HPV Related Tonsil Cancer - Surgery Only

amandasalazar29

Hi All,

I am a 37 year old female that was recently diagnosed with HPV related tonsil cancer. I had a radical tonsillectomy and neck dissection on the right side of my neck where they removed 40 lymph nodes.

My primary tumor in my tonsil measured 1.5mm and cancer was detected in 1 lymph node measuring at 3mm. The cancer removed from my tonsil had a good margin and the cancer in my lymph node was also encapsulated.

My care team has recommended no additional treatment beyond the surgery for me. They have spoken to me about how the treatment for HPV related cancer like this is changing quite a bit and that deescalation and reduction of treatment is becoming more of the status quo.

While I am overjoyed to be able to avoid radiation and chemo, I also can’t help but feel I am sort of a guinea pig for the new mode of treatment reduction as I haven’t been able to find many people with experiences with surgery only as a treatment.

I’d love to hear from others that have gone this route and learn more about your experiences if you’re out there.

Thanks,

Amanda

Kazsmiles74

Hi Amanda,

In June 2017 my husband was also diagnosed with HPV SSC of the right tonsil. His diagnosis was almost identical to what you have stated. His treatment recommendation was TORS surgery only with a neck dissection. We were told that this was the “new” guidelines for HPV SSC non smoker/drinkers.
The next almost 5 years he went to his ENT for follow up appointments, scopes, and scans. We were so excited he was just about to the 5 years of being all clear. Then, about 6 months shy of that 5 year mark he discovered a lump on the side of his neck. It was exactly the same thing that happened in 2017. Except this time he had it on both sides, the back of his tongue, and down some in his esophagus. This time there was no getting out of chemo and radiation. This time the treatment and recovery would take almost a year.
He and I have discussed the thought of more treatment the first time. And the only conclusion we came up with is that we believe he made the best decision at the time with the data they gave him. Five years later his team had more data to go with including the “new” NavDX” blood test. Yes, treatment was brutal and recovery is no walk in the park. He is almost 1 year out from his last treatment day. He has thyroid issues related to radiation and his neck is tight a lot of the time(exercises help some). This recurrence brought us a new kind of worry that we did not have the first time. However, we are getting through it. The only thing we can do.
Our suggestion is that if your gut is telling you this is not the right course of treatment for you then get a second opinion. Unfortunately, there is no way to know if your cancer will come back or not. There is no way to say if you do this or that then you will be cancer free forever. From what I understand though not one person that goes through chemotherapy and radiotherapy for head and neck cancer has not had some sort of other side effect that they have to manage for the rest of their lives. It could be minor to major side effects, but nonetheless it is just a constant reminder of the brutal treatment they went through to get to NED.
We wish you the best and hope you find peace with your treatment plan. Stay on top of your follow up appointments, be aware of changes to your body, and live your life to its full potential.
-Sandra

amandasalazar29

Hi Sandra,

Thank you so much for your detailed and thoughtful response. I was unaware of the NavDX test, but have researched it a bit more on this forum since you mentioned. I’m going to bring up the possibility of having this testing be incorporated into my follow-up monitoring. I’m due for my first check-in in a couple of weeks. It sounds like NavDX is a way to help me more proactively know whether the treatment path I’m on is the right choice.

I had also considered a second opinion until the tumor board reviewed my pathology and I was told my case was fairly definitive that surgery only was the appropriate recommendation based on current guidelines for treatment. I may try to dig into this more as well.

Thanks again and I’ll be sending positive energy to you and your husband in the hopes that you’ll be able to finally put HPV SCC in the past.

-Amanda

wbcgaruss

Hello, amandasalazar29, and welcome to the CSN H&N discussion forum.

I agree and understand you would like to avoid radiation and chemo.

In your case, the lymph node was encapsulated so you are good there.

The other part in your tonsil was said to have good margins.

That’s good also.

Except that radiation and chemo are meant to be the mop-up operation for errant cancer cells

meaning cancer cells at the cellular level, not being able to be seen with the human eye.

I imagine when they operate they somehow know where the edge of good tissue starts and where the bad starts and if it is not right they go back and cut some more.

If you are trusting that your doctor is proficient enough that he would not miss an errant cell or two and absolutely got every cell of cancer out then you are good to go.

If not, maybe not.

I had throat cancer of at least stage 3 or 4 and had radiation and chemo only. 35 rads and a lot of chemo.

That seemed to cure it.

