Breast Recon Update: Lipotransfer, Opportunism & BRA Day

Fuhgeddaboudit.

Sometimes, the best thing a doctor can tell you is what she won’t do. Such was my experience today. I’ve returned from my consult with the plastic surgeon I vetted recently per my previous post, Private Parts: Breast Recon Without Surgery. Dr. S turned out to be a delightful, intelligent, conscientious person, and she said no.

Yes, she does do lipotransfer — but only for patients who’ve had full mastectomies, and hence, no breast tissue left that might develop a recurrence. She does it to help correct imperfections resulting from reconstructive flap graft and/or implant surgeries. In fact, she is hoping to participate in a clinical trial of the BRAVA technique, a post-mastectomy reconstruction option that uses autologous fat transfer to construct an entire breast, thereby eliminating the need for surgery altogether. It’s still complicated, and Dr. S explained that she is not without her reservations about BRAVA. But that perhaps makes her the ideal type of surgeon to explore a new procedure, because she’s got a healthy dose of skepticism and thus doesn’t have an agenda to prove that it’s safe.

From the get-go, Dr. S acknowledged that lipotransfer is a hot topic in breast recon, but a controversial one. Many more types of research studies, she felt, including longitudinal ones, are needed about simple lipotransfer in general, and stem-cell boosted lipotransfer in particular. She referred to recent studies that question the safety of both. Of particular concern is the use of lipotransfer in women who’ve had partial mastectomies or lumpectomies or radiation. Fat grafts can lead to abnormal mammograms and the development of calcifications, even in women who have lipotransfer as part of non-cancer-related breast augmentation. There is also concern that the stem cells in any fat transfer might facilitate the growth of new breast tumors. “The thing is,” she said, “stem cells can turn into anything.”

So, for someone like myself, with a partial mast and radiation, then, no, Dr. S would not perform lipotransfer. “I know plastic surgeons who’d do it, who’ll try anything,” she said, “but I’m not one of them. I don’t want to contribute to a possible recurrence.”

“Well,” I said, “that actually makes me like you more as a surgeon.”

We discussed clinical trials, and she gave me a few names of plastic surgeons who might be able to tell me more about research and the state of lipotransfer safety. We agreed about my decision to avoid flap surgery and implants, about the long-lasting effects of breast radiation, and how unarguably nasty radiation can be. We talked about my area of expertise — post-op rehab. She told me about her office partner, who is a specialist in hand surgery and restoration. Their office employs a group of rehab therapists who do nothing but work with post-op patients who’ve had hand surgery to help them restore their fine motor function. I told her about the Monday night #bcsm (breast cancer social media) Tweetchats. She took my email address and we promised to stay in touch.

It’s reassuring to feel like I talked to the right person, a doctor whose primary concern was doing the right thing for me, which meant not doing the wrong thing.

If her surgical technique and her patient care are as conscientious as the conversation we had today, I’ll bet Dr. S is a great recon doc. If you live anywhere near Providence, RI, and you’re looking for someone, send me an email at kk@accidentalamazon.com, and I’ll give you her contact info.

Weird Synchronicity.

As fate would have it, when I returned home, I found that a blog sister had posted a link about something called the Breast Cancer Patient Education Act. From the link: “Bipartisan legislation introduced in the House of Representatives on June 8 would require the Department of Health and Human Services (HHS) to plan and implement an education campaign aimed at informing mastectomy patients of breast reconstruction availability and coverage, and of prostheses and other replacement options.”

On the face of it, I think this is a good thing, although I hope this campaign is going to include those of us whose options may also include lumpectomy or partial mastectomy. According to studies, “only 33 percent of eligible women with breast cancer undergo breast reconstruction – and published research shows that nearly 70 percent of women are not informed of their care options.” I was certainly one of those women who was not told about all my treatment options or their risks and side effects. It’s sad that we have to consider legislating something like this at all, because one would hope that doctors know they’re supposed to adhere to the principle of informed consent by providing full info in the first place. Except that all too often, they don’t. One of the first posts I wrote about this thorny subject was called Blind-Sided: Cancer 101 & Informed Consent.

