I just read that yes, Proton tgerapy is commonly used for HPV-positive base-of-tongue cancers. It can cover the primary tumor and involved cervical nodes while reducing dose to salivary glands, oral cavity, spinal cord, and swallowing structures—often leading to fewer side effects (dry mouth, taste changes, swallowing problems) compared with some photon plans.
I’m going to have to ask the doctors at jhopkins if I would be a good candidate.
Would you mind telling me about the side effects you had from the proton therapy? Was there scarring involved? Anything really adverse?
@justwow I am 8.5 weeks out from both chemotherapy and 7 weeks/35 treatments of proton therapy for stage 2 tonsil cancer with one lymph node affected on each side of my neck. Surgery was not recommended. lost most all my taste by week 3. I am just now regaining some taste. I still do not have much of any saliva. I experienced mouth sores and some associated pain. The radiation did cause the skin on the outside of my neck to burn and scab around the 5th week of treatment. I followed my team's skin care directions and it healed by the end of treatment and has been and still is perfectly normal in appearance. I do not believe that you should experience any scarring from proton treatments.
@justwow I am 8.5 weeks out from both chemotherapy and 7 weeks/35 treatments of proton therapy for stage 2 tonsil cancer with one lymph node affected on each side of my neck. Surgery was not recommended. lost most all my taste by week 3. I am just now regaining some taste. I still do not have much of any saliva. I experienced mouth sores and some associated pain. The radiation did cause the skin on the outside of my neck to burn and scab around the 5th week of treatment. I followed my team's skin care directions and it healed by the end of treatment and has been and still is perfectly normal in appearance. I do not believe that you should experience any scarring from proton treatments.
@metsgirl
Thank you for responding to my post - I just requested an MRI with contrast because the wording /descriptions in the findings of the CT and Pet scans differ. There may be more involvement - (though I pray to god not)
Anyway, I’m in process of switching insurance and will probably get whatever is recommended at my local center. I hope to find out more soon.
How did you handle everything emotionally? The first week I think I was just stunned. I took it off the chin… yesterday I had a meltdown with tears, and today I’ve withdrawn feeling depressed.
Que sera, sera.
I just read that yes, Proton tgerapy is commonly used for HPV-positive base-of-tongue cancers. It can cover the primary tumor and involved cervical nodes while reducing dose to salivary glands, oral cavity, spinal cord, and swallowing structures—often leading to fewer side effects (dry mouth, taste changes, swallowing problems) compared with some photon plans.
I’m going to have to ask the doctors at jhopkins if I would be a good candidate.
Would you mind telling me about the side effects you had from the proton therapy? Was there scarring involved? Anything really adverse?
@justwow I agree with Metsgirl comments. Very little adverse lasting effects. During treatment I lost all my taste, saliva production went down almost completely, Dry mouth, sores in throat, Very difficult to eat/swallow, Radiation burns to the neck. However, Two years out I am 95% back to normal. I have some slight scarring inside at my throat at base of tongue but It doesnt really effect me. No outside scars and My appearance hasn't changed other than I cannot grow bread where I was treated. You are going through a very scary time as you have alot of unknowns. Your outcome will be excellent but the 6 month journey will not be so pleasant. Hang in there as most everyone on here has been in your shoes and We are doing well! Good speed.
@metsgirl
Thank you for responding to my post - I just requested an MRI with contrast because the wording /descriptions in the findings of the CT and Pet scans differ. There may be more involvement - (though I pray to god not)
Anyway, I’m in process of switching insurance and will probably get whatever is recommended at my local center. I hope to find out more soon.
How did you handle everything emotionally? The first week I think I was just stunned. I took it off the chin… yesterday I had a meltdown with tears, and today I’ve withdrawn feeling depressed.
Que sera, sera.
@justwow I was stunned when I was first diagnosed via CT scan and biopsy as I was asymptomatic. It took almost a month for me to see a local radiology oncologist. During that time my emotions were a roller coaster. The oncologist was very blunt about his treatment plan which included a prophylactic feeding tube. Something did not sit right with me after that. I shifted from being upset about my diagnosis and treatment to being proactive in doing research to choose the best treatment and care team for me. I switched insurance to a PPO that allowed me to be treated out of town. I set up consultations with 5 top cancer centers and found out about proton therapy. My focus became on how treatable and curable this cancer is. I know the side effects are pretty miserable, but there is a positive end to focus on. You get through treatment day by day. It will end and you will improve.
