Newly diagnosed. What to do??

dgas · July 19

I’m a 65 yr old active male in reasonably good shape who has just been diagnosed with HPV related cancer. Long story short, I was sent to an ENT due to a right side tonsillar mass which was surgically removed. Biopsy result was a bit vague regarding whether or not the removed tissue had clear margins, only stating HPV+ and that it abutted the incision. PET and CT scans show no further evidence of cancer. Have seen Radiation and Medical Oncologists so far who have indicated the cancer was discovered in early stage. No chemo is recommended, but they have recommended 6 1/2 weeks of radiation to only the right side of my neck. I have asked to see a surgeon to discuss whether or not additional minor surgery could be an option. I’m very hesitant about the radiation side affects after watching what my father went through in his H&N cancer journey, the scans being negative, and given the fact I am feeling so well (essentially normal) since the tonsil has been removed.
Interested in experiences of others with similar situations.

Vagabond37 · July 19

Very similar diagnosis (left side) just under a year ago. I was told radiation + chemo. It’s seems to be the standard course. They wouldn’t do surgery because of the risks and damage it could do in a sensitive area. As things progressed the picture continued to change and although my cancer responded to rad/chemo still had a residual mass that they were concerned with. Ended up getting surgery - after rad/ chemo. Even that was changeable - I had a single lymph that the cancer invaded. Surgeon was confident in a simple lymph node removal. Day surgery. Woke up in the recovery room to news that once inside he discovered the cancer had been pretty aggressive and involved deeper tissue that wasn’t detected in scans. Radical neck dissection with 13 lymph’s getting removed. Moral of the story is - the whole thing in fluid and changeable. I’m 68 and active and radiation has set me back some compounded by loss of tissue, nerves, and muscle. 6 months out from radiation/chemo 3 months out from surgery. Adjusting to side effects of radiation- easing slowly although some may be permanent. Back to work for 5 months with a short break for surgery healing. Back in the gym and cycling - neither at the level I was, but improving. Lost 65 lbs (refused the feeding tube) but apparently I could afford it because I feel good at my new weight & I’m not making any effort to gain. Appetite remains low and taste is dramatically changed. Just my experience. The chemo was rough (x5)but the radiation is the ****-kicker. If you’re in good shape & keep a good attitude bounce back is quick. Hope all turns out well. Be flexible, the scans don’t always tell the whole story.

dgas · July 19

https://csn.cancer.org/discussion/comment/1723688#Comment_1723688

Thank you for sharing this. Pray that you continue to improve.

Vagabond37 · July 19

https://csn.cancer.org/discussion/comment/1723689#Comment_1723689

Thanks - better everyday! My long winded point was that the diagnosis can change. In my case it went from simple radiation or immunotherapy to the whole 9 yards PLUS the kitchen sink. The docs do the best they can with scans but sometimes the scans don’t tell the whole story PLUS as we wait for appts and treatments to be arranged the malignancy isn’t waiting and it can be weeks or months deciding and arranging. I was initially scanned in August which showed a small malignancy. My treatment didn’t start until late November & things changed between scans. Just something to think about. Not avoidable and not the end of the world. We certainly want them to get it right! Anyway - we boomers are pretty tough and hard to knock down 🤣. I got stories and advice from 80 something’s in the chemo lounge. Some were on their NTH diagnosis & treatment and were still head’s up! All about attitude. Hope your journey is smooth.

wbcgaruss · July 19

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

I'm glad to hear that your treatment has gone well so far.

I am so happy your scans are clear also.

As far as radiation, I would say since your Radiation and Medical Oncologists have recommended radiation, I would side with them and say get it done.

This is known as a mop-up operation, clearing out cancer cells at the cellular level, which no surgeon can physically see, and they won't show up on a scan of any kind. The only way to get all the cancer cells, and these are the ones at the microscope level, you would need to see them, and mostly guarantee as much as possible you are clear of cancer, is radiation follow-up, and the ones radiation is going after can't be seen or shown on a scan..

Your scans may be clear, and your surgeon did his best to have clear margins, but there could be cancer cells left in there, yet at the microscopic level, which don't show on a scan and aren't visible to the naked eye..

The main thing here to remember is that this is a one-shot deal.

You want to get this cancer out of there with the treatment period you are in now.

Trust me, you don't want to risk dealing with cancer again in the head and neck area again if at all possible.

There is too much going on in this area to keep revisiting it over and over and each time the risk of affecting some function is real, such as swallowing, talking, breathing, taste, saliva, etc.

You say you are a little edgy about the radiation in the head and neck after seeing your father deal with it.

Well, his case and what he went through really have no bearing on your case; they are all a little different, such as how large the cancer was, the type, the exact area, and what it encompassed.

You need to consider your case alone.

You could get a second opinion if that would help.

They make a specific radiation plan for each person, and it is done very carefully to minimize radiation effects, but be sure to get rid of the cancer.

Since you have already had surgery, I would hazard a guess that your radiation may be a lighter dose and not so hard on you.

But no matter what, you want to get this done in a one-shot deal.

You can choose not to get radiation and be OK, but then again, in a year and a half, if it comes back, then again that's a big whoops, but you can't do anything about it then except treat the new cancer.

No radiation =Risk and taking a chance.

Radiation = As close to a sure thing as you can get.

Cancer centers can't guarantee 100% but they can give you their best plan and guidance based on their education and the fact that they do this for a living every day and care deeply about their patients' outcomes..

Finally, in the end, though the decision is yours, and yours alone. Whatever you decide, be comfortable and satisfied with it.

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

Wishing You The Best

Take Care, God Bless

Russ

Our motto on here is NEGU (Never Ever Give Up)