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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Hi @buffalowy. Welcome to our group. HPV16+ or P16+ is usually a better diagnosis than "unknown" in that in the last twenty years we are finding the treatment can be a little less severe than the standard treatment for squamous cell carcinoma. That being said you are in for a bit of a challenge for the next few months and healing will go on for some time after that is usually the case.
I find it unusual that a PET scan is being run before you have surgery and treatment. Perhaps they are looking for other areas to examine as well because it was in your lymphatic system. At least you are getting to this early rather than most who get the diagnosis after months or years of suffering other issues caused by SCC.
If you have questions as you get started on your treatment please don't hesitate to ask. Were you told why they wanted to do a PET scan already?

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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

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Agree with Buzzltyr57 in the post above. The stage will be determine by tumor size, How many lymph nodes involved, If tumor is " midline" location in the mouth/ tongue they may want to treat both sides of the neck. The PET scan is excellent for showing where the cancer is as it will almost glow. Alot of good threads on this website. Good luck to you my friend. It is a very winnable but tough battle.

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<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

Diagnosed sep 18 P16+ SCC
Still trying to understand how. Have had CT and biopsy confirmed biopsy was from the lymph node on left side of neck. (Does this mean stage 4?) had PET last Thursday afternoon waiting on result. Am I waiting to long? Any advise?

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Hi Buffalowy, Really not enough information to give any advice. I'm assuming it was a cancer that was confirmed by CT and biopsy? The PET is simply for determining if your cancer has spread to anywhere in the rest of your body. It's a precaution and a test to see. The stage will be determined by all the data gathered by all the tests. Your Doctor will tell you of any stage he feels the data dictates. Hard to wait, I know, but your PET results should clear some questions up for you.

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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

Diagnosed sep 18 P16+ SCC
Still trying to understand how. Have had CT and biopsy confirmed biopsy was from the lymph node on left side of neck. (Does this mean stage 4?) had PET last Thursday afternoon waiting on result. Am I waiting to long? Any advise?

REPLY
@buzzltyr57

Thank you for your story. I will check into the Proton vs Photon issue. I'm finding myself wondering if the "cleanup" is necessary or just revenue stream? What if surgery with clear margins gets it all? What happens if there is no Rad and no Chemo? No damage? no burns? no tooth destruction? no dead taste buds? no fatigue? Seriously! What are the risks? 1 in 100? 1 in 1000? What are we talking here? I'm going to need to ask this question of the Doctors.

Sorry for the rant but I can't seem to help it. I need some answers.

Thanks again for sharing your story - I do really appreciate it.

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I too just wanted it gone ASAP so I opted for the surgery. I feel my TORS surgery cured the cancer with the negative margins. Also one of my lymph nodes was wrapped around the jugular so they removed my jugular. I am not sure if they can with the carotid artery.
The Path report on the Nodes was more unclear so they suggested radiation and short course of Chemo . I agreed to the 30 Radiation treatments on the tumor bed and Nodes but I declined the Chemo as I understand it only offered 3% better outcome. Of course they will recommend what they are fairly confident will cure your cancer or a "standard protocol" I suppose that is their job but I agree the radiation side effects can be brutal and life long. If I had it to do over I probably still would do the radiation just to be sure they got it all. Easy to miss a few cells and then the process starts over. Check into the NavDX blood test for HPV cancer. It is about 95% accurate from what I understand but still not widely accepted . My last NavDx blood test was 0 or non detectable.

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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

Thanks , Dave. I will definitely ask those questions. I want to ask the one about the node being close to the carotid too. Thank you for your kind encouragement! Jesus truly is ever present and never leaves us.
blessings

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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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I understand your view and doubts. I went to Mayo Clinic in Jacksonville. I feel they gave me the best treatment for recovery. Surgery was an option except they were not comfortable taking my lymph node out as it was right on my carotid artery.
One thing you might ask re:radiation. Can they do proton radiation in your case vs photon radiation. Proton is much more precise and the side effects, I have heard are much less than photon. Think hammer vs needle.
Best wishes on your treatment and I am glad you have faith in Christ Jesus. He goes through it with you.

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@jonesja

Bruce, Excellent description of your diagnosis. I just went through this exactly. (April 13, 2023) I had TORS surgery to remove base of tongue tumor ( negative margins during surgery). The lymph nodes on one side of Neck were remove and sent off to Pathology. I was considered State 2/ minor Stage 3. ( June 1, 2023) I had 30 rounds of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes on one side of Neck . l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth,Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. Also, There are tons of Youtube videos on the subject. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Today 2.5 months out of radiation treatment. I can eat and drink about anything I wish. However I still have no appetite or taste much at all. During Treatment I was eating very soft diet. Think eggs, cottage cheese, Milk, Smoothies, bologna, Boost,Shakes, soups, etc. My taste buds are about 20% and seem to be coming back some. My mucositis has just about gone away and My saliva production is slowly getting better. My hair has stopped falling out. Beard hair I lost has not returned. Mouth Sores and Neck skin burns healed within weeks of final treatment. My stamina is back to about 80% but Some days only 60%. Head and Neck Radiation is a real tough deal. If I where you I would research Proton VS Photon Radiation and side effects. I my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is much cheaper. In closing you are facing a very winnable battle but make no mistake it is a difficult journey. I see you have faith in God which is why I am typing today. I firmly believe it you have faith the Good Lord will get you through anything..Good luck to you. You can and will make it!

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Thank you for your story. I will check into the Proton vs Photon issue. I'm finding myself wondering if the "cleanup" is necessary or just revenue stream? What if surgery with clear margins gets it all? What happens if there is no Rad and no Chemo? No damage? no burns? no tooth destruction? no dead taste buds? no fatigue? Seriously! What are the risks? 1 in 100? 1 in 1000? What are we talking here? I'm going to need to ask this question of the Doctors.

Sorry for the rant but I can't seem to help it. I need some answers.

Thanks again for sharing your story - I do really appreciate it.

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@rsedlock1958

Hi Bruce, I read through Lamentations 3 every morning. Sounds like we may have a similar wavelength.

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Wow, Ray. that's some heavy reading. There are some key and well known verse here for sure. but the first part of the chapter is new to me. I don't think I've ever read it. Jeremiah is quite broken and hopeless and yet is determined to hope in the Lord. That is the message of the chapter I guess. I will read it again and meditate on it. Thanks man!

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