Revision Surgery

Options
miranda2060
miranda2060 Member Posts: 281
edited August 2018 in Breast Reconstruction

Hello, wondering if anyone can weigh in on my situation.

I was diagnosed in January and had mastectomy/immediate silicone implant that month. Although I have had much faith in my surgeon and plastic surgeon, I was rushed and not given any meaningful choice in the procedures (I was too dazed by my Dx to object). Because my bigger tumor was against the chest wall, it was anticipated that it was likely I would need radiation.

That proved to be the case -- my surgeon was outvoted by the "tumor board," and I had 30 rounds of radiation. I was very concerned at the time about how it would affect the implant -- capsular contracture, etc.. My repeated concerns were heard, but the radiation proceeded due to the unclear margin, and now I have a very hard, rather high implant.

When my breast surgeon saw the implanted breast, she just about gasped. Said it would have to be redone. When I finally got an appointment with the plastic surgeon, she didn't even see me personally; the advanced-practice nurse did, and said there's scar tissue because of the radiation and I will need another surgery, but not until about 7 months after end of radiation (would be, like, October). I hate this hard thing on my chest, and am beginning to resent everything about my treatment right now. My PS is a very sweet (acts very caring) and highly rated surgeon, but her office is insanely busy, and I feel neglected. They ordered physical therapy (boob massage, I take it) for me, which I doubt will help much. My concerns about yet another surgery were dismissed ("you'll be back to activities in two weeks.") Great!

I'm starting to wonder if I should consult with another plastic surgeon, or whether "changing horses midstream" is more trouble than it's worth.

· Share on FacebookShare on Twitter

Comments

  • calidancer
    calidancer Member Posts: 88
    edited June 2018

    Do I understand correctly that you had radiation with the implant in place? It's seems pretty standard to get a contracture in that case so please don't feel like your body has betrayed you (further).

    I'm sorry you're feeling neglected by your surgeon and that the implant has contracted. I didn't have radiation at all and mine has contracted twice. I don't understand how they think it's no big deal to have another surgery. My last surgery cost me over $10,000! And several weeks. It is no fun to be in this position.

    I would not feel bad AT ALL about talking to another surgeon. Seems like another surgery is in your future-- especially if it's really uncomfortable. I'm mentally planning for another as well, though I'm also realizing that my MX side will never be soft like my healthy side. Maybe consider other options beyond implant surgery? I am SO hesitant to do so, it just seems so drastic, but sometimes the path we want isn't the one our body takes us on.

    Hugs.




    · Share on FacebookShare on Twitter
  • sandcastle
    sandcastle Member Posts: 587
    edited June 2018

    I, did NOT have Radiation or Chemo....but I ran into an infection about 12 weeks after the Implant.  I, was so sick, I was happy to have it removed....woke up feeling great...NEVER tried again...so I am flat on one side.  I notice but people do not...for myself, I will never go that route again in December it will be 9 years...Liz

    · Share on FacebookShare on Twitter
  • miranda2060
    miranda2060 Member Posts: 281
    edited June 2018

    Calidancer -- Yes, I had radiation with the implant in place. I was concerned going in and throughout about what might happen to it -- it occurs to me that I'd rather focus on fighting cancer and improving my health than on the fate of a bag of silicone (!).

    Sandcastle and Calidancer, you have both given me much to think about. I guess this path is not as straightforward as I was led to believe. At this point, I might like to have it removed and deal with one flat side than dealing with maintenance of an implant. Time will tell what I ultimately decide.

    Thank you both so much for your perspectives -- REALLY helpful!

    · Share on FacebookShare on Twitter
  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    Miranda-the wait for any surgery has to do with the viability of the skin. It takes months for the skin to recover from radiation and if you try surgery before then there are healing problems in almost 100% of cases. if you're overall not happy with the implants at all, and you want recon, natural tissue recon is a very good option.

    · Share on FacebookShare on Twitter
  • miranda2060
    miranda2060 Member Posts: 281
    edited June 2018

    Thanks, Lula. I definitely have time to consider some options. I probably would be OK with the implant if I could know that it will ultimately look and feel OK. It's just disheartening -- I was very "borderline" in terms of needing radiation, and wish it hadn't been decided I should have it. I guess I'm wishing I had been given more choice in all matters rather than letting the health care professionals tell me what's best. I didn't feel I could safely decline recommended treatments.

    · Share on FacebookShare on Twitter
  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    Miranda- there is definitely a learning curve with this. The thing that many women don’t know is that the PSs typically won’t lay out all your options...only the ones that they do. And if you ask about an option they don’t do, they often tell you you’re not a candidate for it even though they are not even qualified to evaluate you for it, much less perform the surgery.

    · Share on FacebookShare on Twitter
  • miranda2060
    miranda2060 Member Posts: 281
    edited June 2018

    Lula, I wish I had known more about the options. When my surgery was discussed, I was still in shock from Dx. I was told that a DIEP flap wasn't advisable because of the possible radiation. Not sure I would have wanted that extensive surgery, or delayed reconstruction, but I was pretty much told immediate silicone implant was the way to go.

