Why is it so hard for some to accept a choice not to recon?

Wren44,

I had a UMX with no recon in March 2011. It looked scary at first and I refused to look at it, even when the drains were in. As time goes on the scar sort of blends in and I can't really see it anymore. I mean it is so thin and flat. Call me strange, I sort of like it. But it's healthy sister on the left, is small AA, so I can deal with going without a bra sometimes. I did massage the scar daily, still do. And I stretch daily because it feels like a band across that area if I don't. I would not have gotten recon if you paid me. A large silicone filled thing under my chest muscle was enough to make me walk out of the PS office in a hurry. Silicone implants can move around, they can burst, they have to be replaced. Personally, my own opinion, I think they are dangerous. I've heard so many bad stories about recon, can't even imagine after fighting cancer to deal with the multiple surgeries you need with recon.

Hi My doctor wanted me to meet with a PS, but I said I wasnt interested. First the surgeon said that with immediate recon, if you have to have radiation, it messes it up. Second, I did not want to go thru more surgery. I do have one regret though,. I wish the surgeon would have woken me up during surgery to tell me that I had ILC. I would have gone for a BMX instead of UMX. I am very large breasted and would rather be boobless. Right now I am trying to get healthier aand have decided that once I get down alot more wieght, I am going to have a MX on the other side. No recon...

I'm thinking of going back to being flat-chested. I was that way before my BMX w/ reconstruction (TEs, then swapped out for silicone implants). I had radiation on the right/cancer side and now about four years out the right breast has capsular contracture. I've talked w/ plastic surgeons about having my implants replaced or about doing tissue flap reconstruction. 

I can't fathom the thought of having multiple reconstruction surgeries now -- and possibly more to come years later -- depending on my option choice. In some ways, I'd just like to be flat chested, with nipples. I'd have to have surgery to remove the implants and add a nipple on my right side. 

Has anyone else "added" a nipple after mastectomy w/o reconstruction? 

Hi 11BC,

I haven't been in your situation, but I know there are a few women who post here who have lymphedema and have either considered or actually had their implants removed. I hope they'll come along and post soon. 

One thing I know is that it's important to find a very qualified plastic surgeon who is understanding of your situation and knowledgeable about lymphedema.

Barbara 

CLC: How's it going? Are you still being questioned about your decision not to have reconstruction? I'm curious: did you add nipples -- or were your original nipples saved w/ nipple sparing surgery?

I'm considering undoing my reconstruction and "going flat" but I'd like to have nipples!

Hope this finds you well. 

Tina337: Thanks for the quick response. Super helpful. I hadn't considered "tacking muscle" to the chest wall or that my ribs could possibly be concave due to my tissue expanders and then silicone implants.

It does seem to me to be important to work with a plastic surgeon who is familiar w/ lymphedema. 

I was aware that my risk of capsular contracture increased w/ radiation and further increased w/ ea. reconstruction. Thanks to BC.org forums, earlier I found that FDA site (and heard of Dr. Massey). The increased risk is one of the reasons I'm considering "deconstructing."

Did you get/have nipples? I think I may like to have "low profile" nipples, even if I'm flat!!!

I've more to say, but have to go now. I sure appreciate your comments/insights, and everyone else's.

I too have chosen not to have reconstruction, I am small breasted and it doesnt really affect me in a negative way at all, I too have one breast left not too happy with the scar as of yet but stil only 2 weeks since surgery so waiting for it to heal better.. I just don't want to go thru more surgery and dealing with more problems and pain. I am happy it is over and now having to follow with treatments.

For me it is not that huge of a deal only having one breast I think perhaps if I had larger breasts it would be a little more difficult but I am fine and glad the cancer is gone.

I need to have a ductal excision in the same boob that I had cancer in the first time.  The doctor told me that if it turns out to be a recurrence of cancer, I will have to have a mastectomy.  And then he began again about reconstruction and I said I am not interested.  He said that I might not be now, but when faced with it, I would probably change my mind.  I looked him in the eye and told him I have given this a great deal of thought I will not change my mind. I am 58, I really don't need tits anymore to feel like a whole woman ! ! !

Hi novascarlet,

I had a bilateral mastectomy without reconstruction and I choose to wear breast forms, which my DH sometimes think look better than my originals (with clothes on, anyway LOL). I also sometimes wear my soft, lifelike silicone forms when we're intimate. It's been a pleasant surprise to both of us how much this turns him on (and me as well!). I don't mean to give you TMI, but thought this is something that might be reassuring as you consider your options.

I haven't tattooed over my chest and for me, it's not something I would consider, but I believe other women have. Perhaps one of them will post.

Barbara

BreastFree.org

Here is another forum on Tattoos

http://community.breastcancer.org/forum/7/topic/771744?page=1#post_2516715 

I wonder if getting a tattoo could be a trigger for developing lymphedema in that area?

Possibly not, since women do get their aereolas tattooed.

PS: CLC: Thanks for the earlier feedback.

Wishing Everyone well! 

"Why is it so hard for some to accept a choice not to recon?"

I realize that, in addition to being a source of information, an important role of these discussion boards is to provide a place to vent to a sympathetic audience. With that in mind, please don't take this post to be an attempt to answer your question. But I think the simple answer to your question (at least with regard to non-medical professionals) is "ignorance". This post is just one "Y-chromosome" perspective to explain the source of that ignorance.

"Why is it so hard for some to accept a choice not to recon?" Because your surgeon, your husband, your family and friends want what's best for you and they do not understand your choice.

