Squamous cell throat cancer

Posted by fwpoole @fwpoole, Sep 26, 2021

Im a 66 YO male and I've recently been diagnosed with "Moderate squamous dysplasia with superficially-invasive squamous cell carcinoma" in my throat. Its p16 HPV. What's the difference between "moderate squamous dysplasia" and "superficially-invasive squamous cell carcinoma"?

I know that "Moderate" means its in the middle of the spectrum and superficial means on the surface. I take both of these terms as being a positive wrt my cancer. Am I right? My ENT says surgery is too risky due to the tumors relationship to my larynx. My oncologist is recommending 3-4 rounds of chemo (5-FU and Carboplatin) and 25 rounds of radiation.

I've been through chemo 2 years ago with NHL so I sort of know what to expect. But, radiation scares me. My brother in law went through radiation with lung cancer and the side effects ended up killing him. I'm also claustrophobic and prone to panic attacks in tight spaces so putting my head in a cradle or vice for radiation is NOT going to happen. And I don't want to have to live on sedatives for 5 weeks to get through it.

Has anyone ever gone through (successful) treatment for this throat cancer without radiation? I don't understand the aggressive nature of the treatment for "moderate" and "superficial" diagnosis.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Hello, my brother of 59 years old has been diagnosed today with squamous cell Carcinoma possible lymphovascular
Lession present - tumor positive for P16. The lump in his throat/neck is quite big and has been there for over a year now but in past few months has grown substantially. I just started my research in this and his doctor will speak with him later in the week to let him now how he thinks he should be treated. Has anyone on here have any information on this or been treated or know someone who has. Thank you in advance for any information

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@jenhope

Hello, my brother of 59 years old has been diagnosed today with squamous cell Carcinoma possible lymphovascular
Lession present - tumor positive for P16. The lump in his throat/neck is quite big and has been there for over a year now but in past few months has grown substantially. I just started my research in this and his doctor will speak with him later in the week to let him now how he thinks he should be treated. Has anyone on here have any information on this or been treated or know someone who has. Thank you in advance for any information

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Welcome @jenhope. I know this is frightening. You must be very worried about your brother.

I moved your message to this existing discussion in the Head & Neck Cancer support group (https://connect.mayoclinic.org/group/head-neck-cancer/)
- Squamous Cell Throat Cancer that you can find here: https://connect.mayoclinic.org/discussion/squamous-cell-throat-cancer/

I did this so you can read the previous helpful posts and connect with other who have been there like @fwpoole @cooper12345 @rwdow @leelee70 @sepdvm @hrhwilliam @michael3319 and more.

Jen, as you begin your research into what this diagnosis means and how you can support your brother, what questions would you like to ask?

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@colleenyoung

Welcome @jenhope. I know this is frightening. You must be very worried about your brother.

I moved your message to this existing discussion in the Head & Neck Cancer support group (https://connect.mayoclinic.org/group/head-neck-cancer/)
- Squamous Cell Throat Cancer that you can find here: https://connect.mayoclinic.org/discussion/squamous-cell-throat-cancer/

I did this so you can read the previous helpful posts and connect with other who have been there like @fwpoole @cooper12345 @rwdow @leelee70 @sepdvm @hrhwilliam @michael3319 and more.

Jen, as you begin your research into what this diagnosis means and how you can support your brother, what questions would you like to ask?

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Thank you so much

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@jenhope

Hello, my brother of 59 years old has been diagnosed today with squamous cell Carcinoma possible lymphovascular
Lession present - tumor positive for P16. The lump in his throat/neck is quite big and has been there for over a year now but in past few months has grown substantially. I just started my research in this and his doctor will speak with him later in the week to let him now how he thinks he should be treated. Has anyone on here have any information on this or been treated or know someone who has. Thank you in advance for any information

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Hello jenhope and I am sorry your brother is facing this. I have metastatic SCC and it has been 10 years since my first surgery. While mine began in my ear, my father had oral SCC back in the early 90s. I know a few people with tonsillar SCC due to HPV. Surgery is sometimes an option, and radiation with or without chemo is often used, especially with lymphovascular invasion. HPV associated tumors are more responsive to radiation than nonHPV. Radiation is tough and sometimes a feeding tube is needed but we all get through it and it is worth it for positive results. One acquaintance who declined radiation due to side effects was still battling it years later when it continued on in his lymphatics. There are also now immunotherapies approved for use for H&N SCC that were not available 10 years ago. I am on Libtayo infusions every 6 weeks for 2 years now and my last metastasis has disappeared. I am tolerating it very well. I can't emphasize enough about getting a second opinion at a referral center or large teaching hospital. He wants the most up to date treatment, not just the standard of care. My cancer surgeries and followup care has all been at Mayo Clinic Rochester MN, with my radiation and chemo at University of Michigan closer to home. When I asked my Mayo radiation oncologist if radiation was equal wherever it is given he said no, that it depends on the skills of the doctors designing the treatment plan. He recommended UM for their world renowned head and neck radiation oncologist. Insurance often covers a second opinion so don't be afraid to travel for it. We continue to drive 10 hours each way for what I consider the best of care at Mayo Clinic. A couple of books that have helped me to keep a positive attitude: How Not to be My Patient by Ed Creagan MD, a Mayo palliative care doctor, and Radical Remission- Surviving Cancer Against All Odds by Kelly Turner. Lots of optimism and suggestions for a healthier lifestyle in both books. Best of luck to you both. Caregiving is a tough job so it is good to educate yourself and be prepared. This Connect site can be so helpful.

