Newly diagnosed--one mx or both
Hello fellow fighters,
I just got all of my body scans back clean and tested negative for BRCA gene. Dr said i was not a candidate for lumpectomy due to the fact that my biopsies showed a mass and an additional spot that they are still not sure is in lymph or not. Could be in fat layer and not lymph, but she wont know until they remove via surgery. She also mentioned that some people are able to get the immediate reconstruction at time of mastectomy, but that because we are not sure yet of lymph involvement and treatment plan, most plastic surgeons prefer to wait on reconstructions after radiation (if that should apply). With all of that weighing on my mind, i am now completely overwhelmed with deciding on A---should i do a double (would be for asymmetry and cosmetic purposes mostly) or just do the one side for now. Whenever i do have the reconstruction, what is the best option to go with, I researched both regular implants and also the DIEP, etc.
Just wondered what others have opted for and if you are happy, or had issues, etc etc. My apt w plastic surgeon is 11/21 so have some time still.
My brain is too full and all of this is so overwhelming and exhausting!
Thanks!!! Appreciate any feedback.
Traci
Comments
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I understand your dilema, as I was in the same position in 2014.
My BS recommended a UMX, but was happy to do a BMX. The main reason for my choice was that to do both would mean I had double to heal, and in my mind double risk to delay radiation. In the end it took a week or two extra to completely heal and be ready for RX. I wouldnt say I liked being uneaven but I am happy with my choice. I was going to have reconstruction in mid/end 2015, but this was brought forward to earlier in the year when DCIS was found in my remaining beast. I think I would have always gone for a second MX when I had reconstruction. As for my DIEP reconstruction - I am delighted with the results.
So all in all I am happy with my choices
I wish you well and quick and comfortable healing whatever your decision.
Sarah
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It is a difficult decision because as Scwilly mentioned, its double the risk. How will you feel if the unaffected breast ends up infected and causes problems. If the implant or flap on that side doesn't work out and you end up flat where you had a healthy breast?
Aware but accepting of the additional risk, I choose to do both with immediate DIEP recon. My healthy breast was also a saggy breast. The PS offered a "lift" if I wanted to keep it, but I thought it would need so much work, why bother, just take it off. It's good not needing anymore mammos. Taking both did reduce my fear of recurrence or a new primary.
My cosmetic result is incredible, but it did take 3 extra revisions to get to this point. I just completed nipple/areola recon. Some PS's only do a nipple recon and the areola is tattooed. My ps also did a skin graft to make an areola would be a different color and texture. I'm happy with the result.
Good luck to you.
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How old are you? How healthy is your healthy breast, i.e. Does it have any conditions like calcifications for example that were found in the other breast too? Do you have dense breasts to begin with? Are you going to be OK with frequent monitoring of the remaining breast for an indinite period of time? How important is the cosmetic outcome for you? These are the questions you should think about.
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Thanks Scwilly! Appreciate you sharing your story and feedback!
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thanks Debiann for sharing your story as well. Hearing others experiences and feedback helps ease my mind, etc. Its always nice to hear that people are happy w the results as well, and understand it make take a few rounds before all is set.
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Hi Muska, Thanks those are definitely some of my questions I have keeping me up at night. I am 42, left breast is healthy and still in good shape, however, i have had fibroadenomas removed on that side and just wondering if i would always be worrying about BC showing up. My BS said that removing the left side would not change my prognosis or longevity but is more of a personal decision of symmetry etc. I also worried about the healing time of 2 vs 1, etc.
Anyways, thank you for the feedback, really appreciate it!!
So much to think about and decide!!
Traci
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I struggled with the same question too but I was significantly older at diagnosis. One thing that I found useful, when you talk to your breast surgeon and other medical professionals on your team nurses including, try asking what they would do if they were in your shoes and why. Try to sway them away from the standard talk and make it more personal. You might hear interesting answers. If it's a male ask what he would recommend his wife/daughter do in a similar situation.
