Need some input

Momma · January 2011

Hi. I've been lingering in these chat rooms for a few months and have just joined. Here's my situation. My 27 yr old daughter was diagnosed with BC a few months ago. It's is not in the family that we know of - we are in the process of genetic testing. She's had a lumpectomy with no lymph node involvement and was diagnosed at stage 1 but grade 3 with clear margins. Because of her young age chemo (starting in two weeks) and radiation have been scheduled. We have accepted this and are dealing with it quiet well. The other day she got a phone call from the radiologist stating that her case had been the topic of a conference and the doctors are nervous of the long-term (20+ years) effect of radiation. They say it can cause cancer in other locations long-term, not to mention the risk of problems with the heart and lungs and bones. So now they are recommending a masectomy a few months after chemo is complete and not doing any radiation. We are upset and confused. Has this happened to anyone? What are your thoughts?

heathermcd · January 2011

Well, thats scary. I am 27 and getting ready to start radiation next week. I had a mastectomy and my onc (and breast team) still recommended that I get radiation. I have heard that there can be issues with the heart and lung, but my rad onc has assured me that she will be able to miss my heart and that only a small part of my lung will be effected - and its nothing I will notice. I think there is always a risk that radiation can cause another cancer...but honestly, i'm more worried about getting rid of what I have than getting another cancer altogether.

I think with your daughter being a stage 1 with no lymph nodes involved she would probably be safe not doing the radiation with a mastectomy. I had a large tumor with lymph node involvement - so with my age i'm going to hit this with everything I can!

Good luck to you and your daughter! Please tell her she's in my thoughts - its so hard to go through this when we are just really begining our lives!

Momma · January 2011

Heathermcd,

Thanks for your input. Good luck with everything. My heart goes out to everyone dealing with this, especially those so young. I agree, hit this with everything you can and that's what her doctors are doing.

Good luck to you. You are so brave.

MinAZ · January 2011

I have met two women in my area who had lumpectomies and then radiation - the standard treatment pretty much. Now 7 or 8 years later both of them have developed a very rare cancer in their breasts - in the skin I believe. They are not having an easy time with treatment for it either. I believe it is called adenocarcinoma and it is related to the radiation they had - very rare, but scary to consider. I'd ask the doctors for their thoughts on this. Makes me glad that I had a mastectomy....

mks16 · January 2011

Momma, are you upset about mastectomy or the change in plans and no radiation?

My sister was 32 when diagnosed last year, she too had mastectomy and since her nodes were clear, she received no radiation nor did anyone mention that possibility to her. She is however, receiving a whole package: chemo, hormone therapy (Zoladex and Tamoxifen) and Herceptin.

She is now considering doing a prophylactic mastectomy on her right breast, to make reconstruction more successful visually, as well as to prevent this from coming back in her other breast. Based on her decision, I opted for bilateral when I was diagnosed (8 months later). We never had any breast cancer history in our family before this.

Good luck to your daughter and your family, I wish my sister and I still had our dear Mom with us, it would make everything so much easier to handle.

All the best

crazy4carrots · January 2011

momma, there is an alternative called mammosite radiation. Check out this website:

http://www.mammosite.com/breast-lumpectomy/how-it-works.cfm

I don't know where your daughter is being treated, but I do believe it is now available in Canada at some facilities (perhaps Princess Margaret and Sunnybrook Hospitals in Toronto, and maybe others). I can tell you that my cousin-in-law had this therapy in Wisconsin 4 years ago and it seems to have been successful.

Best wishes, Linda

mks16 · January 2011

I forgot to mention, after my mastectomy it turned out that one of my sentinel nodes contained microcalcifications. The surgeon recommended I get further node disection and remove another 10 nodes, and if they come back clear I will hopefully avoid radiation.

I see that its not common practice to go for nodes after only microcalcifications are found, but I wonder if my age (37) had something to do with her recommendation.

Momma · January 2011

mks16, I guess I'm more frustrated. She had to choose between a lumpectomy and a mastectomy, which was an angonizing decision and now she's wishing she had the mastectomy and is frustrated that this issue was not raised a few months ago. I'm just thrilled that there is no node involvement and clear margins. I'm upset because she's upset. But she is strong and we will all get through this together and we are dealing with prevention at this point.

Lindasa, thanks for that website. It looks very interesting.

Need some input

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