DCIS on left side a year after IDC treatment on right breast

worried01

Hi,

I was not sure where to post but wanted to see if anyone else may have been in a similar situation and might have some advice. Apologizing in advance if this message is a little lengthy.

About 8 years ago when I was around 27 years old, I started having bloody nipple discharge from my right side. At the time they did ultrasounds and mammograms over time but the imaging did not find anything suspicious so eventually I had a surgery to stop the symptom (the doctor actually had to do the surgery twice because the first time the margins were not clear though the tissue was tested with a benign diagnosis). Sometime after the surgery though for some reason I started getting discharge on my left side. Since l had recently just gone through surgery, my doctor said I could watch and wait to see if it would go away on its own and take some time to plan for another potential surgery. After changing jobs, moving, and looking for a new doctor, I finally had an MRI in late 2019 to try to address the discharge on my left side but then the imaging found a ~2.3cm mass on my right side which was cancerous so I had surgery on both sides to treat the IDC on the right side and the discharge on the left side.

Recently I had a ~ one year MRI follow-up because I started having some minor discharge on my left side a few months ago and got an MRI biopsy result of DCIS for the left side. My doctor/surgeon said she was surprised since I have been on tamoxifen. She said given my age (I'm 35 now) and my previous history of breast cancer I may want to consider a double mastectomy but that she wanted to talk to my radiology and medical oncologist doctors to see whether they think this is a new 'pre-cancer' or something they may have missed last year. I will see my doctor tomorrow for a follow up visit but I don't feel mentally prepared to consider the mastectomy even though I have been trying to do some reading online to become a little better informed.

I guess I mostly wrote this because I don't really want to do a more major surgery if not necessary but don't want to do something I may regret later. I am not sure how a lumpectomy compares to a mastectomy as far as the risk of cancer returning and how much to weigh in my history of discharge and IDC from last year. My family is out of state and with all these covid travel restrictions I guess I have some additional stresses of most likely needing to recover by myself post surgery. I'm also scared about pain and possible surgery complications. Hoping to find other people who may be going through or have gone through a similar situation and would appreciate hearing any feedback.

LivinLife

Welcome worried! You've had quite a bit going on over quite a period of time - been through a lot! I will not say one way or the other which surgery you should have. See what your providers have to say and then see what you are most comfortable with. This truly is one of the few surgeries where you really get to choose or have a strong say (for the most part) in what happens...

You didn't say anything about Grade of the DCIS or whether or not you had comedo necrosis. Either of those adds some seriousness to the diagnosis and may (or may not) influence your surgery decision. Recurrences can happen with either lumpectomy or mastectomy so keep that in mind as well. I had Grade 3 DCIS with comedo necrosis. I basically had to have a mastectomy because I was not a candidate for radiation due to having scleroderma so a lumpectomy was out of the question.

Lumpectomy recovery time can actually not take too long at all as long as there are no complications. You likely, with some preparation pre-surgery, can recover alone at home as well. Check out the lumpectomy lounge thread. There is also a lumpectomy vs. mastectomy section on this site to check out as well. There is also a January surgery forum which may help as you weight pros and cons. It will just allow you to see what went into other's thoughts, you may see others' experiences with their choice during recovery and post-surgery in some cases. You can also put key words into the search box at the top of the page. Additionally if you choose lumpectomy that may mean radiation - again talk with your docs about your situation - there are cases where lumpectomy with DCIS does not require rads or one can choose not to go that route without sacrificing too much regarding risk level... You'll likely hear from others with more knowledge than me in this and other more medical arenas...

Beesie

worried01, I'm sorry that you are going through this again.

There is one thing I find odd in what your doctor said. "she wanted to talk to my radiology and medical oncologist doctors to see whether they think this is a new 'pre-cancer' or something they may have missed last year." Breast cancer doesn't usually move from breast to breast - and in the extremely rare cases when it does, it is an aggressive invasive cancer that travels through the nodes (so you would expect nodal involvement). So your diagnosis of DCIS this year in your left breast logically can't be related to your diagnosis of IDC last year in your right breast. It's a different question as to whether the DCIS in your left breast was present last year and just missed. That's actually quite likely, since usually cancer (or pre-cancer, for those who prefer that definition for DCIS) is in the breast for years before it becomes large enough to be found by screening. Therefore it would not be surprising if some of this DCIS was in fact in your left breast last year, but just not detected because the amount was so small that it would not have been seen on imaging. But even if that's the case, this wouldn't make any difference at all to your diagnosis or your treatment.

As for what to do and your question, "I am not sure how a lumpectomy compares to a mastectomy as far as the risk of cancer returning and how much to weigh in my history of discharge and IDC from last year.", I would think that if each cancer is a separate cancer, then your diagnosis, prognosis and likelihood of recurrence aren't tied together. You have whatever recurrence risk you face from last year's diagnosis, and based on your treatment this year, you will have whatever recurrence risk you face from this year's diagnosis. Both are separate. What your recurrence risk will be from this year's diagnosis depends on the diagnosis itself, as LivinLife mentioned - things like the grade, the size, the aggressiveness of the DCIS, and the choice of surgery. Generally after a MX, the risk of a localized recurrence (in the breast area) is about 1% -2%, provided that the surgical margins are clear. With a lumpectomy, the risk of a localized recurrence can vary hugely, from low single digits to as high as 30% (or even higher) depending on the pathology and surgical margins. At your age, unless you have an extremely tiny non-aggressive DCIS, I can't imagine that radiation would not be strongly recommended after a lumpectomy - and that does cut your recurrence risk by 50%.

