Well I finally got the pathology results from my surgery and it turns out that while the margins around the tumour were great, the cancer did show up (in microscopic amounts apparently) in 3 out of 30 lymph nodes. None of the lymph nodes showed any visible sign of infiltration - discovered during the pathology.

I should note that my surgeon - upon seeing how upset I was today - told me not to panic yet - he would tell me when it was time to panic, but that we weren't there yet. I was happy to hear that positive slant. He also however reiterated that each of us gets up in the morning and has no idea whether we will successfully see the end of the day so life is unpredicable, as is this cancer.

At my first cancer surgery I had 32 radiation treatments - not IMRT - just regular radiation and a partial glossectomy. I did not have chemo at that time.

While I have not discussed this with the radiation doctor, I may not be eligible for re-radiation. It has been 3 1/2 years since the last surgery/treatment. I see the radiation doctor next week.

My surgeon says there are options at this point.

One option is to "do nothing - wait and see - regular checkups". The surgeon said they DID remove the nodes that were cancerous, and he has no indication that there is any cancer anywhere else in my body. They will be doing another MRI in January. Obviously it would have been better if there had NOT been any lymph node involvement, but that isn't the case here. My feeling about this option is that we are dealing with an aggressive disease and should be just as aggressive in our approach. I think. Maybe.

My initial thought there would be that there is no downside (aside from norman chemo treatment effects..horrid as they are, but apparently they would be able to have another bout of chemo should the need arise - not like radiation. My first cancer was base of the tongue - 2nd was other side of the tongue but further forward - classed as "oral" rather than BOT. I note in many of your posts that chemo seems to be a routine issue for cancers which sound VERY similar to mine, yet my surgeon agrees that here that does not seem to be a common practice. I have no idea what difference a border makes here (Canada / US) but there definitely does seem to be a difference. mal chemo ugliness/sickness, etc) in taking chemo. Sounds to me that this might be the "better safe than sorry" option in case those miserable lymph nodes have spread their poison.

Another option would be to pursue newer types of radiation - either here or in the States.

Any/all, please feel free to throw in your comments - they will be welcomed. And, thank you all. It was wonderful to know where to turn with my question that I know only you people will understand.

Donna

Donna, As you know well, there is tremendous temptation to look for / wait for the PERFECT answer. The perfect tx plan. Its a myth. Nearly every tx plan is best guess. It sounds like you are doing things right. What I don't hear is that second or third opinion about what you need to do next. Who else can you consult? Can you send reports and slides to a different set of docs and get their spin? A good treatment plan begun a week or two later is much better than a hasty plan begun right away.

Aggressive disease? Yes indeed. Aggressive treatment needed? Yes indeed. Is time of the essence? Of course. But don't get bullied or hurried into a treatment plan that you don't feel right about. Make your docs CONVINCE you they are right. Be a "tough customer", a "hard sell". They can take it, and you'll feel better about whatever you decide.

I had buckets full of chemo and so much radiation that I glowed in the dark. I had a great treatment team and a very good plan. Cancer left me alone for nearly five years. Not bad. Keep gathering ideas Donna. Keep getting opinions. You will know when you have enough to make a decision. We are with you, Tom J

Hi Donna,

I'm curious why are they only getting you your path report now? When was your surgery?

I had T2N0M0 and was given surgery (full glossectomy due o where my tumor was)radiation and chemo- 3 rounds of cisplatin during the radiation. The chemo wasn't that bad at all (for me) they gave me lots of drugs to control any and all nausea. My bad side effects were mainly from the mucositis from the radiation - allt he mucous made me sick to my stomach. They thought that because I was in so much pain prior to surgeryt hat the cancer could have possibly traveled via my nervous sytem so they didn't want to take any chances- especialy becaus I am only 34. I would maybe get some 2nd opinions and have your case seen by a tumor board at a major Comprehensive Cancer Center.

I'm so sorry that you had a reoccurance. I know that you probably are anxious to have this all be behind you.

Despite all my very aggresssive treatments I am doing pretty well now. My speech is obviously not great- but I can eat most everything and communicate fairly well.

hoping you aren't feeling too badly. I know all this is nervewracking!

Miss Kate

Thanks for the replies so far - more input is welcome!! The full pathology took 5 weeks. The surgeon knew in the operating rooms that the surgical margins looked good (confirmed in pathology), it was the lymph nodes that needed further examination. Apparently one pathologist retired, another on health leave and so the system has "bogged". Our Canadian health system is certainly not perfect - mostly in the area of waiting times - but upon reading Tom's message today about the financial drain that people in some countries experience - especially his comment about "What happens when poor people get sick? There weren't any poor people in our chemo rooms" I can start to feel my anger at the pathology delay melt.

Any more thoughts/experiences would be more than welcome - you people have been there! Also, if you have links to any places on the net that might help me make that decision, those would also be appreciated.

Thanks all.

Donna

Oh K! I'm so sorry. I thought that your surgery had been early october. Well 5 weeks must be about right then. Oh Donna - I didn't mean to add to your worrries! I'm so sorry. The US University Health system can be just as beaurocratic - I think you are proabbaly in very good hands abut its great that you ar eexploring lot sof options.

Keep a positive upbeat outlook and don't worry too much about things you can't control - it will help you deal with all that is thrown your way.
I know its so totally nervewracking - the not knowing the waiting and the searching for treatment options and answers... but stress and worry isn't good for you now.

lets just go with the outcome of everything is going to be great and you will be healed and healthy- because that is going to propell you forward right now and not muttle your mind with spiraling anxious bad negative thoughts (sound like I know from experience eh? )

thinking of you and keeping you in my thoughts and prayers. hoping and praying for great news.

Get some 2nd opinions and options for treatment and you do what makes YOU feel comfortable.

XO miss kate

No problem Kate! All input & experience that any of you might have had with chemo decisions would be great. How do I decide what to do?

Donna

well my Drs decided for me after meeting all together on my case they decided the best reccommended treatment plan to go with so I went with that. I would be as aggressive as you can be. XO K

Donna: I'm sorry I don't have any suggestions for you...but I'm sure you will make the right decision after meeting with your doctors.

Just know that we are thinking of you, and wishing you well during this trying time.

Lois & Buzz in NC

Donna, I went with my surgeon's recommendations first time and this time.....I am thinking of you and wishing you well.....it is a scary nightmare, isn't it? Love, Carol

Hello Donna. I just saw your e-mail, so this may be too late to assist you in making your decisions. My husband (57)was diagnosed 2 years ago with scc at base of tongue,stage 2/3 HPV 16+. He was treated in Ottawa, but prior to treatment we went to Johns Hopkins in Baltimore for a 2nd opinion (cost $600)& they agreed with treatment plan that ottawa docs had planned & said he couldn't have surgery, which at that time I recall was the most standard approach in the US.Our chemo oncologist here said if we wanted to see the best docs for head & neck cancers, go to MD Anderson in Houston. So we do that every 6 months but there is no comparison between the check-ups in the 2 countries: in Houston we see the surgeon, the oncologist, & most importantly he has an ultrasound of his lymph nodes but yet another separate oncologist who does only that all day long. He also has a ct scan, blood work each visit. Pathology results take 1.5 hours to come back. It costs us about $5-6,000 each trip. He also still sees his docs here every 3 months, altho we only saw the oncologist 1 or 2 & now only see the surgeon.You can't put a price on your health & your life. If he were ever to need surgery, there is a good surgeon in TO who the oncologist @ MD Anderson knows as well. We could not likely afford the surgey in the US. Hope this information helps.