My story:
I am 43y old male, married, father to a 6y and 2y daughters. I live in Ancaster (a suburb of Hamilton, Ontario, Canada... near Toronto). I have been a registered nurse for over 20y.
I noticed a lump under my L jaw in late summer 2011, got an ENT appt and FNAB, and was told SCC Sept2/11. An appt at my cancer center could not find the primary. Sept21/11 left tonsillectomy confirmed it. Started 35 IMRT, 3 Cisplatin week 1,4,7 on around Oct17/11.
I had a setback, stomach tube infection after my 2nd chemo and rads were suspended a week. I finished treatment Dec12/11. Near the end of treatment I was told I was p16+ (protein marker for HPV). I never smoked tobacco and I am not a drinker. I socially smoked marijuana since I was 19, there were years that I went without especially the last few years having had children, and times at peak, I smoked once/twice per week. I think that will haunt me despite being p16+ as it would increase my risk I believe.

I currently give myself 2 cans overnight via my tube and drink 3 through the day, eventually I will drink them exclusively. Every few days I try to eat something. I know I have several months of healing in front of me. I am currently down about 11lb from my healthy wt of 145lbs in the summer.

Lately, I've been worried about the residual lymph (was 1/2 golfball, now 1/2 peanut). A white piece of (scar?) tissue on my L tonsil bed before I started treatment, and an open sore on the L side of my tongue at the back. In essence, that treatment was not fully effective. I did not suffer mouth sores through treatment.
Being stuck at home and internet access is terrible for anxiety... stats, recurrence, teeth problems for survivors, you name it.

I see my chemo onc Jan4, and rad onc Jan13/12.

Hey Roger and welcome. I'm sure someone who has walked in your shoes will come along soon to offer words of encouragement. Know there are many others who are dealing with or have dealt with similar issues. Last night I read a very long thread on these boards about trying to not dwell on the past or look too far into the future. Easier said than done, I know, but something to remind yourself of when the tension within begins to rise. Peace, Laura

Hello Roger!

I remember those feelings of anxiety after treatment...will I live? Will it comeback? Will these side effects ever stop? What will my life be like if I live...it get's better Roger.

You're very fortunate to have found these forums as early as you have, it took me almost a year after being diagnosed to find this little oasis on the net filled with others that could relate to me. You're in good hands here my friend. I'm now about four years out of diagnosis and I can tell you, it get's better.

I wouldn't beat yourself up too much about the marijuana use it's VERY unlikely that it's what caused your cancer. If you are not using it now I would actually encourage it, just don't smoke it use a vaporizor instead. It's just going to help with the anxiety, depression and motivate you to eat while assisting in pain management.

Just have your medical team keep on top of any concerns you may have and stay vigilant, it's all you can do really so there's no reason to keep those feelings of anxiety, what will be will be you know?

My advice, grab a few cans of Ensure, put Pineapple Express in the DVD, take a few hits and watch the anxiety fade into giggles and the need for junk food.

Welcome aboard brotha, glad you found us!

Eric

Roger, welcome to OCF. Congrats on finishing your treatments. I know they are rough but now you are finally finished and can start to heal. Keep up the good nutrition with high calories and hydration so you heal faster. High protein will also help. I use a high protein powder that I mix into my feeding formula. I also add extra water so I am sure to stay hydrated.

I know it can be scary reading other people's stories here and all the misleading 'facts' you can find elsewhere on the web. Knowledge can be scary but it can also allow you to know what to look for when you have an unusual after effect pop up. Just remember everybody is different. Im not one who focuses on the stats, Ive had OC 3 times so I already know I am living on borrowed time. Just knowing that helps me to make the most of every single day. I know its not always easy to see your own good fortune but one day you will see how far you have come and realize you have made excellent progress.

Best wishes with your continued recovery.

Hi !!! Try not to freak out too much, you're through the worst if it (and the web is great for information, but scary too.) - usually HPV+ cancer responds very well... Have they biopsied the node? you have to heal of course but a neck dissection though not easy post rads - is possible. But your body is just now beginning to recover so give it a bit of time. Were you at the cancer center up on the mountain? (I'm from Toronto, but my mom was treated there for her lung cancer). I'm surprised they didn't determine your HPV status prior to treatment. There is often a difference in how HPV and non HPV cancer is treated.

Keep chugging away at the ensure - it kept me going for the few weeks I wasn't able to eat. I would worry about the past what's done is done no point in beating yourself up over it. I'm a non smokin, non drinking, non drug doing, vegetarian - and I still ended up with cancer. Now I'm doing whatever I can to stave off a recurrence but there are no guarantees. I too ad a sensitive area on my tongue from rads - it still has its moments when it spends too long rubbing against a molar. This is par for the course.

Welcome, sorry you have to be here. Rest up, and try to heal. It takes a while but you'll get through it.

Hi, Roger
the MJ may have impacted your immunity a bit, but the data I have looked at seems to show more correlation then causation (I'm not a medical professional or statistician, - just my somewhat educated opinion). It's not worth beating yourself up over; that energy is better spent on healing.

The radiation effects on my husband's tongue took a long time to heal.

If you have looked at the NCCN guidelines, you already know that your doctors will take what measures are needed if they are concern that they haven't gotten everything. The fact that the LN is so reduced is good; your docs will determine if anything further is needed.

Words have power over our feeling. When I was discussing my husband's future as a cancer survivor, I mentioned the sword of Damacles (sp?). She turned the words on me, and said we had to be vigilant - a much more positive and proactive term. When I got my diagnosis of lupus this fall, I realized that I need to be that way about my own disease.

Best wishes with the waiting, and try to enjoy your children over the holidays!

