DCIS do I really need an AI?

Did you have an Oncotype DCIS? Have you seen the report? That might give you info that can help with a decision.

I am exactly in the same boat as you but my surgery in one spot was only 1mm. I chose to do radiaion but no o hormone therapy. I have osteopena, arthritis, blood clot and heart issues. I will not compound these with potential horrible side effects. Quality of life at 66 is more important vs minimal risk of recurrence. You can't find good stats because most people cannot tolerate the meds so do not finish treatment, therefore no good stats.

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.

Tricia
THANK YOU!!!!
Your knowledge and information was wonderful.
I have been trying to get that kind of detail information for months.
It is very difficult, as we all have experienced to make a decision with “I got cancer! Now what?”
My story is very close to yours. One detail can make a choice clear!!!! Again thank you!

So here I am 1 year out. You can see my cancer info in the post above.
I was not cleared at my one year MRI. They are watching 2 things. There is a lesion in the ipsilateral breast (my left). They believe it is surgical scar. I had a mastoplexy, breast reduction, on the left to match my right cancer side surgery. When I look at the MRI, it does look like scar but it is more central. Odd, if you ask me. They rated it BIRADS 3, see link for score ratings below.
They are also watching an enlarged lymph node on the right. They think it might also be benign but the size, shape, and location are suspect. It’s true I had been exposed to a variety of viruses from my grandchildren, and I had a few myself. But the location bothers me. I had also had a COVID booster but in the other arm.
Usually lymph nodes are enlarged in the neck, jaw, groin area with different viruses. This lymph node is almost 8mm and round. It is a level one axillary node. 12mm is evidently the size that is a sign of cancer and triggers treatment options.
I’ve accepted the 6 month wait to scan this - because the alternative could possibly leave me with edema issues or nerve damage and it may never grow larger.

If either turns out to be something, I can only hope the tamoxifen is doing its job and stopping or slowing growth. I have a lot of trust in MD Anderson so when they say they think both are benign, it lowers my anxiety.
We’ll see. 2 1/2 months more to wait.

I'm 82 years old.I ended treatment for breast cancer 3 years ago. I had a lumpectomy, chemo and 6 weeks of radiation. I refused anti hormones because I was so miserable mentally during menopause.I was HER2positive and was treated with Herceptin during the chemo.
I saw my oncologist a few weeks ago. He said he didn't expect that my cancer would come back.

Hi Marilyn. First dx. W/ DCIS in 2015, choose bilateral mastectomy. No other TX. ordered. In 2022, diagnosed with stage 4 mbc. Wish I had been given AIs. My current oncologist, feels that I should have been on them. I am 68, also with osteopenia taking Anastrosole and Xgeva injections with Abemaciclib. Best wishes with your treatment plan.

@marylynr as you can tell from posts here, you really need more information to make a decision. Especially ER, PR and HER2, and an Oncotype score if done.

I had invasive cancer so I cannot speak to DCIS. But I will say that in the 5 years I did an AI, my side effects were very tolerable and many many people finish the 5 years or even 7 or 10. Bone meds are given alongside. I had osteoporosis before cancer and still did an AI. I did not do a bone med because my doc was nervous about another health issue, but I did a bone med afterward and my bones are better now than before cancer. Another option is Tamoxifen.

Come back with more info if you like- hormonal scores, HER2 and Oncotype will help a lot.

No I was told by both my onc and surgeon that was for invasive only.

That's not true https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-dcis-score