Radiation complicating reconstruction

4pamsjrny
4pamsjrny Member Posts: 8
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi, My name is Pam.  I was diagnosed in August with lobular carcinoma, stage 2, clean nodes but my lump was 5cm.  I had a double mastectomy and have healed quite well.  Found out yesterday that I will need chemo (which I expected) and I will also need radiation (shocked!) because the lump was so large.  I have heard that radiation causes problems for breast reconstruction, like thin skin.  I would love to hear from you bc sisters out there who have had radiation and reconstruction and are willing to tell me how things went for you.  Is there any lotions, vitamin E or anything I can do to help stop the thinning of skin.  I appreciate your feedback and really happy this forum is available.  Take care ladies!!!

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  • gale1525
    gale1525 Member Posts: 232
    edited October 2010

    It will depend what kind of reconstruction you do. If you get expanders they need to be in and expanded before  rads. There is still a high % of people that with have complications because of the rads. I used vitamin E and expensive lotions and I still got burned, CC and thin skin (I had expanders put in at the time of BMX and later implants). If you do a DIEP flap you should be OK with rads, although I have heard of some people that have healing problems because of the rads but they usually are able to heal.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2010

    Hi ~ Glad to hear your bi-lat mast is behind you.  I had Diep flap reconstruction (same time as my mast), partly because radiation was recommended for me, and my plastic surgeon at UCLA said expanders and radiation don't mix.  I had Stage II (for symmetry) revisions several months after my RT without a problem, but I learned that it's important for your radiation oncologist and plastic surgeon to communicate about the order in which they prefer your treatment steps to be done.  Some plastic surgeons are not comfortable working on radiated skin.  This is one reason it's good to be at a comprehensive cancer center where the rad onc and PS work together all the time, rather than trying to work with a plastic surgeon who isn't part of a multidisciplinary team. 

    Do you know what kind of reconstruction you want to have?     Deanna

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  • 4pamsjrny
    4pamsjrny Member Posts: 8
    edited October 2010

    Hi and thanks for your reply!  I am beginning to realize that my medical group does not collaborate as a team with each patients situation.  My hope and intention was to have expanders/implants...not realizing that I would need radiation (surgeon didn't think so either). So now it's too late to have put the expanders in during the MX.  I am planning to get the oncologist to give me a consultation referral (HMO) to both the radiologist and the plastic surgeon.  I want more information before I make my decision on course of treatment etc.  If I have to pay for those consultations I will, but not without grumbling lol. My lump was 5cm so this is what has pushed my oncologist to be aggressive (16 wks of chemo starts 10/14) and I get that, however the lump was not on my  chest wall & nodes were clean...so I'm not convinced that radiation increases my long-term survival enough.  I wish I could start this over and have had the opportunity to discuss what type of reconstruction I wanted.  This is confusing and frustrating....not to mention scary!

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  • 4pamsjrny
    4pamsjrny Member Posts: 8
    edited October 2010

    Thank you Deanna...you are absolutely right about the 'team approach' and I am disappointed that my medical group doesn't do that.  However, I'm going to get pushy now and consult with the radiologist and PS.  I had hoped to have expanders/implants but feel that is not going to happen now but I haven't given up on the idea.  So I guess my next option would be Diep flap, I am starting my research on this procedure as we speak.  Do you mind telling me more about that procedure and how it went for you?

    P.S. I love the American Indian Proverb!!

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited October 2010

    4pamsjrny -

    ILC tumors have "fingers" which causes them to be thinner and stretch out in multiple directions unlike IDC which is more compact.  As a result, with the larger tumors, there is concern about which lymph nodes were used for drainage from the tumor.  And the fingers touch more breast tissue than a compact tumor.  So that is why radiation is often recommended even though the axillary nodes are clear.

    I'm sorry that your reconstruction plans aren't working the way you hoped.  I was told from the get-go that reconstruction was not a good idea with the BMX from multiple docs.  I'm too thin for anything other than implants.  I was told that a year after the BMX I could go back for implants. But I'm 52 and I've found the forms to be comfortable and I really, really don't want any more surgeries. Good luck!

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  • 4pamsjrny
    4pamsjrny Member Posts: 8
    edited October 2010

    Thanks for the info, now I understand 'why'.  I start chemo today, nervous but ready to step up the fight!  I hope you continue to do well.  I have requested a referral to both the Radiologist and the PS so I will have a better understanding of my options, then I can make an informed decision.

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  • susieQ610
    susieQ610 Member Posts: 30
    edited October 2010

    Hi 4pamsjrny

    I was thankful to stumble across your post since your situation seems very similar to mine.

    Thankfully I am almost through chemo - TC x 4 and have my last round this friday. I had a rt mx in July this year after unclear margins from lumpectomy in June. I too was very disappointed to hear that I would need radiation since I assumed that I could proceed straight to reconstruction after chemo. My surgeon wouldn't do TEs at time of mx since he felt I should finish chemo first. The whole thing has been very confusing but after a steep learning curve  I now feel more empowered to make informed choices rather than just accept treatment without questioning the rationale.

    The first rads onc I saw said I had a 25% chance of local recurrence simply because of the size of the tumour. My med onco says 20%. I have requested a second opinion from another rads onc next week and also a second opinion from another PS. I agree we have to make informed decisions since the long term consequences are ours to live with. I wish I disn't have to do rads but need more info before I agree.

    Sending warm wishes and good luck with your chemo. I found that it was easier to make decisions on those days when I felt well. The other days I just gave myself permission to wait until I did feel better. Hope this makes sense.

    Kindest regards, susie

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  • 4pamsjrny
    4pamsjrny Member Posts: 8
    edited October 2010

    Hi Susie..thanks for your reply. Ours situations are quite similar.  I had 2nd chemo Thursday, Cytoxan and 'Red Devil"...icky but not awful and I'm thankful I'm tolerating well.  My oncologist is processing my referral to rads onc and also getting one for PS. So I'm on the path to getting more information.  I will keep you posted. 

    Warm wishes...Pam

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  • susieQ610
    susieQ610 Member Posts: 30
    edited October 2010

    Hi 4pamsjrny

    Well done on tolerating the chemo so far. Sending you warm thoughts and best wishes. I finished my last chemo last week and am feeling better and stronger as each day passes. Hang in there, this too will pass.

    All the best, Susie

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