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.

@buzzltyr57

Hello to all,

I’ve been diag’ed with SquamousP16 on back RT side of the tongue and into at least 1 RT lymph node. I’ve had a CT w/contrast and biopsy confirming. I’ve had a PET with no finding other than suspected tongue and Lymph node. I live in 40 miles west of St.Louis and am in the Barnes Jewish Health system and Siteman Cancer Center.

We met with the surgical oncologist yesterday afternoon. He did his exam and thought the lymph node was what he called “mobile” meaning he could move it around – meaning it was not attached or metastasizing to anything as best as he could ascertain until he gets in there.

This is good, obviously as metastasizing is bad. Under general anesthesia, the Surgeon said he would use a robotic method to excise the tongue area and then send it to pathology and wait for margins to be known. This could take up to an hour. If the margins are not clear he will go and take more and do the lab wait all over again. Once margins are clear they will leave it open – no stitches or anything – and let it heal on it’s own. This will be quite uncomfortable for a week or so.

While the surgeon waits for the Path lab results, he will go in and remove the right side lymph nodes from incisions outside, then some stitches and a drain for a few days to a week. That should be fun! I will be in the hospital a minimum of 2 days.

He doesn’t think the left side lymph nodes will need to come out but it’s still a possibility depending on what they see when they get in there and how aggressive the cancer looks under a microscope. Then he says we will wait 4-5 weeks to heal up and go for minimum 25 sessions of radiation. Five days a week for 5 weeks. So estimates the Surgeon.

The Surgeon says he is part of a triad – 1)The medical team (my ENT) - 2) the Surgical Oncology team (himself and his people) and 3) the Radiation/Chemo team – led by and very experienced oncologist at the Siteman Cancer Center here in St. Louis. They all will discuss and make decisions as a team.

So the Surgeon immediately called Siteman and got me in to see the Radiation Oncologist across the street.

We went right over there and spent almost an hour getting exammed and talking over details with the Radiation Oncologist. He felt the lymph node and thought it was NOT as mobile a he would like. He thinks there is a 50/50 chance it has metastasized already. If so, This will most likely necessitate 30-36 sessions of radiation AND 3 doses of chemo spaced out over the 6-7 weeks of Radiation. Plus he will recommend all lymph nodes on both sides be removed, if it has indeed metastasized. We won’t know until we see what’s in there.

Each rad session I will be put into a mask molded to my face and the mask will be fastened to the table so I don’t move. 20 – 30 minutes, do it again 5 days a week, 5-7 weeks. We live about 40 minutes away from the site. I will probably be able to drive until week 3 or 4 but then will need help. Our church and friends are making a schedule and will handle the driving when the time comes.

The prognosis has not changed even if the needs of treatment have increased. It is a 90% success rate. I suspect they’ve known from the beginning what I would need but didn’t want to dump it all at once.

It’s still a Stage 1 cancer – very small and localized – highly treatable but not an easy journey for sure. They say I will have a very sore throat after 10-15 Rad treatments. I will probably lose all or most taste for up to two years.

Due to these two factors, many patients don’t want to eat and that’s BAD. I have to eat and I cannot lose weight on Rad and Chemo. If I don’t eat and lose weight they will put in a GI feeding tube. Nice!

Also, the Rad Onco said I must get cleared at the dentist of any problems before Rad or Chemo. I do that this Tuesday. Fortunately I took care of everything last year and have no issues I know of.

Best guess is surgery will be sked in the next 2 weeks - if Dentist signs off. Then 3-5 weeks and begin RAD/Chemo depending on what they find.

Obviously there are many individual prayer concerns, but….isn’t it wonderful to live during a time when medicine can offer hope? All healing knowledge comes from God and all glory for healing is due Him. But it is an amazing time in many respects.

We are hopeful and optimistic of a complete recovery but it is not guaranteed.

As a Christian with a strong faith in salvation through faith in Christ, I find that I’m not afraid of death as much as pain and suffering. But I’ve suffered enough to know that God gives grace when it’s needed. I can trust Him.

Looking forward to any encouragement I may be able to give and receive.

Bruce

Jump to this post

Hi Bruce @buzzltyr57, welcome to the Connect H&N Cancer group. Your discussion is quite thorough which is to say very good in detail. It looks like you are on the right track including especially the feeding tube which is often overlooked. As annoying as a feeding tube can be, just remember that it too will be gone as well.
I was surprised by the addition of chemotherapy with the P16 result, which seems overly aggressive. I’m not a physician but I would want that treatment aspect justified. It’s uncommon at this stage.
Anyway although this will turn your life upside down, remember that tough times never last but tough people do. As most of us have experienced, this adventure will have some profound impacts on your life and often for the better. Hugs to you. And you know God is with you too.

