I saw my RO yesterday for a return to work authorization so I could get back to business Monday, exactly two months after wrapping up chemoradiation. Instead I got an urgent CT appt. for Monday and a followup appt. with a surgeon. I have an ulcer/soft tissue necrosis. It's right where they excised a cancerous retrophangeal node and within the area most heavily radiated.

If neighboring tissue doesn't light up it's "just" necrosis and HBO treatments are likely. If it does light up a biopsy is in order. They don't want to biopsy it immediately because apparently that can make necrosis worse.

[sigh]

Chemoradiation knocked me for a loop. I made it through all of my radiation, but only 1 and 1/2 cisplatin megadoses. I couldn't keep ANY food down for 32 days and wound up in the hospital for 8 nights after treatment ended. Recently I really turned the corner and have been feeling pretty good, just the usual side effects.

How likely is it that the cancer could recur in the area most heavily treated?

We're decorating our Christmas tree today. I'd been in celebration mode until this development, it's hard not to feel its shadow.

Anything is possible, as well as necrosis. The doctors are doing the right thing by following up. As for now, there is not much you can do, except try to enjoy your holidays, and deal with the results as they come in, which is easy to say, and been there many times myself. Keeping busy helps. With the holidays there is no shortage of that, plenty of movies, specials in TV, foods, events, friends and family visiting, celebration.

Good luck.

I will be hoping it's just necrosis... And ulcers are the norm post treatment, fingers crossed.

Praying and hoping for the best. xo

It's just like Paul said above, stay busy and refuse to worry about what this is or isn't. If it's cancer, then we will all fight it together, you know you will get all the support in the world from your brothers and sisters here. If it's not, we will rejoice together. Whatever happens, we will accept it and move on, ever positive about the future.

It really is as simple as that.

Keep fighting the fight.

Tony

[quote]How likely is it that the cancer could recur in the area most heavily treated? [/quote]Based on your sig, you finished rads around 6 weeks ago. I'm no expert and no long time member but I'd place a BIG bet it is not recurrence so early after rads, especially if the results of the surgery were good and declared clear margins.

Thank you all for your support and calming words. I was lucky to get an early Wednesday appointment with the surgeon, so happily no long wait for the diagnosis. Sorry to have sounded so very pathetic, I was definitely feeling sorry for myself.

It was not pathetic or feeling sorry for yourself. It's a true concern about your health. Even if so, never worry for your feelings, whatever gets you by, how you feel at the time, and can change as the weather does. That's a real person to me.

This is a place where you can say it like you feel it -we've all had worried times.

It's good you got an appointment so early. We've all worried and waited and it is NOT "feeling sorry for yourself". It is having compassion for yourself and that's a good thing when it gets you to take action like you just did. Hang in there.

So very glad your appt is tmw. Will wait with you to hear.

Great news, my biopsy was negative for cancer! I did have one area of "abnormal cellular activity," which the docs think is due to inflammation. So the mysterious sore that showed up months post-treatment is a rare late-onset radiation ulcer. It's particularly puzzling since I actually had very few mouth sores during treatment. In my head I've worked it around to reassuring evidence that the rads did blast the heck out of my tonsil cancer!

Next week the docs will start me on a vascularization drug to promote healing of the ulcer. They're reluctant to go straight to HBO, I'm not sure why.

Now that we know this isn't a recurrence I'm realizing how truly frightened I was. Neither surgery nor radiation would have been good options. But since it looks like I'm going to live, I guess I will have to start doing the laundry again and work as though I want to keep my job .

Thank you all for the warm and steady words of encouragement, you have brought me through yet another storm -- I'd be sunk without you.

Hugs,

Lynn

So happy for the great news, Lynn! It's always SO wonderful to get good news after the awful waiting for results. YES! Now you can live, laugh and love! Don't just do laundry, though. Do something fun!

Yeah!!!! The fear is always there - it lessens with time, but it is still there... Hbo as far as I know is very expensive and very disruptive (an hour or two daily for 20 days?) for a mouth ulcer. It sounds a little like overkill.
I had a Nasty ass ulcer that became an issue for about three weeks and this was almost a year after radiation - I think it was a hold over to be honest. It may have been there from the end of radiation but untreated it got deeper more it irritated, and painful etc. Anyway it looked like it was either where one of the rad beams entered or exited my mouth./tongue (There was a matching burn area the same size and shape across from it on my lower cheek - internal - I actually was purplish. Anyway my ENT prescribed oracort - directions said use twice a day - that helped only minutely - so then I made a habit of keeping the area super clean, after every meal or drink I rinsed or cleaned my mouth then applied the oracort - within three weeks it was gone. hopefully this will heal quickly for you.. Do try to keep the area clean and minimize irritation to the area if you can. Hugs

W H E W !!!!

Thank you! You're right, Anne-Marie; laundry is no way to mark this occasion.

Cheryl, you're not kidding these ulcers can be nasty. After being almost off my PEG, I can no longer eat even with magic mouthwash. I only needed oxy 2 or 3 times during treatment, and now I'm on it 24/7. Worst is that it hurts terribly to talk. Maybe HBO would be overkill, but if there's no improvement at the 8-week mark I will press for options.

WHEW squared, David!

Thanks for this thread. I am pretty much right where you were. The PET scan shows reason for concern after treatment, and I have new sores making it difficult to eat, after having felt that part was over.

Unfortunately in my case I have to wait a few more weeks to see my ENT.

Don't wait - go sit in his office and wait for a cancellation.. ;o) hugs

Mamacita,

I am so glad to hear the great news! I am sure you are relieved.

I also had mouth ulcers during RT and then for months after treatment ended. I wasn't able to eat solid foods and was on pain killers for a long time (fentanyl plus lortab) plus the magic mouthwash and another mouth wash.

My doctor discussed HBO with me also but put me on a drug called trental along with vitamin E first. This did help somewhat with my mouth ulcers, but I did end up going through HBO because of the ulcers and some other issues that developed. HBO is time consuming and expensive, but it did help.

Wishing you the best!

Mamacita - I too am glad to hear the good news. Sorry you have such dull choices to celebrate, like doing laundry and working for a living. A week on a warm, sun bathed beach somewhere in the tropics with a frozen margarita seems more appropriate than the overcast and frozen snow covered north that is Wisconsin in winter.

But what I really wanted to say was I noticed what you said about the members of the forum family pulling you through this.

I was talking to someone just the other day and she said that I was so lucky to have a lot of friends that helped get me through it. At first I agreed as I am blessed to have a lot of friends who kept up with me, and called me, and offered to do things for me (driving, shopping, house cleaning, etc). But then all of a sudden I realized they weren't the ones who kept me sane through this ordeal. It was my brothers and sisters here on the forum that did that, people from all over the U.S., from Canada, even from Europe; people who answered my posts in the middle of the night because I couldn't sleep, people who knew just what to say to reassure me that I was okay, I was going to get through this just fine. What they did was incredibly important, and occured at just the right time.

Tony

Whoohooo Lynn, congratulations to you. My hubby and I got a scare before his radiation but I kept thinking 'its inflammation'. It was only once we got the good news and he was finaly all clear that I realized just how on nerve ends I was. Yooopeeee happy for you. As for the sandy beach, that's exactly where I told my husband I wanted to lay for a couple of weeks, and I am not usually the type but right now it would be so good and so right!
Sophie