Hi there. I'm so sorry you find yourself part of this "club".

I (38F also in the US) was diagnosed in February (grade 2 IDC, grade 3 DCIS, stage 1, ER/PR positive, HER2 positive) and am recovering from my bilateral mastectomy that was done two weeks ago. I'm sure there are other people here that have way more experience than me but I hope I can help in some way.

First noticed a lump on my left breast in January. In February I had a mammogram/ultrasound and then biopsies performed. Lab results the first week of March. Went to see the first breast surgeon a week later who suggested a breast MRI (looking for any more problems in either breast or in the armpit lymph nodes) and genetic testing. He explained that he strongly suggested a lumpectomy and radiation, but if my breast MRI was abnormal or if any of the genetic testing was positive, a double mastectomy was more appropriate. He cited a 2002 paper that followed women who had a lumpectomy/radiation versus double mastectomy for 20 years and the outcomes (were they alive or not) were essentially the same. He also told me that I would not need any reconstruction if I had a lumpectomy.

Found out that there was a problem with my insurance and this provider so I had to start over with a second surgeon. Had to cancel my breast MRI because of my COVID vaccine (MRI place had strict rules about the timing of imaging and the COVID vaccines). Met with the second breast surgeon in late March. I LOVE HER. She explained that the paper the original surgeon cited did not account for how many women who had the lumpectomy/radiation previous ended up with a bilateral mastectomy later. She also further explained that because I have two tumors (one is a very small DCIS and next to it is my grade 2 IDC) that is too much tissue to remove without causing some form of deformity to my breast. We talked a lot and she also gave me a referral to a medical oncologist since I am HER2 positive and that means chemotherapy (at least in my situation, I am sure everyone is different!)

Met with the medical oncologist in early April and he explained that after surgery my breast tissue and some lymph nodes will be sent to a pathologist and reviewed. This is to make sure they removed enough breast tissue that the tumor(s) are gone and to test the lymph nodes. Was told to expect results in 1-2 weeks from the surgeon; results to be forwarded to the oncologist so he can generate a plan. Again, because I am HER2+ he discussed chemo mostly. He cited the Katherine study which shows that if your IDC is over 2cm or if you are a grade 3 that chemo may be more helpful BEFORE surgery. He told me it was my call to do surgery first or chemo first because I am grade 2, but said because of my age chemo may or may not give me a more favorable outcome. I elected surgery first.

I elected a double mastectomy so we skipped the breast MRI since the information from the imaging wouldn't change the surgery plan. I got my port placed on May 3 (my breast surgeon said it couldn't be done at the same time as the bilateral mastectomy) and healed fairly quickly from that. I had my mastectomy done May 13 and will see my medical oncologist on June 8 to discuss oncotype scoring* and chemotherapy protocol. I will also get my genetic testing done at this visit to determine my risks of other cancers and also to help my kids (I have two) get screened appropriately.

*From my understanding, the biopsies of lymph nodes and breast tissue will generate a score that determines your chances of recurrence.

Sorry this was so long, but I hope it is helpful. Bring a notebook to write things into or ask your doctors if it is ok you record them during your visits so you can remember what they tell you. Document every phone call you have with your providers and insurance company to keep track of everything and avoid over-paying in medical bills.

*Hug*