Beware: Athletes who choose reconstruction may regret it

Also, Estel, I do worry about lymphedema.  I'm so sorry you are dealing with that...and you only had 2 nodes out?  Did you get it right away after surgery?

I'm so glad you were able to find a good PT and such a wonderfully supportive program.  I had never really heard of LE before I got sucked up into the world of BC.   I also didn't realize that your arm could look "normal" to an outsider until I started reading up about it.  I always assumed it would be obvious and abnormally swollen.   I'm glad you seem to be managing yours well and are able to keep it under control.    I know I could always be at risk even if I am years out.

SusansGarden, I know the EXACT feeling you're talking about.  I get it whenever I back off on swimming or paddling and then up my exercise a bit too much.  It seems to me that I have to keep up the exercise as regularly as possible along with massage and stretching.  If I let up at all, then it SEEMS like the tissue is adhering or clumping.  Once it does that, the workouts break up the clumps and it hurts.  For me, it's better just to keep moving so it doesn't clump. 

The other feeling is that my pecs are less resilient, flexible, and strong than they were.  This means that when I move in a way that tweaks them too hard, it hurts!!  Because I've never had implants or recon I can do plank, push ups, bench press, and fly without pain, but also without putting on too much weight or too much intensity.  I try not to push until it hurts.  Before bmx, I could bench press 135.  Now I'm not even halfway there.  But see, :-) I'm smiling anyway.

I feel the implants all the time especially after using my pecs for an extended period. So happyraccon - you're saying that scar tissue adhesions builds up even without recon? If so, that is very interesting. I have this theory that pec workout can help with incapsulation issues. Anyone ever hear of that?

Hi Everyone-I had my double mastectomy on May 9 2014 and my exchange on 7/11/14.   I had a bad time with the TE's - extreme discomfort and areas in my chest that were very painful and lots of pressure.   It is now 8 days after my exchange and though allot of the areas that were very painful from the TE's are getting better,  I still have this feeling across my chest,  I think most of the women describe it as the Iron Bra feeling-like there is a strap cinched tight across my chest.  I don't know what is causing this and it gets so old by the end of the day I have to take a pain pill for any relief.   My PS just says I have to be patient.  I am having my doubts about him.  Are there any women out there who have had double mastectomy with recon and have had this feeling but have had it subside?   I too am a former bodybuilder,  and until all this was an avid longboard surfer and loved to go to the gym.   I hate this feeling of tightness and don't know if I can live with it for the rest of my life.  I am 58 years old now.  I am just hoping that patience IS the key.  Any advice or experiences would be greatly appreciated.  God Bless.

Hi Gran- thank you SOSO much for your reply.  I am going to try to be patient(although the waves this morning are waist high and perfect for surfing) and give this a year to totally heal.  If things don't feel any better by then I may have to take action.   It's funny because during the night and when I first get up in the morning the iron bra feeling and aches where the alloderm slings are isn't bad,  but progressively gets worse during the day until I can't take it and end up popping a pain pill around 6pm to have at least a few hours relief before I go to bed.   I also get these weird feelings on the lower part of the inplant like a muscle or something is spasming-feels kind of like if you take a rag and wring it to get the water out.   I don't know what that is.   When you had your implants removed,  did they removed the alloderm sling as well?   What was it like with the pec muscle-what about the void between your chest wall and the pec muscle?   Where did you find such a good new PS-what state is he/she in?

     I am just so depressed and afraid that this discomfort is not going to go away.  I realize and understand that I will never be like before all this,  but living with this feeling for me is not living.   It's either take pain pills the rest of my life or try to find another PS that understands.  At age 59 I still have allot of living to do and things to accomplish.   Thank you so much for your advise and your experiences.   I really appreciate it so much.   I may pop on occasionally for more advise from you.

Hi Surfergirl55,

I also had my exchange surgery three weeks ago and had that same iron bra feeling at the base of my implants initially. I also wondered if it would go away given my implants are small (325cc) and had very little swelling with the exchange. Now at three weeks it is gone. I can't say all of the occasional sharp pains that you get with healing is completely gone but they feel much softer and I can see that in a couple of months I will begin to not focus as much on them. I also am a gym rat and where a very tight jog bra and have already comfortably gone back to my weight lifting and most of my cadio ( not all out running for another week or two although I was cleared for it. Just want to make sure everything reheals thouroughly.) What I found with my expanders was the more I did pushups and chest presses the easier they got and the less I felt that contraction. However, I never had pain from it. It was just the wierd feeling of the contraction of the implant. Def give it at least a couple of months to a year before you decide. I think it's very specific to each persons anatomy and how they handle the fact tht they will never feel completely normal, again assuming your not in pain.) For me, the little strange movements of the implant when you do certain things like open the lever handle of a car is minimal and really doesn't bother me. Time will tell. You still have a lot of healing to do. Gran- good job with this thread. People should be aware that it is different exercising with them in a reconstruction versus say an augmentation.

