Thank you Gloria for your patient listening and for your generous offer. I (we) May take you up on that at some point.

Met with RO and surgeon yesterday. They (finally) had the results from all 3 scans. The PET scan result is inconclusive about whether cancer is still active. My impression was that PET was going to be able to tell if swelling and pain in tongue and jaw area was being caused by radiation damage or by new cancer. I was wrong. The oncologists are sufficiently concerned about the area that they are treating my case as though it is a recurrence of cancer until they see conclusive findings to the contrary. That means that they are expediting new MRI and CT scans and performing a biopsy on the area next Monday the 10th.

I’m not even sure how I feel about things at this point. On the one hand, it will be devastating if cancer is back so quickly. On the other hand, I’m glad that they are treating things like an urgent priority and I should find out one way or the other after the biopsy is complete (hopefully?).

After reading on here the invasive nature of the surgery required it is going to present a real physical and emotional challenge. Especially so after having been beaten down by the radiation and chemo treatments to date.

Thank you all (again) for providing this forum as a place to vent and unload the emotional burden. I always seem to feel a little better after writing a progress update - good or bad - on here.

Barry

Barry,

I’m sorry the news doesn’t look too good at this point. I find that sometimes it is the not-knowing that is the harder to deal with.

John’s experience made me really appreciate the Canadian health system, despite the fact that many people complain. We always got the feeling that the doctors were looking out for us and once there’s a diagnosis, there’s no delay, everything was dealt with as soon as possible. The experience has taught me never to complain about the high taxes we have to pay. I believe we got back more than we ever paid out in taxes through John’s cancer treatment.

There are really skilled doctors doing the biopsies. John had two lung biopsies because his metastases were in the lungs. The doctor said it was like poking a needle into a balloon without it bursting. Both times went off without a hitch. He was up and ready to go home in a couple of hours. He was given some freezing and he was able to ask for more if during the procedure he felt pain.

Maybe you would also like to inquire about immunotherapy if the results do turn out to be positive. John was in a phase 1 immunotherapy trial (prior to that, the drug had only been given to monkeys). Our MO at the time was full of optimism about immunotherapy and felt there’s a lot of potential down the road. It’s been about five years since so maybe they have made big strides or some other new drug or treatment is now available. It’s for this reason that I buy the Princess Margaret Hospital lottery ticket every year because the proceeds go into cancer research. Don’t give up hope.

Please let me know how you’re doing. I’m here and when you or your wife are ready, pm me.

Hi everyone. It’s been a while, so an update on my progress (aka, therapeutic venting session).

Met yesterday with RO and surgeon. They had (finally), results from biopsy, CT and MRI scans to determine if there is a recurrence. What a mix of news. The good - biopsy negative for cancer and both scans showed no progression in the suspicious mass in my tongue area. Yay!

The cautious- based on my symptoms and their look at my mouth, they are still suspicious that something may be “smouldering” down there and have scheduled an additional biopsy and mri scan to keep a check on things.

The clunker - the scans confirmed previous worries that the location of the suspicious mass would make me a bad candidate for “salvage” surgery. Surgery would require removal of jaw, tongue, some palette; would leave me a basket case; would have a low probability of success and would run a decent risk of killing me.

They used a lot of “cancery” words like “margins”, “quality of life”, “morbidity risk” and stuff, but I’m pretty sure of what they were telling me. “Your biopsy was negative which is great news because we can’t do much for you if there is a recurrence “. Hard to hear because that was (pretty much) my plan b. We talked about other chemo drugs and immunotherapy, but those were offered as a way to slow the growth of a new tumour and prolong life but not so much a cure. Short story? I’m “all in”on cancer not recurring.

Strange thing is that I’m feeling well. Energy mostly returned, relatively pain free, resuming most all activities, haven’t gained back much weight but otherwise feel well. Psychologically speaking less well. Have an appointment with a therapist on Monday to get some help with coping with feelings of fear and vulnerability and being more empathetic with friends (and spouse for that matter) who don’t seem too truly “get” cancer patients and the (unique?) suffering they endure.

