pathology report positive for HPV and cancer but NavDx negative for both
Hello, new to this board but have found it very helpful in trying to stay positive.
Long post--my apologies!
I was diagnosed in April of this year with HPV-16 stage 2 throat cancer -removed a mass during a tonsillectomy and pathology report came back as positive for HPV and stage 2 at 2.4 cm.
Throat radiation of 7 weeks is recommended with no chemo, I am supposed to start on Monday, June 26th but what has me rethinking it is the NavDx report I had done at Mayo a few weeks ago, shows as Negative .
Says TTMV-HPV-16,-18,-31,33 and 35 DNA is not detected.
less than 2 as my "score" and then says score is consistent with a low risk of the presence of an HPV -driven malignancy.
I am very confused as to why I have to do daily radiation for 7 weeks based on the negative result and HVP as "not detected."
I have calls into my radiologist here in my hometown and Mayo said they would be reaching out as well to discuss the results since i had the test done at Mayo and not here with my radiologist.
I was told that the radiation is preventative so the cancer doesn't come back but do I really need to go through radiation treatment if the NavDx score is lower than 2 and HPV came back as "not detected"
just frustrated at this point.
Comments
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Hello, rpclark, and welcome to the CSN H&N discussion board.
With few exceptions, individual cells are too small to be seen with the naked eye, so scientists use microscopes to study them. A microscope is an instrument that magnifies an object. Most images of cells are taken with a microscope and are called micrographs.
The reason they do radiation follow-ups after surgery is even the best surgeon cannot be sure they have removed all the cancer down to the cellular level. You know how small a cell is it takes a microscope to see it and stray cancer cells can be left post-surgery. So the surgery gets as much of the cancer as possible and the radiation is a mop-up procedure to eradicate any stray cancer cells that were missed thus leaving you cancer free.
I go back to before they had the NavDX test. And sometimes I think this test muddies the water a little. I can see where you could have a low NavDX test which is monitoring levels in your bloodstream but still have errant cells left in your body from the surgery which are too small to see. The errant leftover cancer cells will still be there no matter what your NavDX test says and the idea of the radiation is to eradicate any missed or remaining cancer cells to leave you cancer free.
This is my understanding of it and I would recommend getting the radiation if your doctor is prescribing it. Your care team and your radiologist treat cancer every day and know the correct procedure to use for each situation.
This is very common and standard procedure in dealing with cancer in general to do a follow-up or as some call it a mop-up of errant cancer cells after surgery with radiation. I believe sometimes they use chemo and radiation.
The thing is as my radiologist told me this is a one-shot deal, you want to do what is necessary to get it the first time around. Now that they identified cancer and surgically removed all they could you want to go by your doctor's recommendations and get this cancer done and gone. Believe me, you don't want this coming back if at all possible and these days surgery and radiation and chemo have advanced so much that there are a lot of cancer-free people walking around now that would otherwise not be here.
I hope this helps
Wishing You the Best
Take Care, God Bless-Russ
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Thank you for the explanation Russ! That makes sense and that is what Mayo explained to me yesterday. I was hoping I could just do the NavDx test every 3 months but i still have to do the radiation for the reason you explained.
Starting Monday daily through August 14th!
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Very good, rpclark, sorry you have to do the radiation but lots of people have gone before you and have proven it is doable and are walking around today cancer free. And you too will get through this. It is not easy but you have lots of information available telling you what to expect and how to be prepared for it. But I must say that all the preparation and my care team telling me it was going to be tough it was a bit more than I expected so prepare for the worst and it will probably seem less to you then. Also, prayer and trust in God strengthened me to get through difficult times, he is there for everyone. So forward you go.
Wishing You the Best
Take care, God Bless-Russ
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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.
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Thank you Steven!
Did it take a few weeks for side effects to kick in?
I meet with a nutritionist next week and also a person that goes over swallowing exercises with me. I had no issues being fitted for the mask and am not stressed about the actual treatment each day, but I have major anxiety about some of the possible side effects that I could go through and i do not want the feeding tube! My radiologist has stated he doesn't think it will get to that. I trust his experience but its still overwhelming. I am young, in good shape, dont smoke, rarely drink but i am hpv positive. The radiologist said that Is actually good I was positive in this situation.
I have a good treatment team and support system as well. I have prepared as much as I can in my opinion with protein shakes, carrot juice, yogurts, applesauce, fluoride trays for my teeth, dry mouth rinse and lozenges,, etc but I am happy to be meeting with the nutrionist and the swallowing exercises with the therapy lady! Sorry, I am bad with knowing actual medical names of what they do!