Many folks on here went through treatment before the advances we can now take advantage of.
If you are a person of faith lean into that. If not, take comfort in the science. Don't focus on the short term pain and discomfort. It is truly doable. I expected worse. My goals were to go to treatment, follow my care team's instructions and rest as much as possible. I ultimately went out of town for treatment and stayed in a hotel for 2 months.
Just get your final diagnosis and treatment plan settled to your satisfaction and move forward. We are all here to provide what support we can
God bless!
I’m usually very courageous about anything life kicks my way, but for once I’m stumped. Honestly terrified. I’m putting my best face forward for my family.
I’m 63/f. with early stage 1/hpv pos16 scc. which spread to my left neck lymph nodes.
I haven’t been intimate for well over 15 years, and I am blown away that no lab tests, etc ever picked this up…
I have thickening at the left tongue base, and it is in at least 3 lymph nodes in the left side only of my neck.
Dr said to remove the area at base of tongue with robotic surgery, and do neck dissection/ remove all lymph nodes at the same time.
I’m beside myself here. There is no cure for the virus, and the cancer can and does reoccur…
Then why have my neck dissected, damaging vital nerves that control areas of my face, shoulders, arms etc? Everyone tells me it’s better than radiation- but
I don’t want to be disfigured. I don’t want any chance of losing my ability to swallow, speak, eat, move my mouth, become unable to raise my arms which means no longer able to pick up my grandbabies
I don’t know where to start, who to really trust. I am considering both MD Anderson, and John’s Hopkins. Both are great -
@justwow I concur with @jonesja This is winnable. Welcome to the Head and Neck group. You can get a lot of help here from patients who have gone through what you are going through. Myself included.
MD Anderson or Johns Hopkins are both great treatment centers. You are blessed to have these options. Now you have to wrap your head around the fact that your life focus for the next few months is to rid yourself of this cancer.
You can always start your own discussion in this group at anytime you need specific attention / answers. Please don't hesitate to do so. It often leads to more and faster responses than being on another discussion.
In the meantime, as Winston Churchill often said, "Courage." You can do this. You will be stronger for it, I promise.
I just read that yes, Proton tgerapy is commonly used for HPV-positive base-of-tongue cancers. It can cover the primary tumor and involved cervical nodes while reducing dose to salivary glands, oral cavity, spinal cord, and swallowing structures—often leading to fewer side effects (dry mouth, taste changes, swallowing problems) compared with some photon plans.
I’m going to have to ask the doctors at jhopkins if I would be a good candidate.
Would you mind telling me about the side effects you had from the proton therapy? Was there scarring involved? Anything really adverse?
@justwow I am just over a month out from 5.5 weeks of proton and chemo for T2-N1-M0 HPV16+ SCC of the left tonsil.
Just getting my sense of taste back a bit now. That (and the throat pain) were the worst side effects. Eating was almost impossible. I narrowly dodged the PEG feeding tube after losing nearly 20 lbs.
As far as scarring goes, once radiation stopped I did develop a very painful radiation burn on my neck (expected). It was like a bad second degree sunburn (blistering from my jawline to my collar bone). That’s mosly healed now, but could leave some minor scarring. Too soon to tell.
All in all, it was a rough experience, but I have an exclamation prognosis (~90% cure rate). Very pleased I chose proton over photon and Mayo Rochester in particular.
I’m usually very courageous about anything life kicks my way, but for once I’m stumped. Honestly terrified. I’m putting my best face forward for my family.
I’m 63/f. with early stage 1/hpv pos16 scc. which spread to my left neck lymph nodes.
I haven’t been intimate for well over 15 years, and I am blown away that no lab tests, etc ever picked this up…
I have thickening at the left tongue base, and it is in at least 3 lymph nodes in the left side only of my neck.
Dr said to remove the area at base of tongue with robotic surgery, and do neck dissection/ remove all lymph nodes at the same time.
