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#140243 09-19-2011 03:14 PM
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Can Anyone tell Me what this means, Biopsy result reads "Squamous Mucosa with Hyperkeratosis and features suggesting Mild-Moderate DysPlasia, Negative for invasive malignancy" My Oral Surgeon say's it's not Cancer but He is sending Me to an ENT for a second opinion. This is My first post here but I have been reading here for Months and it seems to Me that I do have Cancer and I don't want to go through all of these treatments, do I have the right to refuse any Treatments and have You known Anyone that did? Thanks so much for Your time:)

Last edited by Bean; 09-19-2011 05:37 PM. Reason: miss spelling
Bean #140244 09-19-2011 04:05 PM
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Hi Bean:
I'm sure other Forum members will join in when they see your post, but just wanted to tell you my feelings. I think dysplasia is maybe a pre-cancer condition, but NOT CANCER. The ENT can verify this. I'm confused as to why you wouldn't want treatments if you did have cancer, when the treatments could save your life. Sure, treatments aren't easy, but to me that is better than doing nothing, and getting worse to where you would really suffer. You certainly do not have to take any treatments, but I've yet to meet anyone who refused a chance to live. I'm glad you came to this Forum because others will join in, I'm sure, to help you with your problem.
A Forum Friend,
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
Bean #140245 09-19-2011 04:16 PM
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"Dysplasia" basically means abnormal tissue -- but NOT malignant.

Here's how Brian Hill, the founder of OCF, responded to my initial question about dysplasia more than five years ago:

[quote=Brian Hill]Dysplasia are those cells which are no longer normal, but they are not really malignant yet ... an in-between state, so to speak. Dysplasias also do not always go completely over to the dark side, but they are a step in that direction ... and having them removed, or watched very regularly, is prudent. Dysplastic leukoplakias can often return after surgical removal, many times done with a laser, sometimes via a blade excision. Keep an eye on things even after the removal from now until forever.
[/quote]
As you can see from my signature, my husband had a leukoplakia (a white patch) that was initially diagnosed as moderate dysplasia. The pathology report warned of a possible "skip effect" -- meaning that there could be cancer in areas that were not part of the biopsy. (I suspect that the pathologist saw something suspicious but not definitive and wanted to sound an alert.)

By the time my husband had an excisional biopsy by an ENT a month later to remove the whole area of concern (the initial biopsy, by an oral surgeon, had just taken a tiny part), it had turned to the "dark side," as Brian put it -- but many dysplasias do not become malignant. And it was caught at the very earliest stage -- carcinoma in situ.

The excisional biopsy was the only treatment my husband had. Once cancer was diagnosed, he was seen by an ENT at a top-ranked comprehensive cancer center. Gradually the interval between appointments stretched out; he's now checked by the cancer doc once a year (and his dentist does regular VELscope exams when he goes for cleanings).

It's a good idea to have follow-up with an ENT. Ideally you want one who has experience in treating oral cancers and could recognize if a problem develops. The important thing is to, as Brian said, keep an eye on things even after the removal from now until forever.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Bean #140246 09-19-2011 04:25 PM
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Hi Bean,

Since you still suspect you have oral cancer, a good idea is to have your biopsy slides reviewed by experts in cancer diagnosis/treatment/research. I suggest getting a second opinion from a National Cancer Institute-approved Comprehensive Cancer Center or NCI Cancer Center. There is a list of them on the OCF website.

An ENT is not qualified to make a diagnosis of what appears on the cellular level--that is the domain of pathologists. And, even pathologists at local, community or regional hospitals are not always aware of nuances with SCC HN. However, an ENT will probably scope you, do a visual exam and palpate your neck, and look at your scans and reports (if any have been done) as well as pathology reports to see if there is reason to suspect you have cancer. If you have a precancerous condition, the ENT would give an opinion on what he or she thinks is the best course of action.

Again, a second opinion from a CCC would be your best bet for getting reliable information about diagnosis as well as treatment options for cancer or for a precancerous condition. A CCC may confirm what you were told by your oral surgeon and/or regional pathologist. There are standards of care in the industry. But, you will want to have professionals who see more oral cancer cases than the average local cancer treatment facility. Their experience goes a long way in being more precise in diagnosing and treating cancer.

