Dcis -mastectomy or Lumpectomy/rad

Hey heartsong0380,

First I want to say - the anxiety that comes along for this ride sucks, and it sucks and will likely suck no matter what treatment option you go for. If you have any access to mental health support resources at all (some cancer centers even have it built in), I strongly recommend you use whatever is available to you.

The thing I wonder about is that depending what is discovered with the biopsies, whether that might impact treatment. For example, if it were cancerous and the doctors determined that chemo was recommended, in some cases, it is preferred to do chemo before surgery - this gives the doctors a chance to see how the cancer responds to chemo.

I think this is very personal. I would always tend to want more info before committing to a decision, but I do hate commitment ;) I think you should find someone outside of your family who you can really talk this through with. Someone who doesn't have a stake in it, or fears tied up in it, who can just listen to you and reflect back and support your processing. That could be a therapist or social worker, and if you can find one who has familiarity with breast cancer so much the better. But it could also be the right friend.

Interestingly, my experience was the same as lgh524 almost exactly ( but without the MRI or hereditary results back to assist with decision making). I wanted to pipe in as well as almost all posts here I see are from those who have chosen differently. I am very happy with my choice… and I heartached over it even though i knew what was recommended by the experts. I didn't know it at the time , but I would have needed radiation anyhow if I'd chosen mastectomy as it turned out 2/3 lymph nodes had cancer which was only discovered with the sentinel node biopsy as they were clear on ultrasound. I know many people who have had mastectomys and while they do not for a moment regret it, they do have some significant side effects from surgery.

Sensation differences for either (what are they), what does your surgeon think the outcome will be as far as aesthetics, possible future surgeries (what happens if you have a recurance or new breast cancer, what sort of reconstruction are you able to have if you choose and can it occur at the same time or not, could you be in for additional surgeries if things don't go as planned , how will they monitor you etc. All of this played in to my decision. My surgeon was also pretty confident it was small enough and in such a location that she could shift some tissue around and the change wouldn't be super noticeable for me. She also told me I could change my mind as soon as a few days out and she would make a mastectomy happen for me. It also helped me make my decision knowing that the plastic surgeon wasn't available for another month and half to do reconstruction surgery at the same time as the mastectomy and she did not recommend I wait to have it removed which left the option of multiple surgeries (mastectomy followed later by reconstruction) this ultimately impacted my decision a lot as well. I hope these questions assist you with some questions you maybe haven't yet thought of.

Either way just sharing my experience as well and my only actual advice is to ask as many questions as you need to your team and others to make a decision…. and then don't look back- be all in. That was the advice my counsellor gave me and it was sage advice. All the best

Hindsight is wonderful but it occurs after the fact. Everyone is different and no one has a crystal ball. Look at the facts , evaluate your personal circumstances and know that medically the procedures put you in the same position. A mastectomy is a big surgery and if you choose recon, it’s even bigger with the possibility of tweaks and revisions as well as lymphedema risks. Choosing a bmx over lx will give you almost no advantage against future recurrence but will involve major surgery and its possible complications. I know everyone is looking for an advantage or even a promise against recurrence. Sadly, it doesn’t exist. Take care

I glad that you are at peace with your decision and did what eases your anxiety. I was dx with DCIS grade 2 at age 42 as well. I had just the lumpectomy a year ago, although the medical team wanted me to do rads and tam in addition to the surgery. I experienced pressure from family as well as medical team to do more, my sister even pressured me to amputate for a small preinvasive cancer. I'm well, and very glad to not have to have gone through so much pain and surgery, with continued surgeries in the future as well as no guarantees, as the odds of it coming back are almost exactly the same for the smaller surgery in most DCIS cases. I like having the option of doing rads and a second lumpectomy if I ever have a recurrence. It's all such a crap shoot; we all have to do what feels right for ourselves. Wishing you well as you recover.

Hi all,
I am glad to find this post. Lots of love and care for all of you.

I am 37 years old and have been diagnosed with DCIS high grade in my right breast on Aug 16 2023. I am planning to do double Mastectomy.

@heartsong0380 thank you for your detailed info about the post recovery. It helps me to be prepared for the surgery. Wish you all good health and fast recovery. Did you know that you had invasive cells prior to surgery?

I had a lumpectomy for a small area of low grade DCIS on my left breast 18 months ago at 41. I was given the option of radiation but understand you can only radiate an area of your body once in your lifetime and wanted to have the option if something more life threatening were to occur. I tried tamoxifen but had so many negative side effects that I only used it for 2 months. I just had another bad biopsy at a follow up - intermediate DCIS on a larger area. The surgeon said she could do another lumpectomy but I’d really need to radiate. I’ve decided to have a double mastectomy and though I’m dreading it, I am looking forward to avoiding the stress of the check ups. It’s been a rollercoaster but the previous experience with the lumpectomy helped me start a bit of a disassociation process and make peace with the idea that I may need to lose them. They sure aren’t perfect but I must admit I’m a bit attached 🤣. Reading through this forum, especially bojo’s comment, is further helping me come to peace with this decision. Thank you for sharing! I think because of the lack of a holistic approach to medicine, we end up robbing Peter to pay Paul. It’s a success story if the breast cancer doesn’t come back and we’re used as a positive statistic, even if the tamoxifen causes endometrial cancer or the radiation causes lung cancer years down the road.