Beware: Athletes who choose reconstruction may regret it

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  • bobogirl
    bobogirl Member Posts: 2,777
    edited February 2014

    Gran, you are a rock star!  Found this thread while dealing with my own issues, and you story is such a hopeful one for me.

    TE trouble is a fantastic thread, and many of those stories describe mine perfectly.  I have one explanted side, and one TE left on the other side, and in early March I'm having the other TE removed.  My PS is NOT on board -- he is practically not speaking to me.  Had horrible infection and almost died.  In fact I was never that interested in recon -- wanted to rock flatness, did not want to compromise my ROM, yoga, running, etc -- but I went for what I thought were going to be very small and manageable implants at the last minute.  I became scared of scaring my seven year old daughter with flatness.  Now my chest looks like a frankenstein-like freak show, and my PS is... well, he appears to be angry and disappointed.. and I can't switch.  His is the only game in town, he's most qualified, he won't let me go to his partners, and my insurance works only at this University hospital.

    Even with all this adversity, I can't wait to have the TE removed.  I only hope my PS is hearing what I want -- I want this to be the last sx.  I want the side lumps gone, the scars neatened up.  Like Gran, I'm hoping for flatness, not concavity, but who isn't?  I'm a little worried because the PS is such an as$hole.  He hasn't made me feel at ease with my decision.  But I'm still moving forward.  People with excellent and understanding PSs, please give them a kiss from me!  I feel PSs -- along with everyone else in the world -- still don't consider going without recon to be a valid choice.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited February 2014

    Gran - fabulous news!!!  I know you can't wait to get out there and get your active lifestyle restarted.  Just a small word of warning - please start slowly.  I know how exciting it will be to get going again now that your recon problems are resolved, but you don't want to trade one set of problems for another problem - namely lymphedema.  Since you only had 2 nodes removed your risk is smaller than some, but you are still at risk for LE.  There are many women who post in the LE section here on BCO who had only one node removed and still ended up with LE.  Like you, I'd been very active prior to my dx.  I had flap recon so my athletic ability was not impaired like your implants did with you, so I was more than ready to go when my PS gave me the all clear.  I jumped into everything - push ups, bench presses, yoga, etc.  I was SO excited and it felt SO good to feel strong again.  Unfortunately no one on my surgical team told me anything about LE and risk reduction measures, so I didn't know that I needed to build up my strength slowly.  I did not take it slowly enough, and developed LE - a problem I will have the rest of my life.  I know you want to feel strong, but start slowly with ridiculously low weights, like a pound or two.  Do limited reps for a week or two, and increase your weights and reps only if you have no signs of LE at all.  Better to take extra time to work up your strength than to go all out now and trigger LE.  Here's some detailed information about how to develop a safe exercise program: 

    http://www.stepup-speakout.org/Handout%20doc%20for...

    and information you can download and give to a trainer or fitness instructor you might use:

    http://www.stepup-speakout.org/Trainer%20doc%20for...

    LE risk reduction behaviors are simple and quick.  You can still lift weights, do yoga, climb, and engage in your other favorite activities, but you need to take the time to work up to them.  Yes, you'll be going more slowly than you want.  But it's a small price to pay to reduce your risk of LE. 

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi Bobogirl,

    Stick to your guns and get what you want.  Your PS sounds like a real loser.  He should be able to take out the TE and clean up the dog ears and lumps.  Take photos before the surgery and circle the areas that you want fixed up and give them to him in the office.  I think he would have to put those in your medical record and so then you would have documentation of what you asked for.  Also email him with exactly what you expect out of the surgery so you create a paper trail.  You deserve to get what you want!  

    I totally agree with you that in this country it is NOT okay to be flat.  Doctors in the US have created a conveyor belt from mastectomy to reconstruction (under the guise of making it easy for the patient..."You don't even have to leave the operating room.  The doctors will simply switch out."  was what I was told).  When I was in New Zealand 2 years ago, people were shocked at the way Americans look at breast reconstruction.  The New Zealanders I spoke to (both male and female) asked me why I would want to cut up my muscles and lose my physicality for a couple of silicone blobs.  They're right.  It's just that here in America we are brainwashed into thinking that flat is not okay.  Flat is great, and unless you have a serious chest deformity you are NOT going to end up looking concave.  

    Plus, if you want to get prostheses like I just did, they are fantastic for those times when you are dressed up and want boobs.  They look and feel natural if someone bumps into you or gives you a hug, and you can even get them to fit inside your bikini.  I have the swim forms on order and all I need to do is pick a mastectomy suit and there are some nice ones.

    You go girl!  We are here with you every step of the way -- keep us in the loop!

    Granis

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi NatsFan,

    You are absolutely right!  And thank you for the links -- I will go there and do my research before I do anything physical.  Being a full-time student has helped me not to do to much.  Right now I am taking an accelerated statistics class and I don't even have time to think about exercise!  This class ends in 2 weeks, but then I start another class, so that is good, too.  I will definitely take your advice, especially because at times I have felt what I know were very subtle signs of lymphedema in the past.  I do know that I am at risk and I thank you for the warning to start slow and easy.  I do have some 2 or 3 pound weights I could start with at home, and then gradually build up.  I will definitely take your advice.  Thanks again for the reminder!

