DCIS do I really need an AI?

Here’s what I looked at to make my decision-
I was 67 at diagnosis, DCIS only, ER+ 100%, PR+ 95-98%, 7.7 mm after surgery (1.6 cm before biopsies), no lymph nodes suspected, lower outer quadrant right breast.
I considered the pathology report and histology, my info:
DUCTAL CARCINOMA IN SITU (DCIS), INTERMEDIATE NUCLEAR GRADE, CRIBRIFORM, PAPILLARY AND SOLID GROWTH PATTERN(S) WITH NO CENTRAL COMEDONECROSIS
The intermediate grade or grade 2 means it scored a bit higher if different type cells (glandular/tubular), and/or the size and shape of cells (pleomorphic), and/or how fast the cells are reproducing (miotic rate). It could be any variation of high/low scores on these three indicators that pushes the number up into intermediate grade.
It’s well documented that grade 2 is an inconsistent score. The same pathology tissue might get a grade 1 or 3 by a different rater- so it’s more difficult to make an exact determination whether to go with more conservative treatment or not. The miotic rate scares me the most, and if I were uncertain of which treatment I wanted, I’d ask more questions about the scoring on my grade 2. I’d want to know how high the miotic rate was and an explanation on what their experience is with the level of growth.

I looked at the type of cell patterns: my understanding is cribriform is not a bad type, and papillary is somewhat neutral, but solid growth is NOT good. It means the cancer is filling the space. No central comedonecrosis is good - but that can become a problem when the growth of cancer cells are pushing outward and the necrotic (dead) cells are grouped in the middle, the cancer cells are more likely to move out of the duct.

I was also considering that my first diagnostic mammogram and ultrasound showed the LOQ lesion but they thought that there was also a small spot in the UOQ. A follow-up mammogram at MD Anderson with spot compression (oh my, that’s excruciating) did not show a lesion in the UOQ, and neither did the MRI. But it left me feeling that the original radiologist may have seen something that was indeterminate but given the right environment might still grow. The UOQ is a much more likely site for breast cancer than the LOQ.

I had genetic testing because of the type of cancer in my father and his siblings (lung, colon, pancreatic, brain) and my sister had DCIS. I was negative on all markers.

I did 5 days of radiation, hormone therapy was recommended either AI or tamoxifen. Tamoxifen is not given as often to someone my age, 18 years post menopause. But I was already at osteoporosis and had three previous issues with tendon/fascia problems in my hands/feet that an AI wasn’t something I wanted to take. Because of genetic testing my uterine cancer risk is a bit lower and I’ve never had PCOS or signs of thrombosis.

My understanding, if I have this right, is that DCIS has a higher recurrent rate than other cancers, and that higher positive hormone also indicates higher recurrence- although outcomes on both are good. So I may have recurrences but I’ll likely survive it all. When I look at my risk percentages I keep that in mind. A 7% risk rate (after radiation) is low however it might be that I’m more likely to be in that 7% because of the type of cancer I had. Someday, research will show a better differentiation on outcomes. For now, we’re still looking at numbers that lump DCIS, LCIS, invasive, premenopausal and postmenopausal all in the same study with numbers too low when they sort out the parameters to get good data on our specific cancer profiles.

I considered my risk with the grade 2 score (solid growth, miotic rate) and the “what if” of a tiny lesion in another duct in my breast. Considered that my sister and sister-in-law both took tamoxifen for 5 years and survived side effects.

For me, I was willing to try Tamoxifen. I’ve had some issues, but that’s a different story.

Hi - I'm so confused as well. And I agree - It sort of irritates me when I hear that I don't really have cancer - oh really? Then like you said, why the overkill?? Is it or is it not cancer? I've had 3 lumpectomies to get clear margins and am in 3rd of 4 weeks of daily radiation treatment. When that ends my medical oncologist wants me to go on anastrozole for 5 years. There are so many side effects that I don't know if I want to do that. And yes, how do you get clear answers? It's so frustrating. I'm 72 and have osteopenia. I'm tempted to just take my chances and not do the AI since I don't have cancer. HA

Hi - I'm so confused as well. And I agree - It sort of irritates me when I hear that I don't really have cancer - oh really? Then like you said, why the overkill?? Is it or is it not cancer? I've had 3 lumpectomies to get clear margins and am in 3rd of 4 weeks of daily radiation treatment. When that ends my medical oncologist wants me to go on anastrozole for 5 years. There are so many side effects that I don't know if I want to do that. And yes, how do you get clear answers? It's so frustrating. I'm 72 and have osteopenia. I'm tempted to just take my chances and not do the AI since I don't have cancer. HA

I had a 7 mm, stage 1, negative nodes (IDC) removed via lumpectomy. I am just finishing radiation therapy. Oncotype score is 10. I’m scared to take the AIs due to my own history and close family history of cardiac issues, kidney issues, and pre-existing joint pain from arthritis. Docs are encouraging AI Anyone else experience this? Thank you in advance