Hello, I am reaching out to see if anyone in this group is diagnosed with HPV P16 positive cancer We have unknown origin and are being treated for head and neck cancer. Anyone else with similiar presenation?.
Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.
I just got diagnosed with this type of cancer. Am yet to start treatment but am told it will be Cisplastin (Chemo) and targeted radiation for 7 weeks. My mum had a very similar cancer treated the same way a couple of years ago. She has had significant damage done by the radiation and now cannot keep her weight up, even two years later. I would like to suggest a lower dose of radiation since this P16+ responds so well to radiation anyway. I'm hoping the radiology oncologist will agree...
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Sorry, I can’t be of help. My husbands cancer was stage 4 and they didn’t consider radiation an option.
Hi @chamst and welcome to Mayo Clinic Connect. I can imagine that you are nervous about radiation and treatment after seeing what you mum went through and what she continues to struggle with even now. Was your mum's cancer also HPV-positive? Was your HPV-positive cancer found in the cervix area or oropharynx (oral cavity) area?
Thanks Colleen, I am male so cancer was obviously Oropharyngeal for me. And yes mum's was also HPV positive. They tell me its not hereditary however it is very coincidental nonetheless.
Chamst, HPV infections are not uncommon. So it is entirely possible for both your mom and you to have HPV-related cancers without it being hereditary.
I’d like to bring fellow members @ptlhrms @alpaca @loli @fxdwing and @catlyn into this discussion as they have experience with oropharyngeal cancer and HPV positive cancers.
Chamst, have you had a chance to discuss your concerns about radiation and dosage with the radiation oncologist?
Hi@chamst I belong to a biggish group in New Zealand and although my cancer was not HPV many of my friends have had an HPV-related head and neck cancer. It's due to a very common virus that most of us shake off but which for an unlucky few lurks for years or decades until it causes a cancerous tumour. Luckily, HPV-related head and neck cancers are easier to treat and have a better survival rate. Best of luck with your treatment.
Hi Frank my bf has head and neck squamous cell carcinoma hpv16.
He had gotten genital warts when he was 26 yrs old. The virus ftom the genital warts stayed dormant for 42 yrs. He was diagnosis Feb 24, 2020. At age of 68. It’s metastasized from throat to left side of his neck to his lung. He had completed 6 weeks of cisplatin and radiation. 3 months later pets scan showed it moved to lymph node near left lung on wind pipe. He started Keytruda sept of 2020. Had completed one year.
He has one more yr on Keytruda.
After that he will be taken off. And I guess we can only see what happens. At this point we can only hope. He has been told if he goes off the Keytruda now, his cancer will return, maybe after 2nd year he will be ok? At this point this is giving him time. He’s not doing that well, but hanging in there. Has tons of side effects.
I have hpv positive head and neck,stage four it’s in both my lymph nodes on both sides of my neck
Welcome @autie5878. I’d like to bring @chamst @frankbc and @ptlhrms back into this discussion to support you.
Autie, is this a new diagnosis for you with HPV positive head and neck cancer? What treatments have you had or will you be having?
Hi I was positive for HPV 16 cancer that was in my tongue it was considered stage 1. They removed the primary tumor and then additional area on side of tongue that had moderate to severe dysplasia. The biopsy report from the initial cancer sugery revealed positive for hpv 16 and no spread to blood or lymph but some perineural involvement. I saw drs at Sloan Kettering, John’s Hopkins, and the University of Rochester. Of all of them only the one at Sloan Kettering recommended to take the lymph nodes out right at the same time of tongue surgery. Now today I went in for an appointment and he determined that I had a swollen lymph node that was concerning. Now I don’t know what to do next? Should I go to Sloan Kettering for neck dissection since it appears his idea was right and he does a lot of neck dissections ? I called today and they could get me in next Friday and ideas would be appreciated, it’s just crazy how it was undetectable in pet scan and even from the biopsy but there is a chance it could have still spread to my lymph nodes. Should neck dissection be automatic for people with oral cancer ? What should I do next ?
You will have to reflect inward, and have solace that you can move forward with and still make peace with yourself. For myself, HNSC base of tongue (PCR16 positive) 8.5 weeks of chemo and radiation. Mine was inoperable, but they left me with a lot of collateral damage. After all the treatments, they told me when/if it came back, I would be facing complete removal of my jaw and a portion of my throat. I have prayed long and hard and made peace with myself and my maker. I did the chemo and radiation for my wife of 36 years. This time I will leave it in God's hands, as he will never give us more than we can handle. God is always with us.
Do you think they should always take the lymph nodes out for tongue cancer ? That’s what I am thinking.
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