    Gran  

  • georgie1112
    georgie1112 Member Posts: 282
    edited February 2014

    Gran,

    So glad you are on the road to recovery! So sad that you had to endure the issues with your pecs. I wish you strength and joy in getting back to what you love!!!

    Funny, my story is the opposite. I decided not to have reconstruction because I did not want any issues with my pecs. But I sadly have not come to terms with my new body. I really hate it. So back into exploring surgery for me. I am absolutely miserable the way I am.

    Best to everyone, whatever path you are on!

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi Georgie1112,

    I am so sad to hear that you have not been able to adjust to your new body without breasts or implants.  Our stories really are polar opposites, so I know how you feel!  I hated my breast implants every waking moment of every day.  My only reprieve was sleep, and then I had to wear a bra to bed to keep the implants in place -- a total nightmare!   The day I had them removed and felt my flat chest I was ecstatic immediately!  They were finally gone after so many years of torture!  Just the opposite of how you feel as you describe it.

    I hope you are able to work with a surgeon who will listen to what you want.  I might have even tolerated the implants if the doctor had made me the B cup I wanted to be (I asked specifically for 300cc implants) and she refused to commit, saying that she had the last word.  She told me post-op that they sat me up in the OR and the OR staff thought the bigger implants looked better with my frame.  I was horrified!  A bunch of strangers ended up deciding my fate.  She put in 400cc implants (25% larger than what I wanted!) and I felt like Betty Boop!  I hated them from the beginning and so did my boyfriend.  None of my clothes fit, and my sleek athletic look had been replaced with a busty look that I absolutely hated!  Then I found out that I could not function physically and it was a double whammy:  I looked too busty and I could no longer do my sports (not even 1 push-up, let alone the extreme sports I used to do!)

    So, just a word of advice before you go plunging into the implants:  Really think about what size YOU want to be, and make sure that your PS is totally on-board with you having the final say as to how big you are going to be.  I would hate to see you get implants and not be happy because they are too big or too small!  Also consider the pros and cons of each type of reconstruction surgery you might be a candidate for.  Find out all you can from women who have had the various procedures.  Also think about which muscles you couldn't live without.  For me it was definitely my pecs and my lats -- one doctor wanted to use my lats for reconstruction and I almost freaked out.  No way was he gonna touch those.  I could NEVER have loaded my speargun without my lats!  That would have also been a disaster!

    Make sure you pick a doctor who will listen to you and abide by your wishes!  If you live near Long Island, NY, I can recommend the guy who took my implants out.  He is a fantastic surgeon and sensitive to his patients' needs.  His entire practice is about patient empowerment and he has support groups run by his staff and they also have events and lectures and all kinds of stuff to help women in any stage of this process.  Please let me know if you are close by and could see him.  

    I wish you the best of luck and if you want to talk some more you can always private message me.  I wish you peace when you are finally done with your journey as I am now -- finally done!  It feels so good!

    Gran

  • LauraLC
    LauraLC Member Posts: 54
    edited February 2014

    Such a very interesting thread.  I was very active 5 years ago when I elected to have DIEP--gym, weights, biking, hiking-- because I did not want to have implants.  Luckily after having had two large baby boys, and arriving at age 50 with some extra tummy I had enough for two B's.  I ended up with a Muscle-Sparring TRAM Flap due to the size of perforator arteries.  Unlike the TRAM flap reconstruction, with the MSTF I can do sit-ups, push-ups, chin-ups, anything.  I was on my bike 6 wks after my surgery. I now attend Pure Barre 4-5 days a week as well.   I am so thankful I did not have implants. 

    There are several options to implants, but we all must do our homework!  Best wishes to you all.

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi LauraLC,

    Thanks for your input!  I wish I'd had enough abdominal fat to use it for making breasts, but because I am so athletic I had no fat to take from anywhere.  Glad to hear you are doing well and didn't need to have implants.  

    I still have a few weeks to wait until I can begin to exercise again since my "explantation" surgery just happened on December 13th.  I can't wait to start doing things again.  I will give it 2 more weeks and then start back gradually.  I want to be full-speed-ahead by summer!

    Gran

  • georgie1112
    georgie1112 Member Posts: 282
    edited February 2014

    Hi Gran,

    Yes, Peace is what we all want. To feel a sense of normalcy- whatever that "new normal" will be. I'm not sure where my journey will take me but I am searching for something better. Thanks for writing. It really helps to talk with other women.

    I won't consider implants because they are usually placed under the pectoral muscle and I don't want that. I lift 50# on a daily basis and use my arms a lot. I use a rotary hammer drill, chisel, grinder, etc. And no one is going to touch my lats. Have heard too many stories about women unhappy with implants. I don't want a plastic bag in my chest. At least that is how I visualize them- a foreign object. I am going to consider the DIEP flap but I don't know enough about it. It is a very hard surgery but one friend said her arms are back to normal but it was a long process. But she doesn't do what I do. I had hoped to consider BRAVA, but there aren't insurance options for me here and I just found out ONE fat injection surgery for one of the ladies on this site is $8000!!! And many women need 3 or more surgeries. So no way can I afford to pay out of pocket.

