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.

@davehutsell

Said a prayer for you that all works out for you. I prayed the Psalms a lot and leaned on Psalm 138. I love the part that the Lord will perfect that which concerns me. I write all those down and give them to Him.
It has been 5 and 1/2 months from my last treatment. I am doing very well. Gaining strength, eating normally and exercising. I am able to work a normal schedule. What's different? I have lost a lot of weight. The radiation took out fat as well as muscle mass. I just did not have an appetite and the pain in my throat would only tolerate liquids. Boost 530 is good. I am in no hurry to gain a lot of weight. I also sleep lighter than I used to. While i am eating a normal diet, i still do not enjoy eating like I did before treatment. I know i am rambling a bit, I just want to say I am getting stronger every day, am cancer free and want to help anybody i can with my experience.

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Hi Dave. Just joined the group and enjoy your posts. I was diagnosed earlier this month with p16+ and am 45 years old. Surgery will be next week and most likely radiation. So to say the least, going through some changes.

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I had SCC on the base of my tongue and a couple of lymph nodes in the fall of 2020. I had chemo and proton radiation, since have had multiple cleans scans.

I wrote a blog during my experience (non-revenue generating) if you would like to review it. You can read it at:

https://stevefleurysblog.com/2020/10/29/part-1-the-beginning/

More importantly, my wife wrote a wonderfully insightful post of lists and non-advice advice.

https://stevefleurysblog.com/2021/01/05/lists-and-non-advice-advice/
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@stephenrfleury

I had SCC on the base of my tongue and a couple of lymph nodes in the fall of 2020. I had chemo and proton radiation, since have had multiple cleans scans.

I wrote a blog during my experience (non-revenue generating) if you would like to review it. You can read it at:

https://stevefleurysblog.com/2020/10/29/part-1-the-beginning/

More importantly, my wife wrote a wonderfully insightful post of lists and non-advice advice.

https://stevefleurysblog.com/2021/01/05/lists-and-non-advice-advice/

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Thank you Steve. I enjoyed reading. Many of your thoughts and emotions in the beginning are quite familiar. I too have a wonderful family which is everything. I could not tell if yours was p16+ or not?

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Yes, the cancer was caused by the HPV-16 virus.

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@stephenrfleury

Yes, the cancer was caused by the HPV-16 virus.

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I go to surgery next week. Doctors seem very optimistic so I'm pretty much riding on that at this point. I'm 45 and pretty healthy. Ready to start a plan of action as opposed to thinking about it all the time.

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@brad78

Hello everyone. I was diagnosed p16 positive via biopsy of lymph node on left side of neck. I'm 45 years old. Shocked does not do it justice. Thankfully, the medical teams went into action and I'll be in surgery next Wednesday. Met with Radio Oncologist and it's looking like 30 sessions radiation. Not sure about chemo yet. Pathology from the surgery will be telling. Mentally has been the challenge of my life. Doctors have assured me it was caught early and will be dealt with but the journey scares me. I'm kind of starting to come to grips with the fact that life is going to change dramatically for a time...maybe forever. I have a 5 year old angel of a daughter and a wonderful wife so plenty to fight for. Anyway, I don't do much internet so this is new to me. But enjoy reading the stories and not being alone in this.

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Hello @brad78 and welcome to our group. I was around your age when I went through a similar bout with SSC. My daughter was about eleven at the time. About four weeks into radiation, she tucked me into bed and read Harry Potter chapters to me.
You wouldn't be normal if you were not scared. Your life is meeting one of those big life events and the unknown is overwhelming at times. Fortunately there have been many advances in the treatments of Head and Neck Cancer, particularly with HPV16+ type where the success rates have soared. As long as your doctors and radiologist have previous experience with SSC, you should have little to worry about other than the treatment and healing trip you are about to enjoy.
Two tips for now. One, you might inquire about a feeding tube as you may have difficulty to eat temporarily, and two, you may find it difficult if not impossible to work for the last ten radiotherapy treatments and for about two or three weeks afterwards. In fact it will take many months if not years to get to your new normal.
But hey, my daughter is all grown up now and I'm living the crazy life. You can do this.
Reach out to me or anyone in this group if you have questions. We often have more experience than the physicians who often have no experience from the patient's point of view. Courage.

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Your comment about her reading the books got me. My daughter is so compassionate and caring as well. I will say that the doctors I have are among the best so I have a lot of confidence there. I guess it's just the knowing the test of a lifetime is coming. For some reason, people tell me I'll look back on this and be appreciative of it. Curious what your thoughts are?

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@brad78

Your comment about her reading the books got me. My daughter is so compassionate and caring as well. I will say that the doctors I have are among the best so I have a lot of confidence there. I guess it's just the knowing the test of a lifetime is coming. For some reason, people tell me I'll look back on this and be appreciative of it. Curious what your thoughts are?

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I don’t know if you will be appreciative of having cancer but I would agree with many that it can be a life changing experience, for the better that is. After this, many of life’s problems or work issues will seem trivial to you. My enjoyment of life increased considerably.
Test of a lifetime perhaps. Battle it is to be certain. A fight no one wants or wishes upon others. Just take it one day at a time, two steps forward and one step back as they say. You got this.
Can you keep me updated?

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@hrhwilliam

I don’t know if you will be appreciative of having cancer but I would agree with many that it can be a life changing experience, for the better that is. After this, many of life’s problems or work issues will seem trivial to you. My enjoyment of life increased considerably.
Test of a lifetime perhaps. Battle it is to be certain. A fight no one wants or wishes upon others. Just take it one day at a time, two steps forward and one step back as they say. You got this.
Can you keep me updated?

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I absolutely can. At the dentist now getting cleared for possible radiation. Next Wednesday is operation. Here we go...

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@brad78

I absolutely can. At the dentist now getting cleared for possible radiation. Next Wednesday is operation. Here we go...

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Wish you the best for a successful surgery.

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