Beware: Athletes who choose reconstruction may regret it

bdavis

Hi Gran... I think I asked this before, but will ask again... If you want breasts and don't like the implants, why not get a flap? I have flaps and there is no pain, no iron bra feeling, no muscle involvement and no issues with exercise. Do know you have options besides implants and/or going flat. There are other ways to get breasts.

Gran

Hi bdavis,

I don't have any fat on my abdomen so I am not a candidate for a DIEP flap.  Also, I really don't care whether or not I have breasts (my boyfriend does).  I just want to get my function back.  It's all about strength and function and being able to do the extreme sports I used to enjoy every week and have not been able to do since my surgery in 2010.  That is why I think this thread is so important.  

If there is another woman out there who is trying to decide what to do, I think it is important to point out that you lose strength and function with subpectoral implants.  Obviously the extent of loss of function depends upon each woman and how the surgery is performed, as well as what types of exercise the woman does.  In my case, my pecs were super important and thus I made what has ended up to be a very bad decision.  I just wish I could find a job that offered health insurance, because my private insurance is terrible and would leave me with a huge bill to remove the implants.  My PS will not remove them in the office because of the extensive use of Alloderm, etc.  We'll see what happens.  I may call him and see if he can give me an estimated cost and a payment plan!

Gran 

bdavis

Gran... what about other flaps, like GAP flap. I had a GAP flap surgery, and have met many thin women who have also used the buttocks. It is expensive though. And if I didn't have insurance, it wouldn't be possible.

Gran

Hi bdavis,

I don't want any more invasive surgeries.  I just want the damned implants taken out.  Plus, I don't have any more fat on my butt or legs than I have on my stomach -- believe me, the doctors looked!  

Gran

coraleliz

Just a thought, can you negotiate the price of removal? I know it's awkward but if the PS isn't really all about making money, maybe he/she has a heart & will understand what you're going thru. Maybe you can get a "professional discount" for being a RN. Since you have some insurance (just not a very good policy), that might work against negotiating. I'm an athlete & RN(working per-diem). My heart goes out to you & hope you find some resolution soon.

bdylanfan

Gran,

I agree with you! It's very important for all of us who've had problems to stick together and help each other out. 

Thank you for your posts.

cyano

Gran - THANK YOU for this post. This information just isn't out there. I had single mastectomy a year ago and the surgeon/oncologist/etc. etc. strongly encouraged me to consider an implant given that I would be lop-sided even though I have small breasts. I just don't have enough body fat anywhere for a flap and there was no way I was going to let them take muscle for reconstruction. Everyone I talked to insisted that inserting an implant under the pectoral muscle would have no effect on the strength of the pectoral muscle, but I was dubious. I'm an avid rock climber/mountaineer/skier and like you said, the pecs are essential. There's no way you can get up a route let alone an overhang without using these muscles. So I didn't have reconstruction. I keep re-thinking whether I made the right choice and your post affirms that.

LilacBlue

Gran, there is a statistical failure rate with all types of recon and I'm sorry to read that your experience - your result - has fallen into that category. I choose a diep recon for the main reason that my left side full range of movement would not be compromised, as I too am very sports active. After one year out, that has finally happened, with weekly physio, seeing an orthopedist and pushing forward in staying active (I now run as well). It has not been a smooth, forward recovery. 

I think you are doing a favor to many women on the fence by highlighting that the choice of recon may have a negative impact on future one's sports participation.  Your choices do sound limited to continue with recon for the physical outcome you desire.  I really hope whatever your next step is does resolve limitation and that you can get back to a better level of movement and being as active as before.  

Gran

Cyano,

I am SO GLAD that you listened to your gut feeling and did not have the subpectoral implant.  I went ice climbing twice one year after I'd had the implants put in and even that was difficult and the implants distorted horribly.  Plus I was so afraid of the ice axes accidentally poking one of the implants.  As you know as an avid rock climber, rock climbing takes a fierce amount of upper body strength when you get to the harder routes or overhangs; ice climbing is essentially a leg-based sport where you use your arms and ice axes mainly for balance and only minimal support.  You really can't compare the two.  It is my belief that you would have been hindered to an enormous extent had you allowed them to put in a subpectoral implant.  

