Changing surgery choice to unilateral

4girlsmom
4girlsmom Member Posts: 27
edited September 2016 in Just Diagnosed

I have DCIS and IDC in one breast and a chek 2 pathogenic mutation. I am scheduled to have bmx with latissmus recon and implant in less than 2 weeks but I am now thinking I should do a unilateral instead. I just don't want to lose the sensation if I don't have to. The Chek 2 expert I consulted with and two medical oncologists all think I can do unilateral, but I live in a city where nearly everyone does BMX and both my surgeon and PS want me to do the BMX so I "won't worry." However, I have dear friends who did BMX and still had recurrance, so I think I will worry no matter what. Has anyone downgraded their surgery just before DDay? How do I access photos of unilateral recons? I have never seen anyone with unilateral recon; I know so many women who have had BMX recons but absolutely no one in my life did one. I am thinking I could do a simple direct to implant unilateral and then keep my options open to do the prophylactic mastectomy and recon later and make them match. Or to go back and do a DIEP if the implant looks awful (I have enough tummy for one DIEP but I was told I didn't have enough for 2, which was a big surprise)

But am I thinking clearly? This is so hard.

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  • debiann
    debiann Member Posts: 1,200
    edited August 2016

    This is a difficult decision that I struggled with too. In the end I chose a bmx with DIEP, however I had enough tummy for two. If I had needed to use two donor sites I think I would have done uni. My tummy has been left rather numb, I wouldn't want that in another place too. I am happy with the cosmetic results. The breasts look and feel natural and I have regained some sensation in the breasts. My breasts and tummy are about equally numb, which is a downside. Miss being able to feel kisses or strokes to these areas the way they used to feel.

    If symmetry is an issue for you, I do think that flap recon can better match a natural breast that implant, however that is only my opinion, you would need to consult your surgeon about that. If you do a uni they can give your natural side a lift, however that requires messing with the nipple and then you lose sensation anyway. Also, after any surgery you run the risk of lumps from fat necrosis, which are totally benign, just worrisome and may need scanning to identify. I've had lumps checked twice that turned out to be fat necrosis. I think finding these lumps in a natural breast would have caused me a lot more worry.

    I don't know much about the latissmus recon, but I believe it involves moving a muscle from the back to the front? I would want to talk to others to see how this affected them afterwards. I know my tummy will never be the same and they only took a tiny piece of muscle (although diep is not supposed to use muscle, sometimes it is necessary for them to use a postage size piece of muscle). If you are only doing one, a DIEP is probably better than latissmus. If you want to do the other one at a future date, they can then use another donor site. That was what my PS recommended when I considered the uni.

    I don't know much about the risk of recurrence with having the mutation, but I do know that it is nice to not need mammograms anymore. I will be getting a breast mri at three years out. My MO and PS were ok with uni, my BS leaned toward BMX. Good luck to you in your upcoming surgery.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2016

    I think your reasoning is quite sound and you should go with your gut. As you mentioned, you could always do the other side at a later date.

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2016

    I believe you are thinking clearly.

    You should not have a BMX because you are being pushed into it by your doctors.

    You should not have a BMX if you are uncertain - because once done, there is no going back.

    Over time, you might decide that a BMX is exactly right for you, but if you want to make this decision through a 2-step process, i.e. have the UMX first, that is perfectly sensible and it's what many women have done. Or you might decide, after the UMX, that you are fine that way.

    I had a UMX with implant reconstruction almost 11 years ago and I am remain happy with that decision. There seems to be a trend these days towards having a BMX (having prophylactic MX of the healthy breast at the time of the MX surgery of the cancer breast) but that was not the case when I was diagnosed. Many women back then had a UMX and most were happy with the result. That's not to say that some women didn't decide later to remove the second breast, but most didn't and that is a decision that can be made later.

    As for pictures, there are some pictures available on this site: http://www.breastcancer.org/treatment/surgery/reco...

    There also is a private Picture Forum that was started by someone on discussion board; I haven't read anything about that forum for quite some time but I'm assuming it's still operational. For security reasons, individuals are not accepted as members until they have a posting history on this site, which you don't yet have. Still, here is a link to a discussion thread about that website. The information about what is required to request access (it can be done through a PM on this site) is all explained in the first post: Topic: BEFORE REQUESTING ACCESS FOR PICTURE FORUM

    The Young Survival Coalition used to have an extensive gallery of reconstruction pictures; I don't know what the rules are for gaining access, but you might want to join their board to find out: http://community.youngsurvival.org/

    Hope this helps.


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  • 4girlsmom
    4girlsmom Member Posts: 27
    edited August 2016

    Thank you so much for your feedback. I have pulled the trigger and downgraded to a unilateral MX. I feel so relieved. Deeply grateful to everyone who has posted their experience on this website- it helped! I know that one day I might have to go in and take off the healthy breast if it shows evidence of cancer but for now I feel much better keeping it and its sensation and living with that risk. Being less than symmetrical is ok with me if it means I can keep the feeling of my natural breast for longer. I know many women feel differently but I now realize that this is the right choice for me

    Now to redo the reconstruction plans- I was doing latissmus on both sides but perhaps now it will make more sense to do direct to implant. It is too late to do a diep- that would have been another surgeon.

