Dcis -mastectomy or Lumpectomy/rad
I am 42 yrs old and was diagnosed with dcis grade 2 in my right breast in April. I had a follow up breast mri which showed other suspicious areas that should biopsied with mri. I have the mri biopsy scheduled but I feel like skipping it and just having a mastectomy instead. My MD adviced of the research regarding outcomes and that the mastectomy has the same reoccurrence rateas staying the course and having a lumpectomy with radiation to follow. But I am feeling like it would ease my mind better since my anxiety is already through the roof. I do not have have any genetic variants per my genetic report. Should I stick the course and do the 2nd mri or just go ahead to the next step all together?!? My family wants me to do the lumpectomy/rad so while I know it’s my decision.. it’s making it difficult to decide what to do next with at least some certainty.
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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.
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I was diagnosed with DCIS grade 2 in February and I’m 36. I felt the exact same way as you and felt maybe I should just do the mastectomy. After meeting with numerous breast specialists they all agreed that the lumpectomy with radiation and hormone therapy is what they recommended. For the area of DCIS I had, they said the mastectomy would be a very drastic decision that could come with many more complications and might be completely unnecessary as you could be completely cured after your lumpectomy. But it’s completely a personal decision and whatever makes you feel most comfortable going forward is what you should do. I also did genetic testing that showed no variants, and an mri that did show suspicious spots, the mris are so sensitive and pick up everything. I went ahead and did the mri biopsies to help me make my decision for the next step. My other areas were nothing concerning luckily so I went ahead with the lumpectomy. I did feel like the mri biopsies helped me feel better about the decision I was making. Just sharing my experience, hopefully it helps knowing you’re not alone
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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
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heartsong380
I have just logged on again today after 12 years of not worrying about my cancer.
I feel I need to share my story,
They say hindsight is 20 20,
I wish I had done double mastectomy at the age of 40.
I wish I had someone tell me what they had gone through
I was 1st DX with high grade 3 DCIS in 2005 , 40 yrs old 1st mammogram, in my left breast, did radiation 7 weeks of radiation 35 treatments. Had lumpectomy 2x to get clear margins. Went on tamoxifen for 5yrs.
In 2011 dx with right breast DCIS had same treatment lumpectomy 2x to get clear margins, 7 weeks radiation 35treatments. Was on tamoxifen in 2005 for 5 years. Went back on tamoxifen in 2012 for 1.5 yrs but now it was wreaking havoc in my uterus, had to have a complete hysterectomy in 2013.
Fast forward to 2023, and was just dx with right breast cancer high grade DCIS again! Oh and to add insult to injury I was also dx with a new primary lung cancer in the same week and just had surgery to remove a 1cm nodule. I am fortunate that it is not a MET, but they they believe since I am a non-smoker, they think but can’t be 100% sure that it’s from the radiation I received to “treat” my DCIS on my right breast back in 2011, which is now BACK !!
So in my opinion , if you are DX with HIGH GRADE 3 NECROSIS DCIS, get a double mastectomy. I know this sounds like a radical decision, for “JUST DCIS” but from where I sit , recovering from lung surgery and thinking about my appointment tomorrow with a breast surgeon to discuss my options for my reoccurrence of “just DCIS”. I have made the decision to get a double mastectomy with immediate reconstruction with flap, but I don’t how my radiation plays in my reconstruction, I will find out tomorrow.
I remember just hearing over and over from friends and relatives on both occasions “it ”JUST DCIS” the reoccurrence is low, your being ridiculous, don’t get the mastectomy” So if someone says to you it’s JUST DCIS tell them respectfully, ITS STILL CANCER
I WISH THAT SOMEONE JUST TOLD ME JUST DO IT GET THE DOUBLE MASTECTOMY FOR “JUST” DCIS .
BoJo
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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
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There is so much to think about. It might be easier once you have done the mri. Occasionally, there is so much DCIS or so many spots of DCIS that lumpectomies are not successful at achieving clear margins. Please consider that as well. Multiple lumpectomies are not ideal either. A mastectomy, although more drastic cosmetically, is not always difficult to recover from at all. Everyone’s experience is unique. Reconstruction can be. Explore everything that you need to know and then base your decision on your needs and your situation. Recurrence is still quite rare regardless of treatment choices.
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