I'm new to all of this. My husband (age 48) was recently (5/17/2007) diagnosed with Base of Tongue SCC. He had no symptoms other than a couple of swollen lymph nodes which turned out to be cancerous. It took a full body PET scan to find the small cancerous area on the right side of the base of his tongue.

We are working with a group of specialist that are working hard to get him on a treatment plan. They are looking at 7 weeks of radiation and next Wednesday we will learn what type/frequency of chemo will accompany the radiation.

Digesting all of the information at the almost daily doctor visits has been overwhelming.

Hello M and Welcome.

You have found a great website to help you and your husband. Any questions you have, fire away.

Thankfully his SCC was caught at a fairly early stage and he should have a good prognosis.

Yes, it is very overwhelming but now that you found the OCF you are not alone. There are many extremely dedicated, knowledgable and compassionate people who will walk with you through your journey.

Best Wishes. Petey

Hello M;

Welcome to this helpful & informative website. Without knowing much about you or your situation, arriving here is (at least) the second thing you have done right...... the first thing being the early diagnosis of the cancer !

Now that you have a team of specialists working on a treatment plan, you and your husband are almost at the point where you can run on cruise control for a while.....

.....well, sort of. At first, there is so much to comprehend, its a wonder we don't fry all our circuitry after the first couple of sessions. The pace doesn't change all that much in the days and weeks that follow, but you'll probably find your absorption rate increases. Things begin to take better shape, and you are not caught off guard or by surprise as often. Before you know it, the patient, the care-givers & the team of specialists will have found their own synergy, and life will become much more manageable and less chaotic. You'll return to thinking of the future in terms of years instead of days or only tomorrow.

One thing I found helpful was this. When you get a quiet moment of alone time, take a second or two and congratulate yourself (and your husband) for getting through one of the more difficult phases to handle, emotionally speaking, of the new reality. Every step in the right direction, regardless of size, is a positive achievement, and the more positives you have, the more of everything else you will have.

Its not all sunny days however; you have to expect the occasional setback, but try to keep them in perspective; they are simply incremental changes much like the positive ones except for direction, and so long as 51% are of the positive variety, you'll be ahead in the numbers game.

In my opinion, a substantial portion of the fight against cancer - that's any cancer, at any stage, fought by anybody - takes place between that patient's ears. Positive thinking prepares the mind to work miracles, the rest of the body just follows. I, too, believe that its not the size of the dog in the fight, rather it's the size of the fight in the dog that matters.

You will be amazed how many others share you concerns and are willing to help guide you through the morass; they have been there too. Anytime you need support, a place to rant, or a sounding board for your ideas - you'll find it here.

The range of information - technical as well as emotional and spiritual - is within easy cyber-reach only a few keystrokes away. You could aptly describe it this way: "The whole is greater than the sum of its parts."

And I'd say you got here just in time !

I wish you and your husband every success in the future,

Sincerely,
JT2

M,

Has your H been tested for HPV?

Was/is he a smoker or tobacco user?

Your hubbys dx is the same as mine,and the surgeon who operated on him was very optomistic of a good outcome.Just one word of warning from your last sentence, dont expect this journey you are about to embark on to make that situation any better i made that mistake and paid the ultimate price.Be very aware that you need to make sure that whatever way you handle this works for you to because it will be the hardest thing you have ever done.
good luck

David,

He was a recreational (i.e. he'd smoke when he went out for a drink) smoker for about 6 or 7 years...it was probably worse when he was in the airforce than when he met me, but hasn't smoked in over 16 years. He has not been tested for HPV. I know what that is as it relates to Cervical Cancer, I know less about what it is as it relates to Oral Cancer. You indicated your number is 16+...what does that mean? If it's viral, am I at risk too? Is the HPV test a blood test? I do not believe he was tested for that, although I will ask tomorrow.

Margaret

Liz,

You wrote: i made that mistake and paid the ultimate price.

Can you help me understand what "mistake" you made? I am really open for advice and guidance.

Especially since it sounds like you know very much what I am going through.

Margaret

Liz --

The reference to HPV-16 is to one of the "high-risk" strains of human papilloma virus (those most apt to cause cancer) -- there has been a lot in the press recently as a paper came out in New England J. of Medicine May 10 which describes the risk factors etc. for HPV-induced head/neck cancer.

The researchers found that of 100 patients with orpharyngeal cancer (that is, cancer restricted to the oral cavity and the pharynx) 72% had HPV-16 in their tumors. Most of these tumors presented first in the tonsil or base of tongue. Some of the patients were smokers but most were not.

Being tested for HPV is probably wise, there is a lot of attention now being directed towards this form of oral cancer which is biologically different from that caused by smoking and which seems to respond more favorably to treatment .

If your cancer center cannot do it, it can be done at Johns Hopkins where the above research study took place.

Treatment, whether the cancer is HPV+ (positive) or not is difficult and you both will have to call on your strength and determination to get through it. However many have made it through and resumed their normal lives so do not become despondent. However go through the Oral Cancer Foundation web site (that is, the web pages other than this Forum) for information on treatment, side effects, etc. etc. We did and it was invaluable.

Gail

(husband had Stage III/IV SCC tonsil, base of tongue, 2 nodes -- 35x tomoTherapy IMRT and 7x carboplatin, plus amifostine -- now almost two years from dx and doing great.)

Margaret,

The "unknown" is one of the scariest parts. and I am not speaking for Liz by any means as i cant , but maybe what she meant was .. This isnt easy at all for you or him . And while you stated it isnt the strongest of relationships, I think she means this makes more strain on it ..beleive me I know ..as the Pt stand point. It is hard on a good foundation and I think harder on a not so sturdy one ..If I make any sense. Not to give you depressing thoughts, just to prepare you of the hardhsip and mental strain you are going to go through ,,in some case though I would think it would bring the two closer


At times , I felt that here, like maybe it did, and other days I felt like it pushed us apart. Either way make sure that you yourself have someone to talk to to help you through this, because you are going through it just as much , in a different way. I am always here to talk.Understanding the relationship part of it ..living it .hahaha. But I am from a patient point of view !

Shar