    I don't undress, wear my clothing to sleep so I don't need to be reminded. I keep peaking occasionally and hope my reaction will be different, that somehow I will come to accept the new landscape but I have not. The prosthesis works fine for me. I'm glad you are comfortable with yours. There are so many options that work great! The lightweight beads are cool and I actually find the foam pads really natural looking. I find them comfortable and they look natural for the most part.

    On what your surgeon did, I really don't know why it is so very common for women to tell their PS what they want and then the surgeon puts in bigger implants. What the heck is that about???? I only know one woman who is happy with what she calls her "Dolly Parton" boobs. I've heard from so many women that are really disappointed. I hope you will consider giving your former PS some feedback. It is so unfair after everything we've been through to have to endure more, especially when we are clear with our communication. It is so arrogant of the surgeon.

    But hooray for you that you had the confidence to seek out what is right for you!!! I'm glad it feels good to you and you have found some acceptance. How horrible to have a feeling of discomfort. I do understand. I hope it won't take me years to figure out what will give me some peace. All the best, Gran. I appreciate hearing your story as it inspires me. Thank you!!!

    PS I live on the West coast so it won't work for me to see your surgeon. I made an apt. with the PS with the most experience with DIEP flap today. Will try to remember to pm you at some point in the future or post here.

  • Marcyv
    Marcyv Member Posts: 42
    edited February 2014

    Hi All!  It's been a while since I have posted as well.  So interesting that this thread has been rejuvenated.  I was just thinking about it the other day.  I'm one of those that had no idea what was going to happen to my pec muscles with implants.  I can't wipe my kitchen counter without the damn things grabbing my "breasts".  It's so weird and so irritating!  Why wouldn't the doctors say Hey, by the way, your muscles are going to start grabbing your chest and you won't be able to do anything.  Now, I totally get being responsible for your own care and doing research and preparing, but sadly I had not found this site prior to my surgeries.  It never dawned on me to ask if my pec muscles were going to gain a mind of their own.  :-)

    I am not a true athlete but I snow ski, snowmobile, ATV, I have horses, garden, etc.  I can't steer the ATV, I can hardly pull myself into the saddle, I can't climb the ladder into the loft to drop hay.  It's a bummer to be sure.  I get what was said earlier that relief only comes in sleep.  They are always THERE.  I can always feel them. 

    I'm hoping it will get better.  I'm not sure I want to have them removed but coming from someone that was excited to get a little more on top and now I'm thinking it wouldn't be so bad without them.. well that says something.

    Aside from that, the right one is having issues and is not shaped correctly and is becoming distorted.  I go in for surgery on the 26th to correct this.  I'll let you know how it goes.

    I hope women that are not athletes but are just active will also read this thread.  Heck, you don't even have to be active to be bugged by this. I had NO idea how different I was going to feel and how much it was going to bug me. I'm not ready to yank them yet, but I do wish someone would have told me so I could make a more informed decision.  Oh, and I researched all over the place, read everything I could and I never came across anything that talked about this pec issue.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2014

    marcyv-

    "I totally get being responsible for your own care and doing research and preparing"

    Please tell me you are not blaming yourself for this. The "medical system" failed you. They did not give you adequate information & expected you to make a decision. The researching I do drives my doctors crazy. Who wants to piss off a surgeon who's going to operate on you?

  • bobogirl
    bobogirl Member Posts: 2,777
    edited February 2014

    Thank you Granis!  That is excellent advice regarding emailing the ps.  I do not have his email, of course.  But I will start working on this.

    So interesting to hear about New Zealand!  Wish I was there at the moment.  Had PT today and the physical therapist is like the recon whisperer.  She tells me over and over not to make any 'hasty decisions'... to leave the lumps on the side just in case I change my mind.. that I might want to reconstruct two or three or four years from now.  I feel like no one is on my side.

    Perhaps I will write a letter to the PS and send it to him certified mail.  Do you think it would go in my file in that case?

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi Bobogirl,

    I think if you could somehow get an email for his office it would be better than a letter, but if you can't get an email then yes, send a dated letter and ask that it be put in your chart (and keep a copy for yourself.)  I am not sure they will do it but I would think they would be obligated to do so.  In my case, I have my old PS's email address.  With my new PS whom I love, I email his assistant and ask her to forward them to the doctor.  I have also asked the PA to forward things because I have her email address since she sent me some photos that were taken just before surgery.  

    The day of my "explantation" surgery the last photos of me with the implants were taken.  The doc had me posing regularly in a couple of pics and then he had me flex for a few pics so you could see the horrible distortion of the implants created by my still strong and stubborn pec muscles.  It's amazing because you can see just where the old PS cut my pecs along the sternal border -- the area that was cut did not distort because it couldn't -- it wasn't attached to anything and was rolled up like a window shade.  The photos are quite dramatic and I hope he will use them to show other doctors that not all women (and especially women with a lot of upper body strength) should be advised to think twice about reconstruction.  In fact, I am going to ask him if I can be a spokesperson to speak with other women who come to his office and are concerned about losing their muscle strength.  I want to help as many women as I can, and I think he may be open to this.  I am hoping!   