Lilac blue, 

I don't believe I am a "statistical failure."  The surgeon did nothing wrong surgically, but she did fail when she did NOT listen to me as I told her about the extreme athletics I needed to do post-reconstruction.  If she had listened, she would have advised me against the surgery or at least told me to wait and do more research before having it done.  That is why I am so adamant about this thread and at least letting women know from other survivors (not their doctors) what the reality of a post-reconstruction life can be.  

My pecs are cut forever (the cut muscle on both sides will never grow back together, even if the implants are removed) but there are plenty of women like Cyano who are on the fence and this thread can make a difference for them.  It's their choice in the end, but they need to make an informed choice.  Look at all the women on this thread who are having regrets.  It saddens me to hear their stories, but their stories must be told to help future women make the right choices for themselves.

Gran 

bdylanfan

Cyano,

I think you would be wise to wait. You could always decide to have reconstruction later. I think I would have been better served to wait till my double mastectomy had healed before having reconstruction.

I think time it the only thing that makes us feel truly whole again - not reconstructed breast(s). 

Tell this to your surgeons and see what their reactions are. If you felt "strongly encouraged" by them, it's because Gran has a point.

The last time I was in Plastic Surgeon's office I felt "strongly encouraged" too. I was telling him how much I wanted implants out. (They've been a real source of problems for me. I have back problems and the weight of these implants is making my back worse.) He "strongly encouraged" me to go ahead with smaller implants.

In the 3 1/2 years since my mastectomy I've had about 60 office visits to my plastic surgeon, many surgeries (DMX, implant exchange, reconstruction of right implant with addition of alloderm because supporting tissue under implant tore, nipple surgery). I've had a bad experience. If I'd know how much was involved I'd have walked away. Sometime I feel like I've finally woken up and realized that I'm just a novice gambler in a Las Vegas Casino. They control every thing, the only control I have is just to walk away.

The best to you!

bdavis

Gran... For me, I had the luxury of time to research before surgery (was in chemo) and spoke with many women and read posts about women who had similar complaints about their implants... Hence my decision for a flap surgery. But the big problem I see is that breast surgeons don't tell their patients that they have options. And what ALL the SEs can be from each option. BS and PS paint a picture of perky boobs for life. My first consult wanted to do a lat flap (using muscle) and an implant on cancer side and just an implant on non-cancer side... he wanted to put in a 600cc implant of something... All he mentioned is that I probably couln't row. Well, I left there knowing I would not do that.

So I feel disclosure (or lack thereof) is the biggest problem. And I feel for women who didn't know the possible problems and now have to spend time and money trying to fix it... and it may not all be fixable.

Gran

Hi bdavis,

I agree wholeheartedly with your statements.  Doctors do not give us all of our options.  In my case the best option would have been to just have the mastectomies and wait on any kind of reconstruction until I had the time to make the best decision for myself based on researching the pros and cons throrougly and speaking to women athletes who have actually had the surgeries.  Thanks for your post!

Gran

argynis

Cyano,
I made basically the same decision (I got the TE removed after having it under the muscle for 1 week) - I am also an avid rock climber/mountaineer/skier. I may have enough body fat for a flap reconstructon at some point but at the moment I am happy without a breast.

Lilac,
I do not think that Gran's reconstruction was a "statistical failure". An implant under a pec muscle is impairing its functionality and a thread like this helps women that are active to make an informed decision. For the standard 60yr old women this impairment may not be noticeable at all in their daily lifes but, like in my case, for a 28 old woman that likes to ice climb this can make a huge difference.
I think we are doing many women a favour by speaking up and making them aware of the implications of their decisions.

LilacBlue

I'm sorry if I offened anyone and not at all my intention.  I've come to realize the plastic surgeon provided Gran the recon that was  choosen, without surgical negligence.   