The Damocles of the anecdote was an obsequious courtier in the court of Dionysius II of Syracuse, a fourth century BC tyrant of Syracuse, Italy. Pandering to his king, Damocles exclaimed that, as a great man of power and authority surrounded by magnificence, Dionysius was truly extremely fortunate. Dionysius then offered to switch places with Damocles, so that Damocles could taste that very fortune first hand. Damocles quickly and eagerly accepted the King's proposal. Damocles sat down in the king's throne surrounded by every luxury, but Dionysius arranged that a huge sword should hang above the throne, held at the pommel only by a single hair of a horse's tail. Damocles finally begged the tyrant that he be allowed to depart, because he no longer wanted to be so fortunate

Welcome Roger. Congratulations on making it through that hellish treatment. The tumor in my neck didn't go away all at once either. 3 months out from treatment it was still there though much smaller. 3 months after that it was gone. There are a lot of post radiation issues, most of which fade in time. Good luck to you on this continuing journey.

Hi Roger

Don't beat yourself up over the MJ. I am a trials and statistics person so the first thing I did was go looking for studies that would show that MJ increased the risk of either OC or a recurrence in order to convince my Alex to give it away. You know what? Couldn't find anything of any weight to show that MJ had any compelling involvement in the development of OC so made the emotional appeal instead (the logical leap).

Remember too that you have been diagnosed with an HPV+ve tumour which suggests your cancer was not caused by smoking of any kind. On the plus side, although treatment for HPV+ve tumours are currently the same as for other types of OC, the prognosis is better.

A relatively recent proposition is that HPV+ve tumours may respond to a less brutal treatment (eg less rads or no concomitant chemo) than the accepted standard. My Alex was HPV+ve. Would we have entered a trial that gave him anything less than the currently accepted treatment? No. And therein lies the problem for such a trial...

Having said that, I think I read somewhere that such a trial is either being proposed or conducted but am unsure of this.

Yes the teeth issues are scary. But remember the positives: it will keep you more vigilant with your oral care won't it? You won't miss any more dental appointments will you? And if you are someone who has perfect pearly whites, then remember ORN is a relatively rare complication and probably won't happen to you - especially if you keep those dentist visits up.

May I also suggest you keep a journal to log your progress. When you get frustrated and feel you are not moving forward fast enough, you can read back and realise that today's bad day is a vast improvement over last month's bad day. My Alex regularly tells me that he is struggling with this or that issue and a reminder of "this time last year/month/week" helps put it back in perspective (along with lots of sympathy and cuddles). Alex can no longer remember many of the details of his tribulations which I guess is his coping mechanism.

Roger Welcome to OCF!

Congrats on finishing treatment, now on to healing!

I understand that you tested + for p16 but did they give you results on HPV?

I was a weird one and tested +for p16 but -for HPV, go figure!

Hi David,
Your residual lymph node dissolved on its own in 6 months?
Meaning your scans showed no activity in it?

As far as anyone knows, is that common?
Thanks
Roger

Hi, Roger
I don't know how common it is for lymph nodes to take a while to resolve, but it certainly does happen! How did your appointments go this month?

Hi Roger,
Kevin's nodes dissolved during the chemo only phase of tx. By the end of the 6 weeks they were all back to normal. He had many involved, but did not have any surgery. The rt and chemo, we hope, finished them off!! You can see by our signature we aren't far out of tx. It really does get better rather quickly. It just doesn't feel like it the first few months. There will always be residuals though, I'm sure.
How did your appts go this month?
Kathy

I had my follow-up appt with my RO Jan13/12, he will be the one following me for the next 5 years. Canadian health care is universal so it's basic, no scopes, no full body PET scans. I will get a H&N contrast CT in March and then 3 months later to see if the residual changes, neck dissection if necessary; annual chest x-rays. My RO was quite optimistic and said there is no reason why I shouldn't think I'll live another 40y when my wife asked about 5y survival. He is confident the small residual sliver of node is scar tissue and says residuals are common.

I am positive but I am also an evidence-based person. PETs would have been better, even periodic scopes but they just don't do that here, it's not covered, and there are no second opinions unless you "fire" your specialist and one of their colleagues takes over. Even then with a new specialist, my RO said they don't go "searching" for problems which seems not pro-active when local recurrence or mets outside the H&N area is possible and a great concern for OCF patients, especially in the first few years. I mean I don't dislike my RO, he is a good specialist, accomplished and has published research articles; he is just following the Canadian system and protocols.

That said, I finished Dec12/11 and I feel pretty good right now. In fact I think I am on the better side of most being only 6 weeks out. The skin on my neck is completely healed, I have no mouth sores, my mouth is not always dry, I am eating almost anything but not dry foods often because it is extra work to chase with fluids. My taste is returning, sweet being the weakest. Stomach tube was removed a week ago. My throat is hurting less and less to swallow. I am 5lb under before this all started.
The lower back of my head is stubbly and I maintain a military haircut to blend the lack of hair. My hearing is slightly diminished probably from the Cisplatin. My energy level improves every few days and my sleep and nap patterns are approaching pre-diagnosis.

In general, physically, I feel better than I thought I would, I look great to my family and friends, however, mentally, my mind plays on me. As alluded above, the lack of follow-up PETs and scopes bothers me which makes me hypervigilant moreso of any new lump, pain, or symptom (I'm sure many of you are like that already). I could always cross the border and pay out of pocket for a PET. I fear recurrence, and I think about longterm rad issues. Ignorance is bliss and there are times I try to do things and not think about it at all.

Hi, Roger - I pm'd you on this. Check in My Stuff.

Roger - scopes should be a regular part of every check up. I am at PMH - every time I see a specialist teu scope me - and IV had 2 ct scans post treatment and wan another at the 1 years mark. You're right our system isn't proactive - sometimes you have to push!!! Good luck!