Squamous cell carcinoma (SCC) P16+

Posted by midiwiz @midiwiz, Aug 31, 2023

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.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

@brad78

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.

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I believe the medical community is finding the HPV 16 version of throat cancer very treatable and they are using de-escalation radiation treatments in trials. I imagine that is why no radiation was ordered in your case? You say it was caught very early, Stage was low with a good Pathology report. I requested less than 30 rounds (60 gy) but was told I needed that much. Stage2/3 . As my radiologist said it would be just to "clean up" and remaining cancer cells. I was hoping for 30 Gy as I have seen many trials in that range of de-escalation. It sounds like they are using all the tools to monitor for reoccurrence which is good. Also, since you have not had any radiation or Chemo you will have those tools in your toolbelt to use in the future. They do not like to use radiation on the same area twice. It is hard to trust your doctor but for the most part they have a good grip on how to best treat your cancer. Have faith and good luck!

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@jonesja

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.

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Curious what your diet was the first year.

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@jonesja

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.

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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.

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@brad78

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....

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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.

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I had a pre and post NavDx and the results came in 7 days. Went from 3212 to zero! Followed up with shortened Radiation and chemo

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@jonesja

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.

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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....

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@sepdvm

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?

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Hello. Thanks for your input! So I basically went to a lot of fruits and veggies and cut sugar out. Very little meat. We have our own cattle so beef is "organic". I have a bread that is all grain and no added sugar but no other bread.

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@brad78

@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.

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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?

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@hrhwilliam

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.

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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.

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@brad78

@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.

Jump to this post

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.

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