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Topic: Radiation Induced Fibrosis

Forum: Radiation Therapy - Before, During, and After —

What to expect from treatment and ways to cope with side effects.

Posted on: Jan 20, 2010 11:10PM

BetsyBuzz wrote:

I've just been diagnosed with early RIF post radiation. I went through chemo (4 DD A/C & 4 Taxol) and then finished 33 rad tx's in early October 2009. In early December over night I started experiencing problems and was dx with a breast infection. Started my first round of antibiotics. Now I'm on round 3 of antibotics and have just been put on a combination drug therapy of pentoxifylline ER 400 and Vit. E for RIF. My bs says I will be on this drug combo for minimum of six months. This is a shout out to anyone else out there having troubles post rads.

Lumpectomy 2009, Chemo AC/T, Rads, Tamox 3yrs, Endometrial CA 2011,TLH Dx 2/24/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2-
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Sep 7, 2020 07:26AM Eigna wrote:

Abbidoodle: Question: how were you diagnosed with fibrosis ? Did you do a mammogram? US? What are your symptoms?

Diagnosed at 43. Weakly ER+ Dx 8/20/2019, Left, 1cm, Stage IB, Grade 3, 0/2 nodes, ER+/PR-, HER2- (FISH) Surgery 10/10/2019 Lumpectomy: Left Chemotherapy 12/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/31/2020 Whole-breast: Breast
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Sep 7, 2020 08:09AM Abbidoodle wrote:

Eigna... My symptoms have been red, warm breast, quite painful, swollen and hardening of the breast, hardening of skin all over breast, the side of breast extending to my rib cage and hardening on the top of breast,going up towards my neck. If I move my arm certain ways, I get sharp pain that feels like a muscle spam and it radiates through my chest to my back. Thank goodness it eases of after a few minutes. My radiation oncologist diagnosed it as lymphedema with extensive fibrosis, due to radiation.. I've had several US. Lymphedema therapist agrees. Infection has been ruled out.

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Sep 7, 2020 12:44PM redhead403 wrote:

I did radiation over an implant and was told that no matter what, I would have some fibrosis to the skin of my breast. I started the pentoxifylline and vit E after finishing radiation in February. I added montelukast, not knowing that it would help with fibrosis. I started it in may or june for allergies. It seems I do have some fibrosis but not very much.

Surgery 4/16/2019 Lumpectomy: Left Dx 9/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 1/6/2020 Whole-breast: Breast
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Sep 7, 2020 12:56PM fifthyear wrote:

my experience as well, something like internal cording radiating from the rad site to upper chest and back, especially if i move my torso in a certain way. Stop breathing (it's that painful) for few sec and be still it goes away after few minutes, sometimes longer. Not sure what can be done about it. The gift that keeps on giving, I am happy to be alive but would like to have better QOA.

Dx 2007, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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Sep 7, 2020 01:19PM Abbidoodle wrote:

Hi fifthyear. Thank you for your response. I understand the "take your breath away" pain. I think if I had been more prepared for the effects, I wouldn't be as upset about all this pain. I was told (and even read) that the side effects were sunburn like skin, fatigue , and possible lymphedema in my arm. No mention at all of breast lymphedema or fibrosis. Trying to stay positive, but it's not easy day in and day out.

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Sep 7, 2020 11:39PM fifthyear wrote:

@Abbidoodle, yes the trying to be positive thingy is easy to say than done:-))

Dx 2007, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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Nov 26, 2020 09:19AM Beclyn20 wrote:

Hello Abbidoodle... When did your symptoms get bad? I am a little over 2 years out from radiation and your symptoms sound like mine. This is NO fun. Feel like I have hockey puck in my breast. Happy Thanksgiving!

Dx 6/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/9 nodes, ER+/PR+, HER2- (FISH) Surgery 7/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy Balloon-catheter: Breast
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Nov 26, 2020 10:57AM Abbidoodle wrote:

Happy Thanksgiving to you also. I believe the lymphedema started shortly after surgery, was diagnosed incorrectly so no therapy started. By doing nothing a year and a half it steadily has gotten worse. The biggest change was after radiation, which I believe started the hardened fibrosis. I am now being treated for sores that developed under my arm and under that breast, due to the skin being stretched so tight it is breaking. Extremely painful! I have recently saw a breast oncologist here in NC at Duke who has given me some hope that this can be helped. Let me know how things are going for you.

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Nov 26, 2020 09:50PM - edited Nov 26, 2020 09:51PM by JO-5

Ladies,

I just stumbled onto this thread. I don't post often any more and just decided to take a look at what is going on on the board.

