My sister was diagnosed 3 weeks ago with tongue cancer at the base. The only test so far has been the camera down her nose 3 times...regular dr, 2 ENT drs. Both have said it's very bad.

She is 62 and until recently a mostly functioning alcoholic, meaning she only didn't drink at work. Got laid off, couldn't find another job, in June after 2 years and all money gone she had to take early retirement. which means no medical ins until 65. I say this all just to explain the delay...no one will start treatment until her public assistance insurance has completely started. The second hospital I found was a little more helpful but still won't begin yet. Hopefully soon. They said they will set up a pre op visit next and 2 weeks later do a biopsy. After that, a PET scan.

All of you are so brave and so inspiring. I have been reading everything I can for weeks but this site provided me with more helpful info than all the others put together.

My sister is not a young 62. She has always been taken care of and is, I don't know...not strong. I'm 10 years younger and the opposite. rarely let anyone take care of me and very strong. I'm sorry, I'm rambling, I'm so scared. I have been the one finding drs, insurance, learning what this is all about and what she will have to go through, but I've only told her a bit of the really nasty...I figure once she has the biopsy and PET the doctors will really get down to the nitty gritty and they can tell her. the first ENT already checked out an arm and told her that will be used for reconstruction.

Based only on the camera, the doctor said most of her tongue has to come out and that she has a rough road ahead of her. Backing me up, he told her she has to really start "eating" to gear up for it and when she complained said "just do it". She can't manage much because the tumor is so large and by now her appetite is gone... I have her forcing down 2 Ensures a day mixed with a lot of milk or ice cream. I am going to try some of your suggestions peanut butter mixed in, protein drink mixed in. She is usually about 115 lbs at 5'3"� but is now only 95. They gave her roxicet liquid, made her itch but she took it. Now she has vicodin pills so maybe that will help more. She is being so brave and I wish I could DO something, I feel so helpless but I'm strong for her.

I know I need to wait for the test results, but I can tell by the change in 3 different doctors demeanor after they used the camera that it is really not good at all. She has told me adamantly that she is not having the surgery, but she will do chemo and radiation. She means the tongue out. I haven't gone into how much worse it MIGHT be...that's the part I will leave to the dr. I have explained about you all and how I feel SO much better after reading your posts about so many recoveries...that it WAS extremely hard but now so many can talk and eat and are happy. She says NO. I can't relate to that at all but then I'm not facing it.

Should I keep trying to convince her? I mean, I know I have to wait for after the tests and the percentages, but after that? Has anyone here been talked into not giving up? I know she doesn't like her life but since she can't drink now, I thought maybe she'll stop completely and her life could change, right? I'm sorry this is so long. I guess that is my question....has anyone else been convinced to have the surgery and been glad of it?

Thank you for all your help so far. You all seem wonderful.

Janie

Actually most base of tongue cancers that are advanced ( or "very bad")are NOT treated by surgery at first, especially stage IV but by radiation and chemotherapy since the doctors are being candid about what a rough road surgery puts you on. (Tumors on other parts of the tongue are a different story and most do get surgery right off the bat). So she may not need the surgery.
Look at DavidCPA's signature line and you will see that for many base of tongue cancer patients, radiation & chemo do the trick. Or look at Mike Douglas' experience. With just a scope examination and no CT , MRI or Petscan yet, it is possible the doctors will reconsider surgery.

The more difficult question is about motivating her. If the primary reason she wants to give up is because she can't drink anymore, then she could always get a feeding tube and put wine down the feeding tube. Since the alcohol never touches any part of the mouth or oral cavity, most doctors think it's fine. I make no apologies for liking a drink and found my beer a day the first time around and my wine in the feeding tube since my surgery very nice. My doctors have all signed off on it. However, since she was a functional alcoholic, she probably will not admit that fear of not drinking and facing life sober is the reason. If she can not or will not drink sensibly and in moderation, it certainly would be better for her to quit entirely.
You sound like a great sister. Welcome to OCF
Charm

Welcome to OCF! Sorry to hear about your sisters situation! Sounds like she has alot of things she will soon be forced to face head on. I myself almost didnt go thru with surgery for my third round of oral cancer as it was very involved and my chances were slim. Thru the caring of Brian Hill (OCF Founder) and the members of this forum I was convinced that I had to give it a shot before just giving up. Its not easy to dig deep inside yourself to come up with the resolution to continue when the future looks bleak but it really can be done.

I know insurance can be a problem but she should be going to a cancer center where they will be much more experienced with treating advanced cases of oral cancer. This will give her the very best shot at getting thru this with less collateral damage.

Best wishes with everything!

First off sorry for the both of you. Tell me how was she diagnosed? Was any biopsy done? Was any mention of any nodal swelling on either or both sides of her neck? As Charm posted look at my Signature Line below. No surgery with BOT primaries is quite the norm so when I read surgery and even using her arm for tissue replacement I was surprised even a tad shocked. You are the one that will have to press these issues and it will be more challanging without health ins for sure but I have been able, more than once, to get uncovered diagnosed cancer patients treated by the best cancer center in Florida at no cost to them.