Ideally, you should not have to explain yourself to anyone. And of course, you DO NOT have to explain yourself to anyone. But it is often worthwhile to explain to your close relationships (e.g. your husband and your close relatives and friends) the reasons for your decisions when they express concerns about them.

Although your surgeon is not one of these "close relationships", he/she has other concerns. Your surgeon likely has over a hundred patients a year and thousands during his/her career. Although they might superficially get to know you during the office visits, they don't really know you. But they do know that even the strongest women experience fear, anxiety and stress when told they have cancer. It would be irresponsible of them to not inform you of the option of reconstruction. Although ideally you should not have to explain yourself to your surgeon, if you do he/she should likely (assuming they remember you) not continue to bring it up.

There are good reasons and bad reasons for rejecting reconstruction. "Bad" reasons are ones based on misinformation.

My wife was diagnosed with stage 2 breast cancer on March 1st. Her mother (cancer free for 35 years) and an older sister (cancer free for 13 years) are breast cancer survivors and her two younger sisters underwent pre-emptive mastectomies after testing positive for the BRAC1 gene. Two of her sisters had reconstruction and one did not. On March 2nd my wife announced to me that she was getting a double mastectomy with no reconstruction. Admittedly, it disturbed me; especially since I believed that her decision was being made based on misinformation - the reason she gave for foregoing reconstruction was that it made detection of future cancers more difficult.

On March 5th we met with a surgeon who confirmed that reconstruction did not affect the ability to detect recurrent or future tumors. My wife, however, still chose to not do reconstruction because it significantly complicated the surgery and the recovery time. Although I was not excited about her decision, knowing it was being made for "good" reasons (i.e. factual reasons and not misperceptions) made it a lot easier to accept.

Many men - and women - have no idea what breast reconstruction entails. Many of you, due to family members or friends, might have had some experience with breast cancer prior to being diagnosed yourselves; my wife sure had. And having had two sisters who had reconstruction and another sister and a mother who had not, she knew a lot more about reconstruction than I. But I don't see my sister-in-laws naked. And I don't talk to them about the intimate details of the removal of their breasts. I just assumed that after the breasts were removed the surgeon could install implants and make my wife look like Pamela Anderson. I didn't even know the nipples were removed as part of the surgery. That may seem laughable to many of you, but my ignorance is not uncommon.

The night after our meeting with the surgeon I researched breast reconstruction on the internet. With their shirts on, my sister-in-laws who had reconstruction performed look just like they did prior to their mastectomies, but after a few minutes on the internet I now have an idea of what they likely look like underneath. I appreciate why a woman would choose to go through the trouble of getting her breasts reconstructed and I applaud their perservence to do so. But I also fully understand why a woman might choose to forego it. Keep in mind, however, that most people have no idea what reconstruction is; they assume that its end result is a woman getting her original breasts back through the "magic" of saline implants and plastic surgery (I realize your surgeon knows better and I'm not trying to make any excuse for him/her).

Another decision my wife had to make was whether or not to remove her healthy breast. Given her family medical history, this was not a difficult decision for her to make. But it was different than the decision I would have made so this too was nothing I was excited about. However, it is important for spouses, friends and family to recognize the mental anguish which comes along with cancer. Had my wife kept her healthy breast, like her mother she would likely live the rest of her life without experiencing a second tumor; however, like her mother, for the rest of her life she would view that healthy breast as a time bomb. Her mental health is as important as her physical health. I know none of you need my affirmation that - given her anxiety about it - she made the right decision in removing her healthy breast, but some of your friends and family who have not experienced cancer might benefit from this understanding.

Just like women, the most important thing for men in their relationships is to feel needed and appreciated. Single men might focus mainly on physical appearence, but men already in a committed relationship have no trouble looking past the scars. What is important to them is that you accept your body and are still willing to share it with them. And what is also important to them is to feel that they are important in your decision making (just as it is important to you to feel he includes you in his decision making). Although the choice of what to do with your body is ultimately yours, your husband will be more comfortable with it if you make the effort to explain it to him. Ideally he should accept your choice without explanation, but whose husband is ideal?

I am so happy to have come across this forum.  I am waiting for my mastectomy surgery and have decided against recontruction.  I'm happy with my decision but I find so many other people are questioning it.  I know it is my decision but other people's doubt makes me wonder if I am looking at all the pros & cons.  It is nice to see that people have stayed happy with their decisions over time.

LSCriscione......what a moving post.You are an insightful and amazing man.

Your wife is so lucky to have you.

I chose not to reconstruct, (I had a single mastectomy), based on time factors and a certain indecision and,I must admit, a fear of what appeared to me an 'unnecessary' surgery. Do I regret my decision? On the whole, no; though I sometimes long for a semblance of that other missing breast.

I am lucky to have found a relationship after mastectomy, with someone who is accepting of the loss of one breast; though I rarely remove all my clothes when we are intimate - how I wish I did not have those inhibitiions.

Fully-clothed, I am very happy, and often wear quite low-cut tops, and mostly don't think about the fact that one breast is a silicone prosthesis.

It is a complex set of emotions.

Here is another perspective:

"For the A-Cup Crowd, Minimal Assets Are a Plus"

http://www.nytimes.com/2010/09/02/fashion/02Small.html?_r=1&pagewanted=all

I'd be tempted to tell my friends I'm getting reconstruction. Bet they wouldn't have the nerve to say 'you really look flat to me'. I discovered I have exactly 1 shirt that's too low cut now. And it was a party top, not every day.