In addition to recurrence risk, the other consideration is a new primary breast cancer. You are 35 and have had breast cancer twice now, once in each breast. You hopefully have a long life ahead of you. Over the next 50 years, what is your chance of being diagnosed again? Unfortunately, having had breast cancer once (or even twice), doesn't make us immune from having it again. I don't know the risk after a 2nd diagnosis, but I do know that after being diagnosed one time, all of us have about double the risk (of the average woman our age) to be diagnosed again. With two diagnoses, what does this mean for you? That's something I'd suggest you discuss with your MO before you make your decision.

You might also want to look at these threads:

Topic: lumpectomy vs mastectomy - why did you choose your route?

Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX

Good luck with your decision.

worried01

Thank you for the messages and links. I'm impressed how much you both know about all this cancer terminology and appreciate the feedback. The information about the two diagnoses being separate cases is something my doctor didn't really mention so that is something to think about though I just wasn't ready to go through with the mastectomy at least for right now (unless my doctor really pushes for it in the future). This website has been really helpful reading about other people's experiences but all the information from the doctors and websites can sometimes feel a little overwhelming.

To answer LivinLife's question, last year I was diagnosed with Stage IA, right breast Grade 2 IDC ER+(>95%)/PR+(>95%)/HER2-, Ki67 15-20% associated with solid papillary Grade 2 DCIS without necrosis but the recent MRI did not show anything on my right side after surgery and radiation.

For the left side, I was recently diagnosed with solid papillary carcinoma in situ, ER +/PR +, intermediate nuclear grade, and no calcifications or necrosis were seen according to the report from the doctor. The doctor said the mass is very small so when I said I wasn't really ready for a bilateral mastectomy she was okay with going for the lumpectomy first and analyzing the tumor to decide next steps which might still mean a mastectomy but at least I will have more time to think about the options.

I hope it's not too personal of a question but were you scared before the surgery doing the mastectomy or was there a certain point when you read enough about the procedure or talked to enough other people that you felt comfortable with the decision? I'd like to possibly get to that point one day but definitely not feeling ready yet.

LivinLife

worried, I truly hope the pure DCIS diagnosis holds for you post surgery - meaning no signs of IDC. With such a small size I would imagine that is truly possible! As far as being scared. I had more stress and anxiety the first 2-3 weeks after diagnosis b/c this was all new to me. I first learned details of my diagnosis at the 1st surgeon's appointment, fitting in all the other appointments while learning about all of this, updating family and my closest friends and trying to work half-time at that point. Once I made the decision and felt good about the providers I'd be working with and knew one of my best friends was coming in from WI I was pretty good. At that point to be honest I was more kinda frustrated with having one more thing to deal with. My third of four siblings just died the October before (meaning two other siblings had already died) and I had been once again running back and forth to Ohio (4 hours away) often weekly or close to it to spend time with her and help where she needed that as I did with the others while also working half time and dealing with a host of my own medical issues. I stayed at my sister's during those weekends in the year and one/half and would not change any of it.... we did a lot and had good times and many laughs and I appreciated being able to help... priceless!!!.... I didn't regret doing the same with my other sister or my mom either though it still takes a toll.

So.... soon after my diagnosis (very soon) in late July I was more frustrated with all the appointments I knew would come with that so soon after running for other appointments I had March through June in Cleveland and Pittsburgh (3-4 hours away). I just wanted to be able to breathe and knew that wasn't an option (again) so just had to put my head down and bulldoze through like I've done so many times before.... I was worried about time off work too b/c I only worked half-time at that point due to all my medical issues, am self-employed which is quite expensive, etc. I do have colleagues though and they were great from a distance (COVID). Other than that my biggest worry about the surgery itself was more about anesthesia due to serious nausea I've had in the past and due to the host of other medical issues I have.

obsolete

Hello Worried, my goodness, you're so very young, and I'm sorry that young people like you are going through this. My daughters are nearing 30, so please forgive me if I address you accordingly

Having had Invasive Solid Papillary Carcinoma myself (with IDC grade 2 & DCIS grade 3), I know how this variant of Papillary can sometimes tend to grow more aggressively and present as Luminal B (molecular phenotype). Tumors smaller than 5mm often do not show up on imaging (MRI, 3D & ultrasound) and often present in multiples if along chest wall or periphery.

Pathologists describe the rarer papillary subtypes according to their pathology training, which can sometimes vary. If you continue to labor over the decision, it might be suggested that you ask for a 2nd opinion on pathology, as the solid papillary subtype can sometimes espand into the more aggressive pattern.

BTW, I had both LX and BMX surgeries, and I found the BMX to be less complicated, far less painful and more comfortable. 7 years later, I have absolutely no regrets. Hopefully, your mind will reach the point where you can make the best informed decisions for yourself. Hugs to you!