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Breast pain & fibrosis 6.5 years later!!

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sdianel
sdianel Member Posts: 22

UPDATE!! I just found this online that says COVID Vaccine can cause Radiation Recall Phenomenon that describes perfectly what I have. I am making an appointment with an Oncology Surgeon since I can go back to my old clinic since I changed insurance. Please read this and I will also post it separately!! https://link.springer.com/article/10.1007/s13691-021-00528-5

I had lumpectomy & accelerated radiation in 2017. Severe side effects from radiation. Desquamation where the skin peeled off my breast causing severe pain lasted for 6 weeks. One year later several of my ribs broke but I didn't know it. The Radiology Oncologist didn't order an x-ray but an X-ray years later confirmed it. I learned that there are more risks for women who have large breasts, are diabetic, have connective tissue disorders and are older. The Radiology Oncologist lied to me and said they had never see that. I found info online that said tens of thousands of women have it after radiation, especially if they are high risk. I also had fibrosis & lymphedema which I lived with until the last 6 months. I now have shooting pain in my breast off and on and purple bruise looking places and the fibrosis seems to be getting worse. My breast is sore & red and warm to the touch. I did take Pentoxifylline & Vitamin E for awhile in 2018 but didn't notice any benefit. I'm thinking about going to a different doctor who is also a breast surgeon to see if she can recommend anything. I now am the primary caregiver for my husband who has Alzheimer's-Posterior Cortical Atrophy so having an elective mastectomy isn't possible. Has anyone found anything that helps the fibrosis & soreness??

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  • purplecat
    purplecat Member Posts: 226
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    I have some fibrosis, with skin discoloration and some pain, but the redness and heat you describe doesn’t sound right. It sounds more like a skin infection .Can you get to an urgent care to have it looked at?

  • sdianel
    sdianel Member Posts: 22
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    purplecat: Thanks for responding I have had redness & a hot feeling off and on since radiation and they checked and said no infection and that it's "normal" for some people. I'm one of the "some" I guess. I'm going to try a compression bra to see if it helps the lymphedema. I got a referral to a different Oncologist/Surgeon and may go have her look at it. Just difficult to get away to go.

  • purplecat
    purplecat Member Posts: 226
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    Oh, I’m glad I misunderstood the situation and it’s not likely to be an infection! didn’t know a feeling of heat could be normal. I hope you get some good answers and relief from a new practitioner soon.

  • ratherbesailing
    ratherbesailing Member Posts: 118
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    So sorry you're going through this for so many years. It may be true that redness and warmth are known side effects. But my radiation oncologist missed a cellulitis infection that was only caught when I saw a dermatologist. Lymphedema increases the risk of infection and all women who have had radiation also need to watch out for skin cancer in the radiated area. I don't mean to be an alarmist - you're probably fine! But maybe seeing a dermatologist might give you peace of mind and also offer topical treatments to help.

    Regarding the fibrosis, in my experience the only thing that helps, years later, is stretching. Perhaps a few sessions with a physical therapist would help?

    Hope you get some answers.

  • hopeful2020
    hopeful2020 Member Posts: 79
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    Hello - could you please let me know how you determine fibrosis? What symptoms did you have? Does it go away? How does it show up on imaging?

  • sarahmaude
    sarahmaude Member Posts: 338
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    @hopeful2020 I have had some late stage radiation effects/lymphatic issues recently. Interested here the possible association with COVID19. My issues arose a few weeks after my most recent vaccine.

    I did find out that lymphedema (LE) and fibrosis aren't visible on ultrasound or mammogram. Maybe it would show on an MRI. Not sure. I was told by the breast imaging tech that both of these conditions are "clinical" diagnoses. I'm getting occupational therapy now for the LE and fibrosis. The OT can feel the fibrosis and seems to be able to distinguish between that and the bit of scar tissue I have from my sentinel node removal.

    Probably not much help, but that's what I know.🤷‍♀️

  • hopeful2020
    hopeful2020 Member Posts: 79
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    @sarahmaude - thanks for responding. Could you please provide more details on what kind of late stage radiation effects are you seeing? What made you think of the connection to COVID?

  • sarahmaude
    sarahmaude Member Posts: 338
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    Two weeks after my booster, I had a mysterious rash on my treated breast that turned out to be nothing of concern and went away. Then, in January, I noticed my affected breast had become larger, was sore, and felt heavy. I have no idea whether my COVID booster had anything to do with it, or if there was any association between the rash and what has turned out to be lymphedema and some fibrosis. I do know that the COVID infection I did get at the end of November was extremely mild, so I expect the vaccine was helpful there.

    That booster was my third, and I’ve had no issues with any of the others. I’m not convinced there are actual radiation recall risks from vaccines, and for now, I personally will still prefer that unknown risk to a severe COVID case. I’m very pro-vaccine. But I’m always interested in developing science . And, continue to wait for definitive evidence before changing my mind. And will check in with my doctors for their assessment on emerging changes in advice.