Squamous cell carcinoma (SCC) P16+
the biopsy stated P16 positive squamous cell carcinoma with associated necrosis...
Things are flying by me so fast, yet I read the article from Mayo saying less is more. Also waiting on a call back as I want to explore the options that I don't even know what is about to happen, I have never ever had any issues and out of no where here this lump is.
I should state also I've never ever had surgery, been in the hospital etc. but also I am very careful as I totally freak out (potential heart attack levels of freaking out) with needles and anything medical. I can't even stand to be in a hospital room. So when things are flying at me I have zero time to try to wrap my head around any of this.
Sorry for the long wind.... but any info to start to process this would help. I'm supposed to do a PET scan when I get back from vacation. trust me when I say that took me 2 weeks to get my head to where I MIGHT get through it.
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Agreed 100%. Radiation is a very slow climb back to somewhat normal. And yes it does put your life into perspective. Well said!
How are you doing?
Agree on the radiation treatment being the worse to recover from. Radiation being accumulative, is the worse once you get to the last 2-3 weeks of it. Might wanna get the feeding tube to help with keeping your amt. of weight loss down and nutrition up. It’s a journey for sure but you can do it for better days ahead.
So I'm three weeks out from surgery. Physically feel great. Eating what I want and exercising. Had first post-op CT and it was all clear. I know still early but any good news is good news. Will have PET/CT at 12 weeks plus exams from ENT every 2 months. Oncology thinks less than 10% chance it comes back so im going with that. Hopeful....
Yes, I recommend the feeding tube. Good nutrition really help my quick healing.
I have had 35 radiation and 7 chemo and totally agree with the feeding tube it really help me and I had 60 hyperbaric treatments and would definitely suggest for you to look into it is the best and saved my voice box and repaired most of the radiation damage I cannot say enough about this .Please look into it .
@hrhwilliam was wondering about your journey and if after all treatments you followed a specific diet. Or did your eating pretty much go back to what you ate before? Reason I ask is because I'm attempting to completely overhaul how I eat and really working to get in shape. Doctors don't seem to say much about the nutritional aspects of this stuff. And I don't really know if it makes a lot of difference but it does seem to give one a sense of control in what is an uncontrollable situation.
Hi @brad78 I posted a discussion about side effects of radiation a while back. here is the link: https://connect.mayoclinic.org/discussion/radiation-side-effects-when-will-they-ever-end/
Typically during and after radiation one can only tolerate a few foods, primarily soft or liquids for a while. I had broth, soft eggs, custard, porridge (oatmeal), cream of wheat, Ensure, and similar foods. Nutrition consisted of whatever could be tolerated. Regaining protein and calories was the primary goal.
You will find foods you can tolerate, perhaps foods you never cared for suddenly become favorites. Your taste will likely change. Swallowing may become a challenge. In fact it still is for me as I am often the last one at the table to finish. It's a "new" normal we all get to.
Don't fret about these changes. Don't be surprised about them either.
You may have an easy time of it, or perhaps not. We all are individual when it comes to this.
But to summarize, Eat what you can, when you can. Don't worry about a balanced diet. There will be time for that later. And keep active even if it's just a slow walk around the house.
I know this all sucks. Feel free to contact me anytime. I usually check this site at least once per day. I wish I could walk you through this, I really do. But you will be okay in the end and perhaps better. There is a saying something like "Scars have better stories than tattoos".
Courage.
Sounds very similar to my experience. I agree with you wholeheartedly about keeping active during your treatments. I was able to get into the gym nearly every day, albeit my workouts were a bit toned down. I believe keeping up with working out made a significant difference in my recovery.
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?