HPV16+ SCC diagnosis - is chemo really necessary?

caregiver407

My husband was diagnosed with HPV16+SCC in Nov. 2021 and had surgery Dec. 2021. Tissue (and tumor) removed from the base of his tongue, plus neck dissection and 6 nodes removed (w/extensions). He will soon begin radiation treatments on both sides of his neck, but the rad doctor told him chemo may not be effective on his type of cancer. The clinical trial (PATHOS) he signed up for has randomly assigned patients with and without chemo, I believe. If the rad doctor doesn't think chemo works for this HPV16+ SCC and half the patients in the clinical trial will go without chemo, then why choose to include the chemo and endure even more horrible side effects? Has anyone with HPV16+ SCC had the surgery and radiation, but not the chemo? What were your 'long-term' results? Thanks for your insights.

Chillg8r

If it were me I’d probably see about getting a 2nd opinion wrt Chemo.

I had HPV 16 SCC that started in my tonsil and spread to my lymph nodes. I had 35 radiation sessions and 7 chemo sessions. I was told that the chemo supported the radiation. While it’s hard to tell I don’t feel like the chemo was a source of horrible side effects. It may have been but I think the horrible side effects were more from the tonsillectomy and the radiation. I usually felt good the day or two after chemo and then felts a bit tired on the 3rd day….but losing my taste could’ve been a result of the chemo I suppose and I lost a little hair on the back by my neck, though it wasn’t noticeable.

just my .02……

wbcgaruss

I agree with chill maybe a second opinion would be in order. I do note that your husband had surgery whereas a lot of the H&N cancers are treated with no surgery but with a combination of radiation and chemotherapy. So maybe this doctor is correct in his case. As far as the chemo drugs I was under the impression there were chemo drugs tailored to fight almost any cancer. The radiation would get rid of any errant missed cancer cells in the area of his cancer but chemotherapy travels throughout the body affecting errant cells elsewhere. No matter what you decide you want effective treatment and be as sure as possible to get this cancer the first time, a one-shot deal if you will because you don't want to go through this again. I found some info on the net also.

Why would you have chemotherapy and radiotherapy together?

Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Radiotherapy uses high-energy rays to destroy cancer cells. The chemotherapy drugs can make cancer cells more sensitive to radiotherapy. Combining both treatments is often more effective than having either treatment on its own.

Please note last cancer I had was lymph node cancer and was operated on and the recommendation was radiation follow-up only, no chemotherapy. So I had 30 treatments with the Cyberknife.

So I think it is done both ways with or without depending on your case.

Each case is different and there are times when just surgery is used and if they are confident they got clear margins when they operated or say taking out a lymph node or thyroid gland where it is all retained in the gland and they are confident they have all cancer removed. Or two methods may be used as in my case and your husbands and I getting surgery and radiation and I believe there are times when all 3 are used.

The reason many H&N cancers are treated with chemo and rads is because it is successful usually and avoids disfigurement and other problems from surgery. When I had my first throat cancer my ENT told me if I would have had it ten years earlier rads, and I think mostly the chemo wasn't as developed, and the only way they could treat it was a major operation and probably in my case a pretty big operation.

Mainly you and your husband have to be comfortable and confident in whatever treatment he is getting to get rid of this the first time. Are you confident in your doctor? Talk frankly with your doctor and ask him the chemo question and any other questions you have before you move forward and if you are uncomfortable maybe a second opinion is best. Don't worry these days doctors don't mind. Here is a link with info to read in the meantime maybe it will help.

https://www.radiologyinfo.org/en/info/hdneck

Another link-

https://www.cancer.net/cancer-types/head-and-neck-cancer/types-treatment

And here is one more link about treatment from Johns Hopkins-

https://www.hopkinsmedicine.org/kimmel_cancer_center/cancers_we_treat/head_neck/cancers/treatment.html

I hope it is not too much info but you can just read what you are comfortable with.

Wishing You The Best-=Take Care-God Bless-Russ

caregiver407

Dear Chillg8tr and Russ, thank you for your thoughtful responses! I appreciate the fact that you are willing to help inform others along their journey. A second opinion makes sense and we will do that. Russ, thanks for the links to more info. Very much appreciated! Take care and God bless both of you! Lori

johnsonbl

I had HPV+ cancer of the tonsil (well technically the arch between the tonsil and base of tongue...but who is counting). I had a neck dissection and they removed 3 lymph nodes, 2 of which had disease. The stars lined up for me and I was deemed low risk so had only TORS surgery to remove the tumor followed by a slightly lower than normal radiation dose (60gy vs. 70gy). I just passed my 5 year diagnosis anniversary in January and in April I'll be 5 years out from end of treatment. :-)

Typically if you have any high risk features you end up getting the standard of care which is radiation+chemo (and optionally surgery if they think its worth while). High risk features would be extranodal extension (which you maybe mention in your original post?), history of smoking, a tumor that is near the midline of your body, etc...

