• Can people who’s had bilateral mastectomy with concurrent reconstruction surgery share your experiences with me?

    Asked by Nana on Tuesday, October 11, 2011

    Can people who’s had bilateral mastectomy with concurrent reconstruction surgery share your experiences with me?

    I was just diagnosed with grade 2 breast cancer in my right breast last week. I was told that they wouldn’t know the stage until they cut me open, but the tumor size (from what they can see by Ultra sound) is relatively small. I’m currently facing a decision point to select lumpectomy, unilateral mastectomy or bilateral mastectomy and I’m leaning towards bilateral mastectomy with concurrent reconstruction surgery because I can’t stand the fear of my breast cancer every returning again. Also, I do not want to go through the radiation therapy if I can avoid it. But before I make this big decision, I would like to speak with someone who’s had bilateral mastectomy with reconstruction experience to learn about pros and cons. Your advices will be appreciated.

    13 Answers from the Community

    13 answers
    • jamrck's Avatar
      jamrck

      At 54 I chose bilateral mastectomy with concurrent reconstruction using expanders. I wanted to do everything I could one time to lower the percentage of recurrence. I had 12 weeks of chemo, no radiation. I actually feared the radiation more than the chemo because my skin has always been ultra sensitive. Because my sister-in-law had already been thru breast cancer, 2 mastectomies and reconstruction, and we spent many hours talking, I was more prepared than most. I'll be happy to go into more detail if you like.

      about 6 years ago
    • Nana's Avatar
      Nana

      Thank you for your response, jamrck. I read on the Internet that some people experienced lingering pain with the use of expander. Was it true in your case? How is expander different from standard silicone implants? Are you happy with the result of the reconstruction? Thank you again.

      about 6 years ago
    • jamrck's Avatar
      jamrck

      I did not, but I know some who did. Once they had the implants put in, they felt much better. The expanders are used to expand the skin and make a pocket for the implants. I am very happy with the reconstruction. I found the subsequent surgeries after the mastectomy were much easier and much less painful.

      about 6 years ago
    • ymac's Avatar
      ymac

      I have been wondering the same thing. I have decided to have a bilateral mastectomy with concurrent reconstruction using the DIEP flap procedure. They will be taking tissue from my abdomen for reconstruction. I didn't want implants. While I have made my decision, I'm still pretty darned scared about the whole thing (its a 12 hour surgery!) so I want to talk to someone who has been through the same procedure so I know what to expect post-surgery.

      almost 6 years ago
    • Nana's Avatar
      Nana

      Hi ymac,

      I had my bilateral mastectomy last Tuesday, although I went with the implant route as opposed to the DIEP flap. The scars are healing very well, and my last drainage tubes are supposed to come out this coming Friday (and I can hardly wait for that!). There is definitely some pain and discomfort when the expanders are filed, but nothing that I cannot tolerate with a decent dosage of valium. My surgery was 5 and half hours (instead of the 4 that the doctors told me before I went into the surgery) and when I woke up from the surgery, I was in agonizing pain and I was begging for pain meds or to put me back to sleep. Over the next 24 hours, I was in pretty bad shape; being dizzy, nauseous and unable to eat or even move but that was the worst part. I was discharged 2 days later, and I was amazed how quickly I was able to get back to somewhat of a normal life. Besides the discomfort of the expander, I have almost no pain from the surgery a week later.

