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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Thank you everyone for your responses, which I have given much thought and I found to be soo helpful. I felt less “alone” in this process so I thank you all from the bottom of my heart. I did have the 2nd mri biopsy, just to cover my bases as suggested and I have decided to have the double mastectomy with reconstruction. Surgery is scheduled for next month. I did get a therapist and this I think has helped the most with my anxious feeling and making sure I am addressing what I need from all of this. Sending prayers up for all of you in whatever phase of your journey you are in.
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Heartsong,
I hope you are doing well post surgery and you will share your experience when you are ready. I was given a DCIS diagnosis (high grade) a few weeks ago and now in the throws of meeting with all the docs and making the decision about which path to take. It’s overwhelming!
Sending love,
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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.
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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.
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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.
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Thrown:
Just to clarify for others, recurrence rates are higher for lx only without radiation. Lx with radiation and mastectomy have similar rates.
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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?
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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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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.
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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.
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Hi @biz.kenney2 and welcome to our Community!
We're so sorry for the reasons that bring you here, but we're so glad you've found us. As you can probably already tell, our community is full of amazing members always willing to offer advice, information, encouragement, and support — we're all here for you as you gear up for surgery. Have you scheduled your surgery yet?
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