I’m beside myself here. There is no cure for the virus, and the cancer can and does reoccur…
Then why have my neck dissected, damaging vital nerves that control areas of my face, shoulders, arms etc? Everyone tells me it’s better than radiation- but
I don’t want to be disfigured. I don’t want any chance of losing my ability to swallow, speak, eat, move my mouth, become unable to raise my arms which means no longer able to pick up my grandbabies
I don’t know where to start, who to really trust. I am considering both MD Anderson, and John’s Hopkins. Both are great -
@justwow Hello, if it will be a help let me pass you my experience; I had radiotherapy all the way and rejected any intervention but as a result after 3 years i have developed Radiation Induced Bracial Plexus in other words I have lost the ability to use my arms.
During and after radiotherapy for some time I couldn't swallow, taste etc. but within the following 6 months I was over 80% recovered from everything until one day(3 years later) I started feeling tingling on my neck and within next 18 months I have lost the ability to use my arms. So there is no guarantee also for Radiotherapy, nevertheless I have been told that a cut can heal but for a burnt nerve there is no coming back; I really want to verify this with the doctor that has given you the heads up on this matter, if you could pass me his/her details I would like to get in touch with him/her because whenever I talk to a doctor about RIBP they seem to be surprised, I have never met a doctor that is aware of this side effect.
In short, if I would go back in time; initially I wouldn't like to go trough this but since it happened I would go for an intervention since the side effects are more or less proceeds the same way.
@justwow Hello, if it will be a help let me pass you my experience; I had radiotherapy all the way and rejected any intervention but as a result after 3 years i have developed Radiation Induced Bracial Plexus in other words I have lost the ability to use my arms.
During and after radiotherapy for some time I couldn't swallow, taste etc. but within the following 6 months I was over 80% recovered from everything until one day(3 years later) I started feeling tingling on my neck and within next 18 months I have lost the ability to use my arms. So there is no guarantee also for Radiotherapy, nevertheless I have been told that a cut can heal but for a burnt nerve there is no coming back; I really want to verify this with the doctor that has given you the heads up on this matter, if you could pass me his/her details I would like to get in touch with him/her because whenever I talk to a doctor about RIBP they seem to be surprised, I have never met a doctor that is aware of this side effect.
In short, if I would go back in time; initially I wouldn't like to go trough this but since it happened I would go for an intervention since the side effects are more or less proceeds the same way.
@burakb @burakb
First, I am so, so sorry this has happened to you. Is there hope for regaining use of your arms? I pray there is!
Each time I think I’m brave enough to commit to the neck dissection, I end up greatly terrified. I read medical studies showing a very high percentage of people who undergone this surgery have shoulder pain, mobility issues, shoulder droop, winging, facial paralysis, lip droop… sure, *some of it gets better with time (12 to 18 months) but not all.
I thought about Proton therapy and its many side effects…. I’ll make it past the mouth sores. And losing my taste doesn’t bother me, it happened once before and lasted a year after taking medication for a fungal nail infection… the Dr said “don’t worry , it’s extremely rare for people to lose their taste”, and of course it happened to me 😮💨😂
And then I read your post and just cried - for you and for me…
My current doctor wants me to treat very very soon and not sit on this.
@justwow I am just over a month out from 5.5 weeks of proton and chemo for T2-N1-M0 HPV16+ SCC of the left tonsil.
Just getting my sense of taste back a bit now. That (and the throat pain) were the worst side effects. Eating was almost impossible. I narrowly dodged the PEG feeding tube after losing nearly 20 lbs.
As far as scarring goes, once radiation stopped I did develop a very painful radiation burn on my neck (expected). It was like a bad second degree sunburn (blistering from my jawline to my collar bone). That’s mosly healed now, but could leave some minor scarring. Too soon to tell.
All in all, it was a rough experience, but I have an exclamation prognosis (~90% cure rate). Very pleased I chose proton over photon and Mayo Rochester in particular.
First, thank you *all *in case I haven’t responded to any individual post yet. Everyone’s responses here are very valued. ❤️
@jfh1970
Thank you for sharing your journey so far-
How bad were your mouth sores? Was the pain from the sores and the burn bearable? Did you take/receive anything for the pain?
