Three years ago I was on a road trip to, of all places, Las Vegas. I say “of all places” because I am not a gambler nor much of a drinker and the thought of spending a weekend in smoke-filled casinos has about as much appeal as getting a root canal. I have always been extremely allergic to cigarette smoke. And with cancer on both sides of my family, the smell of smoke has always made me anxious.
My girlfriends were persistent. “It will be fun, a girls weekend”. They showed me pictures of the suite that we would share. It was beautiful (think of the movie “The Hangover”, cut the suite in half and get rid of the tiger and you have a pretty good picture of what we had for the weekend).
I had been feeling incredibly tired for months (I did not yet know I had cancer, but, my extreme tiredness was one of the unnoticed signs of the battle my body was waging against the cancer within). Suddenly the idea of hanging out for three days in a luxury suite while my girlfriends gambled and went to shows (or whatever it is that people do in Vegas) started to have some appeal. I just wanted to rest. I remember how tired I felt then and how much I just wanted to do absolutely nothing. Which, by the way, is so NOT me.
At the last-minute, one of my girlfriend’s sisters (MJ – a breast cancer survivor) was able to join us. We had never met. I drove. MJ sat in the front with me and my two girl friends sat in the back and slept most of the trip to Vegas. The drive gave me and MJ an opportunity to get to know each other.
A little distance into our trip, she began to share her breast cancer experience with me. There were details of how she was diagnosed, of chemotherapy, and a bi-lateral mastectomy. But in particular (probably because it was something she was currently dealing with) she discussed her breast reconstruction surgeries in quite a bit of detail. I remember thinking, wow, I could never go through that. I was amazed at all she had endured.
She told me how the surgeries went. She described how she was about to get “new nipples”, how tattooing would be used to create a new areola and skin from her groin area taken to create the nipples. It was a bit more than I was comfortable hearing. It was so personal, so detailed and we were complete strangers. At one point, she raised up her top to show me what had been done to date.
MJ’s story had quite an impact on me that day. Little did I know, the very drug that saved her life back in 2005 (Herceptin) would, in a matter of months, be coursing through my veins to do the same (I hope) magic.
Not since that road trip have I heard much in the way of truly frank discussions of breast reconstruction. It simply is not an easy topic. Although, MJ had no problem sharing her story with me, perhaps it was because we did not know each other. It becomes a different matter, I think, when it is our friends, our families our colleagues.
Chemobabe has recently taken on this topic in her blog. And another favorite blog of mine, Nancy’s Point. addresses wholeness after breast cancer (with or without reconstruction). And a few years ago, this post (by a blogger who is actually a high school classmate of mine) addresses sexuality after breast cancer reconstruction surgery in her blog: “Breast Cancer the Second Time Around”
So why is it so difficult to discuss?
Breast cancer has provided me a very interesting window into our society. I know sex sells. I know breasts sell, I know, I know, I KNOW! (And, there is a lot written about groups that use sexy names to sell awareness of the disease and to raise funds for research – something that is a whole other topic).
But, until you have had your breasts removed, and until you have been forced to deal with the pressures that be (everyone else’s expectations of what you should or should not do) you really can’t fully understand how much having breasts and being perceived as a woman are so deeply linked. And it goes way beyond sex. And perhaps it is why groups with names like “Save the Ta-tas” and “Feel Your Boobies” are sometimes seen as offensive to those of us that no longer have ta-tas to save or feel.
Initially I was not sure what I wanted to do reconstruction wise. I simply wanted to survive. The last thing I wanted to worry about was breast reconstruction while I was battling an aggressive form of breast cancer.
But, there were other issues I had to consider too. (As a business owner and an employer I felt the need to minimize my time out, time off from work would have broad implications. And, there were other concerns: how long would I have to sit out from playing music, and insurance issues). It was not an easy decision at all. But after a great deal of thought, I decided to have “immediate” breast reconstruction surgery (knowing full well there was nothing immediate about it).
I admit, I felt pressured to begin reconstruction “immediately”. I realize now that this was not perhaps the best route to go (multiple surgeries while going through immune suppressing treatment is not the safest route it turns out). I spent months on IV antibiotics due to infections at the surgical sites (daily nurse visits to my home, an IV pole in my living room . . . okay, I know you get it . . . cancer is not much fun). But, my point is that had I waited on the surgery (which was never presented to me as a real option) I probably would have avoided the multiple infections and loss of skin that occurred (sorry if that is too much information, but, that is what can happen: “morbidity” of your skin, especially radiated skin).
So, I could have waited. But, it is what it is and I prefer not to look backwards. But, there is no reason why someone else can’t perhaps make a better informed decision by hearing of my experience.
Incidentally, I had what is called a lat flap procedure. This was the only option for me. Oddly, I got a lot of grief over my decision to do the lat flap from women at a breast cancer support group. I believe they meant well, I know they did, but, I found it a little upsetting.
I had, after all, consulted with many surgeons, I did research, I am not stupid (at least I didn’t think of myself that way). So, since it was not the kind of support I needed at the time I simply stopped going to the group. I knew for me it was the best decision I could make at the time. Those of us faced with these kinds of choices do not go about it without a lot of thought. As a result, when we are questioned about our decisions – our very hard to make choices – it is frustrating and I suppose, a little insulting.
