Interventional Radiation treatment for benign parotid tumor

Radiation is a lifetime nightmare that keeps on giving. I had parotid carcinoma surgery followed by proton radiation 16 years ago. The damage done by radiation was extremely far worse than the surgery. Find a surgeon who specializes in parotid tumors for the best outcome. Of course this is your decision to make, but I doubt anyone in this forum will praise the long term consequences of any type of radiation and would never undergo it unless absolutely necessary. Knowing what I know today, I would have taken my chances and refused radiation to prevent the current destruction of my mouth, hearing and even watching my outer ear and earlobe atrophy. Please do alot of research on the long term effects of radiation. It is your choice to make, but please make it an educated one, not an emotional one. Wishing you a successful outcome.

@pampou
Thank you for all the good information. Do you think this goes as well for the current protocol of 5 treatments of radiation after a small lumpectomy for breast cancer? I have a paraganglioma carotid body tumor (surgeon is closely “watching” and just finished breast cancer surgery. I am nervous about having any breast radiation at all. Thank you,
Suzanne

I really only know about the consequences of radiation to the head and neck. I don't imagine any radiation is not without after effects. I suggest you talk to your radiation oncologist and demand to know about ALL potential consequences. I refused chemo even though it was recommended. I survived but knew there was always the possibility I would not. I was not willing to be subject to the damage to my body. I was ignorant about radiation and no doctor mentioned any side-effects until a few minutes before my first radiation treatment. I believe that was malpractice. I continually say to educate yourself and do what you believe is the best outcome.

Thank you very much! I believe the same way you do, as I know we are all Jason Bourne “Outcomes” and part of the statistics of the surgeries and treatments we receive. The options are out there, but side effects and quality of life are always on my mind.
I appreciate all of you, and pray for all of us! Thanks again

@texashummingbird,
After the paragangluoma tumor removed from bifurcation of my carotid artery, no radiation or chemo. Got good margins, and was benign.

@gangcarotid1
Hello gangcarotid1,
That is great news! Would you mind sharing if your surgery was at Mayo MN?
I will be continuing my paraganglioma journey after radiation treatments for
my recent breast surgery. Just trying to research all the options. The tumor
on my neck is also at the same spot. Hugs and best wishes, Suzanne

@texashummingbird
Yes, my CBT surgery was done at Mayo Rochester. My surgeons were Dr. Eric Moore head & neck cancer surgeon, and Dr. Michael Link, neurosurgeon. If you see them, I'm very fine with you mentioning my name (Wendy Stephenson, from north Idaho) just so long as you express my endless appreciation. Wishing you the very best!
I'll be back for a check up on my kidneys in Oct. Dr Vidit Sharma SAVED my left kidney. Am considered an intermediate risk for recurrence, so go back every 6 mos for checkups.

I've been in treatment at Mayo Jacksonville for 2 yrs. Squamous cells invading lymph nodes in neck. Had squamous removed from forehead followed by 20 radiation zaps where I lost an inch of hairline. Then tumor over my ear removed surgically followed by 20 radiation zaps where I lost inch or 2 of hairline over ear.
Started infusions with Libtayo and breakouts ceased but still showed up in scan in neck lymph nodes. Had 2
interventional procedures of alcohol injected right into nodes...these were effective and eliminated presence of squamous. I'm monitored with Signatera testing from original tumor material and numbers are now lowest so far.
My radiation events were fine and I don't have many side effects...I blame fuzzy head but also aging.

@pampou could be speaking for me. This is said kindly, but truthfully. When I was 34 I had a right parotidectomy with unclear margins after surgery. It was suggested I go back into surgery within 3 weeks and I had too much anxiety after a 6 hour surgery the first time that was able to conserve my facial nerve. I wish that I had asked more questions, or that someone had addressed my anxiety. Instead, I went against the opinion of the tumor board at Stanford Hospital. My other option was radiation treatments for the unclear margin that was on my face.

This was at a time without the benefit of a computer, cellphone etc. I was even an RN in oncology! But I was chemo certified, knew nothing about long term, emphasis on LONG, effects of radiation. I have dry mouth, and hearing loss from fibrosis of my middle ear. The damage from radiation keeps going. I am cancer-free all these years, now I'm 68. It was literally half a lifetime ago. I have hearing aids. Lost my hair to the entire right side of my head and it never grew back. That is a cosmetic problem that I've grown used to.

I have fibrosis (hardening ) of the nerves to my upper back and neck. I take Baclofen for muscle spasms and a medication for migraines related to these tightened muscles. Even though it was half a lifetime ago, I am scheduled for a MRA to visualize the arteries within my skull. I have pulsatile tinnitus and there's a possibility my arteries may have been affected by the radiation treatments. Just today I realized I have to ask what treatment there would be if this shows changes? Always have to ask a ton of questions. I find it's better to go into things slowly to give myself time to come up with good questions.

We can never know what will happen in the future. I believe there are better resources now for patients. I live with 5 autoimmune illnesses and the side effects of a treatment I had many years ago. All that is to say my current ENT doctor looked at me gravely and said, Parotid gland tumors are tricky. I think you made the right choice.

Wow i had paronid gland tumor removed and 33radiation treatment i hope my body heals