Radiation after bilateral mastectomy

trigeek
trigeek Member Posts: 916
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi everyone,

I had a bilateral mastectomy last week. ILC 2.5 cm, there were several other ILC modules in the same breast. The other breast is clear. Sentinel Node Biopsy showed 2 out of 6 testing positive, .3 cm margin clear. I think this lands me in the IIb land.

The surgeon thinks that she could remove 5-6 more lymph nodes and I might be good to go, however due to my age - 44 -  the radiologist might want to do radiation in addition to chemo.

I will be meeting with 2 oncologists next week to see what their suggestions would be.

Anyone went through something similar or has something to share ? Any heads up .. or questions I should be asking ?

Thanks !  

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  • trigeek
    trigeek Member Posts: 916
    edited September 2007

    of course chemo is a given in both options... trying to find out about rads .

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited September 2007

    trigeek, I also had ILC but 5.1cm and 23 nodes positive with some rupture in the axilla so I definitely needed the radiation post bilateral mastectomy and chemo. One thing that may come into play in your case is the .3 cm clear margins.  I believe most surgeons/oncs hope to get at least a 1.0 cm clear margin to feel comfortable with not giving rads.  So this is something you should discuss as to whether or not your margins are an indicator for radiation.

    If it helps any, I had 3 field radiation which means they radiated my left chest wall, my entire axilla and my supraclavicular area (collarbone) and my skin has completely healed with no major complications from the rads.  I had more difficulty healing from the scar tissue and cording created by a complete axillary dissection than from radiation effects. I also just had a clear CT scan at my 18 month mark, so am feeling pretty good right now about my treatment choices considering my heavy nodal involvement.

    Hope you get a clearer picture from your doctors as to your best treatment options.  Sometimes we just have to make our decisions based on our best instincts and then not look back.

    Best wishes,

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited September 2007

    i also had rads after a single mast .... very fair skinned (dad says ghosts have more color than me) but amazingly the skin started to heal within a week of finishing rads .... helpful hint: wear old blouse or t-shirt and bra when going to rads (my rad onc recommended no bra due to mast scar going almost to my back) as the rad techs love their magic markers and it gets all over your clothes

     i had over 7 cm (that is what they took out at lumpectomy) then took out more during mast ... so stage 3A ... now 3 years and counting

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  • LizM
    LizM Member Posts: 963
    edited September 2007

    I will share my story as I am also stage IIb and had bi-lateral with tissue expanders and radiation.  My tumor was 2.1 cm ILC and IDC with 1 pos node out of 8 removed.  My breast surgeon said I did not need radiation but I had read some studies that indicated a benefit to those with 1 to 3 pos nodes and premenopausal.  I was 49 and premenopausal at diagnosis, chemo put me in chemopause and then I had an ooph and am now on an AI.  Anyway, when I consulted with my rads oncologist he told me about the studies and said I was in a gray area and it was my call.  I opted for the radiation and have never regretted it as it gives me peace of mind.  It is my understanding that the radiation reduced my chance of a local regional recurrence from 15% to 5%.  There is still a debate whether it gives you a benefit for overall survival but my rads oncologist believes it may.  I ended up having rads to the chest wall, armpit and supraclavical area. 

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  • LizM
    LizM Member Posts: 963
    edited September 2007

    Also, my tumor was 2 mm from chest wall and close to skin which also tipped me in favor of rads in addition to the one pos node. 

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  • trigeek
    trigeek Member Posts: 916
    edited September 2007

    Thanks Liz ! seems like we are on the same boat. We'll see what the docs have to say about it.

    Chemopause ( lol ! Laughing)

    "I had an ooph and am now on an AI" ??