How are you doing now after healing from the DIEP?

I am so thankful for this forum post... at my 4year appointment, the MRI showed another spot. I had been through this before at year 2 and it was pre- cancer, so only a second lumpectomy was needed. December 11th was different. Invasive Ductal cancer, because of the previous 2 lumpectomyies and optional radiation treatment over the last 4years, a mastectomy was the only choice for me. I am also a super active athlete. ice hockey player, XTERRA triathlete, avid mountain biker, tennis player and participant of every other sport that looks like fun. I'm 47, and feel like I'm 32. I understood the mastectomy was inevitable, and for what ever reason that wasn't the tough decision. the process of re-construction was the most stressful part of the last three weeks.

I went into the PS appointment with the statement "function is more important than anything else on the planet". the PS sat with me and drew out the 3 options that he could do.... one of which he took off the plate because of past radiation treatment. so in a matter of a couple days I needed to choose the TRAM or Latissimus Flap. if I considered the DIEP, I needed a different surgeon who doesn't take any insurance, and wanted cash payments up front for the consult, and I would have go to the only hospital I didn't trust in the city. I specifically asked questions regarding swimming, and how I would be affected, I asked about weight training and hernia complications, I asked about strength differences since upper body strength is needed for mountain biking...and swimming- there wasn't a single question where I was told there would or even "could" be any issues. the comment made to me was " if you are looking for something to be wrong, it will never be right" .... can you believe it! when I questioned his comment, he wouldn't give me any real data other than... I don't need to worry because I live in Colorado and his clientele is very active and doesn't have any issues with any of the procedures. if I look on like I'm only going to get a one-sided view of the procedures because who like what is done don't need to go to the Internet to "vent".

Here I am now 4 days out from surgery, mastectomy on the right side only, even with more lymph nodes removed, I've got great movement. I tried desperately to find athletes in my area for input so that I can make the "right" choice, and reading about all of your amazing stories, good and bad- I'm glad that I am rid if the cancer and now can investigate and discuss in more detail my choices and decide later in the future.

I'll be starting a new job coming out of this surgery, and don't need any surprises!

I have questions for those of you who are "flat". Are you using the bras with the beads? or prosthetics? any working better or worse for your active life style? for those of you swimming... are there products that have been better for you? Have any of you traveled to Toronto to have a prosthetic made specific for your body? I've now got three weeks to be my best self in my dream job and looking forward to the new triathlon season!

Kristen-I had a BMX & now bilatterally flat. I swim in a bikini/2 peice style workout suit without any prostheses. Everyone at the pool seems to be focused on their workout not my appearance. Not sure if you are having a BMX or a UMX. You might try to private message gran who started this thread. I believe she uses prostheses.

I had bilateral mast in January and was a masters level swimmer. I talked to my ps abput wanting to keep swimming and that being able to do this was more important to me than the recon. I have tissue expanders and began working with a pt after my first trip back to the pool was an absolute disaster. I have regained quite a bit of range of motion but it is still not comfortable to swim. My TEs feel like they are bouncing all over as I swim. Being able to do butterfly again is one of my goals but right now I can't see how that will happen. My point is that the ps said I should be back to the same level of swimming eventually. I hope I can as being able to do it was one of the joys in my life.

I agree with Cora that you just have the TEs and it hasn't been that long. I didn't do TEs but had direct implant reconstruction 2.5 years ago. It does take a while and certainly things may feel differently forever anyway you go following mastectomy. But I've gotten to the point --perhaps within 6 months--that I'm not bothered by my one side implant while swimming laps. (Of course, I'm not into the butterfly!!) I think I'd give it more time and I think the permanent implant might feel better than TEs.

I'm so sorry to hear about this, it sounds horrible. I was also worried about this, and horrified to begin to learn about the treatments and procedures. In the end I had a reconstruction done with the implants wrapped in collagen and attached on the pec, so it wasn't cut. I'd recommend anyone else in the same situation to find out about that. It's 'great' at the moment and at least I know I've had the least invasive surgery possible incase anything changes.