My experience is entirely different in that I was fully informed of the options, two were taken off the table (implants)  because of my known sports activity and opted not to have a tram because I did not want any muscles cut.  I possessed enough stomach fat for one small breast, to match my small healthy right breast.  In this country woman are not offered a prophylactic mx/recon (nor covered on private insurance), except when both breasts are compromised or genetic predisposition.   Researched all options, including having a mx without recon, viewed online result photos, Youtube animations and real time surgery, read blogs, threads on many bc forums worldwide and professional websites.  Signed consult forms before being wheeled into surgery stating I understood and agreed with all surgery to be preformed because it was explained to me in full of what the procedure included and desired outcome. 

Perhaps here in the UK, they lay the facts out in full?   By the way,  If I were using the NHS exclusively to have my treatment,  would be offered a mx without recon, placed on a waiting list (usually up to two years in my area) and then offered recon when my name got to the top of the list.

I was unhappy for the first three months with the change and heavy feeling, frozen left shoulder and slowly over time, all has come back to being the "new normal" with full range of movement and useage. I'm more fit now than before surgery including snow ski and running.  As time passes, my perspective as a woman in treatment changes as well.

Argynnis, I agreed and still do with the intention of this thread that Gran started as I said before:<I think you are doing a favor to many women on the fence by highlighting that the choice of recon may have a negative impact on future one's sports participation.> 

Another point not covered, many women, up to 40% grapple with lifelong lymphedema after lymph node removal and regardless of recon those women would not be advised to lift their own or any heavy weight.

cyano

I thought that weight lifting was now considered safe for many women with lymphedema and may even be beneficial provided a compression garment is used and the exercise is well-planned.

I know one woman who has lymphedema who rock climbs outdoors, backpacks and skis. She wears a compression sleeve and watches carefully for scrapes etc. which can lead to infection.

Anyhow, I have no plans for reconstruction and it's good to know that there is some support for this decision. I didn't ice climb or do any winter mountaineering this year; I had a rough go with chemo and it's taken a while to get my strength and endurance back. I'm looking forward to getting in some mellow climbs this summer.

Argynnis - where were you skiing in your picture? It looks like great powder.

MsBliss

Gran,

Are the implants partially under the pectorals or fully under the entire pectoral?

It makes a BIG difference for some.....

If they are fully under the entire pectoral, then an exchange wherein a much smaller implant is placed only partially under the pectoral may be a good option.

Best,

Bliss

LilacBlue

If LE is an issue the best place for understanding:
www.stepup-speakout.org/riskre...  Yes, studies shown weight lifting and it can give positive results in management and it's not for everyone dealing with LE.  I was at pink ribboon pilates today, three woman wearing in sleeves and all were told no weights, until they can get more control of their LE, by their therapist (all have the same, only one in the area).

sdstarfish

I had a dbl lat flap, and I regret it every day. I have never regained my range of motion, and about 2 years out I had a very painful frozen shoulder. Not to mention the fact that my foobs flex in a really odd way that cannot be repaired.

Anonymous

This thread now scares the sh*t out of me...I'm an athlete scheduled for nipple delay and then skin-sparing BMX/immediate recon with alloderm implants and hopefully no expanders in about two weeks.  PS said he can fat-graft later if we need to fill in and round out a bit. But no tram/diep flap because I didn't want to compromise muscles.

I'm a size A cup and staying an A. cup. PS agreed. I weightlift, hike, do bikram yoga faithfully several times a week, run sometimes, bike a lot. Kayak sometimes.  Should I be concerned? 

Claire

Anonymous

I should say he's going to use alloderm for the recon...

Claire

Anonymous

Gran

thanks for your post - "conveyor belt" is the perfect description of the hospital where I had my BL.  Am SO eager to have my very small implant removed next week, 6 years after it was put in.  Don't know if it's partially under the pec, or completely under pec, just know I HATE the feeling, and SO REGRET having any reconstruction.  Like Gran, I just didn't want MORE surgery, or more extensive surgery than the removal of the breasts.  Age was & is a factor for me - and I hope other women will CONSIDER if they're younger ( I'm now 68, 62 at diagnosis) - as the natural body fat, DIEP's, etc are for life ( we hope) where it is EXPECTED the silicone implants will have to be removed in time.  Length of time may vary, but we KNOW they will have to be replaced.