If you are diagnosed with cancer, and treatment is available, please reconsider your position about refusing treatment. It is an awful and painfully torturous disease when left to progress without intervention aside from attempted pain relief. Many people here, through either observation or anecdote, will attest to it being a horrendous way to die.

From what I glean from your post, you do not have a noticeable tumor but only some irregular cell activity. You are on top of your oral health--you will most likely be able to catch it at an early stage should it turn cancerous. Since early detection is crucial, it would seem you have the best chance for getting the least destructive treatment and the highest chance of a cure with relatively minor affect on your quality of life.

However, if you refuse treatment and then change your mind later, the cancer will become more advanced. It will be harder to treat, will cause more problems with future quality of life, and your chances for long term survival will be reduced. That is, if it isn't entirely too late to treat it. Besides, many here will agree that they do not regret having treatment. They are happy to be on this side of the grass and still sucking air.

We know our bodies and know when there is something that seems wrong. However, we can also let our imaginations get the best of us and worry before there is anything to worry about. Please don't do a great deal of worrying until someone gives you a definitive diagnosis of cancer. Cancer steals enough of a person's life. Do not give cancer anything until it demands it--which, it's possible it may never put its demands on you. Live your life, try not to worry, and think in positive terms. Focusing too much on illness, worrying, and having an attitude of doom is often self-fulfilling.

Get enough opinions to make you feel confident in your diagnosis. But, eventually, you will have to trust your doctors and act accordingly. Believe me, I know it isn't easy. If you get a diagnosis that you are cancer-free, rejoice!!! There is much living you will cheat yourself out of by dwelling on something that doesn't require more than a watchful awareness.

Good luck to you. I hope you are cancer-free!

Sandy

Last edited by Sandy177; 09-19-2011 04:36 PM.

Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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welcome, Bean. There is a saying on this forum that it is NOT cancer until a biopsy says it is. Sounds to me that what your biopsy says is "keep an eye on it" but a visit to the ent hopefully will ease your mind.

Last edited by ChristineB; 09-19-2011 06:33 PM.

David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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Thank You all for the quick responces but maybe I should give You some info on Me and My situation,,,I am not young, just turned 58 on Sept. 11 and i have 3 grown Son's and one DIL ( who just had both Her Parents pass away) and a Husband who is 9 yrs.younger than Me, My Mom has advanced Alzheimers and is in a Nursing Home and My Dad passed away many Yrs. ago. I have one Sister who has new Grandchildren that She helps care for and I work for the State in a group home for the Mentally Disabled and I carry the ins. for Us. I don't want to put My Family through taking care of Me,,,They have jobs that are very demanding and need to work to provide for Themselves,,,My Husband just lost His Mother 2 weeks ago and is devestated by this loss. Medical issues are NOT anything He can deal with,,,,so, I will have No One to help Me with all the issues I may face and all the treatments will bankcrupt Us, I am not looking for any pity as I have done this to Myself. I am a hard worker and a good Friend and Mother and a Good Daughter,I took care of My Mom for many yrs. while still holding My Family and Job together but I know that I can not place this burden on Them all as They need to keep doing what They are doing to survive so if it turns out to be Cancer, I just want to live and work for as long as I can and then Maybe go into a Nursing Home till I pass with Hospice, I used to volunteer for Hospice so I know how kind and good They are, right now, this is My plan,,,,maybe if My situation and age were different I might feel differently, still numb by all this,

Last edited by Bean; 09-19-2011 06:19 PM. Reason: miss spelling
Bean #140258 09-19-2011 06:43 PM
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Bean, welcome to OCF!

At this point I would suggest to follow the advice already given to you and get checked out by an ENT. Then you can even follow that up with a trip to a cancer center. From what you wrote, you do not have cancer yet. Dysplasia can turn into cancer but not always.

Your age is NOT old!!!! I hope to still be around when I am 58, I really am hoping to hit 70. Its pretty drastic saying your plan to go into a nursing home then to hospice. Right now you have not been diagnosed with cancer. Sure medical treatments are costly but nursing homes can be tremendously expensive as well. Please continue to enjoy your life! I would suggest taking one step at a time as well as one day at a time before making drastic life ending plans.

