And so my Journey Begins . . .

godzilla1964

My journey is about to begin so I figured I'd set it down and tell it as it goes. As it goes I will update and try to answer any questions.

Symptoms: In June 2022 I had my yearly physical and my blood work came back as good so no indications of anything. Felt great. Started August with a sore throat and a full left sinus. After 4 weeks I went to my primary physician as that long with a sore throat is not normal for me. She said my throat looked very irritated and gave me a 7 day Amoxicillin treatment. It didn't really do much and I went on vacation. While on vacation the sore throat worsened some and my left lymph node developed a lump/swelling. Upon return from vacation, 25 September, she gave me a steroid shot and a Zithromax Z-Pak. Again did nothing. Went back a week later and she referred me for an ENT and a CT scan. CT scan was 12 Oct, primary doctor called next day and said that there were two necrotic masses. One on the base of my tongue and one in the left lymph node, both measuring around 2.5 cm’s or less. Saw my ENT on 17 Oct, he confirmed it calling them “Neoplasm of uncertain behavior of tongue” and set me up for a general anesthesia biopsy for tomorrow 20 Oct. I’ve lost maybe 5 pounds since it started so the only thing other than sore throat is a little weight loss. If it wasn’t for the two “masses” I feel great. I still usually walk three miles a day and was just about to get into lifting again. So biopsy tomorrow, again 20 Oct, with a follow up appt with the ENT on 28 Oct.

godzilla1964

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).

wbcgaruss

Hello, zilla and welcome to the forum. As we always say sorry you find yourself here but I think you will find help and support here. It appears you have caught this early from your ENT's size estimation. Which is good for anything like this no matter what it is. It doesn't appear that is confirmed as cancer so it just may be benign or an infection or something. At least I don't think cancer has been confirmed unless I am missing something. Hopefully, you will get the biopsy reports soon. The waiting is tough. Please keep us updated and we will help as we can.

Take Care God Bless-Russ

godzilla1964

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.

wbcgaruss

Zilla, sounds like a very good prognosis and things are on the positive side for sure. Too bad it went to the lymph nodes but a neck dissection is not a bad procedure to go through to get the bad nodes out. And HPV16+ is another good thing. Praying for a good PET report for you and Wishing You the Best.

Thanks for the update.

Take Care God Bless-Russ

kiwiigal

Hey Godzilla,

hope you’re doing well. Just wondering how long you have to wait for your PET scan. I’m newly diagnosed with cancer from a biopsy on my tongue and see the ENT specialist tomorrow at the hospital and just wondering what sort of time frames you are having to wait for these visits?

My oral lichen specialist did a small biopsy on a suspecting looking lesion which did come back as cancer (don’t know any more at this stage) so I take it then that the ENT specialist will remove the rest of of it and then what, send me for a PET scan too? Do you know if they usually remove the cancerous component first and then investigate further or it’s a wait and see with where else the cancer is?

Hope you get in soon to see your oncologist and get your scans done soon as it’s this not knowing what cancer there is which is hard to bear.

Please do keep us updated and wishing you well in your journey.

Angie

godzilla1964

https://csn.cancer.org/discussion/comment/1701362#Comment_1701362

Angie,

My ENT gave me the "news" on the 28th of October and my PET Scan is actually scheduled for today (9 Nov) with my Oncologist appointment tomorrow (10 Nov) so that's 12 days between ENT and PET Scan. I expect the standard treatment, chemo and radiation, so during the last 12 days I've been up and down this board writing down any little tips and tricks others have learned that I think will help me. According to my ENT they now try to stay away from surgery since the morbidity rates are the same as non-surgery but we'll see what the Oncologist has to say tomorrow. It has spread to my left lymph node (about size of an peanut M&M) so I don't know if they will do surgery for that prior to treatment. The PET Scan will tell the Oncolgist about spread and then treatment plan from there. After the Oncologist tomorrow I will post an update on my status and be better able to answer any questions you have.

kiwiigal

Hey Zilla,

wishing you all the best for your scan and yes please do let us know how you go with it. Great going too on doing all your reading up on in the invaluable tips and tricks that members have so gratefully shared with us which helps us to navigate our own journey in this unknown territory as well as taking comfort from knowing others have gone before us and have come through the other side. I saw my ENT specialist at the hospital yesterday and he thinks it’s a small lesion and quite thin and doesn’t think any of my jaw or neck pain is related due to the fact that I have had this pain for almost 2 years and doesn’t correlate with the size of the lesion on my tongue (it would be much bigger) so he’s sending me for a neck and chest scan hopefully within the next 2 weeks but there was no suggestion of getting any PET scan and I forgot to ask about it but perhaps you don’t get that unless they find it somewhere else I am wondering. He’s not looking at why I have pain in my jaw or ear which doesn’t help me with that and hoping that his scientific logic is right.