    Gran

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi Marcyv,

    I am so glad you wrote!  I can totally relate to not being able to wipe the kitchen counter without the "space aliens" (as I used to call the implants) going completely nuts inside my chest.  I hear you loud and clear!  I had trouble opening heavy doors, I could barely close the hatch-back on my boyfriend's Mini Cooper, I couldn't pump up my bicycle tires with a hand pump, and I couldn't do even one push-up.  Also, like you even though I wasn't pulling myself onto a horse's saddle, I could not pull myself onto my sit-on-top kayak, and when I did a solo bicycle tour of New Zealand and Tasmania in 2012 to celebrate my 50th birthday I couldn't steer the bicycle and take a drink from my water bottle at the same time like I used to do, and each time when I tried to shift gears I would veer into traffic on roads that were already treacherous with no shoulder and lots of blind curves.  You can't steer your ATV; I couldn't steer my bicycle.  My lack of pec muscle strength could easily have gotten me killed on that 10 week bicycling trip.  I was so angry with each shift of the gears and every time I wanted a drink and had to stop cycling.  It infuriated me and fueled my absolute need to have the implants removed the first chance I got.  It was the best thing I have ever done!  Now instead of having the feeling that the horrid things are always there and I can always feel them, I feel my flatness and feel so happy.  No more distortion and I feel like ME again.  I can wipe the kitchen counter without thinking twice about it -- for the first time in 3.5 years!

    I haven't yet been able to test my strength because I just recently had my explantation surgery, but because the new PS reattached my pecs to the sternal border and the inferior border (the bra line area) I should by all rights be able to work myself slowly back to my old level of ability (taking aging into account, of course). 

    I know just how you feel regarding the lack of information out there to help women who are worried about losing their strength.  I looked everywhere and could find nothing and that is why I started this thread.  I want women to make an informed decision.  I want women to hear from other women who have had problems because of their upper body strength.  Women have a right to know what their sisters before them have faced and how we feel and how I felt when my only reprieve from the implants was sleep.  It was not a life -- it was an existence.  

    Good luck with your surgery and let us know how you do.  Also let me know if you decide to go flat.  I am LOVING flat!  So does my boyfriend!  And the prostheses aren't uncomfortable and look just fine.  So think about whatever will make you feel happy and feel like yourself again.  I want you climbing that ladder to drop the hay, and I'll do it with you!  

    I wish you well!

    Gran

  • Katnat
    Katnat Member Posts: 13
    edited February 2014

    Hi girls,

    I'm 30 years old,single (after I was diagnosed my boyfriend felt it was too big to handle and we broke up) and I'm considering doing a bi lateral mastectomy after I'll finish the chemo ( I had a lumpectomy before) because of my young age and because my mom was diagnosed with breast cancer at a young age as welll (BRCA negative).

    Before I was diagnosed I was very active and into sports.

    Unfortunately, I gained some lbs lately (food is my best friend) and I'm not active at all and I keep dreaming about the day I'll be active again.

    I can only do an implants based reconstruction and after reading what you wrote I'm soooo confused.

    There is no chance I'll be flat chested.

    I want to find rebuild my life,to feel sexy,to get married and to have children..but I don't want to feel disabled.

    Can you please be specific what kind of sports I'll be able to do?

    3 sentinel nodes were removed.

    Please advice. 

  • Marcyv
    Marcyv Member Posts: 42
    edited February 2014

    Gran - thank you so much for your info and your replies!!  I am really not ready to have them taken out but it's so nice to know I am not completely insane!!!  Thanks so much!

    Katnat - I'm so sorry to scare you and I have to think this doesn't happen to everybody or no one would do it.  I'm so sorry your boyfriend wimped out on you.  Best you find out now he's not the one for you than waste any more time!  Good riddance!  My mother and aunt both had breast cancer and I am BRCA negative also.  I think more is at work there than just that test.  I understand wanting the Bi lateral.  I wanted it because I didn't want the chance of it coming back.  Turns out to be a good thing because there was cancer in both breasts when they did the tissue diagnosis after they removed them.  If you don't you'll need to be very diligent in being checked, etc.  I think had I known then what I know now I might have tried to do a lumpectomy but as I said, it's a good thing I didn't

    As for the pec muscles, I have to say I had no idea this was going to happen.  Gran can tell you more about specific sports but I can pretty much guarantee you will never do a push up again.  pulling things toward you is difficult, climbing is difficult, and you really can feel it all the time.  Basically your muscles are no longer attached to your chest, they are attached to your breast so even though the muscles tighten, there's no strength behind it because they aren't attached.  Gran - Did I explain that right?

    I personally do not want mine taken out though.  I want the shape and feel too.  It's a personal choice for everyone.  I applaude Gran for her choice, but it's not right for everyone.  I'm jealous of her though.  :-)  I wish we could have it both ways!

