Beware: Athletes who choose reconstruction may regret it

Unfortunately, the first line of information is the doctor who does the diagnosing... And full disclosure there doesn't happen and probably won't ever happen. So the next line of information is other women who have gone through the process and other doctors. Again, unfortunately, we are all different in our wants and needs. For me, I was willing to go through a long surgery and spend a month recuperating. I looked at it as short term pain for long term gain. But others are not up for a long surgery, or a potential expensive co-pay. I was also willing to travel to go the a specialist who could deal with my needs... Other may not be willing. I can't imagine being flat, but others might actually like it, or at least prefer it. So when one paints a picture of their procedure and the pros and cons, a con to some may not stand out as a con to me, so I may not mention something as a con.

I suppose instead of saying that my surgery is best because a, b,c, it might be better to say, it was a good choice for me because x, y, z, but I can't understand someone having concerns about l, m, n, o and p.

So if one has implants, they might say the pros are shorter surgery, and cons are pain in the pecs or replacement every ten years etc. Then it can be an eyes wide open decision. I know for me, I made a pros and cons list (in my head) for myself... Looked for all the pros and cons I could find on lumpectomy/radiation vs MX w/implants vs MX/Flap... Then made my decision for myself. I highly recommend it.

I too experienced a lot of pain after my bmx, but I eventually realized that my silicone implants were NOT the only culprits. Pain can stem from different causes, including muscular imbalances that occur over time, after every type of breast cancer treatment. Unfortunately, each case is different and standard physical therapy regimes do not work in every situation. I failed physical therapy three times and eventually had to come up with my own creative rehabilitative plan. I would urge you not to give up on the implants yet, you went through a lot to be where you are. Instead, try to understand how various aspects of treatment influenced your situation and what you can do. My atypical self-involvement and positive outcome prompted me to write a book to help others experiencing various types of pain and rehabilitative hurdles after breast cancer treatment. I am a registered nurse by training and an avid exerciser. My medical training allowed me to examine pain and rehabilitative journals, and my understanding of exercise physiology helped to individualize a rehabilitative approach. Those interventions, along with carefully considered and safe complementary approaches allowed me to regain most of my active lifestyle. I explore many atypical topics in my book, including the benefits of a double mastectomy choice. In my opinion the information felt one-sided and limited. If you wish, you can read an excerpt from "off-trail: lessons learned from unforeseen breast cancer detours" in amazon or in barnesandnoble.com. Perhaps my experience can serve as a guide. Remember, your body can still heal long after your breast cancer treatment, but you have to be very involved, open-minded and determined.

Best of luck, Jenny

Research on pain after breast cancer treatment is outdated, limited and generalized. It has been assumed that mastectomies cause more pain, but studies are now showing that pain incidences can actually be higher after radiation if a lot of lymph nodes are removed. In other words, the pain problem is not just from reconstruction. Scar tissue can contribute after all surgeries, radiation damages muscles, lymphedema contributes, hormone therapy can negatively influence muscle health, and nerve disruption can be a big culprit. More research is what we and our doctors need to make informed decisions and manage pain with approaches other than pharmaceuticals. Pain after reconstructions is an area of research that is particularly defficient.

You are right, in my case altered muscle mechanics played a BIG role. In time I learned to compensate, but other aspects also needed attention.

Great idea Beesie - things to consider, much better than just the negatives.  I come to the issue wishing I had KNOWN what implants would feel like, and how they would compromise almost every activity.  Realize too how much $$$$ is involved for surgeons, plastic surgeons performing BLM - and extending the process by using expanders.  Know his was a major factor in the surgeon almost insisting I see the PS she worked with b4 she would do the surgery.  Too frightening time, right after diagnosis, to be faced with that kind of a situation.  Would also EMPHASIZE as many have, that there is TIME.  You don't have to do the reconstruction at the same time as the surgery.

Good to see there is so much more support in the zeitgeist for women to CHOOSE not to have any reconstruction.

