Squamous cell carcinoma (SCC) P16+

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

This is the medication that I took for the duration of my radiation to calm me. It didn’t make me sleepy, just calm. I do think though that they recommend you don’t drive. Also when you start chemo make sure you ask for something for nausea. That along with my tongue being sore were the reasons I wouldn’t eat. I lost 85lbs! First time in my life I was happy to be overweight 😂

@buzzltyr57 Bruce, I really appreciate the thorough post you did at the beginning of this discussion! As an active blood cancer patient, with additional health concerns, for me, having everything laid out to me has given me the whole picture. Yes, there may be some changes/modifications along the way, but having the handle on the big scene is comforting. There are fewer surprises, and if there are changes downgrading a treatment, all the better! Often, we cling to what is said, and if/when the team needs to upgrade a decision, our mind runs to, "but you said xxxx, not yyyy, and I'm not ready to accept that!"

Be an involved patient. Take notes, ask questions, write down what you hear. Ask for a social worker to aid you through everything. Don't be reluctant to ask friends/family/faith community for help [it sounds like they are already on board with that!] Graciously accept offers of help. Have you considered writing down your experiences, in a journal form?
Ginger

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

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

Bruce I know you’re probably scared and as a man you’re taught to be tough. Just know that you need to let it out and lean on your family and friends to help you through. Also yes, prayers and God are truly lifesaving. I didn’t have the surgery, but I did have the experience of being in the “cage” Get your oncologist to prescribe a mild muscle relaxer. I tried a few times without them and I didn’t do well. From experience I know you have quite a battle ahead. Just know that there are a lot of us out there and we’re always with you. If you have any questions please feel free to ask me. I was scared because of the uncertainty of it all. Maybe I can give you a little bit more insight. Praying 🙏🏼

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

It is entirely possible the cancer point of origin is in the lymph node itself. More common is in a tonsil, which is also part of the lymph system particularly with HPV16 source.
As far as aggressive on a scale, that is subjective. Certainly aplastic cancers are extremely aggressive so that would be the 10 scale. Prostate cancer is usually very slow so we can rank the slow form as 1. SSC caught early I would put at the lower end say perhaps 3-4. All cancers if left untreated multiply exponentially for example 1,2,4,8,16,32 etc.
I know you are worried. You are in a battle not of your choosing and anyone would be scared and concerned. A million thoughts traverse the mind. However this cancer you have is very conquerable, better now than even twenty years ago when the odds were 85% successful when fully treated.
If you read several of the discussions in this group you will find many good pieces of advice such as the insistence of a feeding tube if the mouth or throat is involved. Proton radiation as opposed to photon for more accurate attack and less peripheral damage. Also make sure your oncologist and surgeon are well versed in head and neck cancers, not just cancers in general. Head and neck has some very specific issues to deal with. Because we don’t eat, breath, or think with our legs, you can radiate those parts until they fall off if necessary. The head is special so seek out the best.
Mayo’s main website mayoclinic.org in the search there is good information on Squamous Cell Carcinoma and you can look at MD Anderson in Houston,TX or the Cleveland Clinic to name others.

William
Thank you for the reply yes it is positive for hpv16+. My understanding is that the head and neck cancer surgeon wanted a PET before the appointment because the biopsy was from a lymph node and not the originating tumor. I’m struggling to find information on how I could have had a precancerous tumor without knowing about it. Also I cannot find any information on how aggressive this type of cancer is I.e. on a scale of 1-10 am I looking at a 3 or 8? If possible could you direct me on where to look? Thank you for your time.

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?