    Don't know if I've helped or made it worse.  I would talk to your doctor about this too for sure! 

  • NatsFan
    NatsFan Member Posts: 3,745
    edited February 2014

    Katnat - why can you only do implants?  Have you been told you're not a candidate for flap surgery options?

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi Katnat and Marcyv,

    Well, first off, when they do sub-pectoral implants they do not attach the muscle to the implant (sorry Marcyv--I know that's what if feels like because they cut the sternal side of your pec!  That is what makes them go crazy because the rest of the sternal pec remains in place on your sternum and is strong enough to distort the implants).  Placement of sub-pectoral implants after tissue expanders are removed (a 2 step-recon which is what I had and most women have because then you can be any size you want.  With immediate recon you have to go smaller than your original breast size) involve cutting the pec muscle at the bra line and at the side by the sternum.  They only partly disattach the sternal side, so maybe an inch or so or maybe a third of the way up -- you would have to ask a doctor to be sure and it also probably depends upon the size of the implants you want.  The pec muscle is not attached on the outer side of the chest and is attached at the shoulder which is why having it cut can be so disabling.  The pec muscle is involved in many different movements involving the chest and upper body / arms.  I can only speak to the sub-pectoral surgery since that is what I had.

    Prior to the surgery I was an avid spearfisherwoman who climbed over the gunnels of a boat 50 times a day, picked up a 55 pound kayak and put it on my car to go kayaking, rode my bicycle thousands of miles with fully contained with packs (panniers) in front and back,  worked out in the gym regularly, and was a former bodybuilder.  I also did caving, rock climbing, ice climbing and was generally just always doing something that involved upper body strength, like using my chainsaw, for example.  

    After my surgery I could NOT do even ONE push-up (I used to bang out 30-40), not one dip, no flat bench presses (for fear that I would pop out the implant on the underarm side of my chest where the pec muscle is NOT attached on anyone), no more chainsaw, couldn't climb in the boat while spearfishing (also had to wear a plastic bra -- on that people who do fencing use --  to protect my implants from being spined by a dorsal fin and then leaking silicone into my body), couldn't lift my kayak, couldn't paddle it without extreme discomfort, couldn't take a drink from my water bottle without stopping, veered into traffic when trying to shift gears because of a lack of strength, couldn't pump up my bicycle tires with a hand pump, no more rock climbing, ice climbing but with severe discomfort, couldn't do many exercises at the gym without feeling crazy distortion of the implants by my muscles to the point where the implants looked more like triangular pastries than breasts.  I also had trouble opening heavy doors, closing the hatchback on my boyfriend's car, and could not do regular day-to-day activities without feeling the horrible sensation of something foreign moving around in my chest.  

    My second plastic surgeon (I fired the first one who put the implants in and basically lied to me about what they would do to my physical life) said that about 5% (I think the percentage is greater) cannot tolerate implants because they have very strong pec muscles.  Well, the first PS knew I had strong pecs but she didn't care!  I told her all about the extreme sports I do and my extremely physical lifestyle.  For me the implants were the biggest mistake of my life.  NOW I feel sexy and able.  When I had the implants I felt disabled!

    I think you have to ask yourself this question:  What is more important to me (not to anyone else, just to you):  Is it more important that I look like I have breasts when naked and in a tiny bikini and be able to show cleavage in dresses and tops, etc OR is my athletic life more important?  Simple question that ONLY YOU can answer.  And I say look like I have breasts when naked and tiny bikini and cleavage to stress the point (that was never clearly made to me) that if you are like me, the only time you are really going to want the implants is during those times.  At other times when you are fully clothed nobody can tell if you have prostheses or not.  I don't mind the prostheses at all!  I also just ordered 2 different really cute bikinis that are made for post mastectomy to fit swim forms into inside pockets.  So now I can even go back to wearing a stylish bikini, even though I am entirely flat.  I also just bought an evening gown with a sweetheart neckline and the tailor is putting breast forms in it for me so I will look beautiful and elegant in a heart-shaped neckline that just doesn't show any cleavage.  I was never a person who wanted to show cleavage anyway, so again, for me the prostheses work just fine.

    Some advice:  Find a physical therapist and ask him what would happen to your strength if the pec muscle was cut at the braline, detaching it from the lower part of your body in 2 places (for bilaterals) and then also tell him that the pec would be taken off the sternum for about a third of the way up.  See what s/he says.  They may know or they may not know -- depending upon how smart they are and how much experience they have.  It should be an easy question.  

    Also, figure out which muscles you can't do without (nobody was going to touch my lats -- No way!) so find out what muscles you need for the sports you do.  Also ask other women on this site about their different kinds of surgery because there are many.  If you have gained weight, then maybe they could use that fat to make breasts -- the perfect solution!  Find out about all of your options -- not just from the surgeon, but from women who have had them done.  This site is full of women who have had different types of reconstruction.

    The point is that you have to feel comfortable with yourself.  Don't worry about the future or if a man will like you if you don't have implants.  Like Marcyv said, good riddance to the boyfriend who dumped you -- he obviously was not the man for you and it was good you found that out now!  If a man loves you however you look, then that man really loves you!  You can still get married and have kids and have a life whatever you choose for yourself.  Just do your homework and ask a lot of questions.  Check on YouTube for videos, too, as there may be videos that describe the many different reconstruction procedures.  