Sunflower,  I am reading some of the comments on this thread, even though I had lumpectomies/rads.  I came close to having a mastectomy due to the size of the DCIS that I had (needed three lumpectomies to achieve clear margins), and wasn't ever sure I'd be able to do the lumpectomy route.  My second surgeon (who did the last two surgeries from a major cancer center), had me see a plastic surgeon to help make a decision.  The plastic surgeon very graciously had me see one of his patients that day, and the woman allowed me to feel the implanted breasts and ask a lot of questions.  In addition, there was someone where I exercise, who also allowed me to feel, touch, and ask questions.  I was also able, on the day of the bs visit, to feel implants (silicone and saline).  That very fortunately experience led me to decide, first of all, that I would try for lumpectomies, if at all possible, but if I needed to do the mastectomy, that I would not do reconstruction at first, and likely remain flat, although I would have only done one side.  That would have been challenging.  I knew, after that visit, that i did not want implants.  Maybe someday I would do autologous tissue transfer, but not the implants.  Now, reading all of these threads on reconstruction with implants, I am so glad I didn't go that route.  My surgeon reminded me, as I am now resisting hormonal therapy, that if I get a recurrence, I will need a mastectomy.  But I will now be prepared (at least for that part of the process).  So, I'm sad to hear that people go into the mx situation not able to have a lot of information about the process and the quality of life issues.

All, I just found this discussion board today. I am not a super jock, but I run, do yoga, do a little weight work at the Y. I had implant reconstuction in 2004 but had a recurrence 1-1/2 years ago. I had radiation last summer, which caused a major problem with my implant. I just had dortissimis flap reconstruction Tuesday, since the radiated skin didn't make me a good candidate for just replacing the existing one. I would welcome hearing from others how long before I can begin running or other exercise. I love to cros-country ski and sometimes backpack with my family. I'm going to be 65 in a week so it's important to me to stay active even if I'm not a competitive athlete. 

I was troubled to hear of some of you unable to do what you love--e.g. painting.  Will I be able to strengthen my back muscle after I heal?  Thanks for any advice you awesome women can offer me. 

ILC 2003,

I would suggest you become informed about the type of surgery you had and how the muscular alterations are bound to impact your mobility. Doing so will allow you to compensate as much as possible. "The breast cancer survivor's fitness plan" describes anatomical alterations according to surgery with good visuals. If you can, try to find a good physical therapist that can guide you, but also listen to the pace your body prefers. Be kind and patient with your body.

Rose,

What type of reconstruction did you have?  My original one was simple implants and I also experienced the strange pec muscle sensation you mentioned, but the constant awareness of it faded over time.  I think your reco and that of Jg10 and others to find a good PT is excellent advice.

It's hard to imagine feeling "normal" (whatever my new "normal" will be) 6 days after surgery while I'm still dragging around a surgical drain and my back aches just from the effort of typing and mousing.

Jg10--Is the "Breast Cancer Survivor's Fitness Plan" you reference a book? article? Sounds like something I need!

Thank you all for your responses. I really appreciate being able to reach out to such intelligent, compassionate women who willingly share their experiences with perfect strangers.  There's really no others who understand.

WOW! What a great thread! I haven't had a chance to read all of the posts. I also have retention issues.  I thought my case was a worst case scenario for Murphy's Law, but  I see now I am not the only one having these issues and they are not as rare as they would have us think. I never considered myself an "extreme" athlete. But, at 48, I weighed in at 123lbs, 5'7", a dancer, hiker, and yoga enthusiast. I worked outside as a geologist, camping, hiking, backpacking, and tramping through the mines and pits. On weekends, I performed as an amateur belly dancer. I did yoga daily. As a belly dancer, recon seemed important for appearance, but I have been scared S***less about losing any muscle in my abs or shoulders. Since my tx, I have a lot of SEs and may never dance again. As a result, my onc team have dismissed my concerns about recon. I also do not have the good insurance to cover the recon completely. I am still dealing with a sub-pec TE on the left side after 5 years.

