Aug 22, 2021 10:53AM RosieLove wrote:

Thank you so much Livinlife. No, I haven't any decisions about surgery yet. I did go ahead and schedule an appointment with another surgeon at a NCI-Designated Cancer Center for a second opinion in mid-September. I think it is a good suggestion to determine the risk reduction for recurrence that each treatment options offer.

Jan 1, 2022 12:03PM mountainmia wrote:

Hi JGore. I'm sorry you're here with us. It's a hard decision for some people because you have to weigh all the costs and benefits, make the decision, and then not second-guess yourself. The post below gives you some links that can give you more info on that.

https://community.breastcancer.org/forum/91/topics...

There's another one I don't have at hand that has more. Maybe someone else will stop and post the link to it.

What I would say is that mastectomy will almost surely have more difficult and complicated recovery than lumpectomy. If you have reconstructive surgery, too, that increases the impact exponentially. If you're concerned about recurrence and that's why you're leaning to mastectomy, current research shows (again I don't have the link handy) that outcomes are at least as good with lumpectomy and radiation for most cancers.

You mention that the type you have is agressive. Can you give more info on that? There are posts and comment threads on basically every kind of bc, so I know that someone here will be able to help you sort out the options.

Jan 2, 2022 01:30PM - edited Jan 2, 2022 02:36PM by RosieLove

Hi JGore - I understand your concerns. It is such a personal decision. I am happy to share my journey with you.

I opted to do a lumpectomy with radiation based on the recommendation of my surgeon after a biopsy revealed high-grade, estrogen-receptor negative (ER-) DCIS in my left breast. The surgery on September 29th went well and I recovered quickly. I returned to work a week and a half later.

Before I underwent any radiation however, doctors found an additional type of breast cancer in my left breast when they examined the tissue from my lumpectomy - intermediate-grade, ER+ DCIS. While neither of the breast cancers were determined to have become invasive, one was identified as more aggressive and likely difficult to treat if it ever were to progress - the high-grade, ER- DCIS. The pathologist also found a lot of it. She further determined that margins were not sufficiently clean, meaning cancer cells were at or near the edge of the tissue removed and some likely remained in my body.

Based on the new findings, I decided to follow my surgeon's recommendation again, which now was to undergo a mastectomy of my left breast to remove the remaining cancer and reduce the risk of recurrence as well as to undergo a prophylactic mastectomy of my right breast as a preventative measure. Thankfully, my surgeon presented my case to other breast oncologists in the John Hopkins health system at what is known as a tumor board, and they unanimously agreed with her approach. I underwent the surgery on October 27th and am recovering nicely but needed much more time off from work to heal properly compared to the lumpectomy. I returned to my job five weeks later and worked part-time for two weeks thereafter.

Thankfully, I did not need to undergo any chemotherapy given that the doctors found no invasive cancer in my blood or my sentinel lymph node. I also was able to avoid radiation given the decision to have a mastectomy. I chose not to have reconstruction, so my breast cancer treatment is now officially over.

I feel like I made the right decision for myself at each juncture because I took time to process the information and the emotions that arose. I also sought support from friends, family and other breast cancer survivors who generously share their journeys with me to help me determine the course of action that best aligned with my own values. Lastly, I felt comfortable relying on the recommendation of my surgeon and her colleagues because they belonged to a National Cancer Institute (NCI) Designated Cancer Center, which meant that they delivered cutting-edge cancer treatment.

With a DCIS diagnosis, I felt like I had time to explore these matters. Wishing you the best in determining the treatment that is right for you.