Radiation with expanders - long term effects

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Chloe70
Chloe70 Member Posts: 2
edited November 2016 in Radiation Therapy - Before, During, and After

Hi everyone,

I was diagnosed last November with a 2.1 cm tumor. I had a sentinel node procedure, the node was positive. Consequently 6 chemo's (3 FEC and 3 Taxotere). Then 2 lumpectomies, both with bad tumor free margins.

I was advised radiotherapy with boost (23 times). Essentially for aesthetic reasons I opted for a skin and nipple spearing mastectomy, and removal of some lower glands, which fortunately were clean.

Ironically, it turned out I made the right choice from a medical point of view: two more small tumors were found, as well as 2,5 cm DCIS.

The scar from the last lumpectomy hadn't healed well, and was cut out separately during the operation. Tumor free margin 1 mm, but with doubt at skin side.

The team of doctors was not unanimous in their advice on radiation therapy of the breast.

Today I talked to the radiation specialist. She told me the chance of a local recurrence is 10%. As I am also on Tamoxifen, the chance could be even lower. Radiation of the breast with a filled tissue expander (16 times), would reduce that risk to 3 to 5%.

I don't know what to do. Radiation will effect the result of the reconstruction negatively, even though they will do fat grafting during the exchange operation. Furthermore, I am so tired of all the treatments, I want to go on with my life!! But refusing a treatment is scary, too...

Does anyone have experience with the long term effects of radiation on a breast with tissue expander?

Thank you!

Chloe



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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2016

    Dear Chloe, Welcome to the BCO community. We are glad that you reached out here to our members. We hear you about your being tired and ready to move forward and the stress of making more decisions. We know that many of our members can relate to such experiences. You may want to review the information on our main site about Radiation Therapy and When it is appropriate. You also may want to browse the topics in the Breast Reconstruction Forum as you may find some similar questions there or decide to post your question in that forum. Let us know if you need help navigating. Some times it takes a little time to get a response and finding the right place to post your concerns. Keep us posted and stay connected here. The Mods

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2016

    Radiation with a tissue expander is quite common. You chat with your PS about how it'll affect reconstruction. My PS had much more information to me than my RO did. Like all treatments, radiation has huge benefits, but there are certainly risks as well, so you need to decide what level of risk is acceptable to you. You might consider adding your personal information on tumor size and such; it makes it easier for others to comment more specifically. These are hard decisions. It would be so much easier if we just had a crystal ball. One thing to consider, especially with questionable margins, is that there is no routine imaging after mastectomy. You tend to have to either have a palpable lump before they'll order something, or fight the doctors really hard to do any type of ultrasound, etc. I know if I had to make the decision, with a positive node and questionable margins, I would opt for radiation. But that is me; I have 3 kids at home so I like to throw the kitchen sink at it. That does not mean it is the right decision for you. A second opinion might also help you decide. Best wishes.

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  • meg2016
    meg2016 Member Posts: 287
    edited July 2016

    I am going into surgery knowing I will have tissue expanders placed and then radiation. My plastic surgeon does this quite commonly. I don't have as much choice on radiation due to my situation (but I think if I did I would likely do it.) Partly because my mother had breast cancer also years ago, she had only surgery and radiation and has had no recurrence, 20 years out.

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  • WenchLori
    WenchLori Member Posts: 1,558
    edited July 2016

    At the start of my journey with BC I was told a few times that I didn't need chemo nor radiation. Now that my surgery with TEs is done I will be doing chemo and radiation. I talked with my PS about what to expect now that radiation is in the works. The first thing he did was apologize that I was told what I was told before the final path report came in. He then said I have a very long year ahead of me but not to worry we will continue with my fills as planned. Having radiation with TEs is very common and some TEs have a tendency to want to shrink or get tough but we can take some saline out if need be. Instead of having my exchange in 2 months it'll be a lot longer. I'm not happy about it but I'll be healthier with it.

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  • Chloe70
    Chloe70 Member Posts: 2
    edited August 2016

    Hi everyone,

    Thanks for the replies, and it seems most women in my situation choose radiation...

    In my hospital they only do radiation on expanders since 2 years, and they don't have information on the long term effects ( I mean, after the exchange operation). Has anyone experience with this procedure done more than 2 years ago? That would be helpful for me...


    Thanks again!


    Chloe

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  • Alirena
    Alirena Member Posts: 82
    edited August 2016

    Chloe70, I had radiation with tissue expanders 5 years ago. I had the exchange to permanent implants 6 months later. No problems so far; radiated side is still soft.

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  • WenchLori
    WenchLori Member Posts: 1,558
    edited August 2016

    Alirena, thank you, that makes me and I'm sure a few others feel a lot better! Hopefully we will all have the same results!

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  • phbr66
    phbr66 Member Posts: 14
    edited November 2016

    My story is much the same as yours except that I am triple negative. I was just told by PS that he doesn't do exchange for 12 months after radiation is finished. I am in shock! Everything I had read said 6 months. I have to live with this expander for over 1 1/2 years! I start radiation at the end of Dec. or beginning of Jan. This is such a roller coaster ride! Every time I think I "know" what's going on, it changes!

    Anybody out there live with an expander in this long? How did radiation affect the outcome? I would appreciate any information! Take care all!

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  • BonnieMen
    BonnieMen Member Posts: 13
    edited November 2016

    I had expanders put in during my mastectomy surgery, which was followed by chemo and radiation. I had fills done during chemo but not during radiation so that my shape wouldn't change during that 6 weeks. I had a bit of Lymphedema (chest wall) after surgery so I was going to PT until my I had open wounds from the radiation. Once everything healed up and I recovered from the radiation, I moved, changed jobs, lost insurance, blah, blah. So I still have my expanders in (since 2/2014). I got insurance the beginning of 2016, new MO, sent me to new PT since I said I had this issue with what I thought was lymphedema. (I have one hard Barbie boob and one sad soft boob waiting for implants). Turns out, it's scar tissue, not the lymphedema I had assumed. I went to a PS who wants to start with Fat Grafting, followed by implants in 3 months. At this point, I don't care about the implants but the scar tissue is uncomfortable and I'd like it gone. If the surgeon thinks fat grafting will soften that, then I'm going for it. Scheduled for Dec. 27 :-)

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  • phbr66
    phbr66 Member Posts: 14
    edited November 2016

    Thank you for posting! I am already sick of my hard "barbie" boob! Sounds like you have been through a lot! I pray the fat grafting is the answer for you!!

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