I’m thinking more and more of allowing myself to become a crispy tater, vs losing my ability to hold my grand babies, etc
@justwow I concur with @jonesja This is winnable. Welcome to the Head and Neck group. You can get a lot of help here from patients who have gone through what you are going through. Myself included.
MD Anderson or Johns Hopkins are both great treatment centers. You are blessed to have these options. Now you have to wrap your head around the fact that your life focus for the next few months is to rid yourself of this cancer.
You can always start your own discussion in this group at anytime you need specific attention / answers. Please don't hesitate to do so. It often leads to more and faster responses than being on another discussion.
In the meantime, as Winston Churchill often said, "Courage." You can do this. You will be stronger for it, I promise.
@hrhwilliam
My daughter works in oncology at Hopkins. Her doctor told her that if I really wanted a top notch surgeon for this type of cancer, Anderson wasn’t the place - MSK in NYC was…
I know there’s so many experiences, few options, and a boat load of rabbit holes to hop in - but I rather like to be armed with as much information about this new battle of mine, than stick my head in the sand, going with the first thing thrown my way…
I’m Happy to have found this group.
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@justwow I am 8.5 weeks out from both chemotherapy and 7 weeks/35 treatments of proton therapy for stage 2 tonsil cancer with one lymph node affected on each side of my neck. Surgery was not recommended. lost most all my taste by week 3. I am just now regaining some taste. I still do not have much of any saliva. I experienced mouth sores and some associated pain. The radiation did cause the skin on the outside of my neck to burn and scab around the 5th week of treatment. I followed my team's skin care directions and it healed by the end of treatment and has been and still is perfectly normal in appearance. I do not believe that you should experience any scarring from proton treatments.
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Hug
1 Reaction@metsgirl
Thank you for responding to my post - I just requested an MRI with contrast because the wording /descriptions in the findings of the CT and Pet scans differ. There may be more involvement - (though I pray to god not)
Anyway, I’m in process of switching insurance and will probably get whatever is recommended at my local center. I hope to find out more soon.
How did you handle everything emotionally? The first week I think I was just stunned. I took it off the chin… yesterday I had a meltdown with tears, and today I’ve withdrawn feeling depressed.
Que sera, sera.
@justwow I agree with Metsgirl comments. Very little adverse lasting effects. During treatment I lost all my taste, saliva production went down almost completely, Dry mouth, sores in throat, Very difficult to eat/swallow, Radiation burns to the neck. However, Two years out I am 95% back to normal. I have some slight scarring inside at my throat at base of tongue but It doesnt really effect me. No outside scars and My appearance hasn't changed other than I cannot grow bread where I was treated. You are going through a very scary time as you have alot of unknowns. Your outcome will be excellent but the 6 month journey will not be so pleasant. Hang in there as most everyone on here has been in your shoes and We are doing well! Good speed.
-
Like -
Helpful -
Hug
4 Reactions@justwow I was stunned when I was first diagnosed via CT scan and biopsy as I was asymptomatic. It took almost a month for me to see a local radiology oncologist. During that time my emotions were a roller coaster. The oncologist was very blunt about his treatment plan which included a prophylactic feeding tube. Something did not sit right with me after that. I shifted from being upset about my diagnosis and treatment to being proactive in doing research to choose the best treatment and care team for me. I switched insurance to a PPO that allowed me to be treated out of town. I set up consultations with 5 top cancer centers and found out about proton therapy. My focus became on how treatable and curable this cancer is. I know the side effects are pretty miserable, but there is a positive end to focus on. You get through treatment day by day. It will end and you will improve.
Many folks on here went through treatment before the advances we can now take advantage of.
If you are a person of faith lean into that. If not, take comfort in the science. Don't focus on the short term pain and discomfort. It is truly doable. I expected worse. My goals were to go to treatment, follow my care team's instructions and rest as much as possible. I ultimately went out of town for treatment and stayed in a hotel for 2 months.
Just get your final diagnosis and treatment plan settled to your satisfaction and move forward. We are all here to provide what support we can
God bless!
-
Like -
Helpful -
Hug
3 Reactions@justwow I concur with @jonesja This is winnable. Welcome to the Head and Neck group. You can get a lot of help here from patients who have gone through what you are going through. Myself included.