Thanks again to this forum for allowing me to vent. It is really helpful and I feel stronger already after having written this. Best wishes to all of you who are fighting this disease or have loved ones who are. Live each day like its your last!

Barry, I’m sorry to hear the biopsy result. The kind of surgery you mentioned I’ve heard about before from one of the doctors who was at the time a fellow. It sounds totally brutal to me. Did your doctors mention drug trials? It’s something to consider as well. The chemo and immunotherapy that the doctors mentioned, if you agree to it, will mean you continue to be in the care of an MO, which I find a good thing (there’s probably some dependence there) rather than being sent back to your family doctor right away. John had a CCAC nurse (what do they call them now?) come to the house to give him support every week. So, it’s not a bad thing to stay on the MO’s radar. I’m glad you are seeing a therapist. I find it helpful myself and I think John did too.

Im so sorry to hear of your doctors "suspicions"!!!! You have already been thru so much. Im happy to read you are "all in" and will continue instead of being defeated.

In 2009 after 2 consecutive years of being diagnosed with OC, I heard my doctors tell me something close to what you just got from your docs. Please feel free to PM me anytime if you have any questions you would like to ask me. Dont go too much by my experiences... I had serious complications. Bottom line is I survived and am still around to help you and others facing jaw removal surgery. Its NOT an easy road but it definitely is doable.

Best wishes with everything you are dealing with!!!!

Thanks for the comments Gloria. To answer your questions:

Doctors didn't mention drug trials - I don't think we are there yet. They did mention some chemo drugs and immunotherapy which I gathered were part of a trial and error process, so maybe they did?

Sunnybrook has been really good. I don't see any sign that they are about to send me back to my family doc. The RO, MO, surgeon and Palliative Care doctors all seem engaged in my case. I still have a calendar full of appointments (for better or worse), but I will keep an eye on them.

I had a home care nurse during chemo to administer fluids to flush the cisplatin. Honestly, I am not sure what a home nurse would do for me now. I am feeling good and living as normal a life as possible. Biggest problems are the fears and insecurities associated with facing your own mortality at an unexpectedly early juncture in life.

Thanks again, your contributions on here are always thoughtful and must take you a long time. You are obviously committed to the cause.

Thanks Christine. Your indefatigable courage and persistence is exemplary. I always appreciate your comments on here.

Im here to help Barry, just let me know if you need anything and I'll do my best to help.

Its a very good sign to hear you are feeling so good!!! You will need to be in the best possible condition as you can going into whatever path you will be on.

When I was told to get my affairs in order back in 2009, I was shocked. I was feeling great, so good that I considered the biopsies to be a false positive. I had just finished a 25 miles bike ride with my son thru the beautiful Pocono Mountains and the next day I got the bad news. Of course, my thinking was not at all rational, it was wishful thinking and for a short time I was in denial that the cancer was back again! Knowing everything I had picked up from OCF websites and other members, I knew my chances of survival were slim. As the realization I had cancer... again, slowly sunk in, I started to focus on the positives. I already had my medical team. Since I was feeling so good, its a great sign. By feeling so good, that meant I was going into Round 3 strong, much stronger than I had been in at least 4 years. I would need that strength to survive such an invasive surgery that would be around 10 hours long. One of the biggest things I had going for me is the wonderful supportive members here who were in my corner. You too have many people behind you and who will be with you thru whatever route you take. To me, it really does help to think positively and know you too have a great many supporters from all over the world cheering you on.

Thank you (yet again) Christine. Your comments are both very touching and inspiring. The cancer centre here in Toronto has a fitness centre and classes specifically designed for cancer patients. My “wellness assessment” to test for preparedness for exercise is this afternoon. I think it makes sense to work extra hard to prepare for whatever is coming.