SCC HPV+ on right tonsil and nodes treatment plan.

Posted by sandralea58 @sandralea58, Oct 28, 2022

Hi all. My 70 year young husband has been diagnosed with SCC HPV+ on right tonsil, only detected by lump on neck. RO says N1. He will undergo 35 rounds of 70g radiation and was offered 2 cycles of cisplatin 3 weeks apart (standard care treatment). We understand that HPV+ responds very well to radiation, and given his age the cisplatin is not highly recommended. Anyone in his situation have similar decisions to make regarding treatment.

Thank you for sharing.

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

I should also note, he had ultra sound, CT and PET scan as well as biopsy. PET showed it had not spread below the neck.

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@sandralea58

I should also note, he had ultra sound, CT and PET scan as well as biopsy. PET showed it had not spread below the neck.

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Sandra. I updated the title with the correct spelling. 🙂
I'm tagging fellow members like @frankbc @chamst @ptlhrms @fwpoole @cooper12345 @rwdow @leelee70 @sepdvm @michael3319, who have eperience with HPV+ squamous cell carcinoma and can support you through this journey with your husband.

In the meantime, you may also be interested in these related discussions:
– How can I be a supportive caregiver? HPV Squamous Cell Carcinoma https://connect.mayoclinic.org/discussion/diagnosis-and-discussions/
- Squamous Cell Throat Cancer that you can find here: https://connect.mayoclinic.org/discussion/squamous-cell-throat-cancer/
- HPV P16 positive cancer https://connect.mayoclinic.org/discussion/hpv-p16-positive-cancer/

Would the chemotherapy be offered after radiation is complete?

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I had non HPV SCC in my external ear canal 10 years ago and post operatively was treated with 70 Gr radiation plus simultaneous Cetuximab, a targeted EGFR therapy used to sensitize the tumor to radiation. I was not a candidate for Cis or Carboplatin due to the loss of hearing in one ear with my surgery. Compared to the platinum chemos, this drug at weekly intervals during radiation was not terrible, though I had many side effects. I might suggest that you ask about this drug, as my oncologist at Mayo recommended it but it was not on the radar of the onco at University of Michigan where I had treatment, until we mentioned the Mayo recommendation. I understand HPV SCC is much more susceptible to radiation than my tumor, so I might research if this drug is even used for that scenario. At my immunotherapy Clinic in the Bahamas, I met two men both in their 40s with tonsillar HPV. Both men had surgery with select neck dissection. The one who had chemo with radiation has been clear over 15 years. The man who chose to avoid the side effects of radiation developed metastatic SCC in lymph nodes and tried lo dose radiation and other nontraditional treatments, but I have lost contact with him and do not know his outcome. I am currently on an immunotherapy drug infusion of Cemiplimab every 6 weeks via my Mayo oncologist and it is currently controlling my kidney metastasis with NED for almost a year now. Being non HPV, mine is considered a skin SCC, so treatment recommendations will be different. I strongly recommend a second opinion, preferably at a large cancer center for the most up to date options for treatment. Good luck to you both. Neck radiation is not fun, and a stomach tube may be needed for nutrition, but it is all worth it for good results.

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@sepdvm

I had non HPV SCC in my external ear canal 10 years ago and post operatively was treated with 70 Gr radiation plus simultaneous Cetuximab, a targeted EGFR therapy used to sensitize the tumor to radiation. I was not a candidate for Cis or Carboplatin due to the loss of hearing in one ear with my surgery. Compared to the platinum chemos, this drug at weekly intervals during radiation was not terrible, though I had many side effects. I might suggest that you ask about this drug, as my oncologist at Mayo recommended it but it was not on the radar of the onco at University of Michigan where I had treatment, until we mentioned the Mayo recommendation. I understand HPV SCC is much more susceptible to radiation than my tumor, so I might research if this drug is even used for that scenario. At my immunotherapy Clinic in the Bahamas, I met two men both in their 40s with tonsillar HPV. Both men had surgery with select neck dissection. The one who had chemo with radiation has been clear over 15 years. The man who chose to avoid the side effects of radiation developed metastatic SCC in lymph nodes and tried lo dose radiation and other nontraditional treatments, but I have lost contact with him and do not know his outcome. I am currently on an immunotherapy drug infusion of Cemiplimab every 6 weeks via my Mayo oncologist and it is currently controlling my kidney metastasis with NED for almost a year now. Being non HPV, mine is considered a skin SCC, so treatment recommendations will be different. I strongly recommend a second opinion, preferably at a large cancer center for the most up to date options for treatment. Good luck to you both. Neck radiation is not fun, and a stomach tube may be needed for nutrition, but it is all worth it for good results.

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Thank you for your reply. He will undergo 35 rounds of radiation. My question is if the cisplatin is also required at his age or should he be offered another drug or go with radiation alone without chemotherapy. If anyone could comment if their treatment course took the same direction, it would be most helpful. I am leaning towards a second opinion.

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@sandralea58

Thank you for your reply. He will undergo 35 rounds of radiation. My question is if the cisplatin is also required at his age or should he be offered another drug or go with radiation alone without chemotherapy. If anyone could comment if their treatment course took the same direction, it would be most helpful. I am leaning towards a second opinion.

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Dear @sandralea58
My cancer was of the Pyriform Sinus, which is located around the vocal cord area. This was in 2018 and it was non-HPV. While researching my treatment options, I was informed that HPV-type cancers are more treatable with less radiation/chemo treatments than non-HPV type cancers. Has this line of thinking changed in a few short years? The treatment regimen you describe is practically the same as what mine was. Concerning that, my oncologist was adamant about receiving the chemotherapy. When pressed, he admitted to me that my chances of being cured, would improve by about 2% if chemo were included with the radiation. My husband has severe hearing loss, so when I learned that the chemo could cause hearing loss, I opted for radiation alone. If two of us suffer hearing loss, how would our household function? One of us has to hear the dog barking! Please know that I considered this long and hard. Many people would grab that 2% increase. These decisions are very difficult to get through--almost as difficult as the treatment itself! I pray the decision you both make will be the right one. Best wishes to you and yours.

