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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.

Comments

  • salamandra
    salamandra Member Posts: 726

    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.

  • yippeekiyaymf
    yippeekiyaymf Member Posts: 25

    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

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,648

    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

  • tb90
    tb90 Member Posts: 279

    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.

  • heartsong0380
    heartsong0380 Member Posts: 3

    Hi all!

    I am 2 weeks post surgery. I had a skin sparing double mastectomy with diep flap reconstruction. It was a 10hr surgery with 2 days in ICU then one night on the regular floor prior to discharge. Everything went well and I am on the mend. No issues with pain- being managed with regular Motrin and Tylenol. I am definitely surprised by how little discomfort I am experiencing. I was discharged home with 6 drains- 2 in each “breast” and one on each side of my abdomen. I have used my recliner for sleeping since I don’t trust getting in and out the bed( I have the prop pillows but the leg swing thing hurts like hell with the lower drains). One thing they didn’t tell me… getting to the bathroom in time to pee- it’s a complete no go! So I am wearing the incontinence panties until I can move faster. Because of the diep flap, which was taken from my stomach, walking is hunched over and extremely slow, but no pain. I am straightening up more each day and the speed is improving, but not enough to make a bathroom run. I am in a binder for the next 6 weeks (around the abdomen)- so far not too much of an issue except some rubbing last week on the drains. I had my post op appointment last week and the pathology report found more invasive cells than noted prior to surgery so I am had a sentinel node biopsy this morning to remove nodes to make sure there has been no spread( a mag trace was done at the time of initial surgery in the event the pathology had this result). I had the drains removed today as well. So far, I am satisfied with how the new “breasts” look. Still have to get nips later on when they are healed if I want them(or I can opt for 3d tattoes). Overall, my experience has been better than I could have imagined. I am super grateful to all the responses that I received here in making this decision. Soo much information is thrown at you at once that it seems overly overwhelming. As I sit here 2 weeks post surgery, with no pain, limited mobility but being able to see/feel my body get stronger daily, I am humbled by this experience and thankful I was able to make the best decision that I felt in my gut would be right for me. @Tillyrose, as you take in everything, listen/feel what resonates with you the most as you choose your path. Once you are clear on what YOU want or need at the end of this journey, it becomes easier to make what seems like an impossible choice at times. Friends and family mean well, but I have learned (with help of my therapist) that I was not responsible for making them feel “safe” during this time when what I needed to be doing is making ME feel “safe” again. I pray good health, sending you love, a virtual hand to hold, and a sense of peace during this journey for you.

  • random_wmercado8507
    random_wmercado8507 Member Posts: 11

    I was just diagnosed with the exact same thing as she was two weeks ago. The breast MRI found two more locations of which they would like me to further biopsy under MRI. I have had multiple biopsies already in the past week. I truly would not want to go on the radiation and tamoxifen and worry about having to continuously biopsy every location that they see moving forward, but also having to remove both breasts as a big decision. I canceled the appointment for today for the MRI biopsies. I think I might be leaning towards double mastectomy to play it safe such a hard decision and the diagnosis is still so new and shocking.

  • thrownforaloop
    thrownforaloop Member Posts: 5

    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.

  • tb90
    tb90 Member Posts: 279

    Thrown:

    Just to clarify for others, recurrence rates are higher for lx only without radiation. Lx with radiation and mastectomy have similar rates.

  • al0225
    al0225 Member Posts: 5
    edited August 2023

    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?

  • Hi to all of these brave women!

    I was diagnosed in may 2023 and had bilateral mastectomy and reconstruction with expanders and skin/nipple sparing in July. As per the doctors all cancer cells were removed, so I didn't have to do rad or chemo, thank God. But after the surgery, my experience was different. I was in so much pain that I could barely move. Now, 2 months later, I am still recovering, doing limpho therapy, but feeling way better. My next surgery is scheduled for Oct 2023. I hope that all of you reco er promptly and with no recurrence at all.

    May God bless us all!

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    moderators Posts: 7,685

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  • mrsdsjourney
    mrsdsjourney Member Posts: 1

    A few important things that I have learned from others who have had breast cancer is that the decision has to be yours. It has to be something that you can live with. No one's situation is exactly the same. Others told me about their stories, but I had to do my research, discussions with my doctors, and soul-searching before I made my decision. I had DCIS stage 2 in the left breast, but I had previously had issues with both breasts. I decided to have a bilateral mastectomy with diep flap reconstruction. I have no regrets. I told my doctor that he was a nice man, but I didn't want to keep seeing him. I hope that everyone who is going through the process recovers well.