Have you discussed any of this with your family? Do they know your plans? A family helps each other and cares for each other. I am sure if they knew the full situation your family would have something to say about your plan. Please talk everything over with them and also your medical professionals. Dont give up before the battle even begins!!!!!


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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Bean...

IF IT IS CANCER you caught it in the beginning stage, it might not be a stage. Being 58 is not old you have many years ahead of you, I'll be 65 and a widow.

As far as not bothering your family with your issue I think they would be upset if you didn't sit down and talk to them about your medical issues. I didn't want to bother anyone when I found out. I told my family take me to the hospital for surgery and pick me up when I'm ready to come home. After that I was alone during the day, took care of myself, after work they would come over, fix dinner, see if I needed anything then they went home. My dinner was milkshakes for 2 weeks. I was back to work the 3rd week.

Go to the ENT see what he has to say, write everything down because you won't remember what he said. Let us know. Don't give up !!!! We are here for you.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Thanks to all for the Information,,,I've got Myself dying here but I will wait to see what the ENT has to say, what is scoping, I don't understand? I have a sensitive gag reflex so I doubt I will be able to handle this at all:( I Thank You all so much for Your support and wish You all a long Healthy Life! Bean

Bean #140266 09-19-2011 07:49 PM
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Have some faith in yourself!!! You have a whole army of support right here to guide you along.

Scoping is something that you will get used to. It sounds horrendous, but its no big deal after the first couple times. Its a tiny flexible tube with a light and camera on the end. This gets put up your nose and down your throat. The doc will use numbing medicine so you barely feel it. The numbing medicine will take care of your gag reflex. To get scoped, it takes longer to get numbed up than it does to do the scoping. Its another important medical tool to help the ENT make sure you are healthy.


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 there I can only reiterate what everyone else here has said - aside from the fact that it may not be cancer. Your family would probably be devastated that you didn't tell them. My mom died at 59 and it's been 10 years and I still miss her like crazy. Your husband is broken hearted over his mom, I cannot imagine how he'd feel losing you too. Some early stage cancers are dealt with by surgery. Please don give up even if it is cancer. Hugs!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Bean, you seem to be giving up even before it is conclusively declared as cancer. There are several people in the forum who have not only fought once but many times and have succeeded the battle and there are some who are fighting without giving up.

Please see a good ENT surgeon experienced in treating cancer, you may probably need another biopsy. Treating yourself is sometimes more important for your family than you, they need you.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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Bean,

I'm the biggest baby when it comes to medical issues. Like Christine said, scoping you get used to it. I had it done twice, scared the day-lights out of me it sounds worse than it is. When it was over with I said to my Dr. that's it he said yep. I want the scoping now it tells a lot of what's going on.

You now know the steps you have to take, per the other posters, do it, get the ball rolling. You have no time to sit and think about it for days or weeks, get moving on it NOW. Don't give up!!!!

Keep us posted. God Bless

Connie



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Bean, as you see from all the survivors on this forum, head and neck cancer can be treated and beaten. If it is cancer the treatments are very rough going but it sounds to me that you have plenty to live for. I don't know what insurance you have (I believe you did say you have it) but with ins. it shouldn't bankrupt you. My entire course of treatments came to well into the 6 figure category and all that I paid of it with co-pays came to about $1500. Cancer is not a death sentence and your family would no doubt be devastated if you just gave up without a fight. At least, I would be, and probably angry as well. MHO.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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I smoke and drink beer daily and I have made this mess and I don't deserve to upset My Family with what I have done to Myself,,,,I don't want any of You to get the wrong impression of Me though,,,I am a Good Person and Irish decent and this is just Who I am,,,,I am beyond terrified and the only Ones I have to talk to right now are all of You:( I am so lost and can't wait till the 29th to see the ENT Dr. I may not have mentioned that this thing under My Tongue, Floor of Mouth hurts alot so I can't imagine that Dysplacia can hurt this much makes Me think otherwise,,Hymmmm?

Last edited by Bean; 09-20-2011 06:49 PM.
Bean #140345 09-20-2011 07:15 PM
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Bean,

We aren't here to judge we're here to help. Wrong impression of you, No Way. Ok you drink and smoke time to put it away. You haven't made a mess look how many people on here who don't smoke or drink and they have Oral Cancer. If you have cancer you really don't know how you got it. It could be from smoking and drinking or some thing else. I blamed everything under the sun, my cell phone was a biggy with me.

