall good. New normals, but happy to be alive and learning more everyday to overcome fear and enjoy my life and my family.

Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
You've had some disappointing news, but you are still better off than before because now you are both in this fight and and can take the steps necessary to stay in the fight mode. You don't have to figure out the whole process all at once or worry about the "what-ifs" which can be a crazy-maker. Just take each day and each step one at a time and then go on to the next. Write down any questions for your doctors or for us here. Writing things down releases them from your brain until you need to get back to them. And you know you have a whole bunch of compassionate and knowledgeable people here for support for both of you any time you check in, day or night.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Nov 2015
Posts: 18
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Joined: Nov 2015
Posts: 18
Hi everyone. I wanted to check back in with you all since it has been several weeks. A lot has happened since we last spoke/wrote smile. My husband has cycled through some of the major stages of grief...as I am sure you all are familiar with this. To make a LONG story short- he will begin radiation and chemo on Monday the 29th. I will be writing a new topic in the "medications,treatment and procedures" forum, as I (we) have questions that I hope some of you may be able to answer.

Thank you all for your thoughts, comments, prayers and just being there to listen over the past several months.


Wife of a stubborn survivor
Scared of the unknown
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