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@buzzltyr57

Hello to all,

I’ve been diag’ed with SquamousP16 on back RT side of the tongue and into at least 1 RT lymph node. I’ve had a CT w/contrast and biopsy confirming. I’ve had a PET with no finding other than suspected tongue and Lymph node. I live in 40 miles west of St.Louis and am in the Barnes Jewish Health system and Siteman Cancer Center.

We met with the surgical oncologist yesterday afternoon. He did his exam and thought the lymph node was what he called “mobile” meaning he could move it around – meaning it was not attached or metastasizing to anything as best as he could ascertain until he gets in there.

This is good, obviously as metastasizing is bad. Under general anesthesia, the Surgeon said he would use a robotic method to excise the tongue area and then send it to pathology and wait for margins to be known. This could take up to an hour. If the margins are not clear he will go and take more and do the lab wait all over again. Once margins are clear they will leave it open – no stitches or anything – and let it heal on it’s own. This will be quite uncomfortable for a week or so.

While the surgeon waits for the Path lab results, he will go in and remove the right side lymph nodes from incisions outside, then some stitches and a drain for a few days to a week. That should be fun! I will be in the hospital a minimum of 2 days.

He doesn’t think the left side lymph nodes will need to come out but it’s still a possibility depending on what they see when they get in there and how aggressive the cancer looks under a microscope. Then he says we will wait 4-5 weeks to heal up and go for minimum 25 sessions of radiation. Five days a week for 5 weeks. So estimates the Surgeon.

The Surgeon says he is part of a triad – 1)The medical team (my ENT) - 2) the Surgical Oncology team (himself and his people) and 3) the Radiation/Chemo team – led by and very experienced oncologist at the Siteman Cancer Center here in St. Louis. They all will discuss and make decisions as a team.

So the Surgeon immediately called Siteman and got me in to see the Radiation Oncologist across the street.

We went right over there and spent almost an hour getting exammed and talking over details with the Radiation Oncologist. He felt the lymph node and thought it was NOT as mobile a he would like. He thinks there is a 50/50 chance it has metastasized already. If so, This will most likely necessitate 30-36 sessions of radiation AND 3 doses of chemo spaced out over the 6-7 weeks of Radiation. Plus he will recommend all lymph nodes on both sides be removed, if it has indeed metastasized. We won’t know until we see what’s in there.

Each rad session I will be put into a mask molded to my face and the mask will be fastened to the table so I don’t move. 20 – 30 minutes, do it again 5 days a week, 5-7 weeks. We live about 40 minutes away from the site. I will probably be able to drive until week 3 or 4 but then will need help. Our church and friends are making a schedule and will handle the driving when the time comes.

The prognosis has not changed even if the needs of treatment have increased. It is a 90% success rate. I suspect they’ve known from the beginning what I would need but didn’t want to dump it all at once.

It’s still a Stage 1 cancer – very small and localized – highly treatable but not an easy journey for sure. They say I will have a very sore throat after 10-15 Rad treatments. I will probably lose all or most taste for up to two years.

Due to these two factors, many patients don’t want to eat and that’s BAD. I have to eat and I cannot lose weight on Rad and Chemo. If I don’t eat and lose weight they will put in a GI feeding tube. Nice!

Also, the Rad Onco said I must get cleared at the dentist of any problems before Rad or Chemo. I do that this Tuesday. Fortunately I took care of everything last year and have no issues I know of.

Best guess is surgery will be sked in the next 2 weeks - if Dentist signs off. Then 3-5 weeks and begin RAD/Chemo depending on what they find.

Obviously there are many individual prayer concerns, but….isn’t it wonderful to live during a time when medicine can offer hope? All healing knowledge comes from God and all glory for healing is due Him. But it is an amazing time in many respects.

We are hopeful and optimistic of a complete recovery but it is not guaranteed.

As a Christian with a strong faith in salvation through faith in Christ, I find that I’m not afraid of death as much as pain and suffering. But I’ve suffered enough to know that God gives grace when it’s needed. I can trust Him.

Looking forward to any encouragement I may be able to give and receive.

Bruce

Jump to this post

Sounds like you’re in good hands. It’s not going to be easy but you will get through it and come out on the other side cancer free❤️

REPLY

Hello to all,

I’ve been diag’ed with SquamousP16 on back RT side of the tongue and into at least 1 RT lymph node. I’ve had a CT w/contrast and biopsy confirming. I’ve had a PET with no finding other than suspected tongue and Lymph node. I live in 40 miles west of St.Louis and am in the Barnes Jewish Health system and Siteman Cancer Center.