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  • LizM
    LizM Member Posts: 963
    edited September 2007

    yes chemopause.  My period stopped after my 2d chemo treatment which is very common.  After I finished radiation I opted to have my ovaries removed so that I could take an aromatase inhibitor instead of Tamoxifen.  You have to be postmenopausal to take an AI and my oncologist told me my period could come back up to 2 yrs after chemo.  He recommended Tamoxifen but I wanted my ovaries removed instead so I would be sure my periods wouldn't come back and so I could take an aromatase inhibitor which has been shown to be more effective than Tamoxifen.

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  • Lynn12
    Lynn12 Member Posts: 1,008
    edited September 2007

    I am also stage IIb, no nodes, but 7.5cm tumor with only a 1mm margin from mastectomy. I had 30 tx of rads and am glad I did it.  The last 2 weeks of tx wasn't easy, but I did heal pretty fast when it was done.

    Best of luck!

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  • figsgirls
    figsgirls Member Posts: 253
    edited September 2007

    LizM, where did you read the studies about the benefit of rads? I had a bilateral - 4cm ILC with LCISW in left breast with micromets in the sn. Clear margins. Nothing in right breast. I finished A/C and start Taxol x12 tomorrow. Wasn't supposed to have rads but I'd sure be interested in what you read so I can talk to my doctors about it. I'm 42. I'm also interested in what you said about aromatase inhibitors being more effective than Tamoxifen. My onc said if my period comes back after chemo, I should have my ovaries removed, which I will do.

    Donna

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008

    A. Here are 3 classic, often cited papers on post mastectomy radiation therapy (PMRT):



    1. Overgaard M, Hansen PS, Overgaard J, et al: Postoperative radiotherapy in high-risk premenopausal women with breast cancer who receive adjuvant chemotherapy. N Engl J Med 337: 949-955, 1997[Abstract/Free Full Text]



    2. Ragaz J, Jackson SM, Le N, et al: Adjuvant radiotherapy and chemotherapy in node-positive premenopausal women with breast cancer. N Engl J Med 337: 956-962, 1997[Abstract/Free Full Text]



    3. Whelan TJ, Julian J, Wright J, et al: Does locoregional radiation therapy improve survival in breast cancer? A meta-analysis. J Clin Oncol 18: 1220-1229, 2000[Abstract/Free Full Text]



    B. Here is an excellent 2005 Review of the Literature on PMRT:



    REVIEW ARTICLE: The Use of Radiotherapy After Mastectomy: A Review of the Literature

    Lori J. Pierce

    http://jco.ascopubs.org/cgi/content/full/23/8/1706



    C. Here is the 2001 ASCO (American Society of Clinical Oncology) Position Paper on PMRT with current citations (a very long article to read but recent (2004-07) citations at the end of the paper may act to further reinforce the 2001 written guidelines):



    ASCO SPECIAL ARTICLES



    Postmastectomy Radiotherapy: Clinical Practice Guidelines of the American Society of Clinical Oncology*

    http://jco.ascopubs.org/cgi/content/full/19/5/1539





    PLEASE NOTE: the understanding and consideration of Post Mastectomy Radiation Therapy merits in-depth discussions with your oncologist, surgeon and radiation oncologist(s) as breast cancer biology, risk and prognosis prediction (genes and proteins), and treatment (chemotherapy and hormone therapy) has rapidly evolved over the last decade and continues to do so. Please push yourself to fully understand the risks to radiation as well as the possible benefits. This information is on post mastectomy radiation therapy, and does not apply to lumpectomy surgery where the benefit of radiation to reduce recurrence has clearly been shown, and hence allows lumpectomy and radiation to equal mastectomy in overall survival.



    I hope this is of value to you,

    Tender





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  • figsgirls
    figsgirls Member Posts: 253
    edited September 2007

    Tender, Thanks! This will surely be helpful. I agree that I'd need to have an in-depth discussion with my doctors, all of whom I trust and am extremely pleased with. And my other concern about radiation was whether the risk outweights the benefit, especially since it would be the left breast and therefore closest to the heart.

     Thanks again.

    Donna

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