Single or double mastectomy????

Saskia123 · September 2020

Hello

My name is Saskia and I am 34years old. I was recently diagnosed with DCIS in my left breast and am getting a masectomy in a few weeks time.

My question is do I have a single or double mastectomy. My surgeons support both options as they have said I'm at a fairly high risk group but don't have the genetic gene.

I know research shows that having a double doesn't reduce my risk but im actually not to worried about that.

What is making this decision hard for me is that I only want to do the surgery once and not have to go back and do it again.

I feel that if I have a double my symmetry long term would be better. Beacuse I'm only young I feel my body shape will change a lot over my life time.

What is making me question my decision is....am I willing to give up sensation and feeling for symmetry and probably reduced surgery's to correct symmetry or possible recurrence of breast cancer!!?

Any advice or personal experience would be greatly appreciated.

Thanks

Saskia

bcincolorado · September 2020

Hi Saskia,

I am so sorry you are going through this so young.

I chose to do a one sided MX because I wanted at least part of me to be "me".

You can have the non-cancer side reduced and lifted if you chose so you are not "lop-sided" if you choose to have reconstruction. I personally did not do that.

Am I lop-sided? Definitely? At this point 10 years later, I really do not care. I was more self-conscious about it at first but I often wear clothing that covers both sides so really it is not too noticeable to people who do not know me and know.

Every person has to make the decision best for them. Do you have a family history at all? Do you know your type yet? I had no family history and what my breast surgeon called "nice cancer" since it could be treated without chemo even and took hormonal meds for 10 years. I still am seeing onco and being checked on my non cancer side just in case.

Best wishes to you in you surgery. I know this part is the hardest to get through at the beginning with decisions to be made.

Moderators · September 2020

Dear Saskia123,

Welcome to the BCO community. We are sorry for your diagnosis and the decisions that come with that. We are so glad that you reached out to our members for support and information that hopefully will help you as you continue forward. Please let us know how we can be of help as you navigate your way around the discussion boards. We are here to help you to get connected.

The Mods

marie914 · September 2020

Hello

I’m still fairly new. I just had my left mastectomy two weeks ago. I decided on one side for a few reasons. I wanted to have one breast my own with sensation in the nipple and breast. I also wanted to have an easier recovery and having only one side affected did and is making my recovery easier. I can always go back and have a second mastectomy with a matching implant but at least I know what to expect. I had an expander put in but if I end up with something wrong in right breast I would perhaps think about the DIEP surgery. I didn’t want to have that surgery now since it is a pretty difficult surgery and then if something did happen to right breast I couldn’t have it again. A DIEP is once done you can’t go back. I thought this bought me time to decide what to do and saved my skin at least.

Many people have bilateral mastectomies and I did give it some thought but just decided for me to wait. There is no right or wrong answer.

GraceOforiwa · September 2020

Hi Saskia and all the other survivors,

I am also new here and I was diagnosed at the age of 26 and I am now 38. I decided to have a double mastectomy, simply because the whole experience was traumatic for me at that time and the thought of going through multiple MRI's and test upon tests was tough. Also, no one in my family has been diagnosed before and since then, still no-one has been diagnosed which is a blessing.

Having a bilateral mastectomy is not an easy decision to make so I ended up having 3 surgeries instead of 2 and I was also concerned about how life would be afterwards. But I was blessed. Later that year I met my husband and we have now been married for 12 years with 3 beautiful children.

I think you should take your time and make the best decision for yourself and remember that this is your journey. We all have a different journey so trust your gut and make a decision that you will be proud of. No pressure because this is life changing.

Stay beautiful and I am so grateful to have found this community.

LiveLoveLaugh2020 · September 2020

Saskia sorry for your diagnosis. I was diagnosed at 34 with DCIS as well. I originally was set on a lumpectomy but after thinking about it for a few weeks I decided on bilateral nipple sparing MX. The major factors were my age, and not wanting radiation or tamoxifen. I'm not going to lie it was a very tough process and such an emotional roller coaster ride but I'm happy with the decision I made. I ended up having LCIS in my "normal" boob so that just solidified things for me! It's a very personal decision and only one that you can make. Follow your heart and do what you think is best for you. Best wishes to you.

LivinLife · September 2020

Welcome though sorry you need to be here! Very important you make your own decision about this Saskia... It's also great you posted the question so you can get feedback to help you consider options and various experiences people have had. That was so helpful to me as I gathered info. of different kinds to make a decision.

I chose a bilateral mastectomy and had SNB at the same time which is typically how that goes. Initially I was diagnosed by diagnostic mammogram and later a breast MRI confirmed the Grade 3 DCIS with comedo-necrosis. The former showed about 3.5 cm at largest dimension. the MRI then showed nearly 5 cm with some of that being DCIS and some of it undetermined. Finally surgical path showed very different DCIS size with other benign, and precancerous stuff, along with lobule involvement which I still don't understand - MO was unable to answer those questions.

I have scleroderma so was unable to have radiation so was told I had to at least have an MX though I knew by that time I already wanted the BMX. I do not heal well though figured I would do all right with this surgery, whichever I chose. That being said, like you, I also thought about future. I've seen so many on this site that had to go back for additional surgery for margins or recurrence or issues with implants, etc. I knew well before this diagnosis reconstruction was not an option for me given all the stories I heard on my scleroderma forum. During this current exploration I was also clear I had to minimize as many future surgeries related to breast cancer as much as I could due to concerns about healing issues as I get older. I realize I have limited control over these things too.

I considered the symmetry too. I knew I would do better with no breast than one breast. My breasts were also fairly large. If I was an A cup maybe I would have thought different. I was concerned about things like lopsided weight and just looking in the mirror would have been concerning to me - again age and gravity are not kind so that factored in to. Go to breastfree.org and you will see some pictures as well. I'm embarrassed to say this though I did not realize until exploring some on line yesterday that my surgeon did the aesthetic flat closure. I had heard of that just never bothered to look up what that actually was other than realizing it had something to do with tightening up skin. My surgeon and I had talked about the typical two incisions over each breast you will see in many pictures and what I ended up with was so different. It was fairly surprising me to see such a long incision a week later once the negative pressure wound vac was removed. I also new soon after the incision was/is a fairly straight line, was going to heal well, blend well, etc. I am quite pleased with it just had to get used to the difference. Just something to think about asking for if you decide to go BMX without reconstruction. You will want to find a surgeon who does this and has done many. I accidentally came across a website yesterday called notputtingonashirt.org where they have a directory of surgeons. You'll see pictures too - which speaks to the importance of getting a good surgeon or plastic surgeon if you decide to go that route. I'm glad my surgeon did this though initially it took some getting used to. I prefer this to the two separate incisions and will like it even more as it heals and blends more.

Single or double mastectomy????

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