Newly diagnosed and scared: How did you cope?

I too have had HPV tonsil cancer and just wanted to say all of the comments here are spot-on. Don’t be afraid of the unknown! Fight like you’re in a boxing match and you MUST be victorious! It’s a tough road, but it’s doable if you don’t give up. I was 62 when I went through this process. It’s gets better just give yourself some time. I thought I would be better in a month and pushed myself too hard. LISTEN to you Drs but more importantly your body. 🙏🏼

Hi @deb26 and welcome to our head and neck group. Proton is the best for accurate zapping with minimal peripheral damage. Good luck and if you have any questions or concerns, this is the place.

My husband is going through proton radiation treatment now. Before he agreed to proton radiation on his neck, he asked to see the statistics and research indicating a better outcome with neck radiation. His doctor provided that and my husband decided to go ahead with the treatments in his neck area. My husband's cancer is in one of his sinus cavities.

Hi
Pet Scan talk.
This 4th year from a Thyroidectomy because a biopsy indicated papillary cancer, I was recalled.
The ultra-sound this year show 3 areas of calcification. The ultra-sound did not specify whatthey were but said possible lymph nodes.
It was arranged that I have a CT scan. This area had not been homed in and pictures taken before.
This came back as 2 lymphs 8mm and 7mm and an area behind 19mm x 9mm. ? what it was.
The surgeon had remved the whole thyroid and 12 lymph nodes with a dissection of the bed.
As there was no other comparative picture, the scan was inconclusive. Radiography said RAI scan or PET scan.
The surgeon chose PET as he said he would get a better look.
But having been diagnosed a 4 mths space from stroke and rapid persistent H/Ratewith AF, I questioned the rules of Pet Scan. Stop my thyroxine for 3 weeks, no dfism no iodone much during this time,
I refused RAI Treatment and suppression at post thyroidectomy.
Hypo-thyroid would fight the CCB Diltiazem 120mg CD to bring down my rapid heart rate and at that time was controlling it. BBs proved to be hopeless.
I had stopped it by 3 morningsas the start was required. My TSH had risen from 1.7 to 2.7 1st day and then had got to 5.7 after Day 3. Already in hypo.
The surgeon had a conference and it was decised to have a PET scan.
Arguments between me and the provider of the PET scan pursued.
Directions were have TSH as high as possible so I left it out 2 mornings.
No carbohydrates day prior or iodine foods. No sugar. No stenuous exercise day before.
6 hrours no food. Water OK.
The infusion was made up and came from Australia. Australia - Wellington on the morning, 2 hrs delay because of fog. Wellington - Auckland. Auckland to Whangarei!
I arrived early andwas told of the 2 hour delay.
No sweat I had things to do.
Results of the PET scan were disappointing because the 3 calcified areas did not light up but my pituitary Gland got warm. A dot on right lung, inflammation of left hamstring, and bladder, only.
An MRI was indicated for my pituitary gland. No problem and brain showing where the clot had caused the stroke was.
Because no comparisons of this 3 areas inconclusive.
Another CT scan 6 months to see any change with iodine.
No change except the now 7mm and 6mm size of lymph nodes had changed and the other changed down 19mm x 8mm.
Inconclusive so scheduled to have another CT scan with iodine in May 2025 6 mths. My surgeon has left so another surgeon is scheduled to get the resuts in May.
I was radio active for some short hours after PET scan and had to stay isolated in a hotel room, flushing toilet twice.
A PET scan is costly.
But I would rather have that than the RAI treatment scan with stopping my synthroid for 3 weeks. They checked my sugar status and it was 5.
Prior knoedge for information is so important.
Research.
Thyroid papillary cancer grows 1mm a year.
Cherio JOY. 75. (NZ)

Concerning PET scans: I was diagnosed with laryngeal cancer that was confined to my vocal cords. Both my surgeon and my oncologist put in for a PET scan. Both were denied by my insurance (BCBS).

Their explanation was that since the cancer was confined to my vocal cords with no lymph node orbiting other tissue involvement, a CAT scan would show anything in my head and neck, and a PET scan was warranted.

So, your oncologist not wanting to do a PET scan may be a good thing. It may mean there is a very low liklihood that the cancer has spread and they know what they need to know to adequately treat your situation.

Incidentally, I had 28 radiation treatments, after which the tumor was gone. I have been checked every three months for the last 15 months, and there have been no signs of recurrence.

Hi Julie,
My two cents for what it's worth... 64 year old male, went thru 35 sessions of radiation and 6 chemo (cisplatin) for cancer of the tonsil which had also spread to the lymph nodes. No surgery. I agree overall with what the others have said. However I did have a feeding tube and was grateful for it every day. I never would have been able to maintain my weight and nutritional needs without it as I could not even swallow water for some time let alone any food. Using it was very easy and the recommended Kate Farms formula supplied all I needed for the four months I was using the tube. The worst time for me was the last few weeks of treatment and the first month or so after treatment. Today I'm six months post treatment and feel much better. Ability to swallow most food is back to about 70% and getting better. Lymphedema of the neck was moderate but much better as I've been doing all the recommended massaging exercises. I never lost taste but did lose saliva so I still have dry mouth but it's easy to deal with. I also have fibrosis of the neck (constant neck pain) but doing exercises for that as well. Most importantly you must do your swallowing exercises which I'm sure they will review with you. Bottom line as you've heard by now, is the side effects from the treatment will be challenging but absolutely do-able and survivable. Mostly, you'll need patience. I remember speaking with people who had gone thru it after I was diagnosed and hearing that they were months after treatment and still had issues was scaring the heck out of me. But now that I am six months out I realize how quickly it went by and how comparitively wonderful I feel now. Stay positive! You can absolutely handle the treatment and you will beat the cancer. BTW I was diagnosed in February this year and declared cancer free in September. You definitely got this!

Thank you for this comment. These help tremendously to give me the confidence to stand behind my decision to request one. Which I already sent the request to the main oncologist (I think).
Should he deny the request, I will find another oncologist that’s outside the proton therapy center that may have a more unbiased.

I'm a Mayo Rochester patient and it's my understanding that a PET scan is pretty much standard procedure during diagnosis. It can identify cancer anywhere in you body. Seems to me that's something we'd all wanna do ASAP. You cancer team may have a good reason for not doing it but as a patient I can't imagine it. I would rather delay my radiation treatment a few days or weeks and do the PET. If that's the issue.

Thank you so much! It helps chatting with someone!
Happy holidays!

my surgeon removed lymph nodes from both sides even though the malignant nodes were on one side. this confirmed being clean on the right side therefore not having to widen the radiated area. Saved me a lot of additional exposure and problems. Much rather have the additional surgery than the radiation challenges