My Survivor’s Guide to Self-Advocacy: Battling Radiation-Induced Brachial Plexus Scarring

lilmstx

In 2019, I was diagnosed with breast cancer and underwent a left mastectomy. My treatment plan included localized radiation therapy to my left shoulder/armpit area. Well, unbeknownst to me, that treatment—along with a subsequent 2024 tumor removal in my left axillary tail (armpit)—was silently leaving behind deep, progressive scar tissue that would completely change my life. Years later (2025), I faced a catastrophic nerve crash in my left arm that led to four separate, failed surgeries.Through this painful and mentally exhausting experience, I have learned the following hard facts:

Electronic medical records are locked behind corporate walls. One network cannot automatically view your diagnostic history from another, leaving critical blind spots in your care. It's going to be your job to be the keeper of your records.

Most doctors and specialists work within their own wheelhouse. They are trained in their specialty, and that's where they stay. It is going to be your job to have them look outside the box.

Downstream fixes fail when the root is choked upstream. Releasing trapped nerves at the wrist or elbow cannot heal the cable if it is still being compressed at the shoulder by radiation fibrosis. It's going to be your job to advocate for your care by any means you see fit to use.

My advice to all my fellow cancer survivors out there is to listen to your instincts and never give in to blind trust when navigating this fractured machine. If your intuition tells you that your doctors are missing the big picture, take the wheel, question everything, and find that specialist who sees your whole body as one continuous system (the internet is a wealth of information).

Today, almost a year after this all began, I’m finally getting off this medical merry-go-round and seeing a peripheral nerve specialist. At this point, I'm going to have faith, that this is the final piece of the puzzle that's going to put me on the road to recovery.

I wholeheartedly, want to give a massive amount of credit to my oncologist, Dr. Revathi Angitapalli at The CenterTX for Cancer & Blood Disorders. I presented her with all the data to navigate my care. She truly listened and advocated right alongside me with additional medications, appropriate diagnostic testing, and the referral to my specialist of choice. Having just one doctor stop, look outside her wheelhouse, and completely hear me out is what finally broke the merry-go-around and gave me my path forward.

moderators

Welcome @lilmstx and thank you for providing such an insightful perspective about a very difficult side effect to manage. You should be proud of your tenacious advocacy to get to the root of the problem to get the care you deserve - bravo!

We hope the nerve specialist is able to improve your recovery. Please keep us posted how it goes and if you begin to notice improvement.

Some helpful links on advocacy for those who need it:

https://www.breastcancer.org/podcast/self-advocacy
https://www.breastcancer.org/podcast/helping-patients-advocate-for-themselves
https://www.breastcancer.org/managing-life/medical-records

We hope this helps!

—The Mods

maggie15

Hi @lilmstx, Great advice! I'm also battling radiation induced scarring in my brachial plexus, lungs, thyroid, larynx, as well as the breast /axillary radiation field. I have been consulting doctors and researching this since 2021 and it seems the root cause is dysregulation of transforming growth factor beta 1 (TGFB1) which is a protein necessary for tissue healing that sometimes doesn't turn off when it should and causes tissue fibrosis. It can even cause tumor growth when it goes from destroying emerging cancer cells to fueling cancer proliferation via a signaling pathway alteration (explains the numerous radial scars in my tumor margins.) Just this March MD Anderson announced scientists had found a gene mutation on chromosome 19 which seems to cause this TGFB1 disregulation in unlucky people like us. They are currently running a phase 1 clinical trial to see if people who have this mutation and are being treated with radiation for head and neck / breast cancer develop tissue fibrosis.

Last summer my right arm was way more numb and paralyzed than my brachial plexus MRI indicated it should be. My RO had me hospitalized for MRIs to rule out stroke, brain and cervical mets. Neurosurgery referred me to neuromuscular neurology. I eventually got an appointment with the rare neuromuscular neuro who doesn't specialize in stroke, ALS, MS, Parkinson's or genetic diseases. After a neurological work up, spinal MRIs, EMG and blood/spinal fluid tests the neuro told me that the cause was systemic but the results did not fit any of the usual diseases. Right around this time I also developed peripheral neuropathy in my left arm and legs. I was referred to a peripheral neurosurgeon who was of the opinion that my issues were caused by a combination of radiation fibrosis and immune mediated neuropathy where my immune system attacks my peripheral nerves. Since my right median, ulnar and radial nerves are all unresponsive she told me she couldn’t do nerve grafting, an option if only one of the three major nerves doesn’t function. She (as well as my pulmonologist) told me there is no way of reversing the radiation fibrosis.

When I investigated what is known about immune mediated neuropathy I found research papers that showed TGFB1 enters the inner membrane layer of Schwann cells in rats to help repair nerve damage but then in some rats atracks the outer membrane layer causing more nerve demyelination. This goes along with the remitting-relapsing PN I am experiencing in my other three limbs. I have regained some use of the thumb on my right hand which is a much bigger deal than it sounds like. I had learned to use my non dominant left hand fairly well but that now varies depending on what is going on with my nerves. A PT recommended hiking poles with ledges that I don’t really have to grasp to help keep me from falling. I see my neurologist again in a few weeks and have an appointment with a second opinion neuromuscular neurologist in January.

I hope the peripheral neurologist is able to help you. If not try to find a peripheral neurosurgeon in the event that nerve grafting might be appropriate in your case. At least the hand, thoracic and cervical spine surgeons I saw told me their surgeries couldn’t help me. There is a great deal of current research into the behavior of TGFB1 which will probably lead to avoiding or treating RIF in the future. Thanks to my RO’s referrals a large group of specialists have tried to solve the puzzle and kept me breathing and mobile. In my wildest dreams I could never have imagined that treatment for stage 2 breast cancer would lead to this roller coaster but I’m grateful I’m still riding. Let us know if you get any answers.