1. < Head & Neck Cancer

HPV P16 positive cancer

Posted by frankbc @frankbc, Oct 27, 2020

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.

toony | @toony | Jan 1, 2023

I was stage 4 head and neck.. I went to cancer treatment center of America... I had harsh chemo and radiation .. with some damage hard to swallow ruined valves in my heart had to have replaced.. but I have been cancer free for 10 years... also was hpv

REPLY
toony | @toony | Jan 1, 2023

Yes I was 10 years cancer free went to cancer treatment center of America. Difficult in swallowing and valve issues in heart that had to be replaced ...

REPLY
newtonguecancer | @newtonguecancer | Jan 1, 2023
In reply to @newtonguecancer "Do you think they should always take the lymph nodes out for tongue cancer ? That’s..." + (show)
@newtonguecancer

Do you think they should always take the lymph nodes out for tongue cancer ? That’s what I am thinking.

Jump to this post

How do I know if the lymph nodes are cancerous ? Should they always be taken out after tongue surgery?

REPLY
1 reply
calenbd | @calenbd | Jan 2, 2023
In reply to @newtonguecancer "How do I know if the lymph nodes are cancerous ? Should they always be taken..." + (show)
@newtonguecancer

How do I know if the lymph nodes are cancerous ? Should they always be taken out after tongue surgery?

Jump to this post

Hello,
I had HPV SCC in my tongue and one lymph node. I’m in remission now since my treatment ended in September, 2022. To answer your question, to my knowledge, a biopsy is the only sure way to determine if the lymph node is cancerous. My biopsy showed it was positive for cancer. The treatment for my cancer was radiation, both the tongue and the lymph node, not removal by surgery. I hope this helps. I pray you have complete recovery at the end of your treatment journey. God bless.

REPLY
1 reply
michael3319 | @michael3319 | Jan 3, 2023

Hi Frank, I was diagnosised with HPVp16 cancer in an unknown site on 5 Jan 2017. They BELIEVED it was the soft
tissue under the back of the tongue but not sure. Nonetheless, the treatment plan was agreed upon by both my
UW-Madison,WI medical team and me. I consisted of: fine needle biopsy of 2 lymph nodes in neck, removed of
those 2 nodes as well 39 more that were in that path and 7 weeks/5 days a week of radiation. Found cells in 2 nodes but not the other 39. PLUS, the cancer cells remained in those 2 nodes and had not spread. 5 plus years of exams every 6 months by both oncologist and ENT and all clear as of today. another exam in 2 weeks and hoping I get the all clear response.

I firmly believe that if I hadn't had the nodes removed and tested, I would have tested positive by now because
the radiation focused to an unknown site under my tongue and not the 2 nodes in my lower neck/clavicle area where the nodes were located. Not sure if this helps but hang in there. Journey may be tough but you can do it.
God Bless You & I pray that your 2023 is filled with happiness and a positive recovery!

REPLY
3 replies
newtonguecancer | @newtonguecancer | Jan 4, 2023
In reply to @michael3319 "Hi Frank, I was diagnosised with HPVp16 cancer in an unknown site on 5 Jan 2017...." + (show)
@michael3319

Hi Frank, I was diagnosised with HPVp16 cancer in an unknown site on 5 Jan 2017. They BELIEVED it was the soft
tissue under the back of the tongue but not sure. Nonetheless, the treatment plan was agreed upon by both my
UW-Madison,WI medical team and me. I consisted of: fine needle biopsy of 2 lymph nodes in neck, removed of
those 2 nodes as well 39 more that were in that path and 7 weeks/5 days a week of radiation. Found cells in 2 nodes but not the other 39. PLUS, the cancer cells remained in those 2 nodes and had not spread. 5 plus years of exams every 6 months by both oncologist and ENT and all clear as of today. another exam in 2 weeks and hoping I get the all clear response.

I firmly believe that if I hadn't had the nodes removed and tested, I would have tested positive by now because
the radiation focused to an unknown site under my tongue and not the 2 nodes in my lower neck/clavicle area where the nodes were located. Not sure if this helps but hang in there. Journey may be tough but you can do it.
God Bless You & I pray that your 2023 is filled with happiness and a positive recovery!

