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DCIS do I really need an AI?

Breast Cancer | Last Active: May 4 3:53pm | Replies (67)

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@triciaot

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.

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Replies to "Here’s what I looked at to make my decision- I was 67 at diagnosis, DCIS only,..."

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!

Thank you so much! I learned a lot from your response. I have a lot more questions to ask. I’m losing faith in my team may be a second opinion is where I’m heading next. Thank you for taking the time to write this out and help me on my journey best of luck to you

Hi
I just had dcis surgery getting pathology tomorrow seeing radiologist oncologist Feb 7. I would like to know more about the tamoxifen as my oncologist said it's the only AI I can take because of osteopenia. He said it would be 5mg if I require it.

@triciaot
Hello,
My DCIS was very similar to yours with all the same wording on the Path report except mine also said it is extensive and with Necrosis. Do you know what “with Necrosis” means?
Also, I don’t see anything about a miotic rate. How do you find that out? Do I need to ask my Onc?
I started Tamoxifen about 3 weeks ago and am struggling! I’m going to give it a few more weeks and see what happens but I might ask to lower my dose to 10mg per day instead of 20. Idk if that would help or not but worth an ask I guess.
Thank you!

Hi
Thank you for all that very informative information and you have given me more questions I wrote down to ask my oncologist I'm on the fence about doing tamoxifen I gave it a try for 6 days and I couldn't tolerate it so for now I'm taking a break and hopefully my radiation fatigue gets better and by then I see my doctor again and can have a good conversation I was only on 5 mg and holy cow what a nightmare