    Good luck in whatever you choose!

    Gran

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2014

    To weigh in on the other side - I'm not into extreme sports but always worked out & swam & hiked & biked & was a scuba diver, etc.  Most important to me, I am a 'brush your teeth & go' person.  I want to be able to pull on a T-shirt and go in the mornings, and I want my chest to fill out my shirts so clothes looked normal to me.  Like someone else said, it makes me feel good about me.  I would never wear a prosthesis - no matter what, and I did try on several different kinds - but again, that's just me.  I've had my 410 anatomical implants since September 2011 and am quite happy w/them - considering it's a new normal & now I'm dealing w/a recurrence.

    I've just started radiation and my PS has stated categorically that he will not do anything w/implants and radiated skin if there is a problem, and would go for a Lat flap.  I do agree about never having a Lat flap - no one's touching those muscles.  Another personal preference.  And I've never had enough fat to consider a Diep or Tram.  So if I have problems with the implant on my right side with rads, my only choice will be to go flat.  It's an option that really bothers me, but again - everyone is different.

  • happyraccoon
    happyraccoon Member Posts: 126
    edited February 2014

    image

    Hi.  I'm so glad to find this thread today!! 

    Because I am an outrigger paddler and swimmer, I have been going flat since my bmx in Aug 2012.  I've been pretty happy with how my body functions now (especially running--wow,) although scar tissue and loss of fascia still affect my workouts/races.  I may never compete like I used to.  I have had to fight on a weekly basis to establish/maintain shoulder flexibility, and be very patient about endurance limitations, etc.

    I just scheduled my very first plastic surgery consultation for mid-March.  My question for this forum is HOW MUCH WOULD A DIEP FLAP RECONSTRUCTION SET ME BACK? 

    Does the scar tissue from a DIEP make sports more painful?  How much range of motion will I eventually recover?  How soon after your DIEP were you back "in the game?"   

  • bobogirl
    bobogirl Member Posts: 2,777
    edited February 2014

    OMG, Happyraccoon, that picture rocks!  Preserve your ability to do that at all costs; you are a bad-a$s. XXXX

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi Happyraccoon,

    I love the photo!  I would hate to see you lose your strength and your joy just for reconstruction, so please choose carefully!  I don't know anything about DIEP flap reconstruction, but I am sure there are many on bc.org who do know.  There may be a thread devoted to DIEP in the reconstruction forum -- I would check there.  I forgot if you can search the site, but if you can that would also be a good idea!  Good luck to you, whatever you decide to do!

    Gran

  • NatsFan
    NatsFan Member Posts: 3,745
    edited February 2014

    Hi Happy- I had a DIEP almost 6 years ago.  I was off work for 6 weeks.  It's not that I was totally immobile during that time - I walked daily and by the end was walking a couple of hours a day. I gradually worked my way back to more vigorous activity, and today I run (I did a half marathon last year), I do yoga, Pilates, hiking, weights, crunches, etc. I went on a kayaking outing a few years ago and didn't notice any issues relating to ab strength, and I have absolutely no issues swimming whatsoever.  In short, the DIEP has not restricted me in any way - I do have arm lymphedema so I have some upper body limitations, but the LE is as a result of my ALND, and I had LE before the DIEP.  It takes some months for the scar tissue to fully stretch out, but yoga was a great help in that.  At his point I have absolutely no tightness or restriction from the scar tissue.   

    In addition to arm LE, I have truncal LE as well.  While I know I had the arm LE before the DIEP, it's hard for me to tell whether the truncal was triggered before or after the DIEP.  I had a larger belly before the DIEP than I used to have, but I also had a 20+ pound weight gain from chemo, so I don't know whether the swollen belly was from truncal LE or just chemo pounds.  So I can't tell you for sure whether the DIEP triggered my truncal LE or not.  But my PS did cut a rather wide scar across my hips, and the outside edge of the scar on my affected side interferes with the main lymphatic channel going down the side of the body.  That make it a lot more difficult to move the lymphatic fluid out of my trunk so in that sense the DIEP has adversely affected my truncal LE. If you do go the DIEP route, make sure your PS is aware of lymphedema, and does his or her best to protect the lymphatic channel going down your at risk side.  

  • DiveCat
    DiveCat Member Posts: 968
    edited February 2014

    Katnat...

    I watch this thread with interest as I am getting a PBMX in the spring with implant reconstruction. I am 34, and married, and come from a family with a strong history. I am also a dedicated runner, a hiker, a cyclist, a kayaker, and a very very avid scuba diver. Other reconstruction options are not available to me (nor preferable to me) and while I do, like MinusTwo, very much consider myself a brush your teeth and go person, it is important to me to make an attempt at reconstruction at this point in my life. Maybe if it was a few years from now and I was dealing with a cancer dx I would feel different, especially if I had to do rads, I don't know as I am not in that situation but I know for me with what I am dealing with, I need to try.

