Any one else thinking about having a mastectomy for DCIS?

CarlaJG - Not sure where you live but I'm in the Chicago area and had great success with direct to implant. When I was diagnosed with DCIS back in October I knew immediately I would have a BMX. After meeting with the plastic surgeon he believed I was a good candidate for DTI but there was a chance that when they were in the operating room and the conditions weren't right I'd have to go the expander route. Thankfully everything went perfectly and I woke up with breasts similar to what I had. I was small chested but had implants (C cup) so not sure if that aided in the ability to have DTI or not. My recovery was surprisingly smooth and I'm almost 5 months out and have no pain, no issues, feel great and am doing everything I did even work out wise as I did pre-diagnosis. Definitely explore all of your options, none of these decisions are easy.

For what it's worth, after two lumpectomies for DCIS in my left breast, with unclear margins, my BS recommended a unilateral mastectomy and my second opinion recommended a third lumpectomy. I opted for a double mastectomy and sentinel node biopsy (with immediate, direct-to-implant reconstruction) a week ago today and just received the summary of my pathology report. The key takeaways are (1) sentinel node was clear; (2) DCIS was present on 9 out of 45 slides (one-fifth) of the tissue samples from my left breast, which I doubt they could have removed successfully with a third lumpectomy; and (3) while DCIS was not found in my right breast, lobular carcinoma in situ and atypical ductal hyperplasia -- areas of abnormal cell growth that increase a person's likelihood of developing invasive breast cancer later in life -- were present in my right breast as well as my left. Multiple intraductal papillomas were present in both breasts as well, which are also markers for increased risk of breast cancer. So I am feeling very good about my decision to have a bilateral mastectomy. While it wasn't an easy decision, it was the right one for me.

Good luck with whatever you decide.

Hi, dear ladies. Last September I was diagnosed with extensive DCIS(over 4.5 cm) low to intermediate papillary and cribriform. 2 opinions were pro lumpectomy, one opinion was pro-mastectomy. I chose the latter one and I did unilateral mastectomy last December. I am overweight, and may be that is why up to this day my doctor aspirates seroma fluid once a week. Last week I got fever and was admitted to the hospital. They did not find the abscess, but the cellulitis could not be excluded. But I didn't know that after UNILATERAL mastectomy I would go completely crazy out of fear for my contralateral breast. I got scared of taking tamoxifen, because my uterus had precancerous cells years ago. And my doctor never explained me my options( that if I did bilateral mastectomy, I would avoid taking tamoxifen). Now I am thinking about removing my other breast and my mother is going nuts because she thinks I am overdoing it. Did anyone have bilateral mastectomy, and how do they feel about it? Thanks in advance. Sincerely, me

Hi Drala

Thank you for your post. It was like reading an account of what I have been through with my B.S. My B.S. also lost it with me several times and also suggested several times that I needed a Counsellor and even made me several appointments. No! I needed a decent human being B.S. who would share their knowledge without imparting huge doses of fear, listen and not to judge me and make me the problem! So in the end I ended up firing that team of doctors because of his lack of empathy and unwillingness to answer my questions respectfully and truthfully.

I then went to a female B.S. and what a difference! HUGE doses of empathy and willingness to sit and answer as many questions as I had for her.

I think it is important that we trust our judgement and not take on their anger and frustration (We have enough of our own at this time). And it is our right to shop around until we feel comfortable (or as comfortable as we can be).

Hi Drala,

I'm curious to know what you've decided to do.  I agree with the ladies here that it is a difficult decision to know what course to take. You just have to be at peace with whatever decision you make. Everyone's situation is a bit different. Myself, I had two LX  this year then decided to do a MX last Monday because the two prior surgeries did not get all the cancer out. Huge disappointment. Just wanted to move on.  Did direct to implant.  So far so good.  I see my plastic surgeon next Monday for post-op appointment.. I have not made a decision about the meds.  Would rather not deal with side effects.

Having a good team of doctors is important. Totally agree with you Carol U!!! I have put up with a team of doctors and nurses who lacked empathy and compassion. (One positive note: At least the surgeons appeared to do a competent job with the surgeries.) You do not need that layer of stress on top of any decisions you have to make about what surgery route to go.

Drala, I hope everything turned out well for you. It looks like you haven't been on these boards in about 6 weeks. I hope that means you are feeling good and moving on.

Justkeepmoving: I felt the same way when I was dx with DCIS. I didn't feel like I was in the same boat as the people going through invasive cancer, like I couldn't be as upset or deserve as much sympathy as those who have to go through all the chemo, treatments, etc. It took some time to realize that I did have breast cancer but I was fortunate enough to have the the "best kind to have" as some say. As I was going to my first appt with the general surgeon, the idea of a bilateral mastectomy crossed my mind but I thought it was overkill. After the surgeon explained all the treatment options my gut just told me I wanted a BMX. The surgeon too told me if I was her daughter, that's what she would suggest. So, I guess my only advice is to do whatever will give you the most peace of mind. No matter what after this is all over for you, you'll still worry about it ever coming back. But, which option will make you worry the least. I had my bmx on Valentine's day and my exchange surgery a month ago. I think about cancer about 1-2 times a week now which is much better than every minute like when you get diagnosed. I wish you peace in making your decision. You're in the hardest spot now with just getting diagnosed, but you'll look back a few months from now and will be a better and stronger person than you are right now.

