DCIS- mastectomy or lumpectomy and radiation

CTMOM1234

Whatever decisions we make, albeit mastectomy, bilateral, or lumpectomy + rads, we all need to get to a place where we have inner peace. For me, lumpectomy and rads was the right decision, but that was only after getting lots of information, including genetic testing, ultrasound, and an mri (which led to a false positive result in the other breast which then led to a favorable mri-biopsy) -- that was nearly 3.5 years ago. This thread seems lacking from anyone who had a lumpectomy and rads, perhaps people leave more often after taking that path. I am very thankful to have been given options and equally thankful to still have both breasts. These are such personal decisions and must be made cautiously because reconstruction has issues too (if you go that route) and none of the options are a guarantee.

To the earlier questions about microinvasion, my final pathology report showed a 1.75 mm grade 2 idc. So more than the 1 mm definition, but I like to think of it as "rounding down" and still micro And it did not ultimately change my treatment plan. It did lead me to have a sentinel node biopsy, which fortunately came back favorably. They did not test/report the HER2 status. I had another mammogram before rads started at the rad.onc's request (breast surgeon didn't think it necessary, but I'm glad to have that post lumpectomy baseline mammogram in my files as well as some additional comfort) and all was deemed fine to move forward.

Rads were psychologically difficult. But again, for me, well worth doing and my skin and breast looks pretty much the same from my angle as it did before this journey except for the scar.

Wishing everyone good inner peace.

ttkslee

Hey Beesie, thanks for clarifying the article. Some days I feel like my brain is so filled with info, it is about to explode. I need someone to keep me straight. In answer to the question about the recommendation from the oncologist for rads and not MX. He quoted my chance of developing a second breast cancer at only 11.4% even with the BRCA+. That was also the number that came from the genetic counselor. He said this was based on the fact that I did not develop my first breast cancer until I was 57. He said the higher % quoted in some articles of 40-60% is a lifetime risk. My BS quoted more like 20-25%. Some days I am leaning toward MX in order not to have the RADS, and other days, I shake my head, and think there is something a little comforting about thinking that the RADS can "zap" any leftover cancer cells that may linger behind. My heart goes out to everyone who is having to make this decision, especially with so many conflicting opinions and recommendations.

Beesie

ttkslee, interesting info from your doctors.  It's true that the 40% - 60% risk is a lifetime risk, but for the average women, more than half of her lifetime risk comes after the age of 60.... so I would have expected the 'risk by age' to be the same for someone who is BRCA positive.  Actually, for a first diagnosis, I know that BRCA women tend to skew younger, but I would expect the risk of a second diagnosis to be skewed, by age, more closely to that of the general population.   Here is info about risk by age for the average woman:

2. What is the average American woman’s risk of being diagnosed with breast cancer at different ages?

I tested BRCA negative.  My oncologist told me that having been diagnosed with BC one time, my risk to be diagnosed a second time is approx. double that of the average woman my age.  I was 49 at time of diagnosis; the remaining lifetime risk for someone who is 49 is 11% so that put my risk at 22%.  I'm now 56 so by virtue of having fewer years left in my remaining lifetime, my risk is now down to about 18% - 19% (double the average risk for someone who is 56).  My oncologist's "double the average risk" estimate is similar to other things that I've read or heard but I also know that some sites (including this one) actually put the risk to be diagnosed a second time at a higher figure than that. Given that, it seems really odd to me that your oncologist would estimate your risk to be 11.4%.  Since this figure probably has a big impact on your decision, it might be worth getting a 2nd opinion from another oncologist. 

Good luck with the decision

ttkslee

Hey Beesie!! I actually did get a second medical oncologist opinion today and he was speechless over the 11.4% risk for a second breast cancer that was quoted to me by the other oncologist. He said the risk was at least 25% and probably higher. That is more in line with my surgeons opinion. I am probably leaning toward mastectomy on the side that has already had the lumpectomy. He assured me there is no rush since my margins were good. But he did recommend at some point doing the prophylactic mastectomy on the right as well because of the BRCA +. Sure wish that I had accurate family history 5 months ago when first DX. That BRCA changes things.

thelightsofmylife61

Chantel, Be sure to ask your doctors about ALL the things that can happen if you have the mastectomy and if you don't... and be sure that you understand their answers. Do your research and talk to other BC survivors. Try not to decide out of fear but out of knowledge. Good luck... and God Bless.