Meet others living with Head & Neck Cancer: Introduce yourself

@loiswhitfield Hello and welcome to the Head and Neck group.
I agree with @harleytiger that the side effects from radiation are not good, but ….
We question the need for radiation therapy for stage one SSC but stage four doesn’t seem like it will just go away on its own. Since it isn’t a rapid growth cancer, waiting for an MRI next month or a PET scan should show something. If it shows nothing, then another scan down the road likely should be done. And then if something is visible, don’t say no to radiation.
Now, about radiation. Since I am not a doctor I can advise differently. Whilst the doctors have their standard radiation protocol where more is better, we do see successful outcome in patients who stop radiation when it becomes too difficult for them, usually at the four to five week mark. No guarantees but some treatment is better than none.
For me I had seven weeks of it, screaming and kicking during the last week or so. Lots of aftermath to deal with over the years. But twenty-five years out and I haven’t made acquaintance with the Old Man yet.
I certainly wouldn’t tell an oncologist that I will do the radiation for a few weeks. I would start and later say that is enough. But that is me. I hope you think again when you get your test results next month. Radiation, as bad as it is, is far better than the alternative.

@harleytiger
I keep second guessing myself. Every little pain or feeling I get seems like the cancer has come back. I have appt with my oncologist surgeon on Friday, July 3. She wants to see me and maybe will schedule a MRI sooner than August. Wishing you the best outcome and praying things go well for you. Everything is still so new to me. Just found out I was stage 4 with squamous cell carcinoma on the parotid gland in August 2025.

I had metastatic thyroid cancer at 16. Was inpatient for two weeks, remember having several tests/procedures before first surgery. Opened me up knew it was cancer and closed me up. Then more tests before he went in a second time to remove my thyroid and some lymph nodes. The following year I had my first high dose inpatient radioactive iodine treatment. Had a total of 3 annual inpatient radiation treatments before being cancer free. Twenty years later I was diagnosed with a recurrence. Never realized just how much radiation I was given until a fourth inpatient radioactive iodine treatment was necessary. At this point I’m at the maximum radioactive iodine limit before becoming high risk for bladder cancer and/or leukemia. I’m assuming they blasted me with radiation due to my age. The fourth treatment was successful and have been cancer free since 2000. I currently have a string of lymph nodes in my neck that have the appearance of cancer. After several negative neck biopsies my Endocrinologist just orders an annual neck U/S to monitor them for changes. So far so good they haven’t had any significant changes.

I do wonder if my osteoporosis is related to taking Synthroid for 47 years. My current dosage is 200mg one daily Mon-Sat, two on Sun. Makes me very nervous because my understanding is that it’s a substantial dose even for a patient without a thyroid. Would love feedback if anyone has more information regarding this!

Looking forward to meeting the people in the group! Hope everyone has a wonderful holiday and stay safe!
Laurie

@loiswhitfield The issue in your case is that you're stage 4. I was stage 1. I had surgery and 25 rounds radiation. I don't need to explain to you the difference between 1 and 4? I would be curious if your parotid gland is the primary source or not? I'm sure at this point your doctors have determined the type of squamous cell cancer you have? I'm no MD, but I would be surprised if your doctors don't strongly suggest both radiation and chemo therapy? Just know there are two radiation machines photon and proton. I didn't know that. I had Photon, but I wish I would've known about Proton. If you do choose radiation, ask for a lower dose if possible? I have read that sometimes lower doses are just as effective, but do your own research and ask a lot of questions. Radiation is by far and away the worst thing I've experienced but I'm not a year out yet. I am getting better. I wish I had all my tastes back and saliva, but I don't. I'm alive though.

@harleytiger hear you .. if I had known and fully aware of all these late effects of radiation - I, too, would have opt out of radiation. My lifestyle and the meaning of being alive is gone - my personal view!
Take care!

Hello @happydales and welcome to head and neck. You certainly ought to glow in the dark after all your treatments. Thyroid cancer seems to be a tough one to get rid of. Perhaps because it likes to show up at a young age and then has lots of time to reconfigure and show itself again. Your comment about osteoporosis is realistic. Many factors influence osteoporosis and supplemental thyroid hormone is one. I was wondering if you see an endocrinologist for management? After reading a study about older women on long term thyroid hormone replacement, which I am, and the frequency of over medication due to lack of monitoring, I started requesting TSH and T4 testing. It has resulted in a reduced dose for me at the age of 72 and remains to be seen if I can improve my osteoporosis now.
Happy Fourth to you!

@loiswhitfield When I was 71 yrs old I had 9 chemo and 33 radiation treatments. i'm now 78 and on Keytruda. My MRI's show no growth in my skull cancer. The radiation caused damage to my pituitary gland, but I am taking hydrocortisone and testosterone to solve the problems.
I'm still alive and don't know but believe. the radiation either killed my cancer or prevented it from growing. Your decision was a tough one. I wish you the best. Hopefully your MRI will show positive results. Thanks for sharing.

@loiswhitfield I went through radiation for HNC 20 years ago and am here to talk about it. My sister went through radiation 4 years ago, but the HNC returned. She tried the immunotherapy but did not survive the outcome. There is so much we don't know about cancer. Everyone is forced to endure the consequences of a healthcare system that doesn't always have adequate treatments available. Good luck with your decision. I hope it works out for you.