PLEASE LISTEN TO GRAN - and make sure you are not placed on the "conveyor belt" while you are newly diagnosed, probably  in shock, scared, - YOU HAVE TIME for reconstruction later, after other treatments.

Great thread.  Will let you know the process of "explants" hopefull next week.  Angel PS will be doing in her office, she says it is usually quite a simple procedure - lidocaine, and small incision on side of foob - takes it out, done. 

argynis

Lilac, Sorry for the misunderstanding!

Claire, DIEP flap or SIEA flap reconstruction does not use any muscle tissue (just fat) that is why this would me my #1 choice if I decide to get recon at some point. Would you have enough body fat for that?

Sunflowers, Good luck!

NatsFan

cyano - just so anyone who is curious to know more about that weight lifting study - here's a link for detailed info on it from the Step Up Speak Out site Lilac mentioned:  http://www.stepup-speakout.org/Weightlifting%20and%20Lymphedema.htm As Lilac indicated, it's not quite as optimistic as it was reported in the press.   

The key to any activity after node removal is to start slowly - like with one pound weights.  Work up GRADUALLY and back off immediately if there's any signs of swelling, heaviness, etc.  And weight training should never be done by anyone with unstable LE.  Here's the Step Up Speak Out guidelines for exercising safely after node removal:  http://www.stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf

Just again to clarify, not everyone with LE can do what your friend does - some people with LE or who are at risk for LE are able to gradually work up to a lot of upper body activity, while others who are just as cautious will reach some sort of "ceiling" that can't be exceeded without triggering an LE flare.    

argynis

NatsFan, Thanks for the link! Triggering LE scares me a lot too. I just don't know how fragile my lymph system is now that 26 nodes are missing. I wish they would scan the lymph nodes a person has before surgery and adapt the number of nodes they remove during an axillary dissection individually to each persons lymh system. I also read that they started to do lymph node transplants to help people who have developed LE to reduce swelling.
So far I went climbing without wearing a sleeve and had no problems but LE is always in the back of my head because I really don't want to push the lymph system out of balance. I fear I will never find out how close I am to the edge unless I trigger it and I think it the risk will get bigger with increasing age

cyano

NatsFan - I'm not saying that everyone can accomplish what my climber friend has. What I disagreed with was the comment that "those women would not be advised to lift their own or any heavy weight". It's true that weightlifting and other strenuous upper-body exercise is not advised for some or possibly even many women with lymphedema. It's not correct to give a blanket statement that all women at with lympedema should not work up to heavier lifting or work towards continuing sports they enjoy such as climbing or rowing.

Beesie

i've been reading through this thread since it was started more than 3 months ago.  Gran, thank you for starting it!  I want to make a comment based on a couple of other threads that I've seen over the past few days, and a theme that I've seen hundreds (thousands?) of times on this board.

When women are making the decision between lumpectomy and mastectomy and BMX, and when they are deciding whether to have reconstruction or not, the focus seems to be mostly on cosmetic appearance. Yet after the surgery is done, I've seen dozens (hundreds?) of posts that say "Don't get me wrong, my reconstructed breasts look great, but...." and then the women go on to talk about problems with pain, movement, contortion, flexibility, loss of sexual sensation, etc. etc..  When we are losing a breast, many of us think that what we need is something that physically replaces that breast.  Physical appearance. Many women choose to have BMXs because they believe that the result will be better symmetry. Physical appearance. At the time that we are making these decisions, we don't tend to think of the physical implications of a MX and reconstruction to our bodies. Too many women don't want to think about that.  And ultimately, as it affects our lives, that turns out to be a whole lot more important and impactful than the physical appearance.

