pathology report positive for HPV and cancer but NavDx negative for both

I did the surgery and follow up radiation. NWM was very good at preparing me for radiation with lots of exercises to do before and during rad. A friend didn't get the same level of care and didn't know how important those exercises are and he ended up with a feeding tube. I managed to eat (mostly smoothies) thru out treatment and avoided the tube. As with your case lab results showed surgery went deep enough that no cancer cells were detected post surgery and rad is standard for getting the micro.

rpclark it sounds like you are very well prepared mentally and physically, have your support system all lined up, and have nutrition planned out.

I would just like to weigh in on one thing-the feeding tube.

I know most people are set against getting one but I on the other hand am a big proponent of them. I always say if your team recommends one get it they know your case. You may well get through without one but there is no badge to go with it if you have real problems and lose weight and have a real struggle maintaining weight and getting meds in. If you get into treatment and your team decides it would be a good idea to get one to accept their recommendation. If needed you will find it makes treatment life and recovery a lot easier and realize a feeding tube can be your friend and life saver and when you don't need it anymore it is easily removed with a twist of the wrist and the opening closes by itself in several days.

Wishing You the Best

Take Care, God Bless-Russ

Speech therapist.

Longer video-more in depth-both are good informative material.

steven 59, I agree with you "The feeding tube is better than starving, but the exercises can keep us eating through the treatment so why not?

Well, why not, because there were cases like mine where my throat and the tissue surrounding it swelled from the radiation and closed my throat off and I could get no food or liquid through of any sort no matter how many exercises I did or how hard I tried to swallow. And I was working with an assigned speech therapist and she had given me exercises to do and I was doing them multiple times a day. She also informed me to do the exercises each day and if I was using the feeding tube, not to stop the swallowing exercises because we can forget how to swallow and need to relearn it. I did the exercises plenty each day because I didn't want to have to relearn how to swallow. Who woulda thought that that would happen I always thought swallowing was a natural reaction like breathing but apparently not. I probably couldn't get anything through for several months and would have died without it. Also while I could still swallow food it got to be a tortuous painful ordeal and suffering trying to get these calories through sometimes like the proverbial swallowing razor blades as some have described it on here and you start to look at eating as torture. I was glad I had the tube ahead of time because, by the time I needed it, I was not feeling like going in for a procedure I had enough to do with the treatment. And when I could finally start getting some food and liquid through again, just like she said, I could still swallow because of my diligence in doing the exercises she assigned me. And when I could maintain my weight for 2 weeks the feeding tube is easily removed, just pulled out with a minimum of pain and the hole in your stomach closes up by itself in 2 or 3 days.

And there are some folks on here that started out with all good intentions that no matter what happened with their throat or how sore it got they had in their mind that they would by their own strong will be able to push on through and get the calories in no matter what. Well, you can't push calories through a restricted closed esophagus no matter how hard you swallow. It's physically impossible.

Some succeded without much trouble. Some succeded but suffered greatly but they still avoided the tube. And there were some that lost weight, got dehydrated, and were admitted for an emergency hospital stay and a feeding tube insertion to save their life.

I am so glad you made it through without a feeding tube I wish we all could. I am hoping it works out for rpclark also.

I just wanted to point out to anyone reading this that feeding tube consideration during this brutal treatment is a matter that should not be taken lightly and should be given serious consideration.

Wishing You the Best

Take care, God Bless-Russ

We do all react different to treatment and I thought the exercises were to prevent or at least minimise swelling, either way RPCclark DR's have gotten much more precise in their treatments with photon and even more so with proton radiation so I'm confident for you. The first 2 weeks are completely pain free with effects kicking in by the end of the 3rd. My Dr scribed oxy and by the end of week 4 I was taking thc edibles because the ozy just doesn't last that long. I did a lot of smoothies and soup and eggs at the end of treatment. I*'m older than you, but fit and lost 30 lbs by the end of week 5 from 170 to 140. I'm still around 140 without an ounce of fat on my body. Now 6 months post treatment I'm getting some taste and even a little saliva back so eating is less tedious and hopefully I can get to 155-160 when I get back to the gym.