I'm glad your going to see an ENT doctor, that's your first step. Don't give up we're here to talk to you anytime. Take notes at the Dr.s office or have someone go with you because what he tells you will go right over your head. I had someone go with me to all my appointments I couldn't remember a thing the Dr. told me. My head was some place else. Also get a copy of your medical records I did and it told me a lot.

Keep us posted, take care and God Bless.

Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Thank You so much,,,,I have to ask, how do you get a copy of Your Medical records,,,I didn't think They were for Our eyes to see hence They always put Your file outside so you an't see it? Lol

Bean #140348 09-20-2011 08:30 PM
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Your entitled to a copy of everything in the file. You can ask them for a copy. Also no one here judges. I could be he smoking that caused your trouble - but I'm practically a vegan, don't drink have never smoked, or done drugs and I had a tumor in my tongue. Cancer can be indiscriminate. Fell free to talk, we'll listen- but do try to quit smoking if you can. smile take care,


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Bean,

You seem the type to carry the weight of the world on your shoulders adverse to asking for help from those to whom you are closest. Sometimes it is a gift to allow people who love you to do the giving for a change--it is generous to receive instead of always giving. Don't be afraid to involve your family. Allow them to be the support you are to them. If this is just a wake-up call, it is an easier opportunity to involve them in what you have been feeling.

Please try to distract yourself until you see your ENT on the 29th. Try to occupy your mind with activities you enjoy. Worrying is a waste of energy and can be physically harmful. When you start thinking about what can go wrong, switch channels and think of all that is going well. After all, it could be so much worse. The pathology could have been positive for a difficult to address malignancy.

Try to keep your eyes on a happy future with your family. Be gentle with yourself. Treat yourself kindly and patiently. Sending you wishes for peace and contentment.

Sandy


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Bean,

Cheryl is right. Go to Medical Records sign a paper for release of your medical records. In a few hours you should have them. Those are your medical records, no one can tell you that you can't have them, if they do put up a big stink they are YOURS.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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They can't refuse you any of your records...and they can't refuse you access to your biopsy slides.

We took custody of J's slides from both biopsies way back in March. I may or may not return them to the hospital. We might still need them. The hospital asked where we were sending them. We told them it was none of their business. Because...it isn't.

You are entitled to every piece of information pertaining to your care and every little scrap of tissue removed from your body.

I'd get the rest of J's tissue samples preserved in formalin if it wasn't such a creepy thing to have hanging around the house...:6 A little too....ummm...Jeffrey Dahmer.

Also, you can get copies of scans on CD.

Last edited by Sandy177; 09-21-2011 09:12 PM. Reason: butchered the English language :/

Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
Bean #140458 09-22-2011 12:25 PM
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My oral dysplasia was on/off painful and worse after biopsies and scrapings. (Lychen Planus dx 2009) and I had been having occasional pain to the site for years and years. The pain worsened after getting biopsies. Now cancer as of 3 days ago. Not sure what kind or what stage, just told superficial having sx next week.


Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage


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I had horrible pain after just a biopsy, I can't even wrap My head around what kind of pain there will after removal,,,I weigh 103 lbs. now,,I am gonna just disappear?

Bean #140466 09-22-2011 05:26 PM
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No, you are NOT going to disappear. You may have to go on a liquid diet for a bit, or maybe a PEG, but those are manageable changes that you WILL be able to handle if you have to (and we don't know if you have to).

If your weight is low, you might want to add Ensure or Boost once or twice a day to keep your calories and protein intake up.

Regarding the pain - it can be managed. If you do have to undergo treatment, you won't be doing it all - there will be a medical team - and us on OCF - to help.

I just want to reiterate something Sandy posted: "Sometimes it is a gift to allow people who love you to do the giving for a change--it is generous to receive instead of always giving."

When my husband was sick and undergoing treatment, I was SO happy to be able to do something for him. It is a blessing for you and the giver to accept help freely given.

Take care and keep posting.

Last edited by Maria; 09-22-2011 05:27 PM.

CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Bean, there are variety of methods available for pain management post the surgery, so kindly stop making excuse and get yourself examined and go for treatment IF you are positive.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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I waited and it made it worse. get treatment as fast as you can don't delay. they will control the pain. I would recommend the peg before you start rad. as nothing will taste right and you can bypass the mouth until it heals.see a nutritionist as far as what and how much liquid food you will need. pat


dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
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Bean,

If you don't have a blender I suggest get one. I made milkshakes after surgery. The cold felt so good on my tongue. I was also on liquid Roxycodine for 2 weeks (pain meds) then went to Tylenol.

When is your Dr.'s appointment? Please keep us posted on what's happening. Think about a Cancer Center they're the best.

Take care,
Connie





SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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September 29th, I can't sleep well and the anxiety and stress is gonna kill Me, I already had one Heart attack:(

Last edited by Bean; 09-23-2011 06:21 PM. Reason: killed it
Bean #140500 09-23-2011 06:12 PM
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Try to relax and do something to occupy you time. I read a lot right up to the surgery. smile try not to freak out until you know for sure what is going on. smile take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I am worried because the biopsy I had in My first post were in March and it is now September and maybe it has changed alot since then, it is quite painful now and My Oral Surgeon said it is quite a large section and that is why He sent Me to an ENT because They have lazers and a better way to remove it than Him,,,,Yikes!

Last edited by Bean; 09-23-2011 06:31 PM. Reason: brain dead
Bean #140514 09-23-2011 10:59 PM
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Hang in there. I know the waiting is very hard. Soon you'll be on the other side of this and on the road to recovery.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
Bean #140515 09-23-2011 11:09 PM
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Hi Bean,

Sweetie, breathe deeply then exhale a few times. Concentrate on capturing a sense of calm and peace for yourself. When I went through the waiting process, I mentally escaped to my 'happy place'...it can be anywhere you feel safe and worryfree. It helped me keep my sanity until we got the final scan results. I had an extended stay in my happy place--we had to wait from March until August.

Waiting is scary, frustrating, and causes crippling anxiety. But, if there is no way to change the time frame of when you can be seen by your ENT, then please try to relax and focus on something else. Acceptance can be a wonderful gift to give yourself. It is easier said than done, I know. But, use this time productively. If you get a cancer diagnosis, you will be launched into a whirlwind of activity and will be glad you took care a few things before your attention is diverted elsewhere.

If it isn't something that needs treatment, then you would have wasted a lot of time, energy, and potentially ruined your health worrying for nothing.

Don't let cancer take anything more away from you until your doctors say it's time to give it something. You may never have to give cancer anything. That would make me a very happy person. Too many of my friends and family--at home and on the OCF forum--have had to sacrifice dearly because of oral cancer. Sometimes the sacrifices were life-saving...other times, it was not. Live your life and enjoy it--even while waiting for answers. Don't let cancer rob you of one minute of living. If not for yourself, please do it in memory of others who lost the fight after sacrificing so much.


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Hi, Bean -

The day I got my cancer diagnosis, I got a call from a friend who had terminal cancer. He said, "Marlene. You're not going to die today. You're not going to die tomorrow. You know what I'm doing? I'm sitting on my porch with my wife and enjoying a glass of wine." Kinda put my diagnosis in perspective, & it was the best phone call I could have received.

I know that fear can drive you crazy. Slow down that monkey brain, if you can. Deal with what you know today. Today you know you don't have cancer. Today you are not a burden on your family. Today you are not in a nursing home. Today you are not in hospice. Chances are, you won't be in a nursing home tomorrow, either.

If your dysplasia has developed into cancer, you don't know what, if any treatment you may need. Surgery may be all you need, but you've put yourself on that radiation table and have given yourself an experience you say you or your family couldn't live with. That's Fear talking, again.

I know it's difficult to tame fear because it wants to control you. Fear is a bully. Many years ago a relative's soon-to-be-ex husband broke into my house & trashed it. She didn't want me to call the police because she feared he would do something worse. I was afraid of the guy, but it was fear that caused me to call the police so I could get some protection. You have good reason to be fearful - especially during this time of uncertainty - but use your fear productively: let it take you to the doctor.

Re dysplasia. I was first diagnosed with severe dysplasia - the cells *had* gone to the dark side. My surgery cleared up mysteries in my diagnosis, and I didn't need radiation or chemotherapy. I hope your outcome will be as positive.