But.

About 5 years later I got a spot on my tongue.

We think a new cancer not throat-related to my throat cancer, I just got cancer again.

My ENT operated on it and also I had clear margins.

He felt confident that he had gotten it all and tried his best because he was reluctant to have me get radiation again in the same general area I had it before with the throat cancer.

They try to avoid radiating twice if at all possible.

So we went with that.

About a year later I have a sore neck.

Cat scan and PET show lymph node has cancer and it is not encapsulated.

ENT now feels with my overall situation I am better off going to a teaching hospital this time where they can handle this better. (Hershey Hospital, PA)

In the end, doctors at the teaching hospital feel that this cancer came from the tongue area and I would guess missed cells.

I won’t fault my ENT he was just trying to spare me radiation again in the same area.

They don’t like to radiate the same area twice if it can be avoided, I believe especially in the H&N area.

So I had a major operation and when it was all said and done they wanted me to do follow-up radiation by going to Philadelphia for Proton Therapy.

I didn’t feel up to the travel for 30 days.

So I was set up with our local cancer center (Ann Barshinger Lancaster, PA) to receive radiation of 30 treatments via the Cyberknife which I found out later is pretty close to simulating Proton Therapy.

Ann Barshinger now has Proton Therapy which is wonderful but it is a major outlay for hospitals, those things are like 40-50 million dollars.

So now I was radiated twice after all.

I am probably at my limit.

So there you have it.

My radiation oncologist said (This is a one-shot deal) meaning you don’t want to revisit this you want to get it the first time and that's it, you don’t want to come back and do this again.

Whatever you decide that I feel should be your mindset, no matter what it takes, surgery, radiation, chemo, part or all three you want this done in one instance.

Also keep in mind there is a lot going on in the H&N area, eating, swallowing, breathing, speech, taste, etc., it is an area you don’t want to take lightly and think, well if I get cancer again it can just be treated again or treated in another way because every time you treat in the H&N area it can affect many functions that are vital to survival and enjoyment of life.

So I won’t tell you what to do I just tried to give you all the examples and reasoning I can plus you now are aware of my scenario.

If you decide to get a second opinion that would be a good idea to pursue.

And if you decide to get follow-up radiation and chemo, you may not need the chemo, just the radiation because that is what I had the second time around just radiation.

I had surgery and radiation the second time versus the first time when they were doing no surgery and using radiation and chemo only to kill a big tumor.

Also since you have already been operated on and they have for all intents and purposes have removed all your cancer I would think you would get a much lighter treatment for mop-up follow-up if you choose to go that route because that's what it is a mop-up operation of radiation not trying to kill a large tumor with no surgery just rads and chemo.

Like Sandra says use your gut feeling but above all, I think a second opinion is mandatory in your case if for no other reason than to give you peace of mind.

If you have any more questions feel free to ask, on the forum or you can private message people also.

Our motto here is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.

One of our Beloved members (Crystal "LitlCJdoll") who has passed always said…

Take Care, God Bless

scoleh

Hello Amanda. Your case sounds very much like mine, nearly identical in fact. I had the same successful surgeries and my surgeon said he would be comfortable if I made the decision to watch and wait for six months before deciding on adjuvant oncology treatments. I elected to go forward with a somewhat reduced radiation protocol. Chemo was not done.

In retrospect I sometimes think I would have taken the watch and wait approach. That is due to the long term side effects of radiation including loss of taste and dry mouth. On the other hand, I’m supremely confident that the radiation knocked out and cancer remnants that might have remained and there is a ton to be said for that.

For me, now, it is important to only look forward. The past is the past so there will be no second guessing. I wish you the best in your decision making process.

Chillg8r

https://csn.cancer.org/discussion/comment/1716398#Comment_1716398

fwiw I think you’re logic is spot on. If NavDx is a test that works for you, as it is for me, I believe if there are stray cancer cells that was missed by the surgeries they will show up on the NavDx test. Perhaps as a low score. And if they do then you’ll know what to plan for when they can see the bad boys on a scan. If you’re fortunate enough to get a score of zero then short of something showing up on scans I’d see no reason to pursue radiation. I’ve been getting NavDX tests every 3 months since my initial diagnosis in 2020 and the results have matched what we’ve seen on scans and what my treatment would predict perfectly so I’m a strong believer in it’s value. I believe if there are any bad cells the NavDx will alert you to their presence. Good luck!!!