Hi all! My name Tim and in December of 04 (December 7th . . .another reason the day is infamous) I got my first indication that I had cancer from my GP during a physical. After 2 biopsies and 2 ENTs it was finally diagnosed as right tonsil, T2N1M0 (I guess that's Stage 3). Other than a fairly significant biopsy, no surgery was initially planned. Straight to IMRT (40 treatments) and chemo (carbo every week, 2 AUC).

My treatments were pretty uneventful and I seemed to regularly puzzle my med. team with how minor the side effects were. Eventually lost some hair, taste, dry mouth (for which I took and am taking Salagen 5mg.). By week 4 none of the drs. could see or feel any cancerous tissue. On my last radiation day, I met with my rad. onc. and he said that a better ending could not have been written. I met yesterday with my med. onc. who told me that I was doing MUCH better than most people at this point (same doctor who noted in a very puzzled tone in week 7 that my throat "[didn't] even look angry!"). The side effects are even going away within 3 weeks after treatment (dry mouth is going, hair is coming back, taste is returning, fatigue going away, I sleep again, etc).

Nonetheless, I seem to continue to have these pervasive feelings of helplessness and this will recur . . . It was easy to cope while in treatment . . .after all, 5 days a week I was actively DOING something about it, and now it is this passive wait and see.

So I guess my question is whether these observations mean anything. I can't help but think that if my normal cells were so resiliant and are growing back so healthy and strong then the cancer cells may also be similarly strong . . . The drs. say this isn't the case and they are top in the field at one of the world's "great" cancer centers . . .

I don't know. I know there are no simple answers. Maybe I just need to say this stuff to people with a common experience.

Thanks for listening.

HI Tim; A diagnosois of cancer is a pretty scary thing and is bound to leave you feeling somewhat anxious and helpless. Your whole life (and sometimes death) just passes before your eyes. It takes a bit of time to get that confidence back...believing that you have another crack at life.
I would be thrilled to bits to have received your good news and had your experience through my treatments instead of the more dismal time and tale I carry.
Sounds like you have had great treatment and good news...choose to believe it, and go easy on yourself for the anxiety..it's quite normal and also responds very well to small doses of anti-anxiety medication. It's worth the good night's sleep and the peace of mind you'll have. Ask the doc, I'm sure he'll prescribe something to help you by this rough spot.
All the best,
Fran

Tim,

I remember feeling "safe" while going thru treatment because something was actually being done to the cancer. Afterwards I worried constantly that as the new cells came back so would the cancer. Once I had my 3 month ck-up I did start to feel better. It's hard to go from a 5 day a week battle for 7 weeks and then it's over. Even though you looked forward to the last day of treatment its still hard. Then came the new worries of what happens now. Your anxiety will hopefully diminish as time goes by. I think the pain meds I was on didn't help either. Especially at night I would really panic in the early mornings. I just passed my one year and it all came back to me. In fact, today was one year ago that I started chemo and radiation. Do ask your Dr. for something if you think it might help. The feelings only get worse if you are sleep deprived!!
Take care of yourself!!

Carol

Tim, welcome to the site. Sorry you had to find us. We seem to have had similar cancers. My primary was in the right tonsil as well. But it wasn't discovered until after it was removed during the tonsilectomy. I went on to 35 rad and 3 chemo treatments for the lymph node involvement I had. After which, I had the modified neck dissection which removed the lymph nodes (35) and about 10 oz. of tissue from the neck and shoulder.

The neck dissection was optional, but I opted to have it done as I wanted to make sure all of the bad cells were out of me. That has helped me to feel better about the treatment as it started and ended by removing the offending tissues. If you didn't have lymph node involvement, you are indeed fortunate and must have caught it early. What was the sympton that made you seek medical intervention in the first place? Finding oral cancer is one of the difficulties with this disease. Perhaps your experience can help others.

Thanks for the replies everyone . . . everything is always helpful .

Honestly, I can't say that I was thrilled at what my physicians had to say, Fran. Frankly I was neutral. But that I know is the intellect in me. We are looking at things at a cellular level, so even an MRI or PET scan wouldn't provide me with total comfort at this stage. I guess that in my case, what it amounted to was "no news" and "no news" to me is just that. No news. It isn't necessarily good news.

