Topic: Lurker checking in to make sure I didn't miss anything

Mysticmint wrote:

Hi everyone

I have been reading these threads and learning a lot. I think I understand my new DCIS diagnosis and have made some decisions, but it is very overwhelming and I want to just check in here. My doctor, although highly recommended by several people, tends to talk quickly and I believe is extremely busy. Here in the NY area people who put off medical treatment are now flooding doctors and hospitals getting their treatments done as the COVID rates have lowered. In fact, my surgeon's surgery booker just called to tell me she has one slot to do my surgery next Friday and I should take it because the ORs are fully booked throughSeptember.

Anyway, here is my story in a nutshell: 58 year old healthy woman with no family history of cancer. Dense D breasts so I get sonos with my mammos. Got a mammo/sono on 7/10 and it was suspicious. Sent for biopsy on 7/14 of 2 places in the breast. Stereotactic area on side of breast showed 5 cm of DCIS high flat grade, progesterone and estrogen negative. Other sono assisted bio of lower breast under nipple was benign. Had an MRI which showed that the DCIS area might be more widespread and that the benign area of the first biopsy could still be something so my new surgeon ordered another set of biopsies. They took a while to schedule because of the crowds of people wanting appts. Meanwhile, my surgeon works in tandem with an excellent plastic surgeon. Together they suggest the treatment of lumpectomy with bilateral breast reduction, followed by radiation. I thought, wow, I get a nice breast lift while I cut out this little, pre-cancerous area. Sounds pretty straightforward. Oh, and got genetic testing telling me I was negative for BRCA.

Then I start reading and hearing about people choosing to get mastectomies, which I never really considered because it seemed drastic. But when I heard about people in my area of Long Island, with a high incidence of breast cancer, having recurrences, I start to think of it as an option. Plus, reading that 5cm is actually a large area of DCIS, and the high grade and Estrogen/progesterone negative might be more serious in terms of recurrence...I got scared.

I went for the extra biopsies. First one is negative: meaning the area of DCIS does not seem bigger than the original estimate. When they go to do the 2nd biopsy with the sonogram they cannot locate the area and they recommend I get an MRI assisted biopsy. That is another week's wait. I just had that yesterday.

I finally spoke to surgeon last night. She says that mastectomy vs lumpectomy is up to me. She told me that survival rate from either lumpectomy or mastectomy is the same and that the recurrence rate from lumpectomy is 1% a year for a total of 10 years, meaning that 10 year recurrence is 10%. That sounded low to me, especially for Long Island. But I also know that mastectomy doesn't 100% guarantee that there will be no recurrence. She also said she does not want to rush me and I should take my time, but if I decide on mastectomy I may not be able to use the Sept 3rd date and we will have to try and schedule another date (which may mean sometime in Oct). We will make the final decision after the results of the biopsy come back--hopefully on Friday.

But today I am back to leaning towards doing the lumpectomy/reduction-lift/radiation if the last biopsy comes out negative. I figure that I would rather do the original plan that conserves my breasts, has a quicker recovery time, lets me avoid staying overnight in the hospital for now. I know I take the risk of a higher recurrence but I will be religious about getting mammos. I don't think I will be totally paranoid about each mammogram {as some people who have regretted not getting mastectomies have told me}.

I want to thank the people on this board, especially Beesie's informational DCIS post. I was going to ask why my Dr didn't test me for HER2 but now I don't have to ask since I read that post. I do worry that my Dr didn't go into detail about my high grade hormone negative characteristics when discussing options. I know she comes highly recommended and I did get another consultation from a dr I didn't like as much. I think I am just anxious. Is there anything I have missed or should have asked before going ahead? I feel rushed, and yet this has been going on since early July.

Thanks in advance.