I have tried, over and over again, to make this point to women who are making their surgery decisions.  I don't want to discourage anyone from making the decision that is best for them, whether it's a lumpectomy, a mastectomy, or a BMX, and whether it includes reconstruction or not.  But I want everyone making those decisions to understand what's involved and what the implications may be - such as the implications discussed in this thread - so that they make their decisions with full knowledge.  It feels so often like I'm talking to myself.  I may post about some of the issues raised here, and someone else posts saying that her "reconstructed breasts look so much better than my old saggy natural breasts!!!". And then everything I said is totally lost.

How do we better communicate to women who are making this decision so that they have the knowledge to make the decision that is best for them over the long haul?  How do we get the message of this thread out to everyone?  Not to discourage them, but to educate them and make them fully knowledgeable about their decision so that there are no nasty surprises afterwards?

Outfield

Beesie, one of the things that really stands out to me on these boards in general is that women post from their own experience.  Someone will ask a fact-driven question, and women will respond with their stories.  I think there's a psychology to that - clearly it's important to us to share these stories.  Along those lines, when our story includes details of how something worked out well for us, it validates our choice to do that thing.  I think we hope to get that type of validation from others as well.  If someone chooses what you chose, that makes your choice look better, and what better way to urge people to choose as you chose than talking about how well it has worked for you.  Then they can describe the choice working well for them, and further validation.  

My own choice was BMX, no reconstruction, no trouble making the decision and no regrets about the decision.  I do find, when I examine myself as honestly as I can, that I am prejudiced toward flatness.  The more women on the "rant" thread or the flattie FB page, the more my choice is externally validated.  I would love to be able to say that I honestly believe that women should choose from all reasonable options and have the best information about short and longterm effects, but truthfully, what my gut says is that my choice is best.  I think that's normal and I don't condemn my gut for feeling that way, I just try to use my brain to override it.  

Gran's post is scary and challenging for women who have chosen implant reconstruction, many of whom may not be active enough ever to have to worry about experiencing the same thing.  I am sure there are many women whose response "Well, mine worked out fine" is an attempt at fixing the loss of validation.  And while I certainly couldn't argue with any individual whether she had a good result or not, the plain truth is that the choice Gran made did not work out for her because of specifics of her body and how she lives, and that could have been predicted.

There is a second challenge in this thread - what constitutes an athlete?  Gran has described what she does and it sure sounds at the far end of what people do with their bodies.  I myself like to think of myself as an athlete, albeit in a very different venue.  Am I as athletic as Gran?  If I had implant reconstruction and it wasn't causing me problems during activity, would that mean I'm not an athlete?  Being fairly confident of myself as a competetive athlete, I know that would bug me.  I would want Gran's problems to be a result of some error, not the result of a combination of the downside of implants and Gran's very strong body and the demands she puts on it.  

I agree women should have access to the best information.  But sometimes we are our own worst enemies that way.  It is very, very hard for someone with a subconscious psychological stake in a person's choice to present the options without bias.  

bdavis

Outfield... all true.

I agree that women want to vaidate their choices... Its interesting though. I have semi-athletic friends with implants and athletic friends (perhaps not as athletic as Gran), and they all will say that their implants are fine... but when I press a little, like asking if they can tell they are there, they reply, "oh yes..." like its normal. IMO, feeling anything (pecs or implants) is not normal. I guess the response "they are fine" is the jump off point. I wouldn't want fine, or fine 80% of the time. So I urge women who need surgery to not only read and ask questions, but to ASK questions in depth.

Anonymous

Thanks, Bessie, Outfield, & all,  My "athleticism" extends to gardening, and reading in my rocking chair - and if I had KNOWN what these very small implants ( maybe 275cc, to 300cc, can't remember) would FEEEEEEEL like at all times, and epecially doing yoga, gentle exercises, I NEVER would have had them implanted.  In hindsight, realize I was EASILY "talked into" this process by the surgeon & the plastic surgeon she worked with at the hospital where they both worked at which I had the BLM.

Developed seromas while wearing the unnecessary expanders, immediate reconstruction was never given as an option, so my "playing it forward" is a part of my participating in theses threads.

