Newly diagnosed and scared

Thank you. 🙏🏽 I mainly also want the petscan to make sure I’m not covered up in cancer before going through tx in just these two areas (head/neck). I’m shocked they said it was overkill and they weren’t doing it because of the radiation? Whaaa? It doesn’t have THAT much, so that’s one thing that actually made me want it more, the excuse.
And, they don’t have ANYTHING yet even showing that I have cancer in my neck other than experience that it might have cells that spread there.

I’m going to one of the radiation proton centers and it almost feels as if they don’t want to risk and have anything mess up their having another candidate for their treatment program vs providing the patient the absolute best protocol for their particular case.

I hate that this is the way I feel, but the way I was rushed through this appointment, which consisted of MANY specialists, the ones that were key just seemed to be on a sales pitch.

I’m not sure how to go about finding another oncologist for a second opinion, especially since this is chugging along so quickly. And, I’m at the best facility where I live. But I REALLY want another set of eyes on this and don’t know how to go about it.

I apologize for dumping on you. I guess I’m hoping others might see this as well. I’m in so much pain from the post surgery migraines that it’s tough to advocate for myself effectively.

Here’s to you remaining cancer free!!! I hope they got every last cell!

Thank you my friend! I am lucky. I live in the Philadelphia suburbs and had my choice of Hospital of the University of Pennsylvania, Thomas Jefferson University Hospital-Sidney Kimmel Cancer Center and Fox-Chase Cancer Center. I chose Fox-Chase based on reputation and an easier commute to get treatments. Once I completed seeing all the docs and specialists, my treatment (diagnosed in Jan/Feb) started May. Fox Chase also had a radiation treatment satellite office only 10 minutes from my home, which worked out great.
I would press the Petscan issue and perhaps if they refuse to do one, tell them you are getting a second opinion. Hopefully they cave - otherwise seek the second opinion.
Thank you for the kind words!

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

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

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 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.

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!

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
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)

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.