Similar to my treatment regimine, the Pathos trial is looking to study whether reduced treatment is as effective as the current standard of care. They are hoping that for certain patients with a certain risk profile, less chemo or less radiation will be as effective as the standard chemo+radiation combo...and if so, will translate into equal outcomes but with fewer long term side effects.

Long story short...chemo+radiation does ABSOLUTELY work for HPV+ cancer...it's the standard of care. The trial you are participating in is studying whether reduced treatment is as effective for different populations based on risk profiles with a better or reduced rate of long term side effects.

Brandon

johnsonbl

And also, I wouldn't recommend a 2nd opinion at this point...but would absolutely recommend you sit down with your current MDs to discuss further and get your questions answered. It's clear to me that there is some confusion as to what your options are and what the trial you are in is supposed to do.

It's all very confusing so don't be discouraged and you are asking all the right questions.

Remington25

I was part of a trial called EVOLVE through Sanford Health. I received 2 smaller doses of chemo during my radiation treatment and was told it was just to enhance the effectiveness of the radiation. I had neck dissection, tonsil removed along with a sliver of my tongue and a portion of my soft palate removed during the surgery. I was very happy with my results but I am literally 12 months out of treatment so hopefully it worked!

wbcgaruss

My goodness Rem you certainly had a major surgery. And you went through the mill with chemo and rads like the rest of us and it sure sounds like you are very happy with the results a year out. And any follow-up scans must read NED so congrats and I am praying that you continue to be clear of this evil disease.

Wishing You The Best-Take Care-God Bless-Russ

Remington25

I was 44 at the time of diagnosis, surgery and chemo/radiation. I was in pretty good shape so I think my age/health was a positive in me recovering. Oh, and my docs said I was a stubburn pain in the a$$ becasue they gave me a goal of walking the halls each day I was in the hospital and I doubled their goal 3x each day because I wanted my lymph system to work and heard that could help.

Surgery recovery was difficult. I spent 5 nights in the hospital and couldn't sleep at all as I felt like I was choking. I was on a feeding tube the entire time but was able to swallow hot chocolate after the 3rd day (painful) and after 8 days I could eat mashed potatoes and gravy and different soups. On Thanksgiving, I was able to eat some of the stuffing/dressing with gravy and it tasted wonderful.

They warned me it could be like that and my surgeon wanted to make sure he got all spots. I feel very fortunate that I have been NED for the year and am at my "new normal" which is pretty darn good. Some foods still aren't exactly right but really, really close. My saliva has recovered to about 50% (my guess, not medical) but I still notice dry mouth pretty often which makes exercising and eating some foods more difficult.

wbcgaruss

I wasn't going to comment anymore but you gave a great description of your surgery and recovery and what stood out to me is your positive attitude and the fact that you were proactive in any way you could be in treatment preparation and recovery. I get the feeling you knew this was a very serious situation for you but you trusted in your care team and went ahead with a "this Ain't Gettin Me Down" attitude and did all you could to ensure success and victory. People reading your story surely will get a positive attitude out of it and it gives the inspiration to master their cancer situation.

Congrats and wishing you many NED'S Ahead

Take care-God Bless-Russ

big G

I went through something similar. I had Tors surgery and neck dissection both sides with several positive nodes on the right side none on the left. I had a medical team on the tumor board. The decision in my case was Tors, and 33 radiation treatments to the right side. The decision for no chemo was made because of no extension of the nodes and lower level was clear. This was made after the path report. I opted for a 2nd and 3rd opinion before I chose Tors, rads knowing full well there would be chemo if I had extension. I was also P16. A second opinion wouldn't hurt if you feel you have the time. Good luck and God Bless.

