2% ER positive.....hormonal therapy anyone?

Bookpusher, I think you should discuss this with your medical oncologist, not surgeons.

Best

Speak to the MO.

Your diagnosis is DCIS, correct? And you are having a MX?

Unless your surgical margins are close (which is rare but possible), your risk of a local (in the breast area) recurrence is 1%-2%. With DCIS, your risk of a distant (metastatic) recurrence is virtually 0% - technically DCIS cannot become metastatic but there are extremely rare cases where a metastatic recurrence happens after a diagnosis of DCIS (without there first being a local recurrence of invasive cancer).

Hormone therapy reduces the risk of a local recurrence by approx. 45% - and this is based on someone being more highly ER+. Hormone therapy reduces the risk of a distant recurrence by approx. 1/3rd.

Therefore with a DCIS diagnosis and a MX, the benefit someone will get from hormone therapy is at most a 1% reduction of risk (half of the 1%-2% local recurrence risk) - unless there are close surgical margins and the local recurrence risk is significantly higher.

I had more than 7cm of multicentric (throughout my breast) grade 3 DCIS with comedonecrosis. I had a MX. My MO said that with this diagnosis, hormone therapy is contraindicated - the risks from the drugs themselves are higher than any recurrence risk reduction benefit from the drugs. With a DCIS diagnosis and a single MX, the only reason to take hormone therapy is as protection for the remaining breast. Here the 'remaining lifetime' risk to develop a new breast cancer (totally unrelated to the first diagnosis) can be quite high, but that depends on the patient's age (it gets lower as we get older) and other factors (breast density, family history, etc.).

Edited to add:

The NCCN Treatment Guidelines are the gold standard, used by most cancer specialists in North America. Here is their current page on DCIS postsurgical treatment. Notice that risk reduction therapy is only suggested for those who have a lumpectomy or as protection for the contralateral breast for those who have a single MX.

Bookpusher, medical oncologist if the clinical diagnosis is DCIS or small IDC usually sees patients after surgery and that is because surgical pathology results often contain valuable information not available before surgery.

In my case - not to scare you - I was clinical stage 1a before surgery and was not expecting much treatment due to very small tumor and negative findings on pre-surgery tests. I woke up stage 3. That’s when referrals to MOand RO were made.

Bookpusher, to muska's post, with DCIS, you will usually see the MO after surgery - and this should happen whether the diagnosis remains Stage 0 DCIS or is upgraded to IDC (as happens in approx. 20% of cases). The decision on endocrine therapy is made after surgery, once the final pathology is in, and the MO is the doctor who should be making that recommendation.

At this point, with DCIS and a MX, the only reason endocrine therapy may be recommended is as protection for your remaining breast. Since a contralateral diagnosis would be completely separate from your current diagnosis, the details of your current diagnosis (grade 3, comedonecrosis, ER/PR negative) don't factor in, because a second diagnosis could be completely different. But having breast cancer one time does approx. double your risk as compared to the average women the same age (according to my MO and much that I've read), and your mother's diagnosis might increase your risk further, although that's nebulous. The average 70 year old has a 4.09% chance of developing breast cancer over the next 10 years, and about a 0.5% chance of developing breast cancer over her remaining life beyond that. If your risk is about double based on having already been diagnosed one time, this would put your risk to be diagnosed again, if you have a UMX, at approx. 9.2%. Endocrine therapy would reduce this risk - since a second diagnosis could be more highly ER+. But since you are currently so lowly ER+ and perhaps a second diagnosis would be similar, would it reduce your risk by the full 45%? I don't know. If you have a BMX, your risk to be diagnosed again would be 1%-2%, and endocrine therapy would be contraindicated because even the small risk of serious side effects would be greater than any breast cancer risk reduction benefit you would receive.

That's my understanding based on my discussions with my MO, having had a similar diagnosis (although I also had a microinvasion of IDC) and based on my reading of research. The question for you is whether the BMX is worth it to you to reduce anxiety, possibly for physical comfort (for example if you don't plan reconstruction and don't want to be lopsided) and for that amount of risk reduction (recognizing that this is just my calculation based on my knowledge).

Just to add a little to the mix here, the first person I saw was the surgeon, and he referred me to the oncologist. Throughout my whole situation, I have found the surgeon much more helpful than the oncologist. It was the surgeon who made all of my initial scan appointments and who called me with the biopsy results etc., It was he who also noticed and made a referral for me for my lymphedema, and it is the surgeon (now retired, so I see his former clinic partner) who continues to assist me with most all of my concerns. My oncologist seems to know her chemo, but not much else. This is at a large university associated hospital and cancer center. I've read many comments on these boards where others find it one way or the other; they either find the oncologist the most helpful and knowledgeable or the surgeon. It seems to be an individual situation thing. If one of these two decides to no longer follow me, I sure hope it would be the surgeon that I would keep. In my case, they've done much more than cut.