I'm sorry to hear also. I had tonsil as primary with base of tongue, valleculla invlolvemnt, and Chemoraiation was the course of treatent, but each place, dr, and patient id difftent for a number of reasons. I suggest your sister file for SSDI or SSI right away. It takes a few months to get , but they do expediate it for compassionate reasons, and Cancer is one. It takes 29 months from your Diasability date to get medicare. You can go to the SS website for more info, and file from there, by phone, mail or in person. It took me three months to get, and went back a year to my disability date, not filing date, with back pay. SSI is a little different, and paid by a different fund! and usually get Meicaid with that.

Thank you all for the great replies.

Paul, i am looking into ssdi but they pretty much say since she is retired it doesn't apply. She has almost 2.5 More years until she is eligible for medicare. She will have subsidized insurance takes in $175 a year too much for medicaid welfare though. The hospitals just wouldn't schedule any scans or biopsies until it is all completely approved. They have now scheduled a pet scan for 10-8 on the supposition that it will go through. Both hospitals did have really good financial planning centers, coordinating with the state s insurance, etc. They have it flagged for rush but i guess it has to follow all the steps. Anyway, i think it will be fine the delays were just really hard to take. She does own outright a condo that we can sell but again, it's just a time thing.

David, i too was very surprised that 2 different oncologists immediately said surgery after seeing an endoscopy. In my experience a dr rarely says anything until they see test results even my best friend's dr wouldn't say anything and she had pancreatic cancer. I suppose this is one of the things that lead me to believe it's very bad. No, they have not said if they felt anything in her lymph nodes/neck though one of the doctors said it was most likely also in the esophagus.

We do have some of the country's best cancer centers in the boston area. After we know everything we need to know and the insurance is all set, i may look into taking her to the dana farber cancer institute for her treatment. 20 Yrs ago my brother had lymphoma and they cured him.

Lol charm no, i do not see anything wrong with a drink or 2 or 10 to get you, me or anyone else through this. Just not for her. Uh not that i in any way equate me with any of you. Not at all! But in her case, drinking is more than likely what got her into this mess and i know if she could figure out a way to get it past the tumors, she would be drunk and saying she hadn't had a drink since april. No, that's not for her. In my happiest little fantasies, they do the scans, say they were confused and they meant a great big canker not a cancer, but marie got scared enough that she never drinks again and i have the wonderful functioning, fun sister again instead of me being the mean mother, cleaning up messes she leaves wherever she goes and wanting to punch her in the head every other day. Sigh...I wish. Ahhh cancer the great equalizer. Now we are simply sisters again and I am only remembering who she used to be to me many, many years ago.

Thank you all. I want her to fight and i keep using all of you as examples that you can win the battle if you fight. She says she has gained two pounds so i'm hoping that's true my nagging about drinking shakes and ensure and eggs might be working. I have learned so many useful things from you in the last few days. Thank you again for your help.

The experts here have spoken and the are correct. If this is and HPV related cancer (because of her history of drinking I would confirm this) then chemo and radiation are the first steps generally. The biopsy will give you her HPV status -hopefully that's soon. best of luck!

Get her to Dana Farber ASAP. Let them give their opinion.

I agree with DavidCPA - Dana Farber is a fantastic hospital. All the best for you and your dear sister.
Maria

Thank you for all the advice.
Dana Farber would be lovely, of course....22 yrs ago my brother had Lymphoma and he went to Dana Farber for a full recovery (thank God). My sister's public insurance will only allow Boston Medical Center but they have been wonderful to us and they have a great new cancer center that comes highly reccommended. They are affiliated with the BU Medical Campus.

So she has now had her biopsy and scans, we've met with the chemo dr and the radiation dr and the surgeon. From doing his own endoscopy, her surgeon says he tends to disagree with the oncologist who did her first biopsy and panendoscopy...he believes the tumor is smaller than that report indicates. He says it's the difference between having to take the whole tongue and voice box and being able to save a third of the tongue, have reconstruction and having a much better chance of survival. He wants to go in and look at it himself. So that's where we are now. Next week he will do that.
My sister is doing much better...I think she was formerly in the depression portion of this program. Now she tries to get out every day, she is really trying to force down food and has gone from 79 pounds to 88 lbs. She looks like a different person so I am so hopeful now. Her surgeon would like to put in a PEG next week when he does the panendoscopy because he says she is going to have to get it when she starts surgery/treatment anyway.. and "most likely forever"...and this way she can really fatten up some more before then because she is in for a rough time and she needs to be fatter LOL. So far she has agreed...with the proviso that she can change her mind that day if she wishes. Fingers crossed she won't change.

I use all the advice I read on here so often and am always telling her "the OC people" say this or that and it helps very much. And has been INDISPENSABLE in easily understanding what the doctors are telling us. She's learned all of the worst stuff this week...the things I knew but didn't want to be the one to tell her...and knowing so many of you have gotten through it, really helps.
Thank you!
Janie