Restricted movement in my arm from rads
This is my first time posting. I had treatment for inflammatory breast cancer 20 years ago that included chemo, a mastectomy, stem cell transplant and radiation. I haven't seen a radiation oncologist in maybe 18 years. During that time I have had tightness in the muscles of my chest where I got the radiation, the muscle in front of my armpit was hard as a rock, I could not move my arm farther than about my chest and I had numbness and tingling in my hand when I tried to rotate my wrist. I say “had" because I had an ablative CO2 laser treatment (the very same thing they do for cosmetic laser treatment to improve wrinkles and signs of aging) on the area that was radiated last week and it worked like a charm. I now have nearly complete range of motion in my arm and hand.
I am posting my experience here because I am hoping it can help someone else. After a lot of googling, it doesn't look to me like this treatment is readily available. I do not know why, but it seems doctors are more concerned with curing cancer than they are finding solutions for dealing with the after effects of poisoning and burning the cancer. Dermatologists are usually the ones most skilled at using lasers, so perhaps they make more money doing cosmetic procedures they're less interested in treating rehab issues. The research is out there documenting that the CO2 laser has been used successfully to help “radiation fibrosis" and other kinds of burns and injuries to muscles. Dr Peter Shoemaker the head of dermatology at the military hospital in San Diegohas published several studies on his use of the laser for burns and other injuries.
If anyone wants any additional info, I'll be glad to tell more, but not sure there is any interest or if others have experienced the arm problem I did.
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MidloMom, welcome to Breastcancer.org! We're so glad you've joined us and hope you find it to be a place of support and encouragement. We're sure someone will be along shortly with their thoughts, personal experiences and advice. You're not alone here! Thanks for posting, and please, if you have any questions don't hesitate to get in touch with us.
Warm wishes,
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Midlo Mom, I read your post with interest since I am in the process of
determining whether or not to get radiation. My understanding is that
if I don't I'll have a 10% chance of recurrence, and if I do that percentage is 2%.
Thank you for sharing your story!
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aosh, welcome to Breastcancer.org and thank you for posting! May we suggest that you both fill out your profile with information on your diagnosis/treatment etc as this will help other community members to easily know your situation and answer your questions. Here's some guidance on this: https://community.breastcancer.org/help#entering_d...
Hope this helps!
The Mods
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aosh
Keep in mind that the OP's radiation was TWENTY YEARS ago, it's mapped out better now and she also had IBC, which means it would have been a much stronger and more comprehensive course of radiation than most patients get. I'm sorry she is having problems, but please don't let it scares you away from a very standard treatment.
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Actually, my point is that I have found a doctor that made a dramatic difference in “fixing” the side effects of radiation. I certainly hope my experience will not scare anyone from getting rads. I was just wanting to let folks know if anyone is “out there” experiencing similar issues that there is treatment.
You are correct. The last time I saw my rad oncologist, she told me she gave me twice the normal dose. I would do it again, as hard as it was. No way to know if I’m alive because of rads, chemo, stem cell transplant, or a combination of the 3.
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Thank you for posting about this MidloMom! I would be interested in getting more information. I underwent radiation almost 11 years ago after having mastectomy/reconstruction/later flap on my cancer side. I did get some permanent damage to range of motion but not bad enough that it effected my life. I got diagnosed with reoccurrence in my collarbone September 2019 and went through radiation in February through March 2020 and this time the damage is more loss of range of motion to where I am having to deal with not being able to raise my arm above my chest in front and less than that on the side.
I'm also not trying to scare anyone away from radiation. My reoccurrence was as stage 4 and I was zapped hard as the RO thought there was a chance I might be oligmetastic and we went full guns to hopefully get the cancer.
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Midlo Mom: thank-you for your post for more than 1 reason. It is great to hear that you are a 20 year survivor of Inflammatory Breast Cancer! I’ve not found much related specifically to IBC. I am starting RADS next week for 30 treatments & very concerned about fibrosis . It is great to know there is a treatment option ! I will be doing my research!
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hello all I had few side effects have chemo and rads I m a black woman the rads made the inside of my hands usually pink and bottom if my feet really dark like a burning. But after a few yrs cancer free my color almost all returned to normal. Also u had to get therapy to use my left arm again due to Lmast. But it all was worth the side effects now this yr a 27yr Survivor Praise God. msphil IDC stage 0/3 nodes 3 mo chemo before and after Lmast got married was planning at diagnosis. Then 7wks rads 5 yes on tamoxifen.
