Beware: Athletes who choose reconstruction may regret it

As far as the abs and such - I had a hard time doing abs for a long time.  I had a lot of rib pain on the upper right side.  I can tell you that the thing that has made my aches and pains go away is yoga.  I can't believe how much this has helped me.  I have been doing it for 1 1 /2 years now 1-2 times a week and I think it should be recommended to all BMX patients.  My ribs no longer hurt.  My shoulders have regained their range of motion.  My arms are stronger.  And most of all, yoga helps me clear all the BC junk out of my head and have a positive outlook on things.  Just wanted to share....FYI

This is a bit off the original topic, but remember that anyone with any nodes removed is also at risk for lymphedema.  You need to take care to build up upper body strength slowly and safely.  Believe me, you do NOT want to trigger lymphedema. 

Here are some guidelines from the Stepup-Speakout.org  lymphedema website about how how those of us who had any nodes removed can exercise safely now that we have lymphedema or are at increased risk for LE. Here are the links.

stepup-speakout.org/Handout%20...

stepup-speakout.org/Trainer%20...

The first link gives some quick guidelines on safe exercise. If you want to start or resume your exercise program, this documents can give you some helpful ideas about exercising safely. 

The second document is designed for exercise professionals.  You may want to print out a copy of this and give it to your personal trainer or yoga instructor or any other fitness professional you use.  The document will familiarize them with lymphedema risks.  With better informaiton, they can work with you to make sure you're not inadvertently engaging in risky behavior that could trigger lymphedema. 

I think I'm one of the fortunate ones here. I am a competitive tennis player and I had a BMX with silicon implants with Alloderm and no real problems or limitations that I can see.I have some distortion with certain movements but I expected that since the implants are under the pec muscle. I went almost immediately to PT after surgery. I also have a total shoulder replacement on my dominant arm and I was particularly concerned about not losing any ROM or strength in that arm.I do not do push ups only because of my previous shoulder problems not because of the implants. I do agree with the poster that said you should thoroughly discuss your lifestyle with your PS so everyone knows what limitations may or may not be ahead.I would never dissuade anyone from having implant reconstruction.I think it's the least complicated of all the options and it can always be changed.

Not-me,

I think you mean sub pectoral. That is where the TE is placed, under the muscle, because the breast tissue has been removed.

My reference to hip replacement was only in regard to muscle cutting,unless you've had an anterior replacement done.I guess all i'm really trying to say is that I found the original post to be very frightening to those that are contemplating the process and I wanted them to know that this complication is not common.For many, reconstruction goes far beyond being only cosmetic.

Orthopedic surgeons have honest discussions with people all the time about the options after an ACL tear.  Some people don't need a repair because their activities are biking and walking.  Some people need the strongest graft they can possibly have because they're going to return to their Division I basketball teams.  It's so disturbing to me that so many plastic surgeons don't have these types of discussions with women after mastectomy.  Implants will obviously effect the function of the pecs by changing the force vectors within the muscle.  That's not going to matter for some women, but if there's good reason to think that it will matter I think it needs to be on the table.  

Hi Gran,

I've been following this thread and just wanted to say that I hope you're not too hard on yourself about this--you clearly asked the appropriate questions; it's just that the answers you received were inadequate.

I'm active, though definitely not a serious athlete, but I did care about being able to do everything I'd been doing before (walking, hiking, working out). When I had a consult about reconstruction, because I'd had radiation on one side and was deemed too thin for most flap surgeries, I was advised to have lat flap reconstruction. I was at a Harvard teaching hospital, yet I feel the risks of muscle weakness and pain were totally downplayed by the PS. Even with the information I had, I began feeling very anxious and decided to have my BMX without reconstruction. Only later did I really become aware (through reading on this website and elsewhere) of the many possible complications from the type of reconstruction I had been considering.

One thing that I have heard is that it is particularly women such as yourself, who have very well-developed pecs due to strenuous athletic activity, who are prone to "animation deformity." So, I think it's very appropriate that you post here to let athletic women know about the problems they may encounter if they proceed with implant reconstruction.

I feel there's a lot to be said for delaying reconstruction--more time to research your options and possible complications, plus time to see what it's like to live breast-free. Some women don't like it and become more committed than ever to having reconstruction while others realize they're happy without it. On my non-profit website, BreastFree.org, I frequently hear from women who are considering deconstructing, i.e. removing their implants. Most who go ahead with it are glad they did. Many, though not all, experience complete alleviation of pain and a renewed ability to engage in athletic activities.

Barbara

I for one am glad that Gran started this thread and I think the title is 100% accurate. Athletes should beware before they undergo reconstruction. They should discuss with their PS what types of activities they do because if they don't, they might regret their choice of reconstruction or even their decision to have reconstruction. That seems to me to be excellent, practical advice. Reading the responses, it's clear that quite a number of women have had problems - so it's not at though these types of problems are that rare.

