Tonsillar cancer scanning

redreher1967

I was treated for Tonsillar cancer stage 1 the fall of 2023 now recently I was diagnosed with stage 4 cancer that was metastatic from tonsil to lungs and bones. I had a scan 3 months after my tonsil cancer treatment and it was clear, my doctor elected to scan me once a year after my first 3 month scan. 10 months in I had pneumonia and there were x- rays, CT scans and a pet scan that's when they discovered the cancer in my lungs and bones. PLEASE! After your treatment for tonsillar cancer demand or insist that you be scanned at least every 6 months preferably every 3 months. I feel this should have been caught sooner.

wbcgaruss

Hello, redreher1967, and welcome to the CSN H&N discussion forum.

My heart goes out to ya, who needs any news like that.

Sorry to hear about your situation.

It is hard to believe how cancer has traveled and grown so in a 7 month period.

I don't know why your doctor only did a 3-month scan and then immediately switched you to yearly scans.

That is not the time frame nor testing I am familiar with.

Generally, your ENT will see you every month for the first year. This will probably vary by ENT, but during the first year post-treatment, they usually pay quite a bit of attention to their patients.

Scans are usually CT Scans with contrast at the 3-month mark, a PET scan at the 6-month mark and probably CT scans again at the 1-year mark.

A close watch is usually kept on head and neck patients and probably cancer patients in general during especially during the first year.

I don't remember exactly but during my first cancer I was seen every 3 months by my ENT and when he thought it appropriate he started seeing me every 6 months.

I think you will find most head and neck people on this board had generally similar timelines and scans.

I am praying you have treatment options, please share with us your status and treatment options.

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.

Our Motto here is "NEGU (Never Ever Give Up)"

Wishing You The Best

Take Care, God Bless

Russ

eDivebuddy

Sorry you're going through this. I have no idea what kind of oncologist would take surveillance so casually to not follow the recommended guidelines. Now these are for head and neck n general I would think tonsillar would be on the aggressive side of these guidelines as the tonsils are part of the lymph system.

NCCN Guidelines for Head and Neck Cancers (Version 1.2025), the recommended follow-up schedule after treatment is as follows:

Year 1: Every 1 to 3 months

Year 2: Every 2 to 6 months

Years 3–5: Every 4 to 8 months

After 5 years: Annually, as clinically indicated

I hope you'l respond well to any treatments they find for you. I was diagnosed in September 2020 with SCCHN 1 month after being diagnosed with stage 4 NSCLC. That glowing on my neck is poorly differentiated Squamous cell carcinoma of the head and neck.

goffrey

I went to Mayo Clinic for my cancer care. I was told Pet at 3 months then annually. It is unusual to have scans more often than that and most times insurance does not cover it. You should be seen and scoped every 3 months the first year but not scans every 3 or 6 months. That is not recommended treatment. I am sorry this happened and I hope they can possibly give your husband immunotherapy or some other treatment!

goffrey

Was your cancer HPV positive? What was your initial treatment?

redreher1967

Yes, my lung biopsy was HPV positive also. My treatment was 7 weeks of chemo and 36 days of radiation.

Logan51

red

goffrey is right about the PET scans. Rule of thumb is one before tx, one at 3 months to establish a baseline for the Imaging Drs. to compare future tests to, and then one per year for the next 5 years. Back in the day, on this Forum, there were several False Positives who went thru unnecessary Ops. within the 1st year.

For it to come back so soon, and to this degree…No. For whatever reason, your C Drs. did not get it all with the first tx. Did they remove your tonsils? That's a given. Plus, wherever they zapped you with Rads…they missed a spot or two, however small, which is one of the downsides of Proton Rads compared to the older Photon that is less targeted. AND, did you get both Cisplatin and 5-FU as your Chemo? If so, then 7 Chemo sessions is just a little bit at a time, rather than the older regiment of 3 concurrent w/Rads Chemo that is rougher on Patients.

How many places did they zap w/Rads per session? You can hear the machine when it's zapping you, so you should have at least an estimate. I was "unknown Primary Nasopharyngeal," in late-2008. They zapped me in 20 places/session: 56 greys from the chin up, 60 to the upper-half of my throat, and 68 to the bottom half. My regiment dated back to the 1990s and before: just 2 96-hour floodings of Chemo (Cisplatin and 5-FU) with concurrent Rads. Rad Dr. even ordered a 2nd/11th-hour Biopsy in hopes of finding the Primary, which my ENT did not. Got so sick I had no Rads in week #5, and started #6 in a Hospital for 4 nights getting antibiotic drips. Back to get the rest of my Rads at the start of week #7. I only tell you this because the H&N C Drs. have adjusted their Chemo regiments to be more "Patient friendly."

Sorry to hear your C story and hope your Drs. can come up with a successful plan.

goffrey

https://csn.cancer.org/discussion/comment/1721776#Comment_1721776

https://csn.cancer.org/discussion/comment/1721827#Comment_1721827

Have they came up with a plan for your treatment now? I know many patients had great luck with immunotherapy.

https://csn.cancer.org/discussion/comment/1721827#Comment_1721827

Actually the survival rate and disease free rate is the same for Proton and Photon radiation. Also my medical oncologist did not recommend 5-FU when I mentioned it to her. I was put on carboplatin and taxol then cisplatin. She told me 5-FU is highly toxic and unnecessary for this type of cancer.

goffrey

https://csn.cancer.org/discussion/comment/1721827#Comment_1721827

I would also say I had Proton radiation and you do not hear it when it is giving you the radiation.

Logan51

Okay. I was Nasopharyngeal, so a different C. The old Photon machine would buzz when a zapping was happening, and I would count them down.

eDivebuddy

Linear accelerators (LINACs) are the machines that make a buzzing sound when firing. Gamma Knife and other photon-based treatments typically do not buzz during radiation delivery.

A LINAC uses a magnetron or klystron, similar to what powers a microwave oven or radar system, to generate microwaves. This is what produces the distinctive buzzing sound—much like the hum from an old cathode ray tube (CRT) television or radar scope.

The microwaves accelerate electrons, which are then slammed into a hardened tungsten target. This collision generates the high-energy X-rays used for cancer treatment.