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Nov 24, 2007 12:22pm, edited Nov 24, 2007 12:56pm
I read all your posts with lots of interest, as I too have sadly just joined "the club" dx with DCIS, 1 cm, stage 0, grade 3 ER+/PR+ o nodes by MRI, have had lumpectomy with clear margins 11/7/07 but not SNB. This was followed previously with close survelience for 2 yrs following FNB.
So, I was presented with ALL the same info as you all; DCIS is not invasive, >3% of women actually die from DCIS. Treatment options are: lumpectomy + radiation + tamoxifen for 5 yrs, or single/double mastectomy. I too am leaning toward bilat mastectomy.
I am 52, a nurse practitioner, so am a bit more savy in terms of medical options than some, and when I asked my oncologist if my chances of recurrance with stage 0 grade 3 were higher than the oft quoted 20%, he said yes, because my DCIS had microcalcs with areas of necrosis. It was not referred to in path report as "comedo" but necrosis nontheless. However, no numbers for how much higher.
He went on to say he feels like women in our shoes have the hardest/most stressful time because we have so many choices, and I agree.
In my particular case, my husband and I are planning to literally sail around the world next year, and I too want this behind me and need closure. I am extremely small breasted the idea of losing my breasts while daunting does not affect me as I think it might some others. I am focusing on the possibility of knowing I am cancer free (99%) and having some cleavage for the first time in my life!
Jade, I really liked your idea of pros and cons, it's what I did too. Jeanette, I think you have to rely on the good advice you get from your providers, (I would be careful of relying too much on advice from us, we are not oncology specialists and every case is different), and the support you get from all of us. We are all here for you, in fact are in the same boat:) I too am so sorry for your loss and will help in whatever way I possibly can. I do know lots of docs/NPs who do work in onc and have access to lots of medical opinions.
Wish me luck, I have seen my med onc, cancelled my rad onc appt and will see the first of 2 PS next week to discuss reconstruction!
The final analysis is we all have to do what is right for us, and be here to support each other with the outcomes. I do agree with Beesie that knowledge is power, and informed decisions are always the best.
Take care, NW Sailor
Dx 11/7/2007, DCIS, 1cm, Stage 0, Grade 3, ER+/PR+