Long term radiotherapy effects and fear of relapse.

Posted by vitaliy @vitaliy, Aug 26 6:53pm

Hello.

IN 2018 I had been diagnosed with CUP cancer with metastasis in the neck area lymph nodes. After surgery, 3 courses of Сisplatin+Fluorouracil and finally a combined chemo radiotherapy soon it will be a 6th year post treatment.

But recently I have this painful/burning sensation in my neck, sometimes manageable, sometimes severe, feeling like I dont have enough skin and it's being stretched. It is hard to understand if it's inside my neck or on the surface of the skin since my sensitivity there is funky after radiation. SCM muscle becomes hard as rock after the smallest movement and sometimes without movement at all.
I keep falling into this circle of touching and palpating my neck which causes more pain/burn and muscle spasms, which causes me to touch it more and so on. I don't feel any new lumps or anything abnormal, I did MRI/CT scans each 6 months all this time and there were no dynamics, but voice in my head telling me it could be relapse and panic attacks follow up.

Have anyone who had radiation on the neck area experienced something similar? Could it be fibrosis, or different kind of radiation damage?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

sandy8043 | @sandy8043 | Aug 26 9:23pm

I hand some residual scar issues and fibrosis. Both were eased with myofascial release massage by my OT. I also saw a new video by @CancerRehabPT on YouTube about red light therapy. https://youtu.be/P8MuSBjHa4U?si=FpGWU2W3y-pDXBVH
I see others ha e tried red light therapy and have liked it.

Sue, Volunteer Mentor | @sepdvm | Aug 28 9:35am

Hello @vitaliy and Welcome to Connect. I had radiation with concurrent targeted therapy with Cetuximab 13 years ago after my surgery for SCC of the ear canal. Radiation is a gift that keeps on giving for many people. I have neck stiffness, headaches, and hearing loss that slowly creep up even 13 years later with new symptoms. Surgeons say that it is radiation side effects are the cause. The more I read on Connect, the more I can see that it happens to many of us. I have read about the red light therapy and am considering trying that. Can you ask your oncologist for a referral to a physical therapist who works with cancer patients? Also, I get good temporary relief from topical medications like Voltaren, Biofreeze, Salonpas, and similar antiinflammatory topicals. One thing that always stays with me about pain from a recurrence is that if cancer returns, it will be a constant pain, not one that is intermittent or comes and goes. My original ear pain from the cancer was a non-relenting 24 hour pain so I believe he was right.

vitaliy | @vitaliy | Aug 28 10:38am

@sepdvm Thank you a lot for response. Right now I am way more concerned about it being a recurrence rather than pain itself, I think I am going crazy because this pain was present with me during a long time already after radiotherapy, maybe not this severe, but I also did not provoke it that much by constantly touching and pushing my radiation affected area on neck and as you mention it progresses with time for many of us.

But my brain decided that this has to be a recurrence and it seems I can't change it's decision using logic.

As for the possible post radiation therapy I think it's a long shot to look for any help for me here in Ukraine, our post cancer treatment care is close to non existing, last time I mentioned about my headaches and constant brain fog and all this stuff my oncologist said something like "Well, yea, I too have it everyday before I have to go to work" and smiled. But I will try one more time after a fresh CT scan that is scheduled in a month.