Jump to this post

Hi right now I am waiting for them to decide to remove the nodes that are swollen and they don’t appear to be in any rush. How long before you had a problem before they removed the nodes ? Where were the positive nodes located were they in the sumandibular region ? Thanks

REPLY
1 reply
newtonguecancer | @newtonguecancer | Jan 4, 2023
In reply to @michael3319 "Hi Frank, I was diagnosised with HPVp16 cancer in an unknown site on 5 Jan 2017...." + (show)
@michael3319

Hi Frank, I was diagnosised with HPVp16 cancer in an unknown site on 5 Jan 2017. They BELIEVED it was the soft
tissue under the back of the tongue but not sure. Nonetheless, the treatment plan was agreed upon by both my
UW-Madison,WI medical team and me. I consisted of: fine needle biopsy of 2 lymph nodes in neck, removed of
those 2 nodes as well 39 more that were in that path and 7 weeks/5 days a week of radiation. Found cells in 2 nodes but not the other 39. PLUS, the cancer cells remained in those 2 nodes and had not spread. 5 plus years of exams every 6 months by both oncologist and ENT and all clear as of today. another exam in 2 weeks and hoping I get the all clear response.

I firmly believe that if I hadn't had the nodes removed and tested, I would have tested positive by now because
the radiation focused to an unknown site under my tongue and not the 2 nodes in my lower neck/clavicle area where the nodes were located. Not sure if this helps but hang in there. Journey may be tough but you can do it.
God Bless You & I pray that your 2023 is filled with happiness and a positive recovery!

Jump to this post

They took 39 nodes from one side or both sides. Seems like a lot hoe did they decide that ? Is that considered a radical node dissection? How was the pain and recovery after the surgery ? Any lingering effects ?

REPLY
1 reply
jerrysgirl3 | @jerrysgirl3 | Jan 4, 2023
In reply to @ptlhrms "Glad to hear your husbands tratment is going well. Initially the MDs did not know the..." + (show)
@ptlhrms

Glad to hear your husbands tratment is going well. Initially the MDs did not know the primary source of my cancer, but that all changed when they found the primary source behind my right tonsil. As I mentioned in my last reply, I had been scoped many times but the ENT’s never looked behind my tonsils. They found my primary source when they put me under to have the feeding tube inserted. Luckily, I had a great surgeon that took the time to further explore in my mouth for the primary source. As you may know, by knowing where the primary source was they could now begin a course of targeted radiation for the specific area. As far as losing my taste after treatment, my MDs said it could take up to a year. For me it took close to two years to get my taste back to about 99% but everybody is different. Taste does return, but it has a short memory when it starts to return, the first bite is always the most flavor then it starts to diminish until you take a bite of something else. Any other questions feel free to ask. Always willing to share my experience if it can help others. Keep the faith and stay strong!

Jump to this post

What were your symptoms ? Does anyone here also have or been diagnosed with thyroid cancer or leukemia? HPV is human papilloma virus, no?

REPLY
jerrysgirl3 | @jerrysgirl3 | Jan 4, 2023
In reply to @michael3319 "Hi Frank, I was diagnosised with HPVp16 cancer in an unknown site on 5 Jan 2017...." + (show)
@michael3319

Hi Frank, I was diagnosised with HPVp16 cancer in an unknown site on 5 Jan 2017. They BELIEVED it was the soft
tissue under the back of the tongue but not sure. Nonetheless, the treatment plan was agreed upon by both my
UW-Madison,WI medical team and me. I consisted of: fine needle biopsy of 2 lymph nodes in neck, removed of
those 2 nodes as well 39 more that were in that path and 7 weeks/5 days a week of radiation. Found cells in 2 nodes but not the other 39. PLUS, the cancer cells remained in those 2 nodes and had not spread. 5 plus years of exams every 6 months by both oncologist and ENT and all clear as of today. another exam in 2 weeks and hoping I get the all clear response.

I firmly believe that if I hadn't had the nodes removed and tested, I would have tested positive by now because
the radiation focused to an unknown site under my tongue and not the 2 nodes in my lower neck/clavicle area where the nodes were located. Not sure if this helps but hang in there. Journey may be tough but you can do it.
God Bless You & I pray that your 2023 is filled with happiness and a positive recovery!

Jump to this post

How were you diagnosed ? How did they know to test or I should say what tests/labs did they take ? I'm having all sorts of issues (past breast, thyroid and CLL leukemia) but my next nodes are the worst. And docs says"oh labs look good. See you in six months " they all just take regular cbcs etc. nothing that might find something else.

REPLY
michael3319 | @michael3319 | Jan 4, 2023

Hi!
I told them to do the fine needle biopsy on the largest of the 2 enlarged nodes.
Results came back as questionable. Then I had an MRI & PET exam that indicated
red/hot spots BUT still couldn't confirm that it was cancer.
The ONLY way to be sure was to have the 2 nodes removed and examined by a
radiologist. I said do the removal and they were cancerous but still remained in the node..did not
spread. My surgeon went further and took 39 more nodes, tested each one and found no indication
of cancer cells. He did that just to be sure it hadn't spread to other nodes and the results negative.

REPLY
View MoreView Less
Please sign in or register to post a reply.