    I do worry about the impact on my active lifestyle, so this thread can be a bit scary, but I also know MANY woman who have had implant reconstruction (mostly preventative, though) who are still very active (running marathons a few months after surgery, etc). I know I will be set back for a while, but I have to have faith that in time, and with physio if needed, I can get back to things I love to do even with modifications AND still have a desirable cosmetic outcome. I am well aware of the potential negative outcomes too, but I also know enough (who are not posting on this thread!) who are still very active and in due course returned to their activity levels. That is not to say they never feel their implants or they were back to it right away, but the majority I know did return and felt their mucles and implants "settled in" after some time. Maybe I would feel differently if I still competed in adventure racing or mountain biking, but I don't compete anymore. It is just all for fun. There are some things I am willing to cut back on if I have to (like weight training) and others I am confident I will return to in due course....and am willing to take some "weird feelings" or some (non-harmful) discomfort to do so (running, kayaking (even if my husband needs to lift my kayak onto the truck!), scuba).  I have had to modify my activities for other reasons the last few years, and no I can do it and still feel good, and still enjoy them. 

    If it all fails and I am in tremendous pain and can't do anything I enjoy anymore, I will have them removed, and I do believe I will be fine with that, but I also really feel I need to try. Am I a bit fearful? Yes,  but I also feel I am aware and making an informed choice that works for me at this time.

    So, I think this thread is GREAT for giving another side of the story, but I also have seen that not everyone has Gran's experience either. You need to make an informed choice for you, taking into consideration the sports you enjoy, the level at which you do them, and your comfort with modifications or not being at the same level again.

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi DiveCat,

    Any sports like running and hiking and scuba diving and many others that do NOT involve upper body strength and, in my case, pectoralis muscle strength, will not be greatly affected by sub-pectoral reconstruction surgery.  I am talking about sports that do require use of the pecs, and once they are cut they do not work properly.  I think it is important to separate the sports that will most likely NOT be affected from the sports and activities that are VERY likely to be affected, depending upon which type of surgery one is looking at.  All I can speak about it sub-pectoral implants because that is my experience, and all of my sports and activities involved a need for upper body strength and use of the pec muscle which was no longer is usable condition.

    I did experience some aggravation while kayaking long distances to go spearfishing, because I could feel my distorted pecs with each paddle stroke.  I also could no longer lift the kayak onto my car racks and I don't have anyone to help me.  I could tolerate the feeling of distortion but I didn't like it.  Most of the other things you mentioned don't involve a great deal of upper body pec strength so I think it sounds like you will not have any problems if you stick to those sports.  You mentioned wanting to get a PBMX surgery -- I don't know what the "P" in PBMX is, so maybe you could give a little detail.  There are far too many different types of surgery to be able to understand each one, or even know what the letters stand for.  

    Gran

      

  • georgie1112
    georgie1112 Member Posts: 282
    edited February 2014

    One thing I learned going through BMX and from my bc friends is that we can't predict our feelings. We can imagine that how we will feel, and sometimes it works out that way. But not always. There are many women who are not happy with the results and expected they would be. So I agree, this thread brings up important points.

    It is also difficult to predict the outcome physically. I still haven't been able to get my strength back after BMX without reconstruction due to complications from seromas and it has been 4 months. My surgeon said I would be fine in 2 weeks and could go back to lifting 50+ pounds. When I do, my seromas get worse. So I haven't been able to get back to normal.

    Gran, I think P in PBMX means prophylactic.

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi georgie1112,

    Thanks for enlightening me about the P! 

    I had a seroma problem when they removed my drains after my initial mastectomies and tissue expander placement.  About an hour after they took out the drains I noticed a large buildup of fluid in my right breast -- the same side that I felt a "tugging/ripping" sensation on when they removed the drain so they probably pulled a piece of tissue free and thus the seroma developed.  I went immediately to the PS and she put an extra 60cc into my tissue expander to tamponade (put pressure on) the area that was leaking fluid into the cavity.  The extra pressure from the 60cc was successful in stopping it from growing and eventually my body reabsorbed the serous fluid and the problem was solved.

    I wonder what is causing seromas in your case?  There has to be some tissue that is not healed or continues to be opened up again with activity for you to develop a seroma that won't go away.  A  pocket of serous fluid should not accumulate unless there is a tear or open area inside where they did the surgery.  I would go back to the mastectomy surgeon as well as the PS to talk about this.  I would think that maybe they would want to put pressure on the area like they did with me (in your case possibly using ace bandages and something bulky underneath to press down on the chest where the seromas are) because the tissue needs to heal before the seroma will stop leaking into the area.  Then you'd also have to wait for the fluid to be reabsorbed by your body to make sure you weren't "springing a leak" again.  

    I think laying off all upper body exercise and tamponading the area sounds like the only choice you have.  Check with your doctors, though, because they should not let this go on and on.  This should have been addressed by them immediately when you experienced your first seroma.  Plus, I have to say that any surgeon who would tell a woman she can go back to lifting 50+ pounds just 2 weeks after bilateral mastectomies sounds like a surgeon who doesn't know what he/she is talking about.  That is way too extreme, way too fast!  I hope you get this resolved soon.  Those seromas also increase your risk of infection in that area, so you need to solve this problem ASAP.  If you live anywhere near NYC I can recommend a great PS to take a look if you want another opinion.  Best of luck and let us know how it all works out!