MD Anderson or Johns Hopkins are both great treatment centers. You are blessed to have these options. Now you have to wrap your head around the fact that your life focus for the next few months is to rid yourself of this cancer.
You can always start your own discussion in this group at anytime you need specific attention / answers. Please don't hesitate to do so. It often leads to more and faster responses than being on another discussion.
In the meantime, as Winston Churchill often said, "Courage." You can do this. You will be stronger for it, I promise.
-
Like -
Helpful -
Hug
2 Reactions@justwow I am just over a month out from 5.5 weeks of proton and chemo for T2-N1-M0 HPV16+ SCC of the left tonsil.
Just getting my sense of taste back a bit now. That (and the throat pain) were the worst side effects. Eating was almost impossible. I narrowly dodged the PEG feeding tube after losing nearly 20 lbs.
As far as scarring goes, once radiation stopped I did develop a very painful radiation burn on my neck (expected). It was like a bad second degree sunburn (blistering from my jawline to my collar bone). That’s mosly healed now, but could leave some minor scarring. Too soon to tell.
All in all, it was a rough experience, but I have an exclamation prognosis (~90% cure rate). Very pleased I chose proton over photon and Mayo Rochester in particular.
Good luck!
-
Like -
Helpful -
Hug
1 Reaction@justwow Hello, if it will be a help let me pass you my experience; I had radiotherapy all the way and rejected any intervention but as a result after 3 years i have developed Radiation Induced Bracial Plexus in other words I have lost the ability to use my arms.
During and after radiotherapy for some time I couldn't swallow, taste etc. but within the following 6 months I was over 80% recovered from everything until one day(3 years later) I started feeling tingling on my neck and within next 18 months I have lost the ability to use my arms. So there is no guarantee also for Radiotherapy, nevertheless I have been told that a cut can heal but for a burnt nerve there is no coming back; I really want to verify this with the doctor that has given you the heads up on this matter, if you could pass me his/her details I would like to get in touch with him/her because whenever I talk to a doctor about RIBP they seem to be surprised, I have never met a doctor that is aware of this side effect.
In short, if I would go back in time; initially I wouldn't like to go trough this but since it happened I would go for an intervention since the side effects are more or less proceeds the same way.
-
Like -
Helpful -
Hug
1 Reaction@burakb
@burakb
First, I am so, so sorry this has happened to you. Is there hope for regaining use of your arms? I pray there is!
Each time I think I’m brave enough to commit to the neck dissection, I end up greatly terrified. I read medical studies showing a very high percentage of people who undergone this surgery have shoulder pain, mobility issues, shoulder droop, winging, facial paralysis, lip droop… sure, *some of it gets better with time (12 to 18 months) but not all.
I thought about Proton therapy and its many side effects…. I’ll make it past the mouth sores. And losing my taste doesn’t bother me, it happened once before and lasted a year after taking medication for a fungal nail infection… the Dr said “don’t worry , it’s extremely rare for people to lose their taste”, and of course it happened to me 😮💨😂
And then I read your post and just cried - for you and for me…
My current doctor wants me to treat very very soon and not sit on this.
I know I have to do something
-
Like -
Helpful -
Hug
1 ReactionFirst, thank you *all *in case I haven’t responded to any individual post yet. Everyone’s responses here are very valued. ❤️
@jfh1970
Thank you for sharing your journey so far-
How bad were your mouth sores? Was the pain from the sores and the burn bearable? Did you take/receive anything for the pain?
I’m thinking more and more of allowing myself to become a crispy tater, vs losing my ability to hold my grand babies, etc
-
Like -
Helpful -
Hug
1 Reaction@hrhwilliam
My daughter works in oncology at Hopkins. Her doctor told her that if I really wanted a top notch surgeon for this type of cancer, Anderson wasn’t the place - MSK in NYC was…
I know there’s so many experiences, few options, and a boat load of rabbit holes to hop in - but I rather like to be armed with as much information about this new battle of mine, than stick my head in the sand, going with the first thing thrown my way…
I’m Happy to have found this group.
Thank you everyone for sharing with me.
-
Like -
Helpful -
Hug
1 Reaction