1. < Head & Neck Cancer

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.

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brad78 | @brad78 | Feb 2 12:04pm
In reply to @hrhwilliam "There have been advances in this particular cancer treatment which I did not have access to..." + (show)
@hrhwilliam

There have been advances in this particular cancer treatment which I did not have access to years ago. Radiation can and most likely will result problems for years if not forever. I understand your concern with reoccurrence however the option then for radiation would still be on the table. Our concern about the big "C" returning is forefront on most people's mind for years. It is only natural.
I recall at my five year mark the oncologist telling me that now my risk of return is that of the general population. To which I replied that it is now exactly where it was when I got cancer therefore I am not comforted by that statement. Now that I am older it is no longer a concern.
Have you been advised if you will have a followup medication?

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So as of right now my wife just told me they want the drain out Monday and staples Wednesday. So maybe some discussion there. I think everything is riding on the pathology report which could be a couple weeks out. But the surgeon is pretty set on not putting me through radiation. There was one node that is hard to reach but he got a sample and says it should be benign but the way I understand it that's the important one. Overall, I feel positive. But today is day 3 after surgery so pain is elevated. Thank you for chatting. Honestly does help.

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imaginus | @imaginus | Feb 3 8:05am
In reply to @hrhwilliam "There have been advances in this particular cancer treatment which I did not have access to..." + (show)
@hrhwilliam

There have been advances in this particular cancer treatment which I did not have access to years ago. Radiation can and most likely will result problems for years if not forever. I understand your concern with reoccurrence however the option then for radiation would still be on the table. Our concern about the big "C" returning is forefront on most people's mind for years. It is only natural.
I recall at my five year mark the oncologist telling me that now my risk of return is that of the general population. To which I replied that it is now exactly where it was when I got cancer therefore I am not comforted by that statement. Now that I am older it is no longer a concern.
Have you been advised if you will have a followup medication?

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Radiation...the gift that keeps giving. The side affects can be as nasty as the confrontation with the cancer, in my case.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 4 9:52am
In reply to @cparadise2 "Wish you the best for a successful surgery." + (show)
@cparadise2

Wish you the best for a successful surgery.

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A belated welcome, @cparadise2. Do you also have a head and neck cancer? I look forward to getting to know more about your experiences.

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1 reply
brad78 | @brad78 | Feb 4 10:32am
In reply to @jonesja "That sounds like a very positive outcome so far! Yes I had the drain as well...." + (show)
@jonesja

That sounds like a very positive outcome so far! Yes I had the drain as well. I imagine this week will be tough but it will be much better in 2-3 weeks as far as pain. Yes your Pathology report will guide your Doctor on the next course of treatment concerning possible radiation, Chemo or nothing but monitoring for the next few years. I agree recurrence is always a concern. Radiation should kill any remaining cancer cells. As my oncologist said you only get one swing at it so to speak. I would ask about a shorter cycle of radiation maybe 30 Gy instead of the traditional 60 Gy. Trials are showing it is about as effective without the harsher side effects. Unfortunately, the gold standard for years is blasting you with alot of radiation. I feel the cure is almost worse than the cancer but at least you are alive.

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And I guess from the beginning my whole intent was to find a way to stay alive. Side effects could be handled. But I'm not sure I see anything wrong with letting them monitor me closely and see what happens. But I will say that at day 5 out from surgery this is not becoming any more fun.

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1 reply
cparadise2 | @cparadise2 | Feb 4 12:09pm
In reply to @colleenyoung "A belated welcome, @cparadise2. Do you also have a head and neck cancer? I look forward..." + (show)
@colleenyoung

A belated welcome, @cparadise2. Do you also have a head and neck cancer? I look forward to getting to know more about your experiences.

