Wife (38) just diagnosed with DCIS-mi

-How long did it take from diagnosis to breast MRI. We have waited about 10 days and that feels like forever. There is no average. Some patients will only wait a day or two, some patients will wait a couple of weeks, many patients won't even get a breast MRI - some surgeons want them to be done prior to surgery and others don't. Breast cancer in general is not a medical emergency, and DCIS-Mi is the very earliest stage of invasive breast cancer.

-How long typically until surgery? We are looking at either a single or double Mx (based on initial conversations with our breast surgeon). It may depend on whether your wife wants to have reconstruction done (or started) at the time of surgery. In that case, she will have to see a Plastic Surgeon and the PS and BS will have to coordinate their schedules for the operation. Generally I'd say most patients wait 3-6 weeks for surgery, but with the added factor of a PS, and with DCIS or DCIS-Mi (which is not considered urgent), the wait could be longer. I had an inconclusive core need biopsy, then an excisional (surgical) biopsy that discovered the DCIS-Mi, and I ended up not having my MX surgery until 2 1/2 months after the excisional biopsy.

-Should we get a full body CT scan? Oncologist is offering to order one if we want to put our mind at ease? That's not normally part of the protocol for early stage breast cancer but it's your wife's choice (and note that she will be having the scan, not you, so it's not "we"; same with the surgery, unless you are planning to have a MX too). The reason why CT scans aren't usually given to early stage patients is because while a CT scan will find a larger area of metastasis (the lifetime risk of which is about 1% with DCIS-Mi), it will not find small areas of rogue cells that might have moved from the breast into the body. So in this sense, while a clear scan will provide peace of mind, there is nothing definitive about it. Additionally, any scan can also find false positives - we tend to have all sorts of harmless crap going on in our bodies and these scans show these things, which leads to more testing and anxiety until it's determined that whatever was seen is harmless.

-Fertility options—has anyone undergone fertility treatment after DCIS-mi surgery? Can't help with that one. There is a forum on this site for young survivors and there may be some discussion about this there. That said, any estrogen therapy is contraindicated for anyone who has had an ER+ breast cancer. After being diagnosed once, our risk to be diagnosed a second time, with a new primary (different from a recurrence) is higher than average. Adding estrogen will further increase this risk.

-What's the likelihood DCIS-mi will change stages, or is that an amateur question (can't tell until surgery)? DCIS-Mi is Stage I, not Stage 0 (pure DCIS is Stage 0). Stage I invasive cancers include tumors that range in size from 1mm (the microinvasion that your wife has) up to 2cm in size. The odds that a tumor larger than 2cm will be found during surgery, with nothing showing up on imaging except the calcifications, is extremely small.

However with DCIS-Mi, there is up to a 10% risk that there might be some nodal involvement. Usually this is small, so it could change the stage from Stage IA to Stage IB. If the nodal involvement is greater, then this would move the diagnosis to Stage II. I'd estimate that the chance that there might be a more significant amount of nodal involvement is probably 2%. Just guessing though.

If there is nodal involvement, that would put radiation on the table, even after a MX. Rads might also be on the table if the chest wall surgical margins are positive, which could be possible with such a large area of calcifications. In both these cases, sometimes rads will be done and other times not.

If there are more microinvasions or a slightly larger invasive cancer, even without changing the stage, it might lead to a recommendation that your wife take endocrine (anti-estrogen) therapy. Normally this is not required after a BMX for DCIS / DCIS-Mi, and is considered optional after a MX (the primary benefit being protection of the remaining breast against a new primary (unrelated) breast cancer).

-Any other DCIS-mi advice for us? With an ER+/PR+/HER2- DCIS-Mi, unless there are unpleasant surprises in the final pathology, your wife's treatment will be the same as it would be for pure DCIS. That was the case for me. So reading here might be helpful: Topic: A layperson's guide to DCIS

A little more bluntly than Beesie said it, in case you missed it: Drop the "we" unless you are going through the same diagnosis, tests, procedures, and surgeries.

Ap, glad my information was helpful.

Everyone here truly appreciates a supportive spouse, and unfortunately not all spouses are supportive. And of course, "we" go to appointments together and "we" discuss the diagnosis with the doctor. As the spouse, you will be an important help in the anxious days before surgery and in the sometimes difficult days after surgery.

But "we" don't have CT scans, "we" don't have MX surgery and "we" don't take endocrine therapy. Only your wife does those things. As for decision-making, my personal opinion (strongly held, I admit) is that while you both may discuss the pros and cons of each of the options (and a spouse or family member or friend can be very helpful in ensuring a thorough and thoughtful discussion) ultimately it is your wife's decision alone on what treatments to have and whether to have a UMX or BMX. She has to live in her body for the rest of her life and this is a life changing decision that will affect her every day for the rest of her life (although hopefully to no noticeable/problematic effect years out). I feel that no one should be urged to go in one direction by a spouse or family member if it's not what she would choose on her own. I've been here long enough to have seen patients make decisions based on their spouse's wishes, and then the spouse leaves, or sadly even dies. Hopefully neither situation happens with you and your wife, but you can see why the decisions need to ones that your wife makes for herself.

Ap7777,

I would also be prepared for what may or may not come from the breast MRI. I am about 3 weeks ahead of your wife on this journey and was extremely anxious to get my breast MRI done and immediately get the results only to find it did not provide much more information. There is no definitive diagnoses with MRI results; they just lead to more suspicions and more biopsy recommendations. My "suspicious area" was found to be larger and three additional "suspicious areas" were identified (two in the 'bad' breast and one in the 'good' breast). My first surgeon insisted on having each of these areas biopsied (another MRI with contrast) before she would discuss surgery options.

As I was leaning toward a second opinion, I moved to the second surgeon who agreed there was no need to keep sampling tissue if I wanted a BMX. Her only advice was to consider a biopsy of the lesion in the 'good' breast (the one without a diagnosis) to help dictate whether I could avoid a SNB on that side. Long story; I elected to have the biopsy of the "healthy" suspicious breast but the suspicious area could not be repeated on the MRI table so the surgeon, in an abundance of caution, is going to do the SNB anyway. Ugh!

So, 2 mammograms (Jun 4 and Jun 19), 1 core biopsy (Jun 30, dx: Jul 7), and 2 MRIs (Jul 21 and Aug 5) with contrast (and so many days of just waiting!) later, I am having a BMX with SNB on both sides Sept 17th. I am doing direct to implant so had to line up both surgeons--who are considered the Atlanta dream team.

I currently do not have suspicion of invasion so I can not speak to your question about CT except that based on Bessie's comments, it sounds like it could lead to the same frustrations as MRI.

Keep us posted; I will offer that it seemed the shock and learning curve that came with this disease was extremely steep for me (even though my mother had BC twice--and is still very much alive). My husband and I have adjusted to our new normal for now and I expect you and your family will too. Our 'baby' is in college so that helps but brings a different kind of stress. It is overwhelming but I am finding the extra time before surgery to be beneficial.

P.S. I almost forgot about the genetic testing. Interesting but long wait and another dead end--all negative. Which adds to confusion since multiple close relatives had breast cancer in my case.