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.

anybody10 | @anybody10 | Jan 21, 2023
In reply to @hrhwilliam "If the surgery is the primary treatment and you say you "will refuse surgery almost definitely",..." + (show)
@hrhwilliam

If the surgery is the primary treatment and you say you "will refuse surgery almost definitely", then how do you expect a good outcome? While the thought of surgery can be rather scary, it may be the best option.
HPV16 caused cancer is easier to eliminate but the notion that it is more "treatable" rather depends on your definition of that word. A successful outcome with five year success rate is vastly better in HPV16 cancer as opposed to standard squamous cell carcinoma but I believe you will find the treatments are much the same.
It will not be an easy road nor will life's plans go on as usual. This is going to take over your life for a bit. Your choice in the matter comes down to live or die. My dear wife who battles the damage of MS every day is fond of saying "Life is what happens when you are making other plans." At this point life has directed you to deal with this issue, regardless of any other plans you may have made. But I think I can speak for most of us who have put this in our past, this will be a battle you can win and a life changing event that can be considered in an odd sort of way, for the better. Good luck.

Jump to this post

Yes I did say no surgery. I am an elderly women with no expectation of living for many more years. I don't have time to learn to speak again with a tongue flap. The doctors have chosen radiation and chemo as the treatment plan. I will give this a go and hope for the best. If the going gets to rough I will choose palliative care.

REPLY
1 reply
mrj08 | @mrj08 | Jan 21, 2023
In reply to @anybody10 "I am getting a PET scan on Monday with a follow up appointment with a radiologist...." + (show)
@anybody10

I am getting a PET scan on Monday with a follow up appointment with a radiologist. The plan is radiation and chemo. Please can you tell what residual side effects you are still experiencing? How long did your radiation and chemo last? Weeks, months or all year? I really would appreciate straight talk. So glad that your December scan showed no cancer. I am an elderly woman and have been through a lot of tough things in my life. This diagnosis just seems like one more thing I must endure when I know death is just around the corner

Jump to this post

My husband was diagnosed on 1/6/23 with base of the tongue cancer with 2 lymph nodes involved. He had the pet scan yesterday and we have not received any results yet. We did meet with a complete cancer team on Thursday. They told him his treatment will be 7 weeks of radiation 5 days a week and chemo once every 3 weeks. He will start in 2 weeks. They told him the radiation will take care of the lymph nodes.

REPLY
calenbd | @calenbd | Jan 21, 2023
In reply to @anybody10 "I am getting a PET scan on Monday with a follow up appointment with a radiologist...." + (show)
@anybody10

I am getting a PET scan on Monday with a follow up appointment with a radiologist. The plan is radiation and chemo. Please can you tell what residual side effects you are still experiencing? How long did your radiation and chemo last? Weeks, months or all year? I really would appreciate straight talk. So glad that your December scan showed no cancer. I am an elderly woman and have been through a lot of tough things in my life. This diagnosis just seems like one more thing I must endure when I know death is just around the corner

Jump to this post

In my case, I had 6 weeks of induction chemotherapy (carboplatin) prior to the standard treatment of 7 weeks of chemotherapy (cisplatin) and radiation (35 sessions) due to the size of my lymph node tumor on my neck. I won’t sugar coat the fact that the side effects during the later stage of treatment were not pleasant. Throat pain, excess mucus, dry mouth and throat, and loss of taste and appetite were the main ones. In my case, I ended up with a feeding tube, which actually was a blessing, as I had lost over 40 pounds. It’s tough, but you can get through with the knowledge that it is going to save or prolong your life. My side effects now are minimal had hopefully will go away or improve over time. That are some loss of taste (it’s about 50% of what it once was) and dry mouth. I can live with these. I don’t know if you will get any or all of these side effects, but I would recommend you follow your doctor’s advice and take the medication that’s offered to help alleviate them. I hope this helps. Reach out anytime you have a question. Take care.

REPLY
1 reply
anybody10 | @anybody10 | Jan 22, 2023
In reply to @calenbd "In my case, I had 6 weeks of induction chemotherapy (carboplatin) prior to the standard treatment..." + (show)
@calenbd

In my case, I had 6 weeks of induction chemotherapy (carboplatin) prior to the standard treatment of 7 weeks of chemotherapy (cisplatin) and radiation (35 sessions) due to the size of my lymph node tumor on my neck. I won’t sugar coat the fact that the side effects during the later stage of treatment were not pleasant. Throat pain, excess mucus, dry mouth and throat, and loss of taste and appetite were the main ones. In my case, I ended up with a feeding tube, which actually was a blessing, as I had lost over 40 pounds. It’s tough, but you can get through with the knowledge that it is going to save or prolong your life. My side effects now are minimal had hopefully will go away or improve over time. That are some loss of taste (it’s about 50% of what it once was) and dry mouth. I can live with these. I don’t know if you will get any or all of these side effects, but I would recommend you follow your doctor’s advice and take the medication that’s offered to help alleviate them. I hope this helps. Reach out anytime you have a question. Take care.