godzilla1964

https://csn.cancer.org/discussion/comment/1701406#Comment_1701406

Medicine is different from country to country. For instance when I was stationed in Northern Germany, after an appendectomy the Germans would simply use just surgical tape and butterfly bandage to close the wound. Most Americans freaked, would then go across the border to the Netherlands and get stitched up because that’s what they were use to by USA standards. If you have doubts about your doctor I would definitely go see someone else if possible. I've always said, know your body and you'll know when something is wrong. The military taught me to always have a yearly physical. Remember, you can't take care of anyone unless you're taking care of yourself.

godzilla1964

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.

kiwiigal

Thanks Zilla for giving us an update and that’s good news that there was no other cancer found apart from those two spots - BOT and left lymph node. The really positive side is that you are in good health if it weren’t for this uninvited and unwelcomed guest and you seem to have a great game plan moving forward and having goals along the way will mentally strengthen your resolve. I know this journey is fraught with many things that none of us ever want to have done but it’s amazing how when we are faced with it we do find that strength to step up to that batting plate and hit that ball as far out of the field as we can and Zilla I can hear that determination in your voice. Please keep us informed when you can on how things are going and I wish you all the best for the next how many weeks it might be, thinking of you.

godzilla1964

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 . . .

wbcgaruss

Dear Zilla do you have a first name you would share?

I must say I am very impressed with the way your case is going and feel very positive about it. You have a good understanding of what is going to happen and are comfortable with your care team.

From your explanation, it seems like everything is laid out in an orderly manner and all the bases are covered. The after-effects may be similar to other H&N treatments so brace yourself for that in the weeks after you finish treatment.

I recommend you check out the Superthread at the top of the page as you will probably find something in there of interest.

It's where I got this video which is probably the radiation treatment you mentioned--

https://vimeo.com/78791415

Another video explaining VMAT--

https://vimeo.com/26858213

Wishing You the Best

Take Care God Bless-Russ

kiwiigal

https://csn.cancer.org/discussion/comment/1701553#Comment_1701553

Hey Zilla,

thats great that you have some more information and dates for your treatment and good news that the stage rating was down graded, take all the positives we can. Thanks so much for sharing your treatment schedule and you sound like you’re definitely gearing up to be in the best shape for it which will put you in good stead.

I got my CT scan dates for my neck and chest for 28th November and booked in for surgery for a excisional biopsy/partial glossectomy on Dec 1st. It’s been diagnosed as a Small T1 SCC right lateral tongue but won’t know for sure if it’s just the tongue or spread anywhere else so the scans should be able to tell us more.

Good luck Zilla and wishing you all the best and will keep an eye out for your further updates.

take care.

godzilla1964

https://csn.cancer.org/discussion/comment/1701556#Comment_1701556

I've learned a lot from this board in a short time that allowed me to develop my overall game plan as I've gone along these last few weeks. But I have no doubt things will change slightly when the "rubber meets the road" . . .

steven59

Welcome, I joined today, similar to you in hpv+. Was told ssc in both tonsils is quite uncommon so surgery seemed a prefered route to chemo for me.The radiation/proton machines are working overtime at my local cancer so we certainly aren't alone. I was fitted with the mask today and I would recommend you bring some music with you. I wish I would have had a valium or something. Hang in there, as you initially posted this specific cancer has a very high success rate.

zimrx17

I just joined today, it is a weird feeling to see that you are about to embark on a similar journey as myself and many others. I wish I would have found this board prior to beginning my journey. I will follow along with you. I don't know if I have any advice other than try your best to stay ahead of nutrition. I lost 60 pounds in about 4-5 weeks and had to get a feeding tube. It was a tough journey, and I am so glad the folks on here don't sugar coat it. I was told it would be hard, and I believed them, but for me it was HARD!

godzilla1964

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.

wbcgaruss

Mr.Zilla sounds like everything is going well. I am glad you are gaining weight. I am not familiar with the styrofoam popsicle you speak of, I have had 2 masks and never encountered that. I don't think the treatment plan is simple software they load they actually make up the course and tailor it to each patient is my understanding. The last radiation I had my radiation doctor even took us back and showed us on a computer screen the areas and strengths my radiation would involve, he was showing us the finished plan and the treatment pattern and areas and it was tailored to stay away from my throat as much as possible and any other areas that may affect my swallowing capabilities. Thanks for the update, glad everything is going well for you.

Wishing You the Best

Take care, God Bless-Russ

zimrx17

I didn't have the popsicle thing either, and they fitted me twice, prior to beginning and during because I had lost so much weight. Thanks for updating us!

godzilla1964

https://csn.cancer.org/discussion/comment/1701878#Comment_1701878

It's a styrofoam insert on a stick, hence popsicle, that goes in the mouth, forces the tongue to stay down and motionless, and keeps the top of the mouth relatively unaffected.