Big decisions in the next week

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Chloesmom
Chloesmom Member Posts: 1,053
edited November 2014 in Just Diagnosed

Got diagnosis last week. Having significant pain from tumor while small pressing on the duct and feels like years back when my milk let down. Consequently while only stage 1 ILC they are trying to schedule surgery in 2-3 weeks.

I have opted for bilateral mastectomy the surgeon is highly recommends and I met with him yesterday. Have to meet with plastic surgeon. We are in PA an hour from Baltimore I could go down there but want these things GONE. Not sure if the doctor does DIEPs. She is supposed to do great surgeries. Do I want to switch? Will I regret a good TRAM if that's her strength? Checked the reconstruction discussion and read horror stories

Thoughts? I'm 62. Swim a lot so just want a little something in my bathing suit. Looking to get my 34 A filled out.

Thanks so much for this wonderful group

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited November 2014

    Chloesmom - while I understand the need to want the tumors gone, you will live with your reconstruction for the rest of your life. You have time to make decisions and get a second opinion. Do not rush into this. Hugs as you make these difficult decisions!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2014

    Autologous breast reconstruction requires vascular microsurgery - not many plastic surgeons do this type of reconstruction and it is vitally important that you find the most experienced surgeon, with the lowest failure rate, if this is your choice.  I did not do autologous recon, but may need to in the future, and I personally would not have a TRAM - I am unwilling to risk the potential complications. DIEP and TRAM are very large and complex abdominal surgeries, with a potentially prolonged healing time, and should be carefully considered.  I would advise a consult with someone who specializes in this type of surgery before you make any decisions. 

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  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited November 2014

    thanks so much for replies! Have been doing homework all morning I just made an appointment with one of the specialists who does this type at Johns Hopkins. See both surgeon and plastics on Monday!

    Even if I have to wait a few weeks more it will be worth it. Don't want to jump the gun and do something impulsive. The community hospital is convenient but we are talking about messing me up for the rest of my life.

    Just started on anastrozole today. Boy can your life change a lot in 2 weeks. That's when I got the call back for a diagnostic. ILC Waiting on HER2 status.

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  • muska
    muska Member Posts: 1,195
    edited November 2014

    Chloesmom, I am sorry you have to go through this. May I ask why you are not considering implant reconstruction? I think recovery would be much easier. As for horror stories of which there are many on this site, many women have very good results with implants - they just don't post as much.

    I for one am very happy with my implants even though I had to undergo radiation after the reconstruction - it still looks very good and I have no movement or other physical limitations. I just turned 56.

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  • besa
    besa Member Posts: 1,088
    edited November 2014

    If you are thinking about DIEP consider seeing Bernard Chang at Mercy in Baltimore for a consult. After researching things I think he is the most experience, high volume microvascular surgeon in the DC/Baltimore metro area. (I traveled to New Orleans for sGAP surgery and revision of a problematic contralateral DIEP that was originally done in the Maryland suburbs.) I am not a patient of Dr. Chang's but from my research he would be the first person I would consider in this area. He originally worked at Hopkins but then moved to Mercy. (My take on Hopkins is that the microvascular ps at Hopkins train there, and after that tend to stay for a relatively short time and then move on.)

    Think about getting a copy of the latest edition of Kathy Steligo's "Breast Reconstruction Guidebook" - the best I have seen on the topic. It will help you decide exactly what type of reconstruction you want and also help you choose a good ps. from amazon.com or from http://www.breastrecon.com/

    A pedicled tram is a very different surgery from a free tram. The pedicled tram has many more issues and is no longer even offered at Hopkins because of its associated problems. First step- ask exactly what type of tram your current ps is offering. My take on things if if it is a pedicled tram I would immediately find another ps.

    My advice is go to the most skilled and experienced ps you can possibly find who offers the type of reconstruction you really want. If you want a DIEP travel for it (an hour is nothing in the scheme of things). This is a decision you will live with for the rest of your life. (As an aside I am happy with the decision I made in terms of type of reconstruction. It was the right decision for me. I am very active and have no physical limitations in terms of exercise. ) (Also - if you haven't already done so listen to Dr. DellaCroce's videocast on this site.)

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  • cathiero
    cathiero Member Posts: 17
    edited November 2014

    Hello Chloesmom
    If you are seriously considering a DIEP flap or TRAM flap recon, please don't be put off just by the horror stories. I don't know why it seems like people seem not to post the positives as much as the negatives. I had a DIEP flap recon done after my (lft) mastectomy and am absolutely thrilled with it. I am 63 and very active. The surgery is indeed a long one (mine was about 11 hrs), but the actual time can vary from patient to patient. It does involve having an experienced micro vascular surgeon on the team. The scars are significant, but they don't bother me; they'll fade some with time.  If you're hoping to "fill out  a 34A" you need to have an adequate of belly fat for the surgeon to use.  My PS told me I didn't have a lot of fat to use (I of course felt I had an excess), but he still managed to do a fabulous job of matching my B cup good side. The recovery, for me, wasn't bad at all. I was off the hard core pain meds before the end of the first week post-op. There was a lot of stiffness from the abdominal site, but nothing horrible. I am just over a year from the surgery and I have no restrictions or limitations of any kind.

    Just be sure to do your homework when choosing a surgeon and surgery. Your overall health must be good enough to endure hours  in the OR.  A good surgeon should be willing to show you photos of before and afters that he/she has done. I have even told my PS that he can have anyone considering the surgery call me if they want to hear from someone who has had it done.  It is a personal decision and you are the one best suited to make it for yourself. Good luck with your decision.

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  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited November 2014

    thanks Cathiero & others. I'm in good health and active. This is just a personal choice. I am grateful for input as trying to do homework. It's good to see a positive report. Very encouraging!

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