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  • 4girlsmom
    4girlsmom Member Posts: 27
    edited August 2016

    thank you so much for your post and advice! Hearing your first hand experience is so valuable

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  • 4girlsmom
    4girlsmom Member Posts: 27
    edited August 2016

    Beesie thank you so so much for this. I am now having only a unilateral and my surgeons are ok with it. So good to hear from someone who did do unilateral and who is happy about that choice over a decade later

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  • vettegirl
    vettegirl Member Posts: 235
    edited August 2016

    I had a uni too, but had a lumpectomy in my second breast.  My left breast that I lost-has an implant and I had lat flap on that side.  My right breast that was the lumpectomy-they gave me a lift and moved my nipple-and I do still have sensation in it.  It also has a very small implant under the muscle to give me symmetry.  My left breast is hard as a brick still-surgery was almost 2 years ago and I am still tight from the lat flap.  I am so glad that I kept one breast as it still looks and feels natural and is mostly all mine.  I would be totally depressed with two breasts like my left one.  This was the right decision for me for sure to save one.  My BS said she had never had a patient who had just a uni, but she is pleased with how it turned out, as is my PS.

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  • BethL
    BethL Member Posts: 286
    edited August 2016

    4girls... It's a hard decision. I fumbled around a year ago with the same situation as you. But it was my 2nd cancer, 10 years after my first. It was then I found out I too had chek2. This put me at at least a 25%-60% chance if a contralateral cancer (which is the same for you), mine was in the same side but knowing my risk of cancer was 25%-60%, I decided in a bmx instead of uni and don't regret it at all. MRIs missed my latest cancer twice. So certainly this is your body and you should do what's right for you but the question to others is...if you had a 25%+ chance of getting cancer in your other breast, would you keep it?

    Not trying to talk you into one or the other, but having chek2 and cancer twice already...wanted to make sure you were aware of just how much more risk there is for you. I wish I knew my increased recurrence rate after my first diagnosis. I would have chosen a different surgical plan. For now, you're doing the right thing if you're not sure. As someone else said, you can always go back for the prophylactics mx if you decide. Hugs. I know your struggle all too well

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  • 4girlsmom
    4girlsmom Member Posts: 27
    edited September 2016

    Wow- thank you for this.

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  • 4girlsmom
    4girlsmom Member Posts: 27
    edited September 2016

    Thank you so much, BethL. It is interesting that you heard the chek2 contralateral risk is so high. I was given much lower odds- 25% without tamoxifen or the like and half that or less if I take tamoxifen (which I plan on doing after surgery, though I have heard the side effects can be very difficult). One medical oncologist told me my risk of contralateral bc was only .2% a year, but since they have so much to learn about chek2 I appreciate those predictions could change with further research. I completely understand why you did the bmx. I was about to, and I know there are reasons why it would be justified, but I just don't think I am ready yet. I feel content (with great sadness of course) that I must lose the breast with cancer; I just can't bring myself to lose the "healthy" one just yet.

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  • 4girlsmom
    4girlsmom Member Posts: 27
    edited September 2016

    Thank you so much, vettegirl. Hearing your story gives me a lot of comfort.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited September 2016

    4girlsmom, I have Chek2 100delC and originally had a unilateral MX last September. Since I had to have radiation I had to wait quite a while to do reconstruction. In the meantime after taking time to think about it, had a mammogram on my remaining breast (only benign findings) and discussing with my breast surgeon I decided to have the other breast removed. I do miss having any sensation but my risk of a new cancer was 29% and I just found that, personally, I couldn't live with the stress. I totally respect your decision and I assume you will have alternating mammo and MRI every 6 months so you should be fine. This is a completely personal decision and once your breast is gone there is no changing your mind.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited September 2016

    BethL, which Chek2 mutation do you have?

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2016

    My sister and I both have Chek 2 1100 delc mutation. I had a UMX almost 5 years ago - did not have genetic testing as I was first in family to have BC. Then my mom and sister were also diagnosed within 3 years. My sister had a Lumpectomy and after finding out she had Chek 2 it was HIGHLY recommended at the University of Michigan that she have a BMX which she is having in October.

    I have been advised by both my breast surgeon and my Oncologist, also at the University of Michigan, that I need to seriously consider having my other breast removed. My Oncologist said he has spent his career convincing women to save their breasts, but his recommendation to me was have it removed.

    Had I known then that I had Chek 2, there is no question I would have definitely had the BMX. And every time I am waiting for my mammogram results for the remaining breast, my anxiety is through the roof. At that time I always think the same thing: "No breast is worth this much anxiety."

    Sending my best....


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  • 4girlsmom
    4girlsmom Member Posts: 27
    edited September 2016

    Thank you Molly 50 for this. I know there is a chance I will go your route and take off the other breast in the future. Right now I just feel more stress and anxiety from taking it off prophylactic ally than I do from fear around future screening. I may very well change my mind. How did the second surgery go for you?

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  • 4girlsmom
    4girlsmom Member Posts: 27
    edited September 2016

    thank you Denise G. So sorry to hear about your mom and sister also having the BC and Chek2.. I have four daughters and am really so concerned about them. Thanks for that input re your doctors as well. This is all so confusing to navigate.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2016

    4girlsmom - it is all so hard to figure out.  In my book, do what is right for you.  You can figure the rest out later!

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