DCIS Surgery or Clinical Trial

VictorsGirl

I was recently diagnosed with Grade 2, hormone receptive DCIS. I have seen two different surgeons with two different opinions. I am going to seek out a third opinion. I have an MRI scheduled in a few days. The DCIS is 4cm and just 1cm behind the nipple. I've heard everything from lumpectomy to mastectomy to clinical trial. I'm scared and cry a lot. I go back and forth between surgery and COMET clinical trial. If it turns out I need a lumpectomy then I can deal with it, but a mastectomy is very difficult for me to accept. I've read for hours and hours on the internet and I can't seem to get a concensus as to whether or not a clinical trial is a good way to go. The more I read the more torn I am. My heart is breaking and no matter how much my husband loves me, he can't completely understand what I'm going through. He doesn't get how much my breast or loss of affects how I will see myself. This is all so new an it all just feel like I'm stuck in a horrible dream

Ingerp

Bottom line is this is your decision. Your doctors can lay out tx options and probabilities of various outcomes but it’s up to you. Different women have different risk tolerances and biases heading into this decision. What I can tell you is that whatever you decide, be comfortable with that decision and don’t second guess yourself. Once you have a plan in place, even if it’s to go with the clinical trial, it’ll get easier.

Luckynumber47

You will eventually get to a place of acceptance. Ok, I've got this precancerous thing lurking in my body. What is the best way for me to deal with it so it never comes back and I never have to deal with it again (or at least stack the odds in my favor)

Right now it is not invasive. Are you ok with waiting and hoping it never becomes invasive? Are you ok with all the follow up exams? In the beginning I thought I was the kind of person who could cope with that increased level of risk but this whole thing really shook me to my core and I'm glad I was very aggressive.

If you don't want mastectomy the odds are very good you will not need one and you can put that worry out of your mind. Find a breast surgeon (or involve a plastic surgeon) who takes pride in leaving the breast as beautiful as possible. Ask about different placements for the incision. Some can be nearly invisible.

Take a deep breath. Eventually you'll get used to the idea of what's going on in your body and you'll know how you want to treat it. Just take the time to get there.

VictorsGirl

Thanks Luckynumber47.The problem with a lumpectomy is that looking at the mammogram it looks like the DCIS is about 1cm behind the nipple and close to the skin. That is why the surgeons are talking mastectomy.

Luckynumber47

what about doing the mastectomy and a DIEP flap reconstruction?

VictorsGirl

If I need the mastectomy, there should be enough skin left to put expanders in and no need for a DIEP flap. I ammost concerned about the nipple reconstruction and the scarring, not to mention all the pain.

Moderators

VictorsGirl, we just wanted to chime in to say welcome to BCO, and thanks for sharing. Here is an article on Nipple Reconstruction: What to Expect, in case it could be helpful.

Kernaz

I had two lumpectomies for a location right behind the nipple. Sounds similar to yours. We didn’t get clean margins so I’m doing mastectomy now, losing the nipple too. You can start with the lumpectomy and see if you get it....if you don’t at least you’ll know you tried. At my first consult when they said mastectomy was an option it sounded so extreme...but one gets used to it, I’ve accpeted it now, feel glad I can treat it. And the good thing is no radiation

BWH5

I was just diagnosed 11/30/18 and you sound just like me. I opted for the comet study last week. Got the Active Surveillance group. Now I am wondering if I should get the surgery. I too do not want a masectomy and my surgeon feels like a lumpectomy may not be possible but she will try. Mine is also close to nipple. About .7 cm. And DCIS is 6 cm.

Do you mind updating what you decided and how you are doing now?

Thanks