We met with the surgical oncologist yesterday afternoon. He did his exam and thought the lymph node was what he called “mobile” meaning he could move it around – meaning it was not attached or metastasizing to anything as best as he could ascertain until he gets in there.

This is good, obviously as metastasizing is bad. Under general anesthesia, the Surgeon said he would use a robotic method to excise the tongue area and then send it to pathology and wait for margins to be known. This could take up to an hour. If the margins are not clear he will go and take more and do the lab wait all over again. Once margins are clear they will leave it open – no stitches or anything – and let it heal on it’s own. This will be quite uncomfortable for a week or so.

While the surgeon waits for the Path lab results, he will go in and remove the right side lymph nodes from incisions outside, then some stitches and a drain for a few days to a week. That should be fun! I will be in the hospital a minimum of 2 days.

He doesn’t think the left side lymph nodes will need to come out but it’s still a possibility depending on what they see when they get in there and how aggressive the cancer looks under a microscope. Then he says we will wait 4-5 weeks to heal up and go for minimum 25 sessions of radiation. Five days a week for 5 weeks. So estimates the Surgeon.

The Surgeon says he is part of a triad – 1)The medical team (my ENT) - 2) the Surgical Oncology team (himself and his people) and 3) the Radiation/Chemo team – led by and very experienced oncologist at the Siteman Cancer Center here in St. Louis. They all will discuss and make decisions as a team.

So the Surgeon immediately called Siteman and got me in to see the Radiation Oncologist across the street.

We went right over there and spent almost an hour getting exammed and talking over details with the Radiation Oncologist. He felt the lymph node and thought it was NOT as mobile a he would like. He thinks there is a 50/50 chance it has metastasized already. If so, This will most likely necessitate 30-36 sessions of radiation AND 3 doses of chemo spaced out over the 6-7 weeks of Radiation. Plus he will recommend all lymph nodes on both sides be removed, if it has indeed metastasized. We won’t know until we see what’s in there.

Each rad session I will be put into a mask molded to my face and the mask will be fastened to the table so I don’t move. 20 – 30 minutes, do it again 5 days a week, 5-7 weeks. We live about 40 minutes away from the site. I will probably be able to drive until week 3 or 4 but then will need help. Our church and friends are making a schedule and will handle the driving when the time comes.

The prognosis has not changed even if the needs of treatment have increased. It is a 90% success rate. I suspect they’ve known from the beginning what I would need but didn’t want to dump it all at once.

It’s still a Stage 1 cancer – very small and localized – highly treatable but not an easy journey for sure. They say I will have a very sore throat after 10-15 Rad treatments. I will probably lose all or most taste for up to two years.

Due to these two factors, many patients don’t want to eat and that’s BAD. I have to eat and I cannot lose weight on Rad and Chemo. If I don’t eat and lose weight they will put in a GI feeding tube. Nice!

Also, the Rad Onco said I must get cleared at the dentist of any problems before Rad or Chemo. I do that this Tuesday. Fortunately I took care of everything last year and have no issues I know of.

Best guess is surgery will be sked in the next 2 weeks - if Dentist signs off. Then 3-5 weeks and begin RAD/Chemo depending on what they find.

Obviously there are many individual prayer concerns, but….isn’t it wonderful to live during a time when medicine can offer hope? All healing knowledge comes from God and all glory for healing is due Him. But it is an amazing time in many respects.

We are hopeful and optimistic of a complete recovery but it is not guaranteed.

As a Christian with a strong faith in salvation through faith in Christ, I find that I’m not afraid of death as much as pain and suffering. But I’ve suffered enough to know that God gives grace when it’s needed. I can trust Him.

Looking forward to any encouragement I may be able to give and receive.

