Radiation recall after 4 1/2 years? Worried about IBC.

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rn4babies
rn4babies Member Posts: 409
edited May 2019 in Not Diagnosed But Worried

I am a 2 time breast cancer survivor. The first time was on the left breast and I had surgery and radiation. I finished the radiation 4 1/2 years ago. Everything has been fine until now. About 2 months ago I had swelling, redness, pain and the "orange peel" look in that breast for about a week. It eventually went away. Now it has come back. The breast is very achy and tingly with a mild burning sensation. There has been no change in my bras, detergent, or anything. So I finally called my breast surgeon and wastold he thinks it's "radiation recall" without seeing it. I can't get an appointment for several weeks. Has anyone heard of this happening after almost 5 years? I am a little concerned it could be IBC

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited March 2016

    I had IBC and it never went away, but just got worse day by day. However, were I you, I'd see a different breast surgeon to eliminate IBC as a possibility. I don't know anything about radiation recall, but someone else might come along who does. My best wishes to you.

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  • rn4babies
    rn4babies Member Posts: 409
    edited March 2016

    Thank you for your quick response. Unfortunately, he's the only one I can see with my insurance. I live in a small town and he's the only breast surgeon.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2016

    Did the office offer to place you on a waiting list? Is there a nurse practitioner in the practice who could see you?

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  • 70charger
    70charger Member Posts: 963
    edited March 2016

    I have RRD. Radiation Recall Dermatitis. .Got it a yr after treatment. I got mine by going to Mexico, the heat & sun. Even though I always sat in the shade. It is very rare I had 2 biopsies done to be sure. You can get it even 25 yrs later. I now have to wear special shirts that are 100% uv blocking etc. They are super expensive. My rash is worse if it is hot out, or if I have too many clothes on. My rash is still there, it's now been 15 months. Get it checked to be sure.

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  • Jelson
    Jelson Member Posts: 1,535
    edited March 2016

    I had it - perhaps 3 years after treatment - I called the radiation oncologist who had treated me and was still following me, he saw me and diagnosed it immediately. Might you try the radiation oncologist who treated you?

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  • rn4babies
    rn4babies Member Posts: 409
    edited March 2016

    Hopeful82014.....no I feel like he's blowing me off without seeing me. I've had no complaints nor seen him since my last surgery in 2012, so it's not as it I've been an annoyance to him or his office.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2016

    You put me in the sun, even with block, my field of radiation turns red 6 years later.

    Still a doctor should look at you!

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  • rn4babies
    rn4babies Member Posts: 409
    edited March 2016

    I've had no sun exposure. I just can't wrap my head around him making a diagnosis without looking at it! Thanks for responding.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2016
    I don't blame you for feeling fed up and brushed off.I do think that Jelson's suggestion of talking with your RO (or MO) is worth considering.

    My MO told me that no matter what the situation, if my BS couldn't see me regarding a concern within 24 hours, to call her office and they would get the ball rolling with any imaging, physical exams, etc.

    Good luck - I know this must be awful for you and is exacerbated be having limited choices.
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  • smackint
    smackint Member Posts: 2
    edited May 2016

    I am so glad I read your post. I have the same thing. Only my lumpectomy was almost 8 years ago. What did you find out. My itchy rash and soreness started last October 2015. Punch biopsy said spongitic dermatitis or bug bite. Yeah right only on the left side? MRI, tomo, and ultrasound shows nothing. Let me know what you found out.

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  • 70charger
    70charger Member Posts: 963
    edited May 2016

    Mowed the lawn yesterday, kept covered up. But never thought to cover my hands. Suffering terrible RRD on them today. Feeling kinda devastated . I luv being outside as I HATE winter. I luv gardening. Luv going to Mexico in the winter. I have to somehow figure out how to still enjoy these but keep my health. This so sucks.

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  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited July 2016

    Hi 70Charger -

    I have a history of radiation recall as well. it was especially more active during radiation therapy. Overnight it reared it's ugly head again. Yesterday I went swimming and forgot to apply the sunscreen. I wasted no time in applying some Clobestol cream - the only thing that works for me. As I had very little left, I had to get in contact with the nurse practitioner in the oncology department. She wrote me another prescription with out hesitation. I like it when doctors etc. listen to us as we really do know our own bodies. What little bit I had earlier this morning and applied made a huge difference, so it is obvious that I made the right decision.

    MarieBernice6234

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  • lkuks
    lkuks Member Posts: 1
    edited May 2019

    Hi, I am going through a similar situation I am a breast cancer survivor since 2011. Early April my breast had a rash all over, almost like a very bad sunburn. I called my Dr and they sent me for a diag mamo and us thank GOD they ruled out IBC. The rash went away in about a week after using cortisone cream. As I am writing the rash is back about 4 days now. I did some research to try to figure out what this can be, now that my mind is free from IBC scare. I found Radiation recall, my symptoms are exactly as they say. It says its rare but It happens and it can happen years later and I'm at 7 years. It says nothing can be done but its very annoying. I will discuss this with my oncologist on my next appointment. If anyone else is going through this advice?

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  • KBeee
    KBeee Member Posts: 5,109
    edited May 2019

    Don't hesitate to see a dermatologist if MO and BS are not helpful.

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