JustKeepMoving: It was hard for me to wrap my brain around the reality that "having the best kind of cancer" (dcis) includes tx options for someone with stage 4 cancer! The thought of BMX, although seemingly drastic, is indeed an option, and the one I chose (surgery was on 5/25). I had it in 2 areas of my right breast, grade 3, & being someone with fear of & resistance to medical interventions, a BMX (although physically altering) provided me with the least toxic of all the options, and to me, less chance of getting another breast cancer. It is a very personal decision to you as an individual. For me, now that I've learned from my post-op pathology that there was no invasion found in my lymph nodes, I am relieved that I can move forward in my life without worry of reoccurrence...

It was not easy. Took some soul searching for sure. Go inside yourself and determine the decision that makes most sense to who YOU are. This forum is here for you.

Justkeepmoving, I totally get where you are at...When my PC told me I had dcis in my right breast & would most likely need surgery & a hormone blocker drug, but "it wasn't really cancer, -Yet! I looked into it all, head spinning with information that I couldn't swallow -how can this be? All of these options seem far too extreme to treat something that's not really cancer...And the stubborn rebel in me wanted to do nothing! Didn't want to be probed any further, go through any toxic tx protocols, or join the warrior club! Being a "breast cancer patient" was not a desired identity for me.

After some sobering talks with trusted others & approaching my situation more pragmatically, with the desire to live my best life as long as I can, being my goal, I came to the decision to have a bmx w no reconstruction (at least for now). After "trying on" the different options in relation to who I am & want to be, it was the right choice for me.

Turned out that a lumpectomy w radiation wouldn't really have been an option for me as they found more dcis in the same breast & would most likely not get clean margins due to the size and location. I realized I was relieved that radiation was off the table & mastectomy best option. I decided to get a double due to my wanting to free myself from future anxiety, potential Tamoxafin & I had a need for physical symmetry -ultimately chose no reconstruction to avoid more involved & further surgeries, and now plan to stay flat for awhile.

In the end it was more than the right choice for me.I just got my post-op pathology report back. Nodes clear! My right breast had the dcis in 8 of 11 sections examined, & there were signs of atypical lobular hyperplasia in my other breast I had removed prophylactically (previously not picked up on mammogram or breast MRI). My BS said that is a precursor to potential invasive breast cancer! I made the right decision & now will focus on grief, healing and my recovery moving forward.

I hope this isn't too much information! I simply want to say, I feel you & the space you're in...I hope you find the right approach for you ❤️

thank you --

I met with my breast surgeon today. There are 3 areas that would have to be removed plus the nipple - this would mean extensive reconstruction (I'm barely a B cup).

So a single mastectomy is certain and a double mastectomy is probably what I'll have... I want symmetry and peace of mind. I'm almost positive I will get the DIEP procedure.

The hurdle will just be accepting that I can't ignore this and do nothing. I hope I'm asking the right questions and thinking in a logical manner. This is a small bump in the road and I want to come out the other side stronger. More dr appointments coming up this coming week including results from my genetic testing.

I worry that I'm being pig headed and just running to bilateral mastectomy without looking at all of the facts and information.

Hi. I am still at the very beginning stages. I have a DCIS dx, but waiting on an appt with a geneticist, and then an MRI. So far, DCIS is very small (I don't remember all the scores, etc on it). But here is what scares me the most......I don't really want the radiation, nor the tamoxifen. I would rather just have the UMX and be done with it. I know there's a chance of reoccurrence, but it's so much lower with the MX. I really have no qualms about, nor do I want reconstruction. I think I must be crazy because I can't seem to find anyone who shares this thought process with me. When I had gall stones, they took my gall bladder out. I feel the same way about this. I'm glad I had them, I fed my babies with them, now one of them is diseased, so let's get rid of it. I don't want to put stuff in my body, I wanna take stuff out! I don't care what my genes say, don't really care how big or small, etc. It could be dangerous? Then it's gotta go.

Help!! Am I crazy for thinking this way?

MamaRod - Not crazy at all! I had a DCIS with Pagets diagnosis last October and for me there was never a decision. I knew immediately I wanted a BMX, I didn't want to have to second guess and worry about every little thing. I was naturally flat chested and had gotten implants about 7 years ago so for me there was never any attachment to my breasts anyway. I had surgery with direct to implant the last week of November and haven't had any issues at all. My recovery was pretty seamless, I love to do yoga and I think the stretching was great for regaining mobility. I hosted Christmas Eve, went up North for a long weekend with friends and family for New Years Eve and haven't second guessed my decision for a second. Best of luck to you in whatever you decide!