Re-doing a Mastectomy

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JK9002
JK9002 Member Posts: 2
edited March 2020 in Surgery - Before, During, and After

Hi - This is my first post and I'm trying to find out if anyone has had a similar experience. I recently saw a new breast surgical oncologist due to some pain associated with my reconstruction implants from a total bilateral mastectomy/reconstruction performed over 10 years ago. The doctor told me after examining me and after a breast MRI to confirm, that I still have a significant amount of breast tissue existing on my right side and a little on my left side. This news left me flabbergasted because I had a total bilateral mastectomy in 2009 after being diagnosed with Stage III aggressive triple negative breast cancer and finding out that I carry the BRCA1 gene. The whole point of having the total mastectomy was to remove as much of my breast tissue as possible so that I reduce my risk of getting cancer a second time. I understood from the breast surgeon that performed the surgery in 2009 that he cannot remove 100% of all breast cells but that the goal was to get as close to that as possible. Now my new doctor is telling me I need to have surgery again to remove the residual tissue left behind - the residual tissue not being small in amount but more than a fistful on the right side.

The original surgeon came highly recommended and is a top surgeon as one of the largest hospital (and largest hospital system) in the metropolis (one of the 10 top cities in the U.S.) I just can't believe he would have left so much breast tissue behind especially knowing I am BRCA1. The new doctor (who is at a renown university hospital) says that this type of "re-do" ,while not usual, is also not rare, stating that she herself has had to redo at least half a dozen.

Has anyone else experienced or heard something similar to this? Probably not a question you can answer, but isn't this medical malpractice on the part of the original surgeon? I am so frustrated and angry. My son was 6 months old when I was first diagnosed and went to through 2 years of treatment. He just turned 11 years old. Even if this new doctor is being aggressive, I can't take the increased cancer risk and deciding to get the surgery and also get my implants taken out with no reconstruction.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2020

    Dear JK9002,

    Welcome to the BCO community. This sounds very upsetting for sure. We are glad that you reached out to our members for their thoughts. We hope that others will offer there ideas here. Please stay active and keep us posted on how things evolve for you. Let us know if there is anyway we can be of help.

    The Mods

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2020

    JK, if you have not already done so, I'd suggest you get another opinion.

    Yes, you might have an unacceptable amount of breast tissue left, and you might benefit from a redo of your MX. But the red flag went up for me when you said that you had your first surgery done by top surgeon at a top hospital - you wouldn't expect a top surgeon to be this sloppy - and when you mentioned that your new surgeon has said that said she's had to redo at least a 1/2 dozen mastectomies. This can happen, but for one surgeon to have seen so many cases makes me question what she is looking for. Have you had MRIs and physical exams before and has this not be noticed? Do you have a lot of remaining breast tissue, or do you have fat pads that perhaps have migrated closer to the breast area (this can happen after a mastectomy)? Just to be sure, could you get someone else to read the MRI?

    As for whether this is medical malpractice on the part of your first surgeon, the answer is "no". The first surgeon told you that not all breast tissue could be removed. This is factually correct. He can argue that he removed as much breast tissue as he always does during a MX, and that it is subjective as to whether too much remains. More importantly, and thankfully, you have not a recurrence, so you have not been harmed.

    I am sorry that this is happening. I can understand how angry and frustrated you must be - I would be too.

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  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited March 2020

    JK, I agree with Beesie that you should seek another opinion. Before you do anything based on that surgeon's suggestion, I would seek another opinion--or two, before going forward (and the best available to you). I think it's MinusTwo (on this forum) who rightly says often, "Surgeons cut." It's what they do.

    I can't imagine having Stage lll Triple Negative cancer with a six month old child, but I rejoice with you that he is now eleven and you have no sign of cancer. I sincerely hope you don't have to be cut on again. But should it be that you get an opinion or two that suggest you should, if it were me, I'd do it and look forward to going to your son's wedding!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2020

    Yup Beesy - that's me. Surgeon's Cut... Not that that's bad. Just that is their area of expertise and likely the first solution they see.

    And I agree too - get at least one other opinion. In fact I might go back to the first surgeon and say "what the hell" as one of my new opinions. Or maybe you've moved and that's why you're with a different doctor.

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  • JK9002
    JK9002 Member Posts: 2
    edited March 2020

    Thank you, Beesie, Beesy and MinusTwo, for your replies. I really appreciate your responses and advice. I will seek another opinion, but I think even if the second opinion says that the surgery may not be necessary, I need to take the more aggressive advice if I am going to keep my risk lower. In any event, I can't avoid surgery because my implants are the textured cohesive gel made by Allergen that are on the FDA recall list. I started having tingling and burning pain and swelling around my implants in Feb and have been to a plastic surgeon and this new surgical oncologist because of fear of ALCL. Fortunately, doctors have ruled out ALCL but no one can explain why I have the pain/burning. I am going to have the implants and the capsule removed along and my surgeon tells me that removing the additional breast tissue will be incremental - although, I will need an overnight stay at the hospital. My breast surgeon wants me to have a second consult with the plastic surgeon to talk about reconstruction but I think I am going to opt to go flat. I'm kinda over all the surgeries and complications with reconstruction. I'm kinda done with doctors . . . LOL.

    Last night, I did find an article in Glamour magazine about a lady who had a mastectomy twice and has a story similar to mine. (Can't post the link - but the article is "I Got a Mastectomy . . . Twice" by Lambeth Hochwald and is on Glamour.com). I've reached out to the author as well.

    Again, thank you, ladies! I do plan on seeing my son graduate, get married and see my grandkids, God willing! This forum is really a great site and thank you for your support!

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  • Lisey
    Lisey Member Posts: 1,053
    edited March 2020

    JK, Flat and Fabulous ladies are growing in numbers, so deciding to be flat is a great decision. Welcome to the club! If you want to talk to women who have been there and are rocking the flat life, please go to our facebook page "Flat and Fabulous' and ask to join our private group. There are about 10,000 of us in there. We post photos and clothing tips and just generally living life without more surgeries.

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  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited March 2020

    JK, until you post a certain number of times they don't allow you to post links, but here's the article for anyone coming along later: "I got a mastectomy twice"

    With carrying the BRCA1 gene, I would do exactly the same thing and do everything in your power to reduce your chances of more breast cancer. My tumor was hormone negative but HER2+ and growing like a monster right after diagnosis. I'd a one-off tumor in my 30's called a Phyllodes tumor and lost half the right breast then. So when this showed up in the left breast, it just made sense to me to remove both. I also chose no reconstruction and have no regrets. I completely understand why women choose reconstruction and am glad it's an option, but for me this seemed right. I do wear prosthetics, though. I'd worn one on my R side for decades so it wasn't a foreign idea to me. As an encouragement, the surgery was a breeze for me--so much so that they started radiation prep within 2 ½ weeks, so hopefully you can get this behind you and move on to living life again. Do report back to us on your second opinion!

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