Also, Fran, this isn't my first battle for my life. The cancer is now my fourth in 10 years. Once one gets placed under control, the next crops up. I'm tired of it . . .

While the others haven't been cancer, they have, in their own right, been equally deadly. And the one thing that I have noted in my own successes and the successes of others is that comparisons to others is not a good idea. It is your disease marked by your beautiful particularities . . . all of the little things that really make you who you are . . . so your fight gets to be fought on your turf on your terms!

The other thing that kind of adds to it is that with the rather minor side effects and my apparent quick recovery even from those, most of the people around me in support roles seem to have adopted an attitude of "this is over", "crisis passed", "problem solved". We all know that isn't really true, so it makes things a bit lonely.

I guess the good news is that I am not sleep deprived. But I can't say that I am typical in any of this. When I started I was told I would lose 20 to 40 pounds. I gained 15. I was told that it would be months to get my taste back. Wrong again, it was partially back in about 10 days and getting better every hour. Where I lost my hair from radiation. Again 6 months to begin growing back and 2 weeks later, it is coming back . . . white blond instead of brown. I'll look like a punk rocker!! Etc., etc., etc. . .

To answer your question, Kirk, I found out in a physical. This year I turned 40 and last year, anticipating this, I decided that I would get a bunch of things in order in my life. Since I race sports cars I figured that health insurance would be good (I am a contractor and don't belong to a group plan). I also figured that with health insurance, I would get a physical, etc., etc. Well, it took about 6 months to finally get the write policy (July of 04) because I was either out of area or forgot to sign a form at the right place, etc. Anyway, in August of 04 I finally had a plan.

In Late Sept or early Oct, either right before or during vacation, I felt something in my throat. It didn't hurt, so I didn't think infection. It was uncomfortable. It felt like a piece of lettuce lodged there. It came and went so it didn't seem pressing. I got back from vacation about Nov. 1 and that following week I made an appointment to get a physical on the 7th of Dec.

By this point, I figured there was something wrong in my throat, but didn't think cancer and was getting a physical. I didn't worry.

December 7th rolled around and my GP looked in my throat and said "You have a problem. Go get an x-ray and a CAT scan. Today. And here's a referral to an ENT" And literally he was that instantaneous about it. No waffling, no uncertainty, just go!

So I went. The X-ray was clear as was that CAT. The ENT (I eventually decided he was a quack) did a small biopsy (14th of Dec.), the results (21st of Dec.) were SCC, right tonsil, in situ, risk of invasion present. In a couple days I had been in contact with a fairly prominent critical care physician who himself had just celebrated 2.5 years post-treatment (Stage IV) and he referred me to my team (not affiliated with his hospital).

The new biopsy and PET scan showed T2 (again in situ) with one hot node. My Tumour Board felt it best, with the hot node, to treat the primary tumour as invasive (subsequent pathology showed there was some invasion).

40 Radiation treatments and 8 chemo later, here I am.

A decision is to be made sometime between April and June as to whether a neck dissection is necessary or mere an advised option. Today I am not up for that decision.

I had SCC in the right tonsil and it was pretty advanced. My experience wasn't that much different from yours. At the midpoint of treatment the tumor (which was 6cm x 3cm) had completely dissapeared ("melted" as they called it). I didn't get excited about that and even 2 years later I still have a little nervousness. It seems to get better as time goes on. I am reading Lance Armstrongs new book "Every Second Counts" and he shares a lot of his feelings about life in the post Tx.

They always had "salvage surgery" as a option but it wasn't needed.

Last week went in for PET and CT. I am 6 years out, and while a normally balanced kinda person...the weeks before my scans were full of 4 am wake ups and minor panic feelings, sweaty palms etc. For sure I am not that tough guy, point walker, don't screw with me 'cause I'll bust your chops kinda guy I was years ago. Coming close to death then in a foreign country or via my cancer later in life put the fear in me. Took the strut and confidence in my invulnerable nature and tossed it out the window. Fear though internalized and coped with, is a subconscious, intrinsic part of who I now am. It sucks