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Yes. I have Squamous Cell Carcinoma. I had surgery in May - removed left parotid, left ear drum, small amount of bone in jaw and 16 lymph nodes on left of neck. 3 tested positive. Facial nerve was severed. Had chemo and immunotherapy 4 times per week for 5 weeks and radiation in head and neck 5 times per week for 6 weeks. Follow up CT scans showed clear. Will rescan in a month or so. Thanks for reaching out.
MOH

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jonesja | @jonesja | Feb 4 4:50pm
In reply to @brad78 "And I guess from the beginning my whole intent was to find a way to stay..." + (show)
@brad78

And I guess from the beginning my whole intent was to find a way to stay alive. Side effects could be handled. But I'm not sure I see anything wrong with letting them monitor me closely and see what happens. But I will say that at day 5 out from surgery this is not becoming any more fun.

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I imagine so only few days out of surgery. I had alot of throat/ neck swelling. Tons of mucous , nerve pain where they were cut in the neck. Opioids prescribed by Doctor really helped me the first 10 days. Eating anything or drinking will be difficult. I slept upright for 2 weeks. It WILL get better.

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2 replies
cparadise2 | @cparadise2 | Feb 5 1:51pm
In reply to @jonesja "I imagine so only few days out of surgery. I had alot of throat/ neck swelling...." + (show)
@jonesja

I imagine so only few days out of surgery. I had alot of throat/ neck swelling. Tons of mucous , nerve pain where they were cut in the neck. Opioids prescribed by Doctor really helped me the first 10 days. Eating anything or drinking will be difficult. I slept upright for 2 weeks. It WILL get better.

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Yes, it will get better. The Tons of mucous almost drove me crazy but it's all gone now. Unfortunately this surgery does leave some pain initially to deal with. I kept telling myself "it's temporary, I handled it yesterday and I'll handle it today and tomorrow." Best to you.

MOH

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brad78 | @brad78 | Feb 6 11:31am
In reply to @jonesja "I imagine so only few days out of surgery. I had alot of throat/ neck swelling...." + (show)
@jonesja

I imagine so only few days out of surgery. I had alot of throat/ neck swelling. Tons of mucous , nerve pain where they were cut in the neck. Opioids prescribed by Doctor really helped me the first 10 days. Eating anything or drinking will be difficult. I slept upright for 2 weeks. It WILL get better.

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So still recovering from surgery. Drain is out. Staples come out tomorrow. Have an office at home so able to do some work. But this recovery is slow. Eating really well. Pathology came out and margins are clear. Surgeon predicted this outcome and will steer away from radiation. I meet with him tomorrow so excited about that. Really trying to keep my mind in the right place and that's proving difficult. Taking walks and stuff like that so that's helping. I feel like I should be celebrating but not feeling that way.

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2 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Feb 6 12:32pm
In reply to @brad78 "So still recovering from surgery. Drain is out. Staples come out tomorrow. Have an office at..." + (show)
@brad78

So still recovering from surgery. Drain is out. Staples come out tomorrow. Have an office at home so able to do some work. But this recovery is slow. Eating really well. Pathology came out and margins are clear. Surgeon predicted this outcome and will steer away from radiation. I meet with him tomorrow so excited about that. Really trying to keep my mind in the right place and that's proving difficult. Taking walks and stuff like that so that's helping. I feel like I should be celebrating but not feeling that way.

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Good news. 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.
Each day should get a little better. Frightening stuff this cancer but in some ways it can center your life a bit. I wish you well.

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1 reply
jonesja | @jonesja | Feb 7 9:22am
In reply to @brad78 "So still recovering from surgery. Drain is out. Staples come out tomorrow. Have an office at..." + (show)
@brad78

So still recovering from surgery. Drain is out. Staples come out tomorrow. Have an office at home so able to do some work. But this recovery is slow. Eating really well. Pathology came out and margins are clear. Surgeon predicted this outcome and will steer away from radiation. I meet with him tomorrow so excited about that. Really trying to keep my mind in the right place and that's proving difficult. Taking walks and stuff like that so that's helping. I feel like I should be celebrating but not feeling that way.

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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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