BTW, the oncologist at the same hospital ( I was E+, node negative) when I asked about a possible test to determine the efficacy of chemotherapy ( expecting her to tell me about the Oncotype DX test) replied, "well there is, but it's very expensive." I was amazed, and knew that second I was DONE with that hospital.

Have received EXCELLENT treatment from the "new" PS, and fabulous wonderful feel blessed to have been a patient at Dana Farber ( my second opinion for chemotherapy) and so, so, so, so worth the hours of driving to get there.

I think Gran, Bessie, Outfield, bDavis and all speak for MUCH, MANY more women than "athletes" - and hope their voi es are heard by ALL women facing bc.  Thanks again for this thread - maybe a slight change to Gran's OP?

Beesie

Outfield and Betsy, interesting points!

Outfield, I agree with you that it's pretty much impossible to be objective in this discussion - we all post from our own experience.  But what I find, and what you and Betsy are both very politely saying, is that what we post or say is not always an honest representation of our experience.  Instead, we tend to speak up about the things that validate our decisions, to reassure ourselves and others that we made the right choice.  What that also means that we often don't speak up about the things that might make someone think twice about making the same decision. I can't count the number of times that I've seen women post in one thread talking about pain or problems or lack of symmetry or the need for more surgeries, etc. and then in another thread post to a newbie that "my BMX and reconstruction was the best thing I ever did!", without any mention of any of the problems.  It's this lack of full disclosure that worries me, because it means that we - those who have the experience and who newbies struggling with this decision come to for advice - are being complicit in hiding some of the truths about what's really involved with a MX and reconstruction.

I think I am in a bit of a different position because for the most part I didn't have a choice about my MX and the type of reconstruction.  I needed to have the MX, and the only reconstruction available to me other than implant was an I-GAP (bottom of the butt), which didn't seem like a good choice for someone having a single MX (I had visions of my backside in tight jeans with one side being higher and tighter than the other). I could have gone without reconstruction but at the time that wasn't an option that I could have lived with... today I would probably make that choice.  Betsy, this is where you and I have disagreed sometimes in the past but I think that because I don't have much of a personal stake in the type of surgery I had done, I can be more honest about it.  I had implant reconstruction and with no bias (or not much, anyway) I can present the long list of things that I think are good about it, and the long list of things that I think are bad about it.  I don't want to talk anyone into having implant reconstruction, but I also don't want to talk anyone out of having implant reconstruction.  I just want them to have the facts.

As for this thread, I think Gran was appropriately careful in saying that "Athletes who choose reconstruction may regret it".  The word "may" is very important because obviously some athletes don't have any problems at all with reconstruction, but others do. But what I will add is that it's not just athletes. I'm not an athlete. I love to walk and hike, including some pretty vigorous hiking (Macchu Picchu, for example) but that doesn't require use of my pecs, or at least not much. But I do exercise, and there are certain upper body exercises that I no longer do because of my implant reconstruction.  And I travel, and I've noticed that a few days of hauling heavy suitcases really does a number on my pec muscle. Maybe if it was something I did all the time, I wouldn't notice it but because it's something I only do every few months, I almost always get any achy pec muscle when I'm travelling (except that now my DH refuses to let me lift my own suitcases, which is kind of him but pisses me off that I can't do this for myself). I'm exactly (almost to the day) 7 years out from my implant placement.  Thanks to an excellent PS, I was very well informed about what to expect with my reconstruction, but did I ever think that something like this would be an issue 7 years later?  No.

Are my relatively small issues a reason why someone else should pass on implant reconstruction?  Or Betsy, are the rarely mentioned pec issues of your athletic friends a reason why someone else should pass on implant reconstruction?  In most cases, probably not.  But in some cases, yes, these issues might factor into someone's decision.  And I'd rather that everyone make their decisions being aware that these things might happen, vs. going into it with no knowledge thinking only about how wonderful and perky her new breasts will be. Unfortunately, back to the start of this discussion, that's not how it seems to be. 

Edited to Add:  Sunflowers, you and I were posting at the same time.  Your example with gardening is like my example with travelling.  This really is much more than just an issue for athletes.