And so my Journey Begins . . .

Update 21 Oct 2022: Had biopsy yesterday and everything went good. Removed .5 cm of tongue neoplasm and did a needle biopsy of lymph node. Said lymph node had a bunch of white fluid/puss. No pain after biopsy or next day(today).

Update 28 Oct 2022: Saw the ENT for the follow up and as expected it’s cancer. Squamous Cell Carcinoma (SCC) Hpv16+ T2N2bMx to be exact.

(T) Tumor: So a 2 = is 2 cm or smaller, and the depth of invasion is between 5 and 10 mm. Or, the tumor is larger than 2 cm but not larger than 4 cm, and the depth of invasion is 10 mm or less.

(N) Node: N2b = Cancer has spread to more than 1 lymph node on the same side as the primary tumor, and none measures larger than 6 cm. There is no ENE.

(M) Metastasis: Mx = x which means I wait for the pet scan and the oncologist. The x will describe whether the cancer has spread to other parts of the body, called metastasis. This is for all oral and oropharyngeal cancers.

How’s it looking you ask? Well the bad is that ENT said it is cancer, probable stage 2. He took out most of the mass on the tongue during the biopsy op. The good is that it’s HPV p16+ which responds very well to treatment and “Favorable Prognosis Regardless of Tumor HPV Status”. The oncologist could downgrade it to stage 1 because of the HPV p16+. Survival rate for p16 positive, HPV ISH positive SCC is 86%ish. So hopefully I’ve caught it early. Will update after pet scan and oncologist visit.

11 Nov 22 Update: Had PET Scan on the 9th and the Oncologist yesterday the 10th. PET Scan showed that it had not spread anywhere other than where we knew it to be, Base of Tongue (BoT) and the left lymph node. Since it had spread to the lymph node the Oncologist called it Stage IVa. Rest of my health is very good so that's a big plus for me. So the Oncolgist, my wife, and I sat down and I asked her all my questions. I had a list prepared before I went. Everything went as expected from what I’ve learned on this board. I got a bunch of paperwork suggestions from the nurse (nutrition, Super Calorie shake, magic mouthwash, fever, nausea meds, etc.).  I 100% don’t want the PEG tube but I’m going to get it. Just the idea of it I have to get past. While there I got my lab work done and got a flu shot. So it’s 3 Chemo’s (Cisplatin) and most likely 6 weeks of radiation. Referrals went out right after appointment for the Radiologist and the PEG Tube people so I’m waiting on the phone calls. I figure with Thanksgiving coming up I’ll start Concurrent Therapy (chemo and Rad’s) first weekish of December. Won’t really know until I speak with Radiologist. I want to go on vacation 20 – 23 Nov with the grandkids without the PEG so that may hold me up a few days but Oncologist said that was fine. Until then it's more research and developing my game plan for the treatments. Making sure I have all the stuff I want in place (meds, Biotene’s, Boost’s, etc.). I’ll start putting on some good weight, continuing my 3 mile walks as long as possible, and start jaw and neck stretches. I’m figuring key to this will be nutrition and hydration. Better I do on those the better I will be. This will be a test of will for sure. I’ll use this to better my diet, overall health, and me as a person. Got to have goals for this. Maybe even start that horror novel I’ve been wanting to write. Waste not want not the say! The facility where I’ll get the Concurrent Therapy is 15 minutes down the road so that’s a big plus. I feel like things are progressing at a good pace. So basic timeline, so far, is from biopsy operation to treatment start will be 6 to 7 weeks.

16 Nov 2022 Update: Saw the Radiation Oncologist (Rad Onc) today for about 2 hours initial visit. He explained a lot of what, why and when. Knowledgeable, experienced, and patient doctor, slightly younger than I. Very comfortable with him, more so than I am the Oncologist but that might just be on me. The Rad Onc downgraded the stage rating and it's now a Stage 2 T3N1M0, basically right back to what the ENT said. He explained why, etc. Left side base of tongue and two lymph nodes on the left side of throat. Radiation will be 2.2 grays delivered VMAT, an advanced form of IMRT in which a single or multiple radiation beams sweep in arcs around the patient rather than remaining static. VMAT delivers a high-powered, targeted dose of radiation with minimal damage to surrounding tissue and critical anatomy. Area is levels 2 thru 4 (base of jaw to clavicle). 30 treatments (about 10 minutes per session) and 3 chemo's (6 hours per). Went over side effects, nutrition, blood work (very good), lotions etc. Mask fitting most likely on the 28th of Nov followed by a dry run and start date of 5 Dec 2022. Told me it wouldn't be a cake walk but thinks I can handle it due to my current health being good.

The hospital where everything will happen is 15 minutes from my house and I have the complete ecosystem there. Oncologist, Radiation Oncologist, chemo and radiation treatments, Nutritionists, Labs etc. I continue to eat more and have put on 4 to 5 pounds. Stretching of neck and jaw continue as does the 3 mile walks. We'll see what fatigue does to those.

I’ll update after the first week of treatment. I guess for now it’s bring on the Kraken . . .

28 Nov 2022 Update: Mask fitting was today. No problems and was done in 15 minutes even with the student from OU helping. Only hard part was that styrofoam popsicle they stick in your mouth, you put it in until you almost gag and then hold for 10 minutes. I'm a high saliva guy so swallowing while trying to hold still is not the best feeling. The Radiation Therapist told me 5 to 10 business days for the "plan". She wasn't very happy when I told her the Radiologist wanted to start Monday 5 December so she made that note in my chart. I imagine the plan is simple software they load my stuff into and walla, done. They will coordinate with chemo people once they come up with their plan. So now it's wait. I've put on 10 pounds so far and that's uncomfortable to put on weight lol. I've cut all junk foods EXCEPT for eggnog, got to have my eggnog and bonus is that it's high calorie. 5 more pounds in two weeks and I'll be very happy with that. Technically that would give me 30 pounds to lose and be at my ideal weight per medical charts for my height.