Removing the left side does not change the odds of metastasis in the future but it does change the odds of getting a second primary in the left breast, eliminates the risk of missing something that might already be there and the need for frequent scannings. I am not trying to sway you towards BMX, just pointing out that every argument has a contra argument.
Good luck with your treatment!
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Will you be having radiation after suregery, Tigio, because that was a big factor in my decision. I can't say what I would have done if not. I consulted with my PS befrce making my decision too, which really helped. Certainly she wanted to wait at least a year after radiation (which I was definitely having). Not sure if I'm lucky, but I had no problem with my radiated skin.
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Great advise Muska, I will definately ask the surgeon/plastic what they would do if in my shoes. And agreed, there is so much info about single/double and everyone is unique so such a hard decision.
I know I will feel better having the known areas removed for sure. I feel like all this waiting is the worst!
Thank you again!
Traci
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Hi ScWilly,
I wont know about radiation until after my surgery. There was a spot they biopsied in lymph area but it came back as "no lymph tissue in sample" so BS said she wont know what we are dealing w until they remove.
Thanks for your help on this, appreciate it much!!
Traci
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I asked my BS what she would do if it was her, remove 1 or 2. She held up two fingers and whispered "two, I'd take two". When asked why she said for symmetry.
My MO was a different story. He was surprised I would remove a healthy breast. He wanted to know what my husband thought of this,lol, like I needed his permission. ummmmm, my husband says its my body, do what I think is right.
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LOL Debiann! Now that made me laugh! Too funny! I will see what mine suggest lol.
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Hi Traci,
I asked this question too just 3 months ago. I really didn't want my healthy breast to go, but I also didn't want to regret not taking it later. It's a hard decision. My BS also told me that removing the healthy breast would not reduce my chances of having cancer return, so I had a hard time justifying removing it. Ultimately I took the advice of a friend (who had gone through breast cancer 10 years ago) who said I could always remove it later but would never be able to put the real one back on. I know many people decide to do it all at once because they do not want to experience surgery and recovery again, and I completely respect that. They also want to look even, which is important. I finally decided to gamble and keep my healthy breast, hoping that this is a one-time deal. I just wasn't ready to lose all sensation across my chest. I had my UMX with immediate TE placement and am extremely pleased with everything so far. My TE is above the muscle, which I'm learning is not the way most procedures are done. I think with only having one breast removed and having the TE above the muscle, my recovery has been much easier than most. It was really nice to still have one arm that had full range of motion during recovery. I didn't feel so totally helpless and was able to sleep fairly well. I was also ready to return to work two weeks later without much difficulty. I talked to my PS about the DIEP flap, and he told me that I would lose abdominal strength if I went that route. I'm a runner, so I decided that procedure was not for me. As you make your decision, get feedback from women who have undergone the procedure to see if that really is an issue.
As for symmetry, I'm still in the reconstruction process to see how that ends up. My PS is an artist and a perfectionist and has done an amazing job so far, but he told me right up front that it will be extremely hard to be perfectly symmetrical doing only one side. I'll eventually have a lift on my right side, but it will be a while before the final result. I was able to get some great bras and a prosthetic insert in the meantime, and no one can tell anything is different. I know when all is said and done I won't be exact, but I think I'll be pretty close...at least close enough that no one will be able to tell. My next surgery to swap out my TE for the implant is December 21. Maybe I'll have a different opinion once that's done!
Good luck to you as you weigh all your options to make the best decision that works for you. I know it's overwhelming!
Donna
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my surgeon didn't want to do Bmx on me because it didn't change my survival rate, so i only had the Umx. i think i made the right choice.
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thank you for sharing your story Donna, I appreciate it much. So far, I am leaning toward UMX, understanding there wont be perfect symmetry. This journey is definately overwhelming!
Best wishes on your fight as well.
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Thanks JunePing, I appreciate hearing from those who choose UMX since my dr said the same thing about it not changing survival rates.
Best wishes!!
