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.

@buffalowy

<p>Diagnosed with SCC P16+ on sep 18, biopsy of left neck lymph node on 23 sep confirmed ct scan results. Now waiting on results from PET scan from last Thursday. I don’t understand how I got here without symptoms any advice?</p>

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@buffalowy, I moved your posts about SCC P16+ to this existing discussion:
- Squamous cell carcinoma (SCC) P16+ https://connect.mayoclinic.org/discussion/p16-squamous-cell-carcinoma/

I did this so that, in addition to @hrhwilliam, you can connect with other members living with Squamous cell carcinoma (SCC) P16+ who are walking this path only weeks or months ahead of you. Members like @fwpoole @jonesja @midiwiz @davehutsell @dennymayo @thebgyn123 @westand731 @buzzltyr57 and more.

@buffalowy, have you learned more about diagnosis in the meantime and plans for treatment? What questions might you have for others who have been there?

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I’ll be glad to share any detail from my journey.

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Your case sounds identical to mine. No symptoms and them bam, you got cancer. I began my journey in March of 23, it is now October, and I am well. 100%? I would say 85 to 90. THe Mayo Drs and Nurses were wonderful and will help you through it. For me the keys were:
1. Have faith in God. He was present day and night to help me put this life in perspective and give me so much peace and hope along the way. He still does.
2. Every day will have its moments both challenging good: so take them as they come.
3. Eating and drinking will be a challenge. Boost 530 will be your best friend as well as lots of water. I did not get a feeding tube and in hindsight that is an option. Talk to your Radiologist.
4. Take lots of walks. Try to keep your strength up.
5. Know the month after your last treatment will be hardest but gradually after that you will begin to feel much better.
6. There is light at the end of this tunnel, stay in touch with others who are going through and who have been through this. You can receive and give help along the way.

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Midwiz,
Same thing here. Out of nowhere the diagnosis on tongue. Kind of takes a whack out of you.
I met my family and discussed. I am a control freak when it comes to my health etc however I decided to let the experts have the control.
I listened and asked lots of questions. The team if experts were great.
I am 2 months from last radiation. Still some trouble eating and keeping weight on but daily improvements.
Listen to your team and they will guide you. You are not the first or the last.
I find this sight gives lots of great insight too.
I wish you well and thoughts with you.

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@colleenyoung

@buffalowy, I moved your posts about SCC P16+ to this existing discussion:
- Squamous cell carcinoma (SCC) P16+ https://connect.mayoclinic.org/discussion/p16-squamous-cell-carcinoma/

I did this so that, in addition to @hrhwilliam, you can connect with other members living with Squamous cell carcinoma (SCC) P16+ who are walking this path only weeks or months ahead of you. Members like @fwpoole @jonesja @midiwiz @davehutsell @dennymayo @thebgyn123 @westand731 @buzzltyr57 and more.

@buffalowy, have you learned more about diagnosis in the meantime and plans for treatment? What questions might you have for others who have been there?

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I’ve had my surgery for removal of a portion tongue a both sides lymph nodes. Stayed in the hospital 5 days due to trying to manage high BP. Been home since Saturday. Pretty rough pain and meds schedule. Now I’m needing a phlegm sucking machine. Anyone know about these?

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@buzzltyr57

Hi Dave, - thanks for your story. I was offered the "no surgery - high dose Rad and weekly chemo" but opted against it. I'm going to have the surgery and hopefully "lighter" rad and only 3 chemo treatments spaced over the 5-6 weeks. My first instinct is to get this out of me now.

I'm wishing I could just have the surgery and double neck dissection and call it a day. How critical is the radiation anyway? That's what I'm asking myself today.

I find myself, after all the Covid malarkey, wondering what is truly needed? and what is just revenue stream? The medical / pharma insustry has not done much to make me trust them these last few years. I have some more questions for my Oncological team I guess.

Venting a little tonight.....
Bruce

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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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I am two and a half months post radiation. Daily improvements but still have trouble with saliva production and tongue irritation. Hot biotene and magic mouthwash.
In Canada, has anyone any other remedies for saliva production so that I can swallow chewed food.

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@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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Dear Dave,
I am really glad to hear you are doing so well. Yes there seems to be changes that may last a while. But God is good. He has a plan and an outcome for each of us. I am so very glad you can trust Him in all this. I myself am 10 days out from surgery. It's been pretty rough managing the pain and trying to get enough food in to avoid the tube. But God is faithful, and I am eating better and the pain is becoming more manageable. Im gaining strength and had a couple BM's finally. I'm not looking forward to Radiation but I know God goes before me in all things. He will hold me fast.

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@buzzltyr57

Dear Dave,
I am really glad to hear you are doing so well. Yes there seems to be changes that may last a while. But God is good. He has a plan and an outcome for each of us. I am so very glad you can trust Him in all this. I myself am 10 days out from surgery. It's been pretty rough managing the pain and trying to get enough food in to avoid the tube. But God is faithful, and I am eating better and the pain is becoming more manageable. Im gaining strength and had a couple BM's finally. I'm not looking forward to Radiation but I know God goes before me in all things. He will hold me fast.

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I too had TORS tongue surgery and Lymph node removal one side of the neck. The first 10 days are by far the toughest. I also went about 10 days before a BM. I would add taking daily laxative should help as long as you are on pain meds. Eating enough right now is paramount. Walk some if you can. You will be surprised how you will progress within a month. God is great and is walking with you on this journey.

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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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