What to expect from treatment and ways to cope with side effects.
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Jan 25, 2021 07:33PM
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Jan 25, 2021 07:35PM
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MidloMom
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MidloMom
wrote:
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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Jan 26, 2021 01:12AM
Moderators
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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. 
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aosh
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Jan 26, 2021 06:09AM
aosh
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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!
Dx
11/25/2020, IDC: Papillary, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
Radiation Therapy
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Jan 26, 2021 06:42AM
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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!
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AliceBastab…
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Jan 26, 2021 12:29PM
AliceBastable
wrote:
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.
Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring.
Dx
5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2-
Surgery
7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel
Surgery
8/8/2018
Radiation Therapy
10/29/2018 Whole-breast: Breast, Lymph nodes
MidloMom
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Jan 27, 2021 01:29AM
MidloMom
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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.
cowgal
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Jan 27, 2021 02:14PM
- edited
Jan 27, 2021 02:20PM
by
cowgal
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.
DeniseML
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Feb 15, 2021 07:15AM
DeniseML
wrote:
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!
Dx
8/3/2020, IDC/IBC, Left, 3cm, Stage IIIC, Grade 3, 0/7 nodes, ER-/PR-, HER2+ (FISH)
Chemotherapy
8/25/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
Surgery
1/15/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Left
Immunotherapy
2/24/2021
Radiation Therapy
External: Lymph nodes, Chest wall