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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.
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I think the 3rd week was when I started feeling the effects of the radiation,25 photon treatments and 5 proton treatments for me. HPV is much easier to cure than non hpv so they say. The feeding tube is better than starving, but the exercises can keep us eating through the treatment so why not? I never had anxiety before, but did panic while being fitted for the mask and my dr scribed lorazepam. I got pretty uncomfortable the last 2.5 weeks of radiation and got myself edible thc to take the edge off. The Dr scribed oxy and they helped, but the edibles last longer and helped with the stress. Mango smoothies with a scoop of protien for lunch, oatmeal for breakfast and dinner was whatever I could get down, often soup, jello, eggs, etc. Our brain doesn't remember the pain so I don't have lasting trauma from the treatment tho' the last week or so may seem barbaric. Hang in there and we'll be here when you have questions or want to relate.
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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
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Thank you all for the info! I hope it goes well but I am also realist. I am prepared as best I can be and will definitely pay attention to the therapist and the swallowing exercises! I am going to try and work half days for the first few weeks but will see how it goes! My work has been fantastic and flexible with working half days or just taking the whole treatment time plus extra time after treatment is done in August.
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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
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My oh My that looks nasty, I bet that hurt.
I remember my neck got really red but I don't remember it peeling skin like that.
I was wondering about the white substance on your neck is it lotion you are using for comfort or is that your neck area oozing from the skin due to the radiation effects?
It's amazing what the human body can tolerate.
I pray you heal well.
Take Care, God Bless-Russ
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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
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The lotion was to try to keep the skin soft. I probably shouldn't have posted it here, but I wanted our new patient to see the extreme and know as bad as it got for me the exercises got me through without needing the feeding tube. I would never try to talk somebody out of a feeding tube if they needed one.
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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.
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Thank you for the positivity in your post! I am in week 5 of 7 and I am getting through it!
all my scans before treatment showed NO cancer left behind, nothing in lymphnodes, etc which Is why I was so frustrated about having to do radiation but you and others that have commented are correct--radiation will make sure it gets any specks or cells if any were left behind.
I am 53 years old with a long life ahead of me so I want to make sure they get it all!
-I will look into the Helios! I do have lidocaine as I have a small blister in the back of my throat-doesn't hurt, its just annoying.
-I don't think my treatment is proton therapy--I am on a tomo machine? I am on it for 9.5 minutes a day and so far no really serious side effects (knock on wood) with 12 days left.
so far I have done daily fractions to 4600cgy--a lot of the side effects I was expecting- I have dry mouth oral rinse and lozenges for severe dry mouth, I have fluoride trays as well but my radiologist wants me to use them after treatment is done not during treatment.
some jaw pain but not horrible.
my friends tell me my neck just looks like I have been out in the sun but I remind them its doing that on the inside of my throat as well!
I am still eating solids but I cut up some foods into really small pieces.
most foods have no taste but I still eat them for protein and carbs and my radiology team has been telling me to keep eating solids if I am able to.
I walk 30 to 35 minutes on my treadmill each day as I feel like exercise is good for me to stay positive.
I have a great support system of friends and family that check in with me and most have told me they couldn't do the mask!
for me, Wearing the mask every day is not an issue and treatments are not an issue--its the anxiety about side effects but so far they are saying everything looks great--they review my ct scans with me every week.
1 question is how will they know they got it all and can tests also be run that will show if the HPV is out of my system?
The NAVDX test seems to be saying the HPV is no longer in my system and my score was negative overall which is why I got so excited about that test but the problem was I didn't have that test done in the very beginning as a comparison to the test I had done after my surgery.
Roger
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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.
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I am in Iowa, where I get my treatment is 10 minutes from my house which is nice. I did go to mayo but decided to do the daily treatment here where I live.
Wondering if eating solids is what aggravates the sore in the back of my mouth but my radiation team says to keep eating if I can because it keeps me swallowing. I do what they tell me.
I had steak last night, barely any taste but I cut it into real tiny pieces to get protein in.
I have protein shakes as well but I haven't had to drink them a lot yet and my weight is around 171 to 175 most days, I started at 177 5 weeks ago.
How long were your treatments for each time you went?
Did you do chemo as well or just radiation?
Maybe I am being too positive and not being realistic enough for some people but I am through 5 weeks, so I am not changing now.
I have heard MD Anderson is great!
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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.
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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.
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