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Sue, thank you so very much for all this information. Thank you for telling me you and your dads story and I’m happy to hear you are well. I will surely do my research for him ❤️🙏

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@sepdvm

Hello jenhope and I am sorry your brother is facing this. I have metastatic SCC and it has been 10 years since my first surgery. While mine began in my ear, my father had oral SCC back in the early 90s. I know a few people with tonsillar SCC due to HPV. Surgery is sometimes an option, and radiation with or without chemo is often used, especially with lymphovascular invasion. HPV associated tumors are more responsive to radiation than nonHPV. Radiation is tough and sometimes a feeding tube is needed but we all get through it and it is worth it for positive results. One acquaintance who declined radiation due to side effects was still battling it years later when it continued on in his lymphatics. There are also now immunotherapies approved for use for H&N SCC that were not available 10 years ago. I am on Libtayo infusions every 6 weeks for 2 years now and my last metastasis has disappeared. I am tolerating it very well. I can't emphasize enough about getting a second opinion at a referral center or large teaching hospital. He wants the most up to date treatment, not just the standard of care. My cancer surgeries and followup care has all been at Mayo Clinic Rochester MN, with my radiation and chemo at University of Michigan closer to home. When I asked my Mayo radiation oncologist if radiation was equal wherever it is given he said no, that it depends on the skills of the doctors designing the treatment plan. He recommended UM for their world renowned head and neck radiation oncologist. Insurance often covers a second opinion so don't be afraid to travel for it. We continue to drive 10 hours each way for what I consider the best of care at Mayo Clinic. A couple of books that have helped me to keep a positive attitude: How Not to be My Patient by Ed Creagan MD, a Mayo palliative care doctor, and Radical Remission- Surviving Cancer Against All Odds by Kelly Turner. Lots of optimism and suggestions for a healthier lifestyle in both books. Best of luck to you both. Caregiving is a tough job so it is good to educate yourself and be prepared. This Connect site can be so helpful.

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I just had surgery at Barnes in St Louis MO. for my throat. While in there they removed some of my lymph nodes and found the cancer was in 2 of them. They are suggesting radiation as the next step. This will be set up at a place closer to me. I'm wondering do I need another opinion and how hard to get get somewhere like Mayo?

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@riverratlt

I just had surgery at Barnes in St Louis MO. for my throat. While in there they removed some of my lymph nodes and found the cancer was in 2 of them. They are suggesting radiation as the next step. This will be set up at a place closer to me. I'm wondering do I need another opinion and how hard to get get somewhere like Mayo?

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11 years ago it just took one phone call to set up an appointment with Mayo ENT for my cancer. There is a lot of work arranging all your scans and medical information to be sent to Mayo. I believe a referral from your doctor can expedite the situation. Video visits are another option but you must submit all your information for these as well. I think a second opinion is always valuable to know you are heading in the right direction with your treatment. But you have received care at a highly rated cancer center and if you are comfortable with your doctors and their advice, just ask the question if the radiation and aftercare closer to home will be of the same quality as they can provide. Good luck to you.

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@sepdvm

11 years ago it just took one phone call to set up an appointment with Mayo ENT for my cancer. There is a lot of work arranging all your scans and medical information to be sent to Mayo. I believe a referral from your doctor can expedite the situation. Video visits are another option but you must submit all your information for these as well. I think a second opinion is always valuable to know you are heading in the right direction with your treatment. But you have received care at a highly rated cancer center and if you are comfortable with your doctors and their advice, just ask the question if the radiation and aftercare closer to home will be of the same quality as they can provide. Good luck to you.

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Thank you! We was hoping the surgery would be enough, but after finding in lymph nodes radiation is what they suggest now. That part is making me very nervous.

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@riverratlt

I just had surgery at Barnes in St Louis MO. for my throat. While in there they removed some of my lymph nodes and found the cancer was in 2 of them. They are suggesting radiation as the next step. This will be set up at a place closer to me. I'm wondering do I need another opinion and how hard to get get somewhere like Mayo?

Jump to this post

The trip to Mayo would, in my opinion, be the best thing you could do for a good outcome. Mayo is like no other anywhere, which is obvious once you are involved with them. People from all over the world travel to Mayo for opinions and/or complete care for an issue. I live about as far from Mayo as you do and would not hesitate to make the trip if the need arose.

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@hrhwilliam

The trip to Mayo would, in my opinion, be the best thing you could do for a good outcome. Mayo is like no other anywhere, which is obvious once you are involved with them. People from all over the world travel to Mayo for opinions and/or complete care for an issue. I live about as far from Mayo as you do and would not hesitate to make the trip if the need arose.

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Thank you! Will have to check transportation and insurance too.

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