      When I was deciding on which operations to chose, my general surgeon hinted that implants are definitely simpler and quicker recovery time and that would be her recommendation, although she emphasized that the choice was entirely mine. For me, the choice was simple; I wanted the least painful and shortest recovery time. I cannot imagine 12-hour surgery, but you must have your reasons for your decision, so I wish you all the best with your surgery. My doctors said that there is no right or wrong decision because the cancer can be cured in many different ways with the same result. The option you feel the most comfortable with is the right decision for you.

      almost 6 years ago
    • PetraW's Avatar
      PetraW

      It's been over a month since you first posted your question and I am sure you have made decisions and are well on your way. I was diagnosed last year Nov. 24 with invasive breast cancer. It was discovered early (stage IIA), but I was faced with the same question about bilateral or unilateral mastectomy or lumpectomy. Well, I had one lumpectomy, but the margins were not clean.Then I decided bilateral mastectomy with immediate reconstruction and was referred to a very good female breast surgeon. When I came to her with my decision, she helped me to re-evaluate. She suggested to do some further testing (Mammogram and MRI of both breasts) to determine if the double mastectomy was really necessary. In the process, I discovered for myself, that I was in such shock at the beginning, that I wanted to eliminate the "cancer problem" once and for all from my life. My decision to do the double mastectomy was based on fear. The tests showed, that my other breast was perfectly healthy. With the help of my breast surgeon I made the decision of first going for another lumpectomy. The margins were still very narrow. I also had cancer in my sentinel lymph node and during the lumpectomy had an axillary dissection. The next step then was the one-sided mastectomy with immediate reconstruction. My reconstruction route is also the expander method. It is not an easy surgery to have. The mastectomy is not painful. You don't feel anything afterward, as all your nerves are removed as well. The reconstruction, when the expander is inserted under your breast muscle is very painful. Your muscle is just not used to being stretched that much. But all is bearable. I am extremely grateful about deciding not to do the bilateral mastectomy and cannot thank my breast surgeon enough for helping me to re-evaluate my initial decision. Now after almost a year, I am still not completely done with the reconstruction. I still have one more fill of the expander and then the surgery to replace the expander and put the implant in. Just like my breast surgeon said, it will never feel the same. I have no feeling in the reconstructed breast and it does feel like a foreign object my new breast. It is no problem - it is amazing what we can get used to and I am happy that it is what it is. But I am also so incredibly happy to have my other real breast.

      One more thing: Surgeries can always be followed by complications. I had three severe infections 5 weeks after the mastectomy /initial recon surgery. Just the thought that this could have happened on both breasts makes me shudder. The infections were worse than the surgeries. It was a time filled with pain, fear and uncertainty. If it gets very bad, the expander has to be taken out again. that was my worst fear.

      With the expander under the breast muscle there are certain thinks I simply can no longer do: i.e. using laupers to cut branches off shrubs and small trees in my garden. I no longer have the strength and it also feels very weird how the breast muscle squeezes my little new breast as if it was in a vice. But there are also funny things about this reconstruction process and my kids and husband all laugh about it. You will be able to flex your new boob (because of the muscle over the expander/implant) - not something many people can do!

      Petra

      almost 6 years ago
    • ymac's Avatar
      ymac

      I decided to do bilateral because I have 3 tumors in the right breast and atypical hyperplasia in the left. The risks of cancer developing in the left breast and reoccuring in the right is just too high for me to bear - I'm 45 and will (hopefully) have too long of a life to worry continuously that I will get cancer again! My doctor and surgeon think I have made a sensible decision. I decided to go with the DIEP flap because I just can't stand the thought of having implants - its just not me. I know that the risks and pain are higher initially and the recovery is longer than with implants (or nothing), but the long-term risks are lower. My surgery is next week - yikes!!

      almost 6 years ago
    • Nana's Avatar
      Nana

      Since my initial diagnosis, I’ve attended breast cancer support groups and conference and met many other women with this disease, and have chosen different paths for their treatment; lumpectomy, single mastectomy, double mastectomy, DIEP, implants, etc. I have not yet met a single woman who said “I regret my decision and if I were to do it all over, I would have chosen a different path”. I think the “right decision” is the one that you feel the most comfortable with.