Until you have some answers, please come here to vent. There are so many wonderful people on this forum who have seen, heard and experienced just about everything about Oral Cancer; & we've all experienced fear. We're here to help you fight it.

Peace,
Marlene



Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
Bean #140543 09-24-2011 10:05 PM
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I know it's scary but freaking yourself out will be of no help! frown try to focus in other things! Wait to see what your ENT thinks then take it on step at a time.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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You are all that is keeping Me sane, I am fearing and welcoming this visit with the ENT on Thursday, I am a praying Woman but because I never quit smoking after the last Biopsy I am too ashamed to ask for His help and protection once again:( I am not sure what I will do after His diagnosis but You all have been Heaven sent throughout this time and I so want to be strong and helpful to Others that may be facing this when I wished NO ONE ever has to,,,,with <3 Bean

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Hugs hun... We'll add you to our prayers. And god forgives he loves you as he made you - I'm sure there are far worse people out there who pray to him, so pray as much as you want! If you do get a c diagnosis, the best way to deal with it is one thing at a time! Take care and good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Bean!
We are all broken vessels. God gets that. He will pick us up as many times as we fall. Please be as gentle with yourself as God would be.

I will keep you in my prayers for you to be completely healthy...and for you to have the willpower to stay away from tobacco!

Love,
Sandy
xoxoxox


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Bean,

I asked my doctor how soon I should quit smoking after he had delivered the news about my biopsy being positive. He said a few days were not going to make a great deal of difference after 30 years of smoking but he wanted me to have quit at least one week before treatment began.

This gave me a few weeks to wind my smoking down to a few cigs a day and to get a few self-help books. I also went on the patches and then kept some nicotine mints around for those sudden urges.

I had fully and finally quit a week before I went into treatment. Take some time and work your way into quitting the cigs. Make a plan, look for any support you can get and then just follow through. There are some great support groups on the net so you might want to try that.

The key here is to give yourself time to implement a plan and then get to the point where you are a nonsmoker. It does not have to happen overnight but it will need to happen fairly soon (it took me three weeks).

Best of luck, I know you can do this.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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I am going to the ENT Tomorrow and it is about 45 minites away for the second opinion,,,,I have a couple Loved ones that offered to go with Me but I said No, I will do this alone,,,Should I be concerned as I have to drive back home by Myself?

Bean #140740 09-28-2011 06:12 PM
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Bean,

I was alone when I was first given my news and I don't recommend it. Take someone, strength in numbers.

Keep your chin up,

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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I made this mess just Me, and I don't know what to expect on second opinion appt., a biopsy, scoping or just the initial visit so I think I should go it alone,,,but Thank You so much EricS:)

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Bean...

There you go, being the Lone Ranger again!!! You may need someone with you. They have offered (I am so glad they did!) so now would be the perfect time to let them in!!!

Choose the person with whom you feel most comfortable. Then, you will have someone who can keep you steady if it isn't good news...or, even better, someone who will celebrate with you when you hear it's good news! Either way, the person you choose will be thankful you included him or her and proud that you showed confidence in his or her ability to help you. If you have oral cancer, you will learn very quickly that you will need to learn to rely on other people for help. Not that it hasn't been done by a couple of Lone Rangers before you. But, you have people who want to help. Please allow them to show their love and appreciation for you. I'm thankful for the times I spent with people I love when they needed me. It is less of a burden than you think.

I hope you get some good news tomorrow and the ENT is able to put your fears to rest. I'll be thinking about you tomorrow and will be sending thoughts and prayers for a clean bill of health.


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Agreed - I was alone when I got my news - not good. Even though it came from my family do who's a darling. He immediately set up my scans and blood work and wit ing a day I had the results... So I could breath over christmas. And let me tell you I'm a pretty tough cookie. We all do things that aren't good for us - this is a wakeup call. Put it behind you and stop beating yourself up the past is gone there's little you could do to change it - work on the future! Hugs - good lck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Just got back from the ENT, I got scoped and set up to have Lazer Surgery late October,,,,He does not feel that it is Cancer at this point,,,,Thank You God and to all of You wonderful People on here, I want to Thank You from My Heart and Soul for being there for Me and giving Me the courage to follow this through,,,I hope I will still be able to encourage Others to get things checked when fear overcomes Us,,,,My Love and Blessings to each of You for Health, Colleen

Last edited by Bean; 09-29-2011 03:14 PM.
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Excellent, Colleen! You have grown in wisdom and strength in the last few weeks, and will be able to better care for yourself and others. Be sure to let us know how the laser procedure goes!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Hi Colleen!!!