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@thomason

Dear @sandralea58
My cancer was of the Pyriform Sinus, which is located around the vocal cord area. This was in 2018 and it was non-HPV. While researching my treatment options, I was informed that HPV-type cancers are more treatable with less radiation/chemo treatments than non-HPV type cancers. Has this line of thinking changed in a few short years? The treatment regimen you describe is practically the same as what mine was. Concerning that, my oncologist was adamant about receiving the chemotherapy. When pressed, he admitted to me that my chances of being cured, would improve by about 2% if chemo were included with the radiation. My husband has severe hearing loss, so when I learned that the chemo could cause hearing loss, I opted for radiation alone. If two of us suffer hearing loss, how would our household function? One of us has to hear the dog barking! Please know that I considered this long and hard. Many people would grab that 2% increase. These decisions are very difficult to get through--almost as difficult as the treatment itself! I pray the decision you both make will be the right one. Best wishes to you and yours.

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I feel like I just found my older brother. I was diagnosed with squamous cell throat cancer April 2019. I underwent 35 doses of targeted radiation and 6 weekly doses of cisplatin. The first 2 weeks were ok. The next 10 weeks were horrible however I did walk my daughter for her wedding at that time. I also had a feeding tube.

I was ok for 1 petscan then it came back. I had a neck dissection March 2020. They could not remove it all. I started keytruda and it was good for another year. It stopped working April 2021 and they did 5 more radiations and chemo over the summer. I could not tolerate the chemo this second time and they took me off it. I had a tracheostomy august 2021. I was going downhill fast. They put me on opdivo since then and life has been good. I still have chronic throat cancer but have a monthly dosage of opdivo and have somewhat returned to "normal.". No side effects.

All at Mayo Rochester and Fort Walton Medical. Mayo Pall Care really gets a big assist too. I'm a lucky strong guy. Your hubby can make it. Accept it. Work it.

Good luck!

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Hello, my diagnosis was very similar to your husband’s except that my cancer origin was in the back of my tongue (HPV squamous cell carcinoma). I am 65 years old and also was aware and sought diagnosis based upon a lump in my neck (lymph node). I just completed 35 radiation treatments and 7 weeks of chemotherapy. I also had 7 weeks of chemo prior to my regular treatments due to the size of my neck tumor. The treatments appear to have done the intended job as my recent CT neck and upper body scan showed no cancer. I’m scheduled for a PET scan in December. I’m hopeful that it will be “clean” as well. I will say that the treatment side effects were rough, but with support from my wife, doctors, and nurses, I was able to make it through. I am about seven weeks out from my last radiation treatment. My side effect symptoms are mostly gone except I continue to have dry mouth and my taste buds are still not right, but appear to be improving. I had a feeding tube, but I had it removed last week. I pray your husband’s treatments go well and he has an end result of being cancer free!

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That seems about right as treatment goes, assuming surgery to remove said lump is included. I would recommend a feeding tube as well because eating and swallowing will become an issue during and for a short while after the radiation. It's not going to be pleasant or easy but some battles must be faced. Good luck. Remember, we are here for him/you if issues should come up as time goes by.

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@jimthomasintl

I feel like I just found my older brother. I was diagnosed with squamous cell throat cancer April 2019. I underwent 35 doses of targeted radiation and 6 weekly doses of cisplatin. The first 2 weeks were ok. The next 10 weeks were horrible however I did walk my daughter for her wedding at that time. I also had a feeding tube.

I was ok for 1 petscan then it came back. I had a neck dissection March 2020. They could not remove it all. I started keytruda and it was good for another year. It stopped working April 2021 and they did 5 more radiations and chemo over the summer. I could not tolerate the chemo this second time and they took me off it. I had a tracheostomy august 2021. I was going downhill fast. They put me on opdivo since then and life has been good. I still have chronic throat cancer but have a monthly dosage of opdivo and have somewhat returned to "normal.". No side effects.

All at Mayo Rochester and Fort Walton Medical. Mayo Pall Care really gets a big assist too. I'm a lucky strong guy. Your hubby can make it. Accept it. Work it.

Good luck!

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Thank you for sharing. Did you have any permanent side effects from the Cisplatin? What your cancer HPV+?

Glad you managed to find a way forward and yes, we/he will work hard for it!

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@calenbd

Hello, my diagnosis was very similar to your husband’s except that my cancer origin was in the back of my tongue (HPV squamous cell carcinoma). I am 65 years old and also was aware and sought diagnosis based upon a lump in my neck (lymph node). I just completed 35 radiation treatments and 7 weeks of chemotherapy. I also had 7 weeks of chemo prior to my regular treatments due to the size of my neck tumor. The treatments appear to have done the intended job as my recent CT neck and upper body scan showed no cancer. I’m scheduled for a PET scan in December. I’m hopeful that it will be “clean” as well. I will say that the treatment side effects were rough, but with support from my wife, doctors, and nurses, I was able to make it through. I am about seven weeks out from my last radiation treatment. My side effect symptoms are mostly gone except I continue to have dry mouth and my taste buds are still not right, but appear to be improving. I had a feeding tube, but I had it removed last week. I pray your husband’s treatments go well and he has an end result of being cancer free!

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Thank you for your reply and prayers.

What drug did they use for your chemotherapy. We were only offered 2 cycles of high dose cisplatin 3 weeks apart. The side effects are very concerning.

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