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This is my first time posting. I searched and read many posts before and during my treatments, but never felt like joining. I just wanted to put the whole experience behind me. In the last few weeks, I realized I was unable to put my left arm behind my head like I did during radiation. My left chest muscle is very tight, and I have burning pain when I try to raise my left arm. I called the radiation nurse and described my symptoms, she said it seemed like a long time after radiation to have any issues. She suggested I had “cording". I reminded her I didn't have any lymph nodes removed, and I didn't feel any cords. She recommended that I come in for an exam. I'm reluctant to go back in. I'm done with exams and procedures. I'm hoping if I just keep stretching the arm and doing range of motion, if it will resolve by itself?
I am not on any hormone therapy prescription. I had a consultation with a medical oncologist, but my surgeon did not recommend it at this time.
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having surgery and radiation can damage the skin and muscles of the area. Maybe what you are experiencing has been caused by your treatment. Have you considered seeing a physical therapist. Maybe one that has experience with breast cancer. A loss of movement should be addressed. I would have the exams to rule out anything untoward and out your mind at ease. Then go down the physical therapy path.
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Thank you, MidloMom, I'm going to bookmark this! I am so happy that you have been relieved of the tightness and pain after 20 years! You must be on Cloud 9! You are the sweetest to post this to help us. I'm just starting 35 rounds of radiation and have a folder of information to help me heal. This is going in that folder and I'll save that doctor's information.
My RO presented the radiation as a 60% risk of my IDC coming back without, but 10% risk with radiation. I also had 5 involved nodes. A wise and lovely friend who has been through bc warned me, "As early as possible, you must aggressively overpower and beat up those cancer cells with every tool you have." For me, that includes radiation. They now have technology that shuts off the radiation beam when your heart is in the way. It tracks with your breathing. I weeded out the first radiation center to which I was referred. Their technology was trailing the cutting edge center I ended up choosing, so please don't feel you have to be treated at the first place your MO or SO mentions.
I have a great IMD helping me eat healthy who helped repair my gut and immune system and will help me during and after my treatments, along with a good PT to see weekly to try to keep my range of motion. I sure need it already! My left arm under the shoulder is definitely tight since surgery, and she saw cording on our second visit, even though I work at the exercises every day.
I have 200mg melatonin cream ready which studies are now showing helps with radiation burns. I'm definitely on that wagon. I'm also going to continue the twice weekly high dose IV vitamin C at 50g (which I did throughout my entire hormonal therapy and successful surgery). A Nov. 2020 study out of South Korea found that IV Vitamin C at 50g or above reduced radiation-induced inflammation both during and after treatment in the group of women who had twice weekly IV vitamin C infusions. It takes 1-2 hours and I consider those my spa day.
Msphil, Praise God! 27 years, that is wonderful! You are very inspiring to those of us just beginning to heal.
DeniseML, it sounds like you are at the same place as me, about to begin 30+ rounds. Please post to the August 2021 Radiation boards so we can keep encouraging each other as we go through it. I am going to look for that thread today and bump it back up to the top of Active posts.
Blessings all,
Esther
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espressofixr, yes, please go back for a check-up. I had loss of range of motion, I believe due to both surgery and radiation. Physical therapy was prescribed. I saw the therapist only a handful of times and also did the work on my own. I still do those stretches, and my ROM is back to where it started (which was very good) and I intend to keep it that way.
The longer you wait, the harder it will be to regain your ROM. Please make an appt and get the process started. You may need to specifically ASK for a referral for PT. It might not be suggested, for whatever reason. But if you get to a therapist and they can't help you at all, they'll let you know that.
All the best.
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I will join in suggesting PT. I just finished 3 sessions of PT and it has made a big difference in my ROM of my arm. All the stretches can easily be done at home once you get some direction from people who know what will help you
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A big thanks to all who took the time to encourage me to seek help with my problem after radiation. It was so touching. I am just reading this over after several months. I will admit I did not make an appointment to have PT. I was so DONE with seeing anyone at the cancer center and making appointments, getting undressed, and all that. But, I did my own range of motion exercises. After about 6 weeks, I was able to move my arm through its normal range. I have been back for my yearly mammogram, and it came back normal. I also had a followup bilateral breast MRI. The suspicious cyst they were watching had decreased in size, so they expect it was benign. I am very happy to be able to put the whole experience behind me. Many thanks for all yournsupport
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Great news Express. Congrats.
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