That is wonderful news! You did it! You already do encourage others by being brave and going to your doctor. You are a great example of the benefit of paying attention to your body and taking action without procrastinating. And, I'm sure you will be able to help people who come along after you by reassuring them and encouraging them.

Keep us posted on how everything goes with the laser procedure. You are good person and deserve all the best that life has to offer.

Sending wishes to you for health and peace!

Sandy
xoxox


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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That's terrific. I'm so glad for you!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Colleen

Great news!!! I just had CO2 Laser Glossectomy to the Left Vental (underside) of my Tongue only 6 days ago. I was in the hospital overnight and had little to no pain. I am only having pain now cause I cant tolerate the Tylenol 3's that I was prescribed and stopped taking them. Needless to say 24-36 hours later, I am taking them again!!! Just need to take some gravol with them and see how it goes laugh

Like yourself I am a bit of a glass half empty girl. I suffer from anxiety and stress which is the primary cause of Lichen Planus, or as you are learning Moderate Dysplasia. (dys: meaning difficult Plasia: meaning cells) So these were cells that are not normal but not cancerous, just different. Only 15% of people with Lychen Planus go on to develop Ca. I was one of them. Am I angry? Resentful, Pissed off?? Hell yes, it makes me human. Yip going through all the stages of grieving and wondering....

The surgery was very superficial. Healing can be a little slower than scapel removal but less chance of complications and re-occurance. Talk as much as you can, it helps to rebuild your muscle tone. Remember the tongue is a muscle so exercise it. I am having a hard time with this because I live alone. So I am learning to read outloud everything I type!! My cat thinks I am nuts!! Hahaha

I had a CT of the head done before hand to rule out invasion to my lymph nodes. Ya nothing! So don't be suprised if your ENT suggests one as well, or as I have learned on this forum after the surgery, all depends I guess. And of course lots of good ol' blood work. The CT was very quick and the contrast dye they give you makes you feel like you peed your pants, I checked and laughed with the technicians when I got up from the table and I asked the girls 'Bet everyone does that!!" laugh

It may be in your best interest to talk to your ENT or family doctor about anti-anxiety medication and ongoing counselling. Here in Canada we are fortunate to have Medical coverage, and once diagnosed with Cancer the resources are plentiful in Urban Centres anyhow.

As a patient, whether in the US, UK or Canada we still need to take responsibility for ourselves, in accessing what is available, advocating for ourselves and learn to ask for help and then ACCEPTING help from our family and friends. Our friends want to help. They dont need to feel guilty for not knowing and not being there for us at our time of need. I am learning this the hard way. I was alone with all this and only after surgery am I now telling people. I live alone, be blessed that you have family to support you!!!

Nutrition is key, as Cheryld will tell you. (love you Cheryl!) smile So get cracking and bulk up now!! Protein is key!!!

And as the old saying goes...."When we know better, we do better" this goes for education and action!! Feed yourself with a wealth of food, love from family and friends and you WILL find the strength and motivation to quit smoking and avoid the alcohol. You would be blown away at the kindness of srangers, and sometimes talking to a stranger seems easier. I am a big advocate on Education. Its what I do. I am a teaching nurse (or was, and will be again)

Yes you will need time off from work, simple fact of life. Family will have to adjust and work extra hours etc to help out. Small price to pay to have Mum build up her strength and get healthy isnt it??!!

Take one day at a time. I am a reaslistic and very pragmatic person and yes reading some of the stories here on this Forum can cause anxiety and fear to ease out of every pore. I am a nurse so I know the worse case scenarios and all the inbetween and I was still shaken and put off from some of the stories here. I have learned to be selective in what I read. I am not a T4 so I wont read a topic about T4.

Any questions please ask....I may not have the answers but I may be able to help you formulate the right questions to ask your doctors and caregivers.

<3 Hugs
Tracy



O


Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage


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