The tech's talk to you every day and a Dr or nurse will spend time with you once a week during treatment to ask and answer questions. they're there to help and they do. From other pics I've seen my skin reacted poorly to treatment

As bad as it looks I was able to eat the whole time

Hello rpclark

I had a full neck disection back in December of 2009 and I completely trusted my surgeon Dr. Weinstein at the Hospital at The University of Pennsylvania in Philadelphia, PA. He told me at a folow up he was pretty sure he removed all the cancer but recomended I do 30 radiation treatments because if there was any cancer still present there is a 98% chance the radiation would take care of it. Completely trusting his judgement I did the 30 treatments because being a dumb truck driver I didn't have the qualifications to dispute his opinion nor the desire to get a second opinion. I think you are doing the right thing waiting to hear your home town doctors opinion and moveing on from there. Just my $.03 (inflation)

StayPositiveStayStrong

Jeff

RP Clark, January 2023, I was diagnosed with HPV 16 positive throat cancer. It started in my right tonsil and went to one lymph node right side of neck. I underwent surgery March 20, 2023. The surgeon found the lymph node branching out so I needed radiation therapy. I had a great surgeon, he believed that he got all of the e cancer, but may have missed some cells, so radiation was needed to prevent it from coming back. I conducted research on my own and discovered Proton Therapy. I asked my Radiation Oncologist about this treatment and confirmed that it was an option. Luckily my insurance company approved Proton Therapy. I finished 6 weeks on July 3, 2023, rang the bell, was glad to be done. I had very minimal side effects, ate regular food through all but week 4 and 6, this was due to a sore on the side of my tongue from the stint. My Doctor had me use this product called Helios, it’s a swish and swallow liquid that repairs the lining of your mouth. Great stuff, a little expensive, but the companies proceeds are donated to the children’s cancer fund. I prepared for all of the bad side effects, but they just never came. My Doctor was really pleased, said I was an A+ patient. Of course radiation effects everyone differently, I guess I was lucky. I did see another man with throat cancer, he was on treatment 7 and was having many problems. I can’t say enough about using Proton Therapy, it was scary and the skin issues are bad, but I looked at the alternative, I do t want this coming back. Still doing PT do to my right shoulder from surgery, but trying to get back to a normal state. Prior to this I was a very healthy 63 year old man, very active, retired federal law enforcement, 3rd degree black belt in Aiki jujutsu, felt like I was in my 30’s. We’ll see, hang in there and keep following the Doctor’s instructions. Take care.

Sounds like you’re doing very good. I had the red sunburnt skin also and the swelling inside the throat. It’s good that you are walking, I did to, love the ocean, so we took several trips to the beach. I had to use a hat with a neck guard to protect my affected areas. I too have no taste, but it’s getting better slowly. My treatments were three locations, two were at a 54 gy and the third was at a 60 gy. They had me use my fluoride treatments all the way through and am continuing to use them. I made co tact with another cancer survivor on here and he helped me get through everything. Some really good people on here. I didn’t have too much trouble with the mask, I just closed my eyes and tried to remain calm. I had kore trouble with the stint, couldn’t swallow and felt like I was choking. They told me that everything would get worse after treatment, but mine didn’t, guess I was fortunate. My skin is still sore and burnt, some areas peeled, they told me to watch out for any signs of infection. So far so good. Hope you continue to do well. What Cancer Center are you being treated at? My wife convinced me to go to MD Anderson Houston, about 10 hours away from home, but I’m glad I listened as they were very good. I’m sure your Doctors are taking good care of you.

No don’t change, keep focused on the end results and try not to worry. All through my treatments I thought I was getting a 50 gy level, found out that I was getting higher doses the last two weeks. I’m kind of glad I did t know, ignorance is bliss I guess. That would be nice having the treatment only 10 minutes away. I live in a small West Texas town, if I had gotten the treatments local I still was 30-35 minutes away. I only had to have the radiation treatments no chemo. I found my cancer early, they said a stage 1, the lymph node was about 2.3 cm, but it was branching out so I was lucky. My Proton Treatments lasted anywhere from 31 to 45 minutes. Most of that time was spent positioning me and taking x-rays to make sure they targeted the exact locations. I wish I could have hooked you up with the Helios at the beginning of your treatments, might have prevented the sore in the back of your mouth. My wife listened to other people and fattened me up, I usually weigh 157, she got me up to 165, I did t loose any weight, I actually gained a pound during g treatment. I started loosing weight after the treatments as I have little desire to eat, no taste. I’m at 160 right now, but am not hurting. The one thing I hate is I can’t enjoy the warm weather, I like to swim and I’m afraid that I will aggravate my skin more. Hang in there and put all of this behind you. You have a long life ahead of you and think about your family, my wife, family and friends helped me get through this. Take care and after this is over remember to pay it forward for others who have to go through this.

I would highly recommend going the Proton Therapy Radiation route versus regular radiation therapy. There were very few side effects and less damage to surrounding tissue. Your husband also needs to use Helios product, it repairs and prevents mouth sores. My Radiation Oncologist had me use it and I was able to eat regular food throughout most of the treatments.