Bruce

REPLY
@westand731

Plentiful advice here both direct and unbridled and much empathetic and loving. Take your time, breathe, pray. Listen to your healthcare providers .. they are the experts, yet many of us have gone through and survived the lymph node dissections and TORS robotic surgeries, feeding tubes, sleepless nights, weight loss and inability to tolerate food or even swallowing. Walk on friend, listen to the counsel and instruction of your oncology physicians. You can do this. Many of us here had fears and doubt approaching this head and neck cancer (P16+ SCC) for the first time. It's OK and completely normal to feel your fears. We can be a safe place to Vent and lean into emotional support 🩵 and your Doctors, Nurses and healthcare professionals shall be the ones to give you Medical advice. Praying for you on the beginning of what feels like a dark journey, You Can Do This. Walk on through it, Prayer and Divine spirit will see you through. Best to you,

Jump to this post

thanks appreciate it. I get all those procedures, I never have and probably never will trust anything medical... it's the effects of the PTSD. I don't consider it a dark journey either. I consider it a PITA interuption of my world. I know I can (aside from the PTSD) get through it. no tubes etc. what I'm not getting is information I'm asking for from these providers. Aside from that. I'm not one to sit around and do nothing even when I get sick I won't. So since I know that certain pieces of this path consist of sitting around for as much as 3 hours.... good luck. I become a complete PITA within an hour. So eh we shall see, I still have 3 more to talk to.

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@colleenyoung

@midiwiz, I wanted to check in with you. How are you doing? Any update?

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I'm doing fine, updates? Well from the CT to the PET, the lypmh went down in size a bit. The thought it was back of tonsil, but it's back of tongue. A bit of disarray with these people. So we are discussing with many people of different backgrounds. I've also decided to engage holistic onocology for additional input. We also (by accident) found that this has been here since May 22. just never noticable.

I've also engaged the help of a hypnotherapist to try to help with my PTSD for the medical stuff.

REPLY

Plentiful advice here both direct and unbridled and much empathetic and loving. Take your time, breathe, pray. Listen to your healthcare providers .. they are the experts, yet many of us have gone through and survived the lymph node dissections and TORS robotic surgeries, feeding tubes, sleepless nights, weight loss and inability to tolerate food or even swallowing. Walk on friend, listen to the counsel and instruction of your oncology physicians. You can do this. Many of us here had fears and doubt approaching this head and neck cancer (P16+ SCC) for the first time. It's OK and completely normal to feel your fears. We can be a safe place to Vent and lean into emotional support 🩵 and your Doctors, Nurses and healthcare professionals shall be the ones to give you Medical advice. Praying for you on the beginning of what feels like a dark journey, You Can Do This. Walk on through it, Prayer and Divine spirit will see you through. Best to you,

REPLY
@midiwiz

i should mention, I know some of my responses can be a bit flip or edgy but never in a million years is the common term about this right now.... I should also add, I just got a force out from my job of over 24 years, then my mom passes, and then this. harder when I have to deal with all that cause the bills don't go away when the job stops....

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Hello midiwiz,
I wascsame as you when found out about hpv 16 back of tongue. I questioned everything. Drove me crazy. I succumbed to listen to the experts. I am now 6 weeks past my kast radiation and still veing challenged with weight loss and eating enough but everything the docs told me would happen, is happening. This is 80-90 percent beatable. Take their advice. Start the radiation and chemo. The sooner the better. Then work at what thectell you, every day.
I know it's hard but it will give you peace of mind to let them take control.
Praying for you to have some success. Good luck

REPLY

@midiwiz, I wanted to check in with you. How are you doing? Any update?

REPLY

I had 2 surgeries and 25 radiation treatments for treatment of HPV tonsil cancer as primary tumor and spread to 1 lymph nodes. This was a very challenging experience, but I got through it. You will get through your experience too. Given the challenges you will likely face, I suggest you stop being flustered and baffled by what’s going on and start doing some serious research and self-education. The more you understand about what’s going on, the better you’ll understand why you need to experience the challenges you are about to experience. In my opinion, you’ll be better off facing this with an “I know what we need to do so let’s get this done” attitude as opposed to a “why is this happening to me, I don’t like it” attitude. You’ll need commitment to get to your treatments every day. You’ll need mental strength to get through what could likely be some significant pain. Eating and drinking ability will likely become challenging for an extended period of time. The extent of these challenges I mention will be determined by the quality of care you receive. Educate yourself so you can ask questions before you begin treatment. You want to be confident that your doctor(s) are experienced and specialize in the exact specific treatment or surgery that you will undergo. Most of all you need to be determined that you can and will handle whatever comes your way. I’m sure your wife will be there for you, and you’ll be so grateful for all she does. Thank her now ! … and make the commitment to each other that you’ll take this on together and win.

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I just went through the exact same diagnosis this year. I can confidently tell you to calm down , you are in good hands.
I am 4 months out of treatment and doing well. I too had never had an inkling of swollen lymph nodes or cancer on the base of my tongue. The lead Dr advised no surgery and I went through 7 weeks of chemo and radiation. It’s no fun. You will be challenged for the next 3 month and then one day you will start to feel normal. Ups and down yes but have confidence, your Drs know what they are doing.

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