However, in the ‘No good deed goes unpunished’ category, well-intentioned legislation often leads to unintended consequences. The breast cancer awareness behemoth has amply demonstrated over and over how many groups and corporations are ready to make a buck off breast cancer. Let’s not forget that National Breast Cancer Awareness Month was launched largely by AstraZeneca, maker of several breast cancer drugs. Thus, it should come as no surprise whatsoever that the American Society of Plastic Surgeons has hopped right on this potential gravy train. Together with the Plastic Surgery Foundation, the ASPS plans to launch the first-ever National Breast Reconstruction Awareness Day, on October 17th of this year. Naturally, this inexorably led to a handy acronym, which is — yes, you guessed it — National BRA Day. The performer Jewel has agreed to serve as the spokesperson for this event, and has reportedly written a song about breast recon patients. She plans to premier it on October 29th, at a charity event to be held in New Orleans during the annual meeting of the ASPS, otherwise known as Plastic Surgery 2012.

From the many, many stories I’ve heard, and the post-op patients I’ve treated, some of the worse offenders in the lack-of-full-disclosure sweepstakes are plastic surgeons. For my previous thoughts on this subject, here’s my post, Under Construction: An Alternate View. So, no, despite Dr. S, I do not trust the ASPS to provide full and complete info about recon and its risks. My fantasy guerilla action would be to show up at Plastic Surgery 2012 with Florence Williams, and hand out copies of her chapter on the ugly history of breast implants and augmentation surgery, from her book, Breasts — A Natural and Unnatural History. [My review of Williams’ book is here.] Or maybe force the attendees to watch Pink Ribbons, Inc. while they’re noshing on tidbits prepared by Emeril Lagasse.

Already, I’m having nightmares that National BRA Day will encourage more of those coy, idiotic Facebook memes about bras that purport to raise breast cancer awareness. If you’re among the two or three women on the planet who don’t know what I’m talking about, I describe them in my post The Pink Elephant.

No accident that Plastic Surgery 2012 is being held in New Orleans, the home town of the storied Center for Restorative Breast Surgery, often referred to simply as NOLA by recon patients. NOLA is where a friend of mine had her recon, and developed seemingly every post-op recon complication known to exist. Had I known about BRA Day before I saw Dr. S, I might have asked her what she thought about it. Nothing like having your professional organization make a circus out of the prime focus of your surgical practice. Nothing like making more of a circus out of breast cancer, or a marketing opp out of patient education.


Postscript: wanted to add a few links here. I’ll give the ASPS credit for this link to a decent outline on what you need to know before having breast recon. The issue is, as always, how does this get put into practice?
Breast Reconstruction

I’ll also repeat the link for some recent research about lipotransfer and its risks.
Lipotransfer and Safety Concerns

Finally, these are the questions I assembled from the wonderful advice and comments on my previous post:
Lipotransfer: Questions for your plastic surgeon


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This entry was written by Kathi, posted on Tuesday, June 12, 2012 at 07:06 pm, filed under Fighting the Pink Peril, Research, Surgery & Reconstruction . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

25 Responses to “Breast Recon Update: Lipotransfer, Opportunism & BRA Day”

  1. What a great recap on your visit. This surgeon you spoke with is a keeper, for sure. I’m so glad she was honest with you and at the same time, am sorry you couldn’t go ahead with any kind of reconstructive work. One of the first questions I asked my breast surgeon was, what will this look like? This is something we need to keep discussing.

    And BRADay. At first I honestly thought this was a joke. When women can’t even afford to be screened and/or have to delay treatment for financial reasons this seems incomprehensible to me. I find it an unfortunate marketing campaign for women who have insurance, or for those of us in the “market” for breast reconstruction. At this point in time, with excellent information on breast cancer at multiple sites like breastcancer.org, and the connection each survivors has within her own community, I also find it close to incomprehensible that a woman from almost any walk of life would NOT know that reconstruction was possible after a mastectomy. I don’t know this for a fact, and would like to look at ASPS oft-cited data that only 33% of eligible patients opt for reconstruction. Is is really because they don’t know? Or is it because a full-discussion of options was discouraged due to her health, lack of insurances or financial resources, or her personal choice? Not every woman chooses reconstruction at the time of the first surgery. I know I didn’t. But what will another awareness day add to all this? Lobbying congress to declare “Reconstruction Day” is hardly what I’d call progress. Lobbying congress to simply retain the level of support they already have in place now for DOD funding is going to be a major push in and of itself.

    A grant from ASPS to fund a clinical trial like the one you were describing would have ultimately contributed to science and helped women. But that doesn’t wrap around for a pretty web site and a song, does it?

    Thanks for writing,

    jms

  2. I love Dr. S. I love that you had an intelligent, thoughtful (not as in kindness… but as in using some substantive and actual **thoughts**) conversation about the procedure. THIS should be held up as The Gold Standard for what should happen in any doctor’s office.

    As for BRA day, don’t even get me started. Do we really need another awareness campaign? Who’s funding this sh…. umm crap? Couldn’t we get those funds in the hands of a researcher who might actually get something done.

