Squamous cell carcinoma (SCC) P16+

Hello @brad78 . I had SCC in an ear, temporal bone resection, paraotidectomy, neck dissection almost 12 years ago at Mayo. Radiation/chemo followed due to not clean margins but I did that at U. of Michigan closer to home. The nutritionists there were quite helpful but encouraged any form of calories during the 7 weeks of treatment so high sugar shakes were a mainstay. Since then I did really modify my diet due to new normal taste preferences and research into reducing sugar and increasing protein. I seem to crave vegetables especially now. I was quite a sugar addict before but found it pretty easy to decrease that consumption. I save my sugar intake for dark chocolate now, and Manuka honey. I found a book by a Mayo palliative care MD very helpful in many ways including diet. "How Not to be My Patient" by Ed Creagan MD. You can get it thru Mayo bookstore or on Amazon. I loved this book so much that I bought copies for all our kids and other family members. How are you planning to change your diet?

I am astonished you can eat well but that is great! I could barely swallow a pill for the first 10 days. If they are not recommending radiation that means your staging was low from the pathology report and that is fantastic news. I got outside as much as possible and walked just to Breathe the air and look at clouds as strange as that seems. I would ask your Doctor about the NavDX blood test to monitor reoccurrence. It is not standard protocol yet but I think it will be in the future. I have read it is about 95% accurate. I assume you will have throat scopes/Ct Scan every 3 months for a few years and you can have the blood test done then.
Recovery.... As William said " The recovery from surgery is sooooo much easier than the recovery from radiation, which in most cases one never fully recovers. And it takes months to years before that settles out." That is 100% accurate. I recovered about 90% from the surgery within 30-45 days. However, The radiation really is 5 steps forward and 4 steps back from here on out. I don't expect to ever be 100% but Ill take 90% all day long. It sounds like without radiation you will have a much better outcome than most of us as far as the healing process. Hang in there a few weeks and I think you will be well on the road to recovery. Faith helped me and still does.

Spoke with one of the Oncologists and he ordered the NavDx test. They called me and said they will send a kit to the house and then someone will come out and do the draw. Excited to have this tool in the toolbox. Then April 11 will go for first visit with the surgeon and at 12 weeks PETCT. Right now kind of at a standstill so really looking forward to start getting results and feeling like this thing is in the rear view mirror. I'm understanding the NaxDx test takes a couple weeks to get back? Well, that's great...sure love waiting for results over a couple weeks lol.
Seems to have a 95% accuracy rate....

Have you completed your 30 rounds of radiation? If so that was quick. Yes the Navdx is a kit in a box. They take your blood sample and mail it in. My tests have averaged about 2 week turnaround. And I think 95% accuracy is about right. My first reading right before surgery was 180. 2nd reading 3 weeks from surgery 0. 3 months was 0. 6 months was 0 and 9 months was 0. To say I love the trend is an understatement. Thank God. Of course, throat scopes every 3/4 months and PET or CT scan every 3/4 months first year are necessary. I think they go to every 6 months in year two. It is just a tool but a negative reading gives you alot of peace of mind that the cancer is gone and you indeed are well on your way to being back to normal. I hope your eating and salvia production are doing well as some struggle with that post-surgery/radiation. I would say I am about 90% back to normal as of today. God is good.

Have you completed your 30 rounds of radiation? If so that was quick. Yes the Navdx is a kit in a box. They take your blood sample and mail it in. My tests have averaged about 2 week turnaround. And I think 95% accuracy is about right. My first reading right before surgery was 180. 2nd reading 3 weeks from surgery 0. 3 months was 0. 6 months was 0 and 9 months was 0. To say I love the trend is an understatement. Thank God. Of course, throat scopes every 3/4 months and PET or CT scan every 3/4 months first year are necessary. I think they go to every 6 months in year two. It is just a tool but a negative reading gives you alot of peace of mind that the cancer is gone and you indeed are well on your way to being back to normal. I hope your eating and salvia production are doing well as some struggle with that post-surgery/radiation. I would say I am about 90% back to normal as of today. God is good.

At this time the doctors want to just observe so no radiation. Pathology was such that they think I'm good. A little nervous about that. Not sure what those numbers mean but I'm sure I'm getting ready to learn.

I had almost the exact diagnosis in March this year. I had no surgery but underwent 35 sessions of radiation and weekly chemo. 7 weeks total. The pain does get progressively worse and by week 7 and the next month or so after that it is no fun. I lost 40 lbs. I did not get a feeding tube and am not sure I I should have. Liquid Boost was my diet for some time.
I am 5 months out now and can tell you there is light at the end of this treatment. I can tasted, my diet is normalizing and I am still able to work.
I am still gaining strength. I am able to work. I do not enjoy eating as much as pre cancer treatment and I don’t sleep like I used to. All that said I am so much better in just 5 months. I think your 2 years to normal estimate is probably a good one. Still it’s not terrible. I have my 2nd scan next month a believe that I am cancer free.