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Hi Traci- Everyone has to do what's best for them, and it varies so much as you can see! My mom had BC twice (and then colon)- I have small breasts (A at best lol)- so I always knew in my mind if/when I got this (diagnosed at 49), take them both- I'm done. But again, I'm small- so never have been attached to them. My PS and MO both nodded their heads- didn't disagree at all. I have a cousin who did a UMX 9 years ago and tells me now she wishes she did them both. Another friend the same. Of course all hind site (and maybe they're making me feel better lol). Go with your gut after consulting all the experts. Agree even talking with the PS (it's a whole other complicated world there!) would help. I'm doing chemo now- so still wrapping my brain around the next step of surgery. Wishing you the best.... it makes me so sad to see so many of us not only on here because of BC, but so many have young kids (mine is 13). Stinks, but definitely motivating to be here for them.
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Hi Kelly, thanks for sharing and the input. It is such a hard decision and everyone is unique so it does make it challenging. I am hoping that talking to my BS and PS will help me determine final way to go.
I have been mentally exhausted from all of this craziness! I still do not even know what my treatment plan will be until they do the surgery and check lymph nodes. So hard not to be able to plan things ahead for me.
It makes me sad too that there are so many on here battling it. My son is 13 as well, and he is definitely my motivation to fight.
Take care and prayers for treatment for you!
Traci
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thanks all for sharing. I just had lumpectomy for 1cm IDC. found out yesterday that I have no CA in the sentinel node, but there was over 6cm mass of DCIS. so it looks like I am looking at chosing one MX or BMX. leaning towards one, but wonder how easily I will know if other side has DCIS if it was not seen on 3D mammogram or MRI that I had B4 lumpectomy. This really came out of the blue! I wasn't mad before, but I am now. thanks for a place to share!
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Hi 2fun,
Sorry your dealing with that kind of surprise. I worry about the other breast and if the MRI, etc will miss anything in the future. I am still gathering all my info etc before i decide on one or two and waiting until i talk to dr's more. G luck to you and best wishes w all of your treatments/surgeries as well.
Traci
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I think for me the UMX vs BMX is tied into the reconstruction question. I definitely need to get more info, and that can't come fast enough!
Here's to having a knowledgeable health care team for all of us!
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had a UMX, then a second MX at reconstruction. I definitely think this was the best for mewas, because I like that at least one breast has less scars. It might depend if you are having immediate reconstruction - which wasn't an option for me.
Sarah
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agreed@ 2fun! I feel like i have been waiting forever to even get/understand my treatment options/plan. Each thing depends on another step, etc.
Mentally exhausting for sure!
thanks@Scwilly---I dont think immediate reconstruction is an option for me either, as i wont know until surgery if i need radiation.
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keep us posted on what you learn and decide traci! it is amazing how complicated it all is. I'm typing with one hand so sorry the writing is poor-hooked up right now for chemo #5.
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thanks Ajbclan, I will for sure. I am grateful I found this forum, definitely helps to support each other! Best wishes w your treatment and healing.
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I had a UMX back in January, then on 11/3 I had a prophylactic mastectomy and tissue expanders placed on both sides. I wanted the BMX back in January, but my surgeon didn't want to do both at the same time. I didn't have to do radiation, but did do chemo.
Good luck with your decision!
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Thanks for sharing Logang, lots to think about and check w Dr's on. Definately helps to hear other's stories.
Wishing you well on your healing!
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Traci, just wanted to let you know I am thinking about you and wishing your appointment tomorrow goes well. Hopefully you can find some peace and answers. Keep us posted!
Donna
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Thanks Donna! I had my apt today and it went well, I liked the plastic surgeon. My UMX is scheduled for Dec 6th, and I will wait on reconstruction until we have a treatment plan. I am scared, but will feel better knowing the cancer is at least removed.
Still feeling overwhelmed with all of this!
Thanks for checking on me!
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Good luck Tlgio17! Wishing you a speedy recovery. You're ahead of me on the surgery lol- so keep me posted on any hints along the way!
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