DCIS Cancer Removed-Now What?

I'm in Oregon, over 70, Dx of DCIS moderate nuclear grade, comedonecrosis not specified further. Scheduled for surgery in a week. The hospital system is strongly recommending endocrine therapy (ET) and radiation whole breast. I think it is worth it to look at the over 70 y/o recurrence rate with both post op therapies vs one but not the other. The DCIS oncegene test would help from what I read but they are not willing to do one pre-op and may but are not sure about doing one post op.

If the pathology markers are "good" they won't do the genomic test; if mixed or poor pathology results occur they will do the genomic test as well one source said. This just doesn't make sense to me IF in any case the genomics provide valuable guidance re re-occurence.

Is anybody out there in Oregon also who has had or is having DCIS and could communicate with me about your experience?

Thanks to anybody who might respond, wherever you are.

I am 48 and just had BMX with reconstruction on 12/14 for DCIS. So far the recovery has not been bad at all.

I had DCIS in only one breast but had both removed. In the united states insurance companies must cover reconstruction of both breasts an if only one is affected. This is because a woman has a right to symmetrical breasts.

I opted for BMX for a few reasons:

1. 3 to 5 weeks of radiation and 5 years of hormone blockers seemed to be alot. In my mind it would be years before I could put this behind me and not be reminded of having cancer.
2. I have a very extensive family history of breast cancer so was considered high risk of recurrence
3. I wanted to avoid the anxiety of future mammograms/callbacks/biopsies. Especially since I have so many years left.

My pathology report came back with no surprises. An oncologist will have to confirm to be sure, but I should need no further treatment. It is very liberating to know that I am done!

If you don't have a family history, yes BMX may be extreme, but if it is something you want, you should be able to get it.

I know there is so much to think about and it is overwhelming. Best of luck to you!

Note that the recurrence risk is not 0% for BMX. There are residual areas of breast tissue that are not removed, like in the armpit.

LAstar, thank you for your post. I had a follow up today with my BS after double mastectomy four weeks ago for DCIS in one breast, high grade. I also had re-excision for a close margin, which resulted in excision of only benign tissue. I am grateful for my good prognosis, but want to be realistic about recurrence and vigilant. I really appreciate the articles.

I was all about the probabilities--when my RO said radiation would cut my recurrence probability in half it was a very easy decision. I also didn't want to take more tissue than was necessary. Conventional wisdom is that the probabilities are the same for lumpectomy-with-radiation and mastectomy.

ADH is atypical ductal hyperplasia. It is a step below DCIS. IC is invasive carcinoma. Sorry, I can't help with the radiation comments. I do know several women who have had it and said that the fatigue was their biggest complaint. Good luck as you make your choices.

It's important to remember that everyone's journey is unique. In my case, although the DCIS grade was high (Grade 3) the size was small. Given that, the radiation was not going to change survival rate; it was already high around 98% and adding the radiation would have only added another 1%. I appreciated the radiologist's honesty when he said - you can have radiation but its not going to change anything and the radiation is not going to affect the ADH. I think it is different if your lesion is larger and docs worry that some cells might be missed. I am still working out my management plan. I have been monitored every 6 months w/diagnostic mammograms. I've alternated ultrasound (I have very dense tissue) and MRI. I am a HUGE proponent of screening every 6 months. A half a year ago all I had was ADH and clacifications. Six months later - DCIS Grade 3. It's so important to keep up with your follow up screenings. I think the reason mine was picked up so early is because I am so diligent about checking. I'm going with tamoxifen mostly because my cancer is E+ and the DCIS developed rather quickly within 6 months to Grade 3. Anything that I can do to prevent that rapid progression I am willing to explore (note - still haven't that pill yet! I plan to start tomorrow).

Good luck on your journey and definitely make sure that you find a surgeon that listens to you and your concerns. Its so important to have confidence in your doc and feel comfortable being able to share your concerns.

Tomichi1 I had a similar diagnosis DCIS. Lumpectomy 2 weeks ago, Just back from follow up. Stitches are out. Good news---clear margins! If they weren't clear, radiation would have been a sure thing.

BS says next step is to send pathology to have recurrence risk evaluated- Oncotype DCIS-DX. Will need consult w/ RO but If risk comes back low enough- may be no RT needed!

After that comes eval w/ medical onco to see if risk is low enough to be safe avoiding or at least limiting dosage of long term oral meds like tamoxifen. Hoping to avoid it all but at 95% both ER+/PR+ trying to be realistic.

Keeping positive and focusing hard on that best case scenario.

BTW: I was told they won't order the Oncotype before the initial full pathology comes back because it will make a difference on what test is best.--- Oncotype, Mammaprint, DCIS-DX. Had mine been invasive rather than true DCIS she would have ordered a different genomic test.. It's frustrating following the process with all the waiting, would be great to have it streamlined for quicker results.

Hi ! I am reading older threads trying to shed some light on my treatment plan and saw this post. I had a unilateral masectomy 12/19 for large area of DCIS (6cm) 𝐰𝐢𝐭𝐡 Paget's disease of the nipple. Mine was pure DCIS (non-invasive) ER -and weakly PR positive (5%). I also had close margin on the anterior upper outer region. Was your re-excision during reconstruction ? Any radiation recommended ? Trying to reply directly to SuQu31