    I’m so through with awareness. October 17th, you say? I’m ready to get those beads and turn October 17th into “Fat Tuesday, Breast Cancer Style” …..

    Another stellar post!

    AM

  3. Honestly, Jody & AM, I might have to rearrange my October vacation plans…and yes, I knew I could count on one of my sistahs to point out that perhaps so few ‘eligible’ patients opt for recon because, like myself, we don’t want to go through multiple surgeries and risk complications. Oy.

  4. Um. National BRA day? I understand the need for education but..

    Please. Make it stop…

  5. I know, CB. They just had to get cutesy about it. Which is when they lost me. And revealed their agenda.

  6. I’m a Dr. S fan as well, and secretly hoping she’ll stop by #bcsm…she’s our kind of doc!

    I agree, sadly, that the lack of information out there is astounding. Having opted for neoadjuvant chemo, I had lots of time to consider a range of surgical and reconstruction options. But it was only with those 18 weeks of lead time that I felt I could fully analyze, digest and decide what was best for me. I opted for a 13-hour-long bilateral mastectomy with immediate free flap recon. I am fairly certain that my plastic surgeon answered every conceivable question, many more than once; my first consult lasted over an hour, and he remained available by email as I was making my decision. There are a few gems out there – I’m glad you found one, Kathi!

    And National BRA day??? Maybe it would be better to just be a @^*#ing banana!

  7. LOL, Lori!!

    Dr. S saved me from a lot of needless inconvenience, discomfort and time out of work, the way I see it. A less scrupulous plastic surgeon may not have done so. I’m definitely going to get back to her with details on our #bcsm chats. We could use a solid plastic surgeon there. And I know she’s up on tech and social media. When she gave me the info on other docs I could talk to, she looked them up on her smart phone and showed me the screen. Meanwhile, I took notes on my netbook.

    😉

  8. Sounds like you found a surgeon with ethics !!! Yay!!!

  9. National BRA day? I think I just threw up in my mouth…gross. I had an amazing plastic surgeon and am still very happy with my DIEP. Yes, more surgery than I originally wanted, but the results (good sensation, GREAT natural feeling) are exactly what I needed. He was also very honest with me and didn’t suggest anything I couldn’t handle.

    Best of all? He didn’t push me. It ended up being 14 months between the original surgery and the DIEP and I really needed that time (despite looking lopsided for a bit). Nearly finished now, just need tatooing and there are days I completely forget all that happened…for me, that’s a great thing!

  10. Hi, Jen! Makes a huge difference if you know what you’re in for and if the result works for you. I’m so glad you are happy and feeling well!

  11. Congrats on what sounds like a great consultation! As far as the BRA day…no question that many are not informed of their options for reconstruction, but as you said, many undergoing lumpectomy are not informed about the potential issues they may face either. We can’t anticipate every complication, but patients need to be educated by their physicians. NOT by their politicians.

  12. Well put, Deanna. I don’t think legislation is always the best way to go. ‘Feel-good’ bills like this often end up being meaningless in the real world.

    I hate being so hard on docs, but lack of info is hard on us patients, and we’re what matters. These days, even with a lack of office time, there are so many resources a doc can refer patients to regarding education. I work a lot with the patients of a local ortho team that has gotten much better over the years about preparing patients for the consequences of their surgery, thanks in large part to input from patients and from us rehab therapists. Their ortho patients now have a pre-op teaching session and get a notebook with everything written down. Better prepared patients make for better, safer surgical outcomes. And even with that, I find myself still doing a lot of teaching with them as soon as they come home. But then, you can’t always understand how you’ll feel after surgery until you’ve had it. Frankly, I think it would help a lot if post-op cancer patients would more often get homecare visits, at least a few for the first week post-op. Nursing is obvious, to check wounds and drains and signs of infection. But PT and OT at home, to teach people about pain management, mobility, lymphedema prevention, strategies for taking care of themselves, getting adaptive equipment, teaching their caregivers about showering, dressing, clothes, etc. — all that would be incredibly useful. I’m working on getting certified as an oncology specialist in PT. Will have to get to work on the homecare issue, too. And as far as costs go, homecare is less expensive than office visits, trips to the ER or rehospitalization because of infections, complications, etc. Homecare is an untapped resource in many cases.