    Amusingly, I asked women on a Facebook group for breast cancer in my state to recommend a PS they like, and one of them recommended mine. She IS a lovely person and highly regarded. Don't know if the problem is the surgeon or just the bumps in the road with BC treatment.

    · Share on FacebookShare on Twitter
  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    it’s the treatment. Rads are notorious for contracture. If your PS doesn’t do DIEP she/he won’t recommend it and will often come up with a reason why it’s not advisable for you. It’s definitely a bigger surgery than direct to implant but they are not cutting any muscle. Everything is on top of the muscle that they’re working with. Implant only docs always make it sound horrific and you’ll be down 100% for weeks...wrong! I went out to lunch on discharge day (day 3 post surgery), walked 3 blocks from restaurant back to our rented condo, attended a Mardi gras parade a day or two after that, explored a little bit of New Orleans, etc. And what they don’t tell you when they’re going on and on about going with implants being the greatest thing ever is that with implants there is nothing for your own tissue to adhere/grow in to. With DIEP flap there is...other natural tissue. When it comes to post rads this aspect is very important. And DIEP could’ve been successfully done before rads (keeps you from having TEs that can stretch out the chest muscle that can cause animation issues later) and can still be done post rads. Just throwing that out there for consideration.

    · Share on FacebookShare on Twitter
  • miranda2060
    miranda2060 Member Posts: 281
    edited June 2018

    I was told differently by the surgeon and the plastic surgeon. I'm not really looking to cast doubt on the competence or ethics of my providers -- am lucky enough to be treated at a top hospital. I am a bit unhappy with the current situation, but to determine that I've been scammed would be a bridge too far.

    · Share on FacebookShare on Twitter
  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    Its not necessarily their competence or a scam but rather what surgeries they are qualified to do and subsequently put on offer for you. For instance, I made it clear I was not interested in implants and wanted natural tissue recon...where did I get referred? To a PS that only does implants. What did she offer for recon options? Implants. DIEP flap? Nope. What did she discuss after my DIEP question? Implants. It's not in their best interest to offer procedures they don't do. These boards are full of women who experienced the same exact thing. The unfortunate reality is that Medicine is no longer run as a passion for helping people get better. It is being run as a business. The bigger the organization, the more business-like it is run with docs being paid by how many patients they see vs the quality of care they give, how many procedures they do vs quality outcomes from those procedures (this includes surgeons in particular). Docs who treat chronic diseases are graded on outcomes like average BP, cholesterol levels, A1c, etc, however they have found that if they have patients who are ruining their numbers and grades/payscale, they simply fire them from the practice for "non-compliance". That individual now has no doctor, is receiving no care, they have 15-30 days to find a new doc to keep their prescriptions current, they have no one to call if they have an urgent medical need other than an urgent care or hospital. And this is all ok, because the doctor's numbers are instantly better meaning more money in their pocket. Unfortunately, I see this scenario happen every single day. No one likes to think this way, but it is the new reality. Come on over to the DIEP 2018 or DIEP 2017 boards and check out the posts over there to see what the reality is when it comes to natural tissue recon.

    · Share on FacebookShare on Twitter
  • miranda2060
    miranda2060 Member Posts: 281
    edited June 2018

    Not sure how to respond; this goes beyond my issue. I do know doctors at my hospital are salaried, not paid per patient.

    · Share on FacebookShare on Twitter
  • Warrior2018
    Warrior2018 Member Posts: 380
    edited June 2018

    Hi Miranda! I hope you're well today, sending gentle hugs. I'm sorry you've had such complications. I think the decision making process can be so difficult. I know in my situation that I never would have even walked into a plastic surgeon's office before this diagnosis!

    If I was you- I'd get a second, third, fourth opinion. Whatever makes you feel assured that your plan is right for you.

    Edited because of typos....;)

    · Share on FacebookShare on Twitter
  • miranda2060
    miranda2060 Member Posts: 281
    edited June 2018

    Thanks, Warrior. The complications were foreseen (radiation leading to contracture), but are still unhappy-making.

    Having given it some thought, I don't think the doctor is the issue. I'll see how things go. I know what you mean -- before diagnosis, the last place I would have thought I'd be is in a plastic surgeon's office.


    · Share on FacebookShare on Twitter
  • Palesa2018
    Palesa2018 Member Posts: 140
    edited August 2018

    sending you hugs Miranda2060. I'm also scheduled for same. Direct to implant mastectomy and will be doing radiation. To be honest the oncological outcome matters to me more than the aesthetic outcome. There are options to address the capsular contracture and we can't dwell in what could have been.

    Wishing you strength.

    · Share on FacebookShare on Twitter
  • miranda2060
    miranda2060 Member Posts: 281
    edited August 2018

    Thank you, Palesa, sent you a PM. I agree with you, the oncological outcome is much more important to me than the aesthetics. Revision surgery coming up for me.

    · Share on FacebookShare on Twitter

Categories