Remington25

Mine was also a TORS surgery. My surgeon was nerdy and cocky and I knew I wanted him operating on me after meeting with him. I called around and found out he was very highly regarded in this technique and would fly around teaching others his technique.

skidog

I had Proton rads only for right side tonsil cancer with one lymph node. I am 4 years out since diagnosis and doing great. my last CT scan was NED. Only lasting side effect is dryness on right side of throat at night when i sleep and occasionally a slight cramp pops up in my neck on right side. Other than that life is back to normal. My rads Dr. at Mayo clinic said chemo wouldn't be needed and that he could "kill" the cancer with just rads. I was early stage N1T2. treatment was very "bearable" and the pain/discomfort only hit about a 5 out of 10. The most difficult part for me was my neck got really burned and sensitive towards the end of treatment and a week or so beyond. I did lose 42 pounds but I needed to lose some weight. Taste came back to 100% about 4 weeks after treatment. I would highly recommend proton therapy if available. Good luck. You can do this!

Stephie75

Hey there,

I would just like to add that I am going through treatment for Stage 2 Larynx cancer and I have only had Radiation. Cancer had not spread to my nodes when I was diagnosed. If it had spread to at least one node my entire treatment plan would have changed. It seems to me about everyone I have seen where cancer has affected at least one node they want to do chemo. Many times, they will do surgery as well. (from what I have read on here)

Stephie75

I tried to get a laser, but only had time to get one other opinion. I know the University of Chicago offers it, but I was VERY short on time.

caregiver407

Hello everyone, I did the original post at the top of this page. Just wanted to give an update. Today, my husband had the 28th of his 30 radiation treatments and the past 6 weeks went much better than I thought it would. He's experiencing swelling, redness and pain in his neck and also when he swallows, the horrible thick saliva, and complete loss of taste. What seemed to help the most was maintaining a positive attitude that he will survive this. He only lost 10 pounds during the entire time because he forced himself to eat scrambled eggs most mornings, protein smoothies and snacks like applesauce, jello or pudding. Sometimes soup would go down, but not that often. He is looking forward to his taste returning so he can eat all the foods he's been daydreaming about for the last 6 weeks. Thank you for your helpful comments. This discussion board has been very helpful for me, as his caregiver. I pray that his cancer is gone and will never return! And I pray that someday this awful disease is irradicated from the face of the earth. God bless all of you!

Stephie75

Thank you so much for updating us! I tried to keep moving as much as possible, and a positive attitude as well.

I had more side effects after treatment. So, make sure he still has everything on hand. I forced myself to keep eating as well, and that makes a big difference in getting through it easier.

The later side effects have not been debilitating or really painful. Just strange.

-Steph

CivilMatt

caregiver407,

I wonder if the chemo oncologist will say the same thing about the radiation oncologist. Oh well, as Sir Russ says “you want to get this right”. If you survive, then I guess it will be known as the correct path.

I had stage IVa, SCC, BOT, 1 lymph node, HPV+ (surgery, radiation and Erbitux). To some, Erbitux is not a true chemo type of drug and some simply call it chemo-light. If you are from this camp then technically I did not have any chemo.

I will be celebrating 10 years since my last rad treatment in less than one week. Time does fly.

CivilMatt

Stephie75

https://csn.cancer.org/discussion/comment/1694987#Comment_1694987

Matt,

I have heard it more than once on here. It's "Go for the Kill" the first time. I asked Russ exactly what that entailed? Do I ask them for the whole kitchen sink? I literally don't think you can request chemo if your care team does not think it's necessary. But they went for the kill with my radiation. My CT/PET showed no node involvement, yet they radiated my entire neck. They didn't go "Full Power" on my entire neck around the tumor, I think about 50%. But they hit that turbo button on my vocal cord area.

So, I still really know what "going for the kill" means to this day. I guess it would be different for each person's circumstances. For instance, at first, it was mentioned I only receive maybe 6 weeks of radiation. Then it was maxed. They may have changed the amount to the whole neck. A lot they didn't tell me. I was left in the dark. They never told me they would fry my thyroid, etc.

So what is your definition of it?

..and congrats on a decade! Before you know it you'll be handling the 2023 roll call!

-Steph

Stephie75

I also wanted to add to this that I was reading a post by someone on this forum that received a diagnosis and they wanted to throw the kitchen sink at him, it scared him. So, he got a 2nd opinion. Many people on here get 2nd and 3rd opinions. I am amazed at how many people on this forum have also gone to top tier cancer hospitals.

I just stayed local for mine. While I did get a second opinion, I didn't feel comfortable with my Oncologist. I felt I couldn't truly trust my care team. It was an odd feeling. I kept it as positive as I could though. My PCP got me through it, I owe him a lot. He's been my doctor for over 20 years.

I hope to God I do not have a recurrence, but if I were to? I would not stay here for treatment. Not again.

So a lot of people I think decide on the chemo regarding treatment options given by other opinions. You may be able to locate the OP by searching for "Kitchen sink". haha