I don't want to add to your anxiety and worry but if you get bruised looking spots, anything that looks like a small pimple that doesn't go away insist on a biopsy and tell them to look for secondary angiosarcoma.

I was dx in 04, had 36 rads plus 3 boosts. You can see my sig. at the bottom of my posts.

I had many biopsies (I think about 9) and they all came back radiation induced fibrosis and inflammation.

On my 10th year I had a small pimple looking thing on a scar. Biopsy showed secondary angiosarcoma caused by radiation. Wide excision with clear margins.That was 2014. In 2015 another pimple looking thing on the scar. I had a mastectomy with a lat flap. I am 5 years and 3 months out and so far so good.

I don't want to scare you but drs don't always think angio because only about 1/2 of 1% ever get it. Mammograms rarely show it. A punch biopsy is the best way to dx it. Surgery is the best treatment.

If you google it ..... please know most of the info is old. The pictures they show are horrid, usually a very huge bruised looking breast.

It presented on me as a small pimple looking place that did not go away.

In 40 yrs of practice I was only the 3rd patient my dr had treated for sec angio and he said mine was the smallest he had ever seen.....so watch yourselves closely and any bruise spots, raised brownish or red spots I would insist on a biopsy and TELL THEM TO TEST for angio!

If I ever get cancer in the other breast I will have another mastectomy ... no question or discussion about it.

Just please know fibrosis is not rare and it hurts and is miserable but is not cancer.

But check yourself often. Drs seldom mention sec angio because of how rare it is and many don't know much about it.

JO-5

IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
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Nov 29, 2020 02:48PM Beclyn20 wrote:

Thanks Jo! Your journey sounds horrible. I think I have scar tissue and fibrosis and the thought of having it biopsied makes me shudder! Can I ask you when it started to get bad? I am about 2 years out and noticed the last month that it is worse. I am on verge of menopause so thinking that might have something to do with it. No fun. Thanks for sharing your story Jo!

Dx 6/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/9 nodes, ER+/PR+, HER2- (FISH) Surgery 7/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy Balloon-catheter: Breast
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Nov 29, 2020 03:41PM - edited Nov 29, 2020 03:46PM by JO-5

Beclyn,

I was told that my radiated breast would eventually shrink and be smaller than the other breast. It never did shrink nor did the swelling go down much at all. I used to joke that I was the only woman that had a lumpectomy (they called it partial mastectomy) and had to wear a prosthesis on the OTHER side because my cancer breast was so swollen.

My scar was on the top left of my right breast and was rather large. My breast was tender right from the start and fibrosis around the scar mostly. Every biopsy left more scar tissue and fibrosis.

The thing that always makes me wonder is...in the Fall of 05 I got a bad bruise on that breast right on the scar. We were out shopping and I needed to go to the bathroom. On my way in a lady came out and must have hit the door very hard because it hit me with great force right on that scar. I almost fainted it hurt so badly. The next day it was black and blue. The black and blue lasted for weeks. My dr finally biopsied it because it was not going away. It was inflammation, and fibrosis from radiation and this time they added....from lymphedema, because my breast was swollen even more. Finally after a couple of months the bruises went away.....but never completely. My dr's nurse told me it may never go away because of the radiation. She was right.

My GYN told me that he had a patient years before that got a bad bump on her radiated breast and eventually had to have a mastectomy because she got another cancer in that breast, but he didn't know if it was because of the trauma to the breast.

The angio (please remember there is a difference between secondary and primary angio) did not show up until 2014 and it was right on that scar. In 2015 also on the scar....plus it was also exactly where the boosts were done.

I may always wonder if that bump on my breast from the door caused the angio or if it was because of the boosts or both together.

I know there are tests now that will show how sensitive a person is to radiation. There were no such test back then. I would think everyone should be getting that test and not just do the standard radiation treatments on everyone. I know that some ladies do not get the boosts anymore but I don't know how they decide that.

Again, be aware that my situation is so very rare, only 1/2 of 1% ever get secondary angio.

JO-5



IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
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Dec 2, 2020 11:42AM Beclyn20 wrote:

Hi Jo. I can't imagine anyone knocking into my breast. Some days really tender. My lump is at upper right where the tumor was removed and radiated. Seems like it is pressing into my chest muscle which is making it worse. My scar was on nipple line. Not sure if I have issue there because all the problems coming from radiated area. I really regret radiation but too late now. I am hoping that some day it will just stop reminding me it is there. My breast does not appear to be shrinking at this point. Just feels swollen and painful. Thanks for sharing.

Dx 6/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/9 nodes, ER+/PR+, HER2- (FISH) Surgery 7/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy Balloon-catheter: Breast

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