      PetraW, I’m glad that you feel happy about saving your healthy breast, and I’m sure that was absolutely the right decision for you. For me, I still believe that bilateral was the right decision, because I can reconstruct my breasts symmetrically with the shape that I’ll be happy with. I’m 47, and I was feeling that my breasts started sagging, so the implants will fix that problem. My only set-back is that apparently, I didn’t clear margin from the initial surgery (although it was a mastectomy), so I’ll have to have another surgery this Friday and the doctors will remove additional skin from my breast to make sure that there is no cancer left on my skin. Even with this surgery, my plastic surgeon said that he’ll try his very best to make my breasts beautiful and as symmetrical as possible. I have enough trust in him that I’m sure that I’ll be happy with the results.

      Ymac, good luck with your surgery next week. I hope (and I’m sure) all will go well.

      almost 6 years ago
    • Paprika's Avatar
      Paprika

      this was a very helpful string of questions and answers. I am probably facing the exact same decisions in two days (actually tomorrow, since that's when I talk to my surgeon). I have a much better idea of pros and cons. Still scared though. Good luck to us all and fight it with passion!!!! HUGS.

      almost 6 years ago
    • AngieIMeanAmy's Avatar
      AngieIMeanAmy

      This has been very helpful to me. Thank you for posting the quuestion and thanks to everyone for sharing your experiences, comfort, and support.

      almost 6 years ago
    • Hamsagal's Avatar
      Hamsagal

      I just joined this group yesterday and am impressed with the dialogue here. though everyon's situation is always a bit different and every decision has to be "one's own", I was searching hard for someone to talk to who had a similar experience. I am through my surgery and radiation now (3 wks ago) but will share my story in the event it is helpful to someone else. I am 57, slight build and quite fit and was shocked to get my diagnosis (IDC) on a routine mammogram. I had a biopsy and US which indicated a small tumor and then had the decision to make re: partial mastectomy (lumpectomy) followed by radiation and hormone treatment or full mastectomy.My dilemna was that my bra size is A cup and the tumor appeared to be near the middle of my chest. My surgeon said she had to take a 1cm margin around the tumor which looked like half of my breast tissue would be removed! With no option of reconstruction post radiation, I had a very difficult decision and consulted a plastic surgeon. I was told that matching would be very difficult because I was so small. Bilateral mastectomy was clearly over-treatment in my mind. So, in the end, I chose partial (lumpectomy) and ended up with the best case scenario. the tumor was very small (.7mm) and the margins and SNB were clear. I only (amazing how perspective changes) required radiation and hormone therapy. I am now 3 wks post radiation (that's another story) and aking Arimidex and I have to say that my surgery choice was the right one for me. If one didn't know that I had breast surgery, one could not tell. the scar is almost invisible and the tissue loss is minimal.

      almost 6 years ago
    • cbutinski's Avatar
      cbutinski

      I had what they called stage 4 breast cancer on my right breast, they asked me about a lumpectomy but the idea of going through this again if it happened again was more than I could bare, it was not possible for me to have only one breast removed because i had large breast and the plasic surgeon that it could not be duplicated, so I chose a bilateral masectomy with reconstruction expanders, please read my profile because after all is said and done I have the implants one is practically in my armpit, I also have this extra skin on the side of my chest because I became smaller.

      about 5 years ago
    • DaveWaz's Avatar
      DaveWaz

      Nana,
      Thank you for question and urging other WhatNexters to share their experiences. This is what we're all about! I hope all is well.

      Your question reminded me of some content we have on reconstruction experiences.

      https://www.whatnext.com/experiences/procedure/breast-reconstruction-flap

      https://www.whatnext.com/experiences/procedure/breast-reconstruction-implant

      https://www.whatnext.com/experiences/procedure/reconstructive-surgery

      It also reminded me to let WhatNexters know about our Beginner's Guide to Cancer, including a guide on how women chose between a lumpectomy and mastectomy.

      https://www.whatnext.com/cc/how_we_chose_between_a_lumpectomy_and_mastectomy

      Best of luck to all,
      David

      about 4 years ago

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