Hi All,

I am glad I found this site and to know that we are not alone.

My partner of fourteen years was diagnosed with squamous cancer of the base of the tongue last May (07). He endured nine weeks of radiation treatments at the Cleveland Clinic, and also had two of his neck nodes removed. Post radiation, we were given a clean bill of health in October following a PET scan.

He had some complications to a pre-radiology tooth removal and had to have a splinter removed after his radiation treatments were completed.
This led to 29 treatments in a hyperbaric oxygen chamber to promote healing of the hole the oral surgeon put in his jaw. The HBO2 treatments seemed to have worked, as now his jaw is better.

However, this past Friday, we went back to the Cleveland Clinic to have his esophagus stretched since he was having trouble swallowing, and the ENT who performed his node removal noticed a recurrence of the cancer at the original site. He said he was surprised to see it and that it looked aggressive.

The Doctor was extremely grim about the situation, and recommended an 8-10 hour operation to go inside and remove the tumor. and even went so far as saying there was a pretty slim (15-25...certainly less than 50%) chance of getting it all.

We are a bit in shock, as we thought we were well on our way to recovery, and he had even returned to work two weeks ago. He is still strong physically, but we are having trouble emotionally.

We are seeking second opinions from other doctors, but we feel our window is short.

We don't understand how it could have come back so quickly, and we wonder if the HBO2 treatments had anything to do with it? He is 46 years old and HIV+, but undetectable and strong. (He did lose about 20 lbs throughout this whole thing, and is holding steady at 150#.)

We just want to hear from others who have been through this, and to know that we have a good shot of getting through this. I am going to prowl around this site to see what I can learn from it. Are there others who were given grim prognosis after an initial good one out there? Can I keep telling him this is just another bump in the road, and that we will make it through this too?

Please say its so....

Best,

Chuck (and Bill)

Dear Chuck and Bill,
Hi guys. I read your post with some interest and can vouch for one thing that your doctor did a great job regarding the Hyperbaric and I think it improved the chances rather then otherwise. I cannot talk on the imapact of HIV having become a cause of the return but can say one thing cancer is an illness that never really goes away. It may lie dormat for a some time and the emerge when least expected.

I contracted cancer when I was 42 and now at the age of 49 - having been through so many surgeries - major and minor I have lost count. I have not eaten s solid meal or had a sip of water in the last seven years and have been on peg feed. Whatis lucky to some extent is thatage is on your friends side and he can take out the punsihment metted by the cancer better then most others.
I for one have never ever looked for a second opinion especially after having had a succesful run with my treating doctor. Its not that the doctors are God and are prone to make mistakes but sm sure such glaring errors about your freinds are not that feasable to get more opinions and get yourself more confused. However, that is you choice and I am strictly talking as a well wisher and not a doctor.
I was cancer free for seven years till the illness decided I had had enough and so did it and I have now got the illness once again - but in a wierd way. What I would suggest is take the advise of your treating doctor as he seems to have made a reasonably good start ad its just bad luck that the cancer re emerged. Take a second opinion for all purposes and then decide what course of action you would like to take.
Never look at the illness as a full and final disgnosis as it is not always so. There are so many people who have been through this hell and are leading a as normal life as they can. You can say that its a bump on the road that you will cross soon enough.
Take care,
Ananth

Dear Ananth,

Thanks so much for your words of encouragement...they mean a lot. We are still going to go ahead with a second opinion- we figure it can't hurt- but we do feel the need for expediency.

I like the way you say to "Never look at the illness as a full and final diagnosis." That's the way I feel too. Another bump in the road and we'll just have to get over it.

I'll keep you posted as to how things go!

Chuck and Bill

Chuck,
What an experience!
The hardest part thats everyone tale of their cancer is different and 'special' in some way- hence there is no cure for all yet.
Its important to remember that Bill is NOT a statistic! We are all individuals. & and any sort of chance is better than no chance.
Many people live with cancer as a managable disease now - with palliative treatments playing a great role in getting by. & if Bill is feeling good and strong now, then focus and believe in that.
Go for your second opinion... & remember that a statistic is just that.

Hi there
you asked if there was anyone here who had had such a quick recurrence,and my husband Robin was unfortunately one of the people who found that a positive one month post treatment appointment turned into a two month appointment recurrence and a prognosis of weeks not months from which he did not recover.
I have not answered your question because i want to frighten or discourage you,just to say feel free to ask me anything you think i may be able to help you with.

love liz

Thanks Chelle and thanks cookey. I've made the decision that I am going to stay as positive as possible, both for me and for Billy. It is really tough to try to go around as "normal" when there's a 900 lb. gorilla in the room.

I agree, Chelle, about his not being a "statistic". Well, actually we want to be one of a percentage of survivors.

Our second opinion is scheduled for this Friday, so I will keep you posted.

Thanks,

Chuck

Oh boy, lets hope for better new with the second opinion. As you will have learned from these pages, everyone's cancer is different as is their treatment. As Ananth says, your partner has age on his side, if he only lost 20 lb that's good too and stands him in good stead for any further treatment.

I think we all know on this site when the initial news hits everyone runs round like a headless chicken so it must be a double whammy for you right now and I really feel for you.

As Michelle says, stay strong and stay focused and at any time you want to scream, yell, ask questions or whatever, there is always someone here for you.

Good luck for Friday.