Jump to this post

Thank you for explaining your experiences with this horrible disease. I don't know if I mentioned that I am an elderly women of 79 and still on the fence about treatment options. Do I want quality or quantity.

REPLY
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 22, 2023
In reply to @anybody10 "Yes I did say no surgery. I am an elderly women with no expectation of living..." + (show)
@anybody10

Yes I did say no surgery. I am an elderly women with no expectation of living for many more years. I don't have time to learn to speak again with a tongue flap. The doctors have chosen radiation and chemo as the treatment plan. I will give this a go and hope for the best. If the going gets to rough I will choose palliative care.

Jump to this post

Age certainly is and should always be a major factor in health care choices and I applaud your courage to make your decisions based on all factors. I have dealt with too many young people lately who second guess the doctors or don't take the cancer seriously. I am nearing the age where I would probably seek palliative care myself rather than go through what I went through twenty-some years ago. May God comfort you on your journey.

REPLY
toony | @toony | Jan 23, 2023
In reply to @anybody10 "I to have been diagnosed with positive HPV16 cancer on the back of the tongue and..." + (show)
@anybody10

I to have been diagnosed with positive HPV16 cancer on the back of the tongue and a tumor on the voice box. I am waiting for an appointment to find out where I go from here. It's getting more painful daily with a constant sore throat, headache and ear pain. I am 79 and will not go through any disfiguring surgeries. I would love to hear from anyone who has been through this. Please don't mince words I want to know what to expect.

Jump to this post

I had it on back of tongue and voice box stage 4 . Chemo and radiation got rid of mine. Almost 10 years now . First 3 radiations i had no more ear pain. But , side effects after it all are the killer I have not felt good since .and it also ruined the heart valves..

REPLY
newtonguecancer | @newtonguecancer | Jan 26, 2023

Hi I was diagnosed with hpv 16 tongue cancer. They took a small piece of tongue and then had to do a level 1 to 4 lymph node removal through a neck dissection. During the dissection there was damage to the nerve for my left voice box which is not working right now and then I also had my thoracic duct injured so I have a chyle leak I am dealing with now in addition to recovering from the neck dissection and I have to get all of these things resolved so I can start radiation by the 13 th of February. It has been a lot to go through but the good news is that after taking out the lymph nodes there was no cancer evident or node problems left from the PET and CAT scans which were performed. Does anyone have knowledge of these issues and advice ? Thanks

REPLY
toony | @toony | Jan 28, 2023
In reply to @anybody10 "I to have been diagnosed with positive HPV16 cancer on the back of the tongue and..." + (show)
@anybody10

I to have been diagnosed with positive HPV16 cancer on the back of the tongue and a tumor on the voice box. I am waiting for an appointment to find out where I go from here. It's getting more painful daily with a constant sore throat, headache and ear pain. I am 79 and will not go through any disfiguring surgeries. I would love to hear from anyone who has been through this. Please don't mince words I want to know what to expect.

Jump to this post

I went to ctca in zion Illinois.. I still have my voice box no disfigurement I just have bad side effects. I had to have the valves in my heart replaced and I have trouble swallowing and I ended up with 2 autoimmune diseases lupus and MS ..I did for radiation and chemo get a threachea and a feeding tube and a port ... but said they all came out after my treatments.. they did like 6 months after I was done.. I was stage4

REPLY
1 reply
newtonguecancer | @newtonguecancer | Feb 2, 2023
In reply to @toony "I went to ctca in zion Illinois.. I still have my voice box no disfigurement I..." + (show)
@toony

I went to ctca in zion Illinois.. I still have my voice box no disfigurement I just have bad side effects. I had to have the valves in my heart replaced and I have trouble swallowing and I ended up with 2 autoimmune diseases lupus and MS ..I did for radiation and chemo get a threachea and a feeding tube and a port ... but said they all came out after my treatments.. they did like 6 months after I was done.. I was stage4

Jump to this post

How did they define you as stage 4 had it metasitisized? How effective was the radiation for you ?

REPLY
toony | @toony | Feb 3, 2023

The tumor in my neck was 6 cm ... and yes it was in the lymph nodes in my face. And the radiation actually helped im cancer free.. but it also was in my voice box going down my throat .only down fall reason why mayo clinic ..because I have so much scar tissue in my neck ..now I need my cartroid arteries opened .

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