When women make the MX or BMX decision, they are thinking about the benefits of getting rid of the cancer and reducing their future breast cancer risk. The possibility of long term problems rarely enters into the decision-making process and it's rarely brought up by those who've already gone through the process, not even by those who are experiencing problems. As a result, too many women go into the surgery without understanding what might happen. Don't we have an obligation to be honest about the risks so that anyone choosing a MX and reconstruction can make an educated decision?

Are all women negatively affected?  No, of course not.  But a surprisingly high percentage of women, particularly those who have implant reconstruction, do experience long-term problems.  Most of the problems are manageable but not everyone is so lucky.  And what is manageable to one woman might not be manageable to another.  Lifestyle - including one's involvement with athletics - is a factor.  For me, I'm not particularly athletic, although I admit that there are some activities that I used to do that I just don't do anymore because I don't like how my implant reconstructed breast reacts and feels afterwards.  Where I notice my MX and reconstruction the most is when I do something that I don't usually do - travelling and dealing with suitcases is one example. Lifting heavy suitcases into and out of the car, or hoisting them onto and off of baggage carousels always leaves me with an achy breast for several days.  Since vacations are supposed to be fun and carefree, honestly, this is one of those small things that really p!$$@$ me off. 

I didn't comment earlier because I don't have anything to add to a discussion about concerns with reconstruction for athletes.  But I am surprised at some of the criticism that's now coming out about this thread.  If someone started a thread that was titled "Reconstruction is the best!", no one would be suggesting that the title and thread are inappropriate because not everyone is so happy with their reconstruction results.

Beesie, thanks for that post.  I was feeling that, but unable to put it into words.

Gran, I think you mentioned back somewhere about concerns that insurance won't pay to have the implants removed.  The WHCRA (Womens' Health Care Rights Act) of the 1990's mandates that if an insurance company cover mastectomy, they cover complications of mastectomy and reconstruction.  I think the act was mainly meant to ensure everyone could have access to reconstruction, but I used it to my advantage to get a small surgery to release a tethering axillary cord covered (my cord was not the usual axillary cording, which does not generally require surgery).

Although I never seriously considered reconstruction and have fairly happily stayed flat, I am a pretty darn serious athlete at the sports I do - very different from yours - and this thread has been one that has really stirred my empathy.  I was more than disappointed with my interactions with two plastic surgeons when I was trying to get my cord taken care of.  First utterly blew me off and didn't even examine me, second had no clue what to do.  They were so focused on their assembly lines of reconstructions they had no time for someone like me, who as it turned out needed a 15 minute procedure that I got done by a PS specializing in burns.  I figured with his burns training he'd have more interest in functional issues, and he did.  My probem was that when I raised my arm suddenly, I'd get this YANK! when the cord went taut.  I had good range of motion, but it was uncomfortable and really distracting when I was jumping up for a ball over my head.  I am sure that either of the first two PS's, had they cared to put a little effort into it, could have done what was essentially the same as a vasectomy on my cord - tiny incision, remove a few cm of it - but they didn't respect my functional goals enough to put in that effort.

I think there's a not-so-subtle objectification of women in the PS/reconstruction industry, that treats everybody the same.  We're not.  We're more than how our breasts look.

Gran, I wish you all the best luck with this.  I was thinking about you today, and what came to mind was the amazing recovery of abdominal muscles after a woman has a baby.  The skin, not so much, but my muscles at least made a heck of a lot of recovery from that stretching.

Up until 10 years ago it was thought that  after a mastectomy woman should not participate in any form of exercise. Thankfully that is no longer true!  I belong to a cancer survivor dragonboat team. About 11 years ago  several members of my team participated in a study on the benefits of exercise for women that had been diagnosed with breast cancer. The study proved that exercise was beneficial both physicallly & emotionally. Today we have over 100 survivor members and race around the world.  There is an inspiring documentary film, Awaken the Dragon, about our team showing at film festivals around the country. Hope you get a chance to see it.

This has been a great discussion.  Please consider that some of the discomfort and pain folks are experiencing may have resulted from the primary surgery.  Removing a cancerous tumor can involve cutting into & damaging the chest wall, muscles, veins &/or nerves. Scar tissue may develop and tighten. Thus some of the pain folks are experiencing may possibly be a result of the original surgery.

It is now definite that I will have a masectomy for my right breast and maybe also for my right one depending on the result of the genetic test.

Doing reconstruction using a muscle or getting implants is no option for me - in my eyes that would be insane to do for a young and very active person.

The only option for me is a DIEP flap which should be possible (I have enough belly tissue for one small breast) and I could also get a skin sparing masectomy. It is not clear yet if I need radiation as they have not yet biopsied the lymphnodes (they will do that during masectomy) but there is evidence that 1 or 2 may be affected from the PEt/CT scan.

I have the feeling that the plastic surgeon wants to wait till after the chemotherapy with reconstruction but the surgeon that does the masectomy said that this would mean I loose my breast skin as he could not do a skin sparing masectomy without immediate reconstruction - is that true? He said the skin would not survive. Can anybody tell me if that is really the case? It is also such a pain to reach them personally and get appointmens.