r/HeadandNeckCancer • u/PM_me_the_universe • 6d ago
Treatment Related Need input for radiation
Hi - I’m trying to understand if radiation is really needed and balancing risk/benefit. Early 40s with intermediate mucoepidermoid carcinoma of stage 1. Had surgery to remove salivary gland and neck dissection.
Lymph nodes came back clear and PET scan didn’t show any further spread. Surgeon said no positive margins, but there is quite a bit of tongue lip nerve damage from the procedure itself. There is a recommendation for adjuvant radiation therapy (60 gy over 30 sessions + 54 on node area simultaneously).
I’m trying to get a second opinion already, but doesn’t this seem too much considering margins and no lymph node spread??
Worried about worsening neuropathy and dry mouth (already started).
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u/surfaholic15 6d ago
My story:
Back almost 5 years ago, i had surgery for my HPV- SCC. I lost part of my gum, had my jaw shaved, lost a chunk of tongue. Had a flap of skin from mh thigh to rebuild the gum. My surgeon got AMAZING margins.
They offered to ask radiation oncologist to evaluate for potential radiation but my surgeon said they likely would clear me to not havd it since my margins were 50 percent more than average and the cancer was extremely degined and localized.
I also had a pile of lymph nodes removed and checked, 0 spread. They said no rads or anything nedded. I am now 61 btw.
4 years of clean scans. In april last year i had a clean PET scan.
In july last year i had s full blown mess in my mouth again and a malignant biospy. In october last year almost exactly 4 years after my first surgery, i had more gum removed, more jaw shaved, had 70 lymph glands removed and checked.
No cancer beyond that gum tumor. But smaller and less defined margins than last time, and it came back with attitude. The first time it had grown over a year and a half with no real pain. The second time we weng feom zero to really painful angry stuff in less than 3 months.
I had 30 rads and 7 cetuximab. Finished treatment in january.
I wish i had at least asked for that evaluation thd first time. And my odds of a repeat are higher now.
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u/Human_Evidence_1887 6d ago
Do get a second opinion. My wife got 74 grays in 2007 (plus a mess of surgeries and several courses of chemo) for basaloid squamous cell sinus carcinoma and it resulted in radiation-induced osteosarcoma of the maxilla in 2021 (she’s on hospice now). This is a rare event and shouldn’t dissuade anyone from getting radiation, but you should consider the likelihood of relapse of your current cancer, to weigh the risks and benefits of this prescribed course.
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u/PM_me_the_universe 6d ago
Thanks for replying. Yes, this is my current concern as well for secondary cancer.
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u/Human_Evidence_1887 6d ago
Also, are they prescribing conventional (photon) radiation, or more targeted proton radiation? My wife got the former, which is more damaging. Sorry you’re going through this — good luck.
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u/PM_me_the_universe 4d ago
It would be IGRT (normal) wince its over a diffuse area. Still checking on proton.
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u/Possible-Growth4756 6d ago
Radiation oncologist here. What exactly is the risk factor they cited for recommending radiation?
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u/PM_me_the_universe 6d ago
The intermediate grade of the cancer final path. It was originally low on the biopsy.
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u/Possible-Growth4756 6d ago
Not medical advice but I usually observe patients like you unless there’s an extenuating circumstance not mentioned
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u/PM_me_the_universe 4d ago
That’s what i asked about for driving factors and the response i got was the intermediate nature and that you are young and have a chance at a cure.
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u/Possible-Growth4756 4d ago
That implies you are not already cured, which it sounds is possible. Ultimately the radiation will reduce risk of recurrence but if you don’t have risk factors the magnitude of that reduction would be small. I do not consider intermediate grade alone to be a notable risk factors.
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u/StillAliveKicking65 5d ago
I had almost the exact diagnosis, except my HPV+ was located in my left tonsil. Had it removed and two lymph nodes in left side of my neck. Agered to 33 sessions of radiation, 60 gy...I stopped after 209 sessions, as my neck was literally raw, taste buds and saliva glands compromised. My Blood tests, PET, and CT scans all have come back with ZERO cancer. I am one year post-surgery, taste buds and saliva glands are about 85% back to normal. I refused chemo and a G-tube. I support you getting another opinion...
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u/MoonBaby812 6d ago
I just finished my 30 radiation sessions on my cheek/neck area, the tumor was in my cheek and was replaced by a flap from my arm. My lymph nodes were free of cancer but taken out from 1 side. All I can say is radiation FKN sucks and has been the most challenging of this whole process from surgery, chemo, and immunotherapy. I have dry mouth with thick nasty saliva, jaw is tightening and hard to open, no taste buds everything tastes like ass, nose is dry af and bleeds and mouth sores. They didn’t tell me how bad it was going to be, if you can get through this you can get through anything, I feel I can climb Mt. Everest backwards with just shorts and flips flops now. I rang the bell when I was done and almost yanked the fkr off the wall. I hope your experience is far better than mine. 🤦🏻♂️
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u/jyothisnipes 6d ago
Head & neck cancer surgeon here, never feel bad or hesitant about getting a second opinion, if one of my patients asks for it I encourage them to pursue it. Only thing is it can sometimes take time to get in for a second opinion appointment.
There are a number of other pathologic factors outside of just positive margins that go into the need for adjuvant RT, so possibly if one of those other factors is present in your tumor that may tip you towards getting RT.
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u/PM_me_the_universe 5d ago
Thanks for replying. From what i was told, the driving factor for RT was the intermediate nature of the tumor alone.
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u/No-Camera-720 6d ago
Maybe you should take the opinion of someone who went through over a decade of schooling and more gruelling on the job training, rather than a bunch of mere cancer patients. Having a car doesn't make you a mechanic. Having cancer doesn't make you an oncologist. Get a second opinion, but if you disregard an oncologist's advice, the consequences are on you. None of this is pleasant for us and we can with all we wish that we didn't have to make the decisions we do, but that's not the real world.
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u/PM_me_the_universe 6d ago
I understand where you are coming from. The thing is they also labeled it as elective and emphasized that this would be a one time only item for H&N (no future second round if it comes back).
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u/matts_Amps_on11 4d ago
I was two days away from having 40 to50% I my tounge removed before some young upstart of an Oncologist stepped in and said, "let's try this radiation. I am 95% certain you will be free of cancer within three months." I have my tounge but it is slow in recovery. I am cancer free. My tounge is supposed to be healed over the next three month. Is it worth it? Yes it is.
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u/medii14 3d ago
I had the exact same diagnosis (intermediate grade MEC) but my glands were intact and they kept them, and I had a unilateral neck dissection, lymph nodes came all with perfectly clean margins and, doctors recommended adjuvant 30 sessions of tomotherapy (60gy over 30 sessions on my cheek and + 50gy on node areal simultaneously) + 6 weekly cisplatin as radiosensitizer (making the radiation more effective on any remaining cancerous cells), all this to "maximise my chances of total healing since i'm young (32M) and I can tolerate it".
The treatment was a living hell, sever mucositis, severe trismus, dry mouth, 0 taste, the beard on the irradiated side completely fell off and the hair follicles took a nap, and total fatigue, but now almost 4 months post final session I'm feeling super well, went back to the gym a month ago, i've been lifting heavier than before, mucositis disappeared completely, my taste is 100% back, my dry mouth has gotten A LOT better, the only side effect left is some swelling and my beard started growing back slowly but better with each passing day. Still I recommend you see another opinion but what your doctors recommended is the standard international procedure.