  13. Kathi,
    So glad you had a positive experience with Dr. S. It takes a special kind of plastic surgeon to say ‘no.’

    At first look I thought this breast reconstruction education bill might be an okay idea because I do believe women are not made aware of all their options regarding reconstruction choices, risks and the like. After taking a closer look…

    It makes me furious to think lawmakers are legislating something like BRA day when there are so many people uninsured who are struggling to receive appropriate care. What about their options? As Jody said, it’s incomprehensible. And the BRA Day acronym is so lame, as is yet another designated awareness day in October…

    Anyway, you had quite the day! Thanks for sharing.

  14. The way the original report was written, Nancy, it appears that the legislators are not responsible for BRA Day, only the legislation itself, which hasn’t even passed yet. BRA Day was evidently the brainchild of the ASPS and the Plastic Surgery Foundation. Hence, their event with Jewel during their annual convention. You can be sure that a lot of us will be keeping a close eye on what the ASPS puts out there in the cause of ‘education.’ Actually, their site does have a decent summary of breast recon that’s several pages long, and apparently, one can get it in print. The guidelines touch on the important issues. The question is how well they are actually carried out in practice. That always seems to be the issue. The information is out there, but getting it across to each patient is the challenge. Here’s their link on breast recon:

    Breast Reconstruction

  15. Thank God we have Jewel writing songs to make us feel better about reconstruction. 😐 (but, wouldn’t it be cool if she sideswiped everyone with a “Smelly Cat”ish song about murderous boobs? I’d buy that song.)

    Love your surgeon story. <3

  16. Wendy, if Jewel doesn’t write that song, I might have to…

  17. Kathi,

    Your Dr. S sounds wonderful and ethical! Sometimes “no” is the right answer. My plastic surgeon was incredibly honest with me. Still, there was a lack of information that has left me with chronic pain, as I stated in a past post. Nevertheless, he did the best he could do, and I’m grateful.

    In terms of BRA day, Oy.

  18. Oy back, Beth. I do, of course, plan some further snark & culture jamming about BRA Day. It’s really asking for it, I think. 😉

  19. I didn’t opt for reconstructive surgery. I guess I’m just afraid of plastic surgeons, plus my soon-to-be-ex didn’t like the idea. I needed someone to support me and take me to appointments if I was going to dive into that option with both breasts. I’m glad you found an honest plastic surgeon. The term is almost an oxymoron.

    That BRA acronym doesn’t surprise me, nor the titillating hoopla surrounding any of this breast augmentation stuff. I’m glad you and so many others in our blogging community are exposing these organizations for what they are: shameless.

    Write on! xx

  20. What’s really sad to me about plastic surgery is that it can be an incredibly noble and restorative specialty. Like Dr. S’s partner, plastic surgeons can restore and help reattach extremities & facial parts injured by trauma, correct cleft palates, all kinds of splendid stuff. But the strictly ‘aesthetic’ stuff and the body-sculpting stuff — big sigh. We’ve all seen what some people look like who seem to be addicted to ‘improving’ the body they were born with, instead of improving the kind of people they are. And there are always plastic surgeons who will go right down that slippery slope with them.

    Thank goodness for the honorable ones, who do help so many.

  21. […]  The Accidental Amazon, for providing this link/info regarding the numbers and also for her recent post about this […]

  22. Snark away, Kathi! You are right: BRA day is really asking for it.

  23. I have never before seen this information presented so clearly as it is here. Now I can better understand my girlfriend’s implants. She got breast implants in Chicago and I never knew much about the process. Thanks for the post!
    -Eric

  24. It’s no minor procedure, Eric. I hope she is not having problems or capsular contractures with them.

  25. Kathi,
    The thing about fat grafting with liposuction, with BRAVA, is that it’s kind of boring for plastic surgeon for all the right reasons. no cutting – infection rate is lower as result, not to mention scarring. Lots of engineering and artistry and requires great skill, but it’s the cutting that’s fun. Dr. S overcomes that and acknowledges that it’s interesting enough that she wants to be in the study – good for her. And the link you included on the risks of the procedure actually was pretty supportive of the procedure even as to mammogram risk. And it’s worth emphasizing that for women who have mastectomies – even nipple-saving, they probably won’t be needing any mammograms – this is the case for me and I’m being treated at a famous center by a renowned surgeon. She blessed my going to BRAVA’s founder for my reconstruction – he does not use the stem cell technique. I planned to go to him even if my lumpectomy had worked. Why wasn’t there worry over that? Studies show that the additional calcifications are not cancer, and that this is revealed by standard biopsies. Maybe that leaves a tiny scar, but if scarring is the issue, fat grafting is the clear winner. and if you go to the trouble of getting this technique, by God you will have no problem making sure your mammograms are done by radiologists specializing in breasts.

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