    Gran

  • whitedove
    whitedove Member Posts: 292
    edited February 2014

    wow! Thank you for this post. I have been off the boards for a couple of years. I am in my early 40s , very athletic and I had a BMX for stage 1. DCIS, with silicone implants 3 years ago .

    I am saddened at how much muscle loss I have encountered due to lack of range of motion in my upper body.

    I now have a bony upper chest due to no more pushups, flys, chest work. I hate how It looks (but am glad I got the BMX as I am cancer free).

    The PS told me nothing about muscle loss or the downgrade in my athletic level. I would never have my implants removed as they look great, but I do wish I had somewhere to go to learn exercises for post BMX women. (Someone would make a fortune by making a workout video for women with breast reconstruction)

    Anyway, thanks for this thread and thank you for all the other posters who have shared such good info.

    Does anyone know if there is a thread or any info as how to exercise the chest with implants?

  • Gran
    Gran Member Posts: 104
    edited February 2014

    Hi whitedove,

    I feel your sadness about muscle loss and no more pushups, flies, flat benches, dips.  That was me until I recently had my implants removed.  Last night I tried my first push-up since my "explantation" surgery in December and I was very excited about it.  I was unable to do a full push-up, but not because of cut pecs -- it was because my entire upper body has lost strength from not working out ( I stopped because I found it too depressing and the implants would distort terribly -- an awful feeling).  So I know that if I go slow and build up all of the accessory muscles and generally rebuild my upper body I should be all set!  Probably never as strong as I was before, but certainly stronger than I was with the implants in.

    The thing you have to remember is that if you had sub-pectoral implants put in, then they cut your pec muscles on the inferior border (bra line) and along the sternum for whatever distance they needed to fit the implant under.  So the reason you lost strength mainly has to do with the cut muscle on the lower portion of your sternum.  When I had my implants I did try to go to the gym and was able to do very light incline flies and light incline dumbell presses.  Those might be good exercises for you, especially since the flat ones are not advisable after implants, and also you want to work your upper chest.  So the more inclined you are, the more you will work your upper chest and hopefully get rid of the bony look.  I would give it a shot with very light weight, making sure your form is good and then slowly work your way up with the weight.  Don't go too fast -- using too much weight too soon could set you back.  But I think with gradual increase in weight you should be fine.  You'd also want to work the rest of your upper body and just do things that don't cause you pain or problems.  Let your body guide you -- you'll know when you can't do something (like my favorite -- dips!)  Remember that the implant surgery has affected your entire shoulder girdle and so you must work toward regaining stability in the shoulder girdle and back as well as your chest.  You may be able to find a trainer at the gym who could help you if you ask around locally -- maybe ask a physical therapist, or maybe start working with a good physical therapist first and get your mojo going and get your shoulder girdle stabilized and get some overall strength before you look for a trainer or do it on your own.  I did physical therapy after my mastectomies and it was instrumental in me regaining my shoulder stability -- that is, until I fell on the ice during a winter storm and tore the cartilage in my wrist and I was in a cast and a brace for a year!  During that year I couldn't do anything upper body and I lost all that I had gained. 

    The more I think about it, the more I think you should see a good physical therapist for post-mastectomy and overall upper body strengthening.  Your doctor should be able to write you a prescription for physical therapy so that your insurance would help pay.  Then once you are confident and strong, go out and look for a trainer or simply take what you learned and go to the gym yourself.  You probably won't need a trainer at that point.  I wish you luck and please keep us informed!  I will be going to physical therapy, too, so we can be long-distance work-out buddies! 

    Best of luck!

    Gran

  • DiveCat
    DiveCat Member Posts: 968
    edited February 2014

    Gran...."P" is for prophylactic/preventative.

    My concern with scuba is mostly with equipment. Not only hauling heavy aluminium or steel tanks...but I also do cold water diving in drysuit most of year which means a lot more weight in my BCD to carry! I am sure I will manage with some help if needed, but I am a rather independent sort so that is a concern and my husband and I often do dive alone (with each other though). Once I am in the water it would be fine...you do not use upper body...it is the getting too and from the water (especially cold water shore diving) that will be an issue. On a boat dive someone could haul me up if needed, and I am rolling or jumping off! Perhaps a good excuse to take more warm water diving trips? 

    It also raises concerns for me in terms of rescue situations (if I need to rescue my buddy (aka my husband usually) or someone else. That would require upper body strength, especially if someone is negatively buoyant and unconscious, etc.

    I do hope I can get back to it with modifications though...I do know a couple women who have. 

    Running and hiking I am less worried about. Kayaking a bit...but I can go easy as my husband (kayaking buddy) is a slow poke anyway and I have a nice light kayak! I do lift weights but am okay taking out those moves I cannot do.

    I do REALLY appreciate this thread, and I am SO glad to hear you are doing so well after implant removal.

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