MY PS and I argued incessantly about the type of recon and the size of my breasts post recon.  He wanted larger breasts, DIEP or the shoulder muscle recon, I wanted something less invasive and no change in my breast size. My veins are too small and I have no body fat for a DIEP, unless he uses my ab muscles. We have argued for 5 years. I have a new PS now and I am still trying to get information to help me with the decision about recon. I do not want to give up on my activities completely. I am no longer working due to SEs, but I haven't given up hope on dancing and more strenuous yoga.  None of my doctors seemed to have a clue about a female athlete's needs. Maybe because they were not athletic at all. My PS seemed to be so accustomed to women unhappy with their bodies and believed every woman wanted larger breasts, that he figured he could do whatever he wanted and I would be happy.

I still have alot of pain and range of motion issues with the TE, but at least I have all of my other muscles intact. My insurance for PT ran out before I could finish, so I am trying to do my own.

Quality of life post cancer has always been my concern. None of my team seemed to think that anything more than surviving treatment was an issue. I do not want to be a cancer survivor. Surviving is not enough! I hope all of you can find some relief from pain and manage to get some semblance of life back post tx. I am still trying and struggling all the time. I am hoping that my new PS can give me some good answers.

Just my 2 cents....

I had a mastectomy with no reconstruction back in 2006. I planned on a prophylactic mastectomy in the future on right side. On October 2012 I had my prophylactic mastectomy (nipple, skin sparring, lift) and had saline inflatable implants placed on top of my muscles after doing much research for a doctor who did this procedure, her name was Dr. Karen Horton out of San Francisco.

On March 2013 I exchanged out with silicone high profile implants....300cc for each side. At exchange she created a nipple on left side...I will be seeing her in July for evaluating the timing of my tatoo procedure in office.

Anyway...I wanted to let you know that I am pleased that I waited and did not have implants placed under muscles. I am also happy to have smaller breasts...I was a full C cup before the big C came knocking at my door.

Also, I am not an athlete...but I'm a young thinking/moving 56 year old....who took care of a newborn grandson 6 months out of chemotherapy treatment.

Hugs,

Terry

This is a great thread. I wish I had found it before my implant exchange a couple of weeks back!! I haven't read all the posts here, but this has been extremely good information. I really struggled (and still do) to find resources to help me understand how to heal and be physically active. Prior to the final implant swap, I was running every day and doing the P90x workout. I'm hoping to be able to return to those prior activities shortly. I felt a little tricked by my plastic surgeon though. Before surgery, I asked her about return to activity, and she told me a couple of weeks. After surgery, she told me 8 - 10 weeks. Anyone have any experience with returning to running after the implant exchange?  I don't want to start too soon and cause major problems, but I really don't see myself sitting out 8 weeks. 

Georgie... I don't have implants, but I believe doctors use a material such as Alloderm to create a sling for the implant when it is placed on top of the muscle.

Hi everyone



Thanks for this great thread. I too wish I had read this before I had my implant and mastectomy. I chose the implant instead of radiation as I had a gut feeling about rads, I just wasn't keen to radiate my body.



I felt the implant was the least invasive, as it not involved surgery to one area, but now I'm not so sure I was right.



I started running 4 weeks after my surgery. I am fit now. In 2 weeks I am going snowboarding for a week, and then I am doing a 4 day backcountry hike in winter. Both of these are against my surgeons recommendations.



M surgeon told me that if I pull the pec muscle enough to bruise it I may lose the skin as it doesn't have a lot of blood supply. I guess I'll cross that bridge if I come to it, but I sure as hell am not going to stop living my life cos of stupid cancer. If I end up needing to get my implant turned into a flap then so be it, but I'm not compromising on quality of life.



If I had've known this before my surgery I may have further investigated the stomach flap option. Who knows, my focus at the time was avoiding rads.



Thanks for all of the interesting thoughts here.



I hope you are all doing ok



Xx kk