My wish is that for newly diagnosed women, facing a mastectomy or other breast altering surgery, lumpectomy etc, is that they are presented with all options (not having reconstruction, having it “immediately” and having reconstruction at a later date). And my second wish is for those facing these choices that they be given the time, un-pressured time, to make their decision. And above all, as Chemobabe points out, once the decision has been made . . . it would be nice to have it trusted, not challenged or questioned.
There simply is not a one-size-fits-all approach to reconstructive surgery (whether to have it all, when to have it or type) any more than there is a one-size-fits-all bra.
cancerfree2b 
Terrific post! You cover so much here starting with your pre-cancer trip when you were already feeling tired. And then the conversation with MJ about reconstruction. Who would have thought you were getting a glimpse into your own future, but didn’t know it at the time? I’m sorry you felt pressured into immediate reconstruction, perhaps I was too when I’m truly honest with myself. You also speak about the personal nature of all these decisions and how it is so hard to talk about reconstruction. I totally agree. And why are people so opinionated and even judgmental? Who knows?
Your two wishes are right on. Women need all the facts and all the information before making these profound decisions. Then they need time. And of course, there is no right decision for all.
Thanks for mentioning Nancy’s Point. A woman’s wholeness really has nothing to do with her breasts.
Nancy, thank you so much for your comment. I thoroughly enjoyed your post about wholeness after breast cancer. It is part of what inspired me to write about breast reconstruction.
I did feel pressured and rushed. Once I had made my decision, I was relieved. But, when my decision was met with criticism it just made things all the more difficult . . . I began to doubt my decision at times and that made the process really hard.
I think the most bizarre things about it has been that some people are truly judgmental about it. I want to say to them “how dare you” but, I don’t. It is weird when you are going through such a trying ordeal to be put in the position of having to defend yourself.
I am not done with reconstruction just yet. It started in 2009 and I will hopefully be done by the end of this year. It is now simply a matter of scheduling the next surgery date. But, not an easy task these days . . . since I am trying to work full time, need to work full time. So the idea of another procedure is not appealing right now.
Thank you so much for your comments. I greatly appreciate it.
All the best to you,
Lisa
So true! Everything!
I initially did not want reconstruction, but no one actually informed me that my nipples would go too. Or, that I would end up with caves in my chest. Or that those prosthesis replacements, which I referred to as “rubber chickens” were going to be so hot.
When my mom’s friend was diagnosed and asked me for advice, I told her all those things. And I said that if I had to do it all again, I would choose immediate reconstruction.
Thanks for writing about this.
Dianne
Dianne,
Thank you for your comment. I am amazed (through both my own experience and the experience of others) at how little disclosure there is about mastectomy surgery and reconstructive surgery. How horrifying to wake up and discover that they had removed your nipples . . . no one told you ahead of time? I am so sorry. And, I can understand how that happened because I remember how my mastectomy surgeon kept telling me that I was having a “skin sparing mastectomy”. I thought for some time that this meant my nipples would remain. I found out ahead of time because I had friends who had been through the experience (MJ for example).
It just does not seem to be discussed openly enough. How can we make the right choices for ourselves if we are not fully informed? Obviously one doctor can do a much better job than another at providing us with information. But, rarely is a breast reconstructive doc a specialist in all types of breast reconstruction. So, it seems that perhaps they should not be the only resource for us when faced with these decisions.
Here in California there is a mandatory pamphlet that each breast cancer patient receives. But, the material is pretty out dated. (It provides information about different types of breast reconstruction and informs you of your right to have it covered by insurance).
Maybe a social worker who is trained in the different options (I don’t mean how to do the surgeries) but, truly made aware of what the options are currently. There are more options than I was presented with. And, had I known of one options early enough, I probably would have gone that route rather than the fairly arduous route I have taken.
Are you now considering reconstruction surgery? Feel free to either not answer that question, answer it here or write to me privately. I do not mean to pry. And, you know how I feel about it. There is no one choice that is right for all of us.
Thank you for your comment. I really appreciate it.
All the best,
Lisa
Lisa,
I live in California, so I must have received that pamphlet, but like you said, it’s pretty out-dated. I had no one to guide me through, even though our health plan provided a breast cancer coordinator.
I should have asked more questions.
I started my reconstruction one year after my mastectomy. I did not have radiation, but they lined me up for it, I was tattooed but never got it. I ended up having another surgery instead.
My reconstruction was done about a year after I ended chemo. I have silicone implants, because there wasn’t enough fat anywhere on my body to make even a small one. Besides I had the two-for-one deal. (double mastectomy), Just not enough extra material..
I am satisfied with the results. I have one small wrinkle in the scar that would show through if I actually wore a tight shirt. I did not have any kind of nipples done, but I do have fake nipple stick-ons. I never wear them.
Dianne,
I am so glad to hear that you are satisfied with the results. That is something 🙂 I can’t say I am satisfied yet, but, I still have one more surgery to go, so hopefully after that I will feel better about the end “products”.
I went with the silicone implants as well. And, I was in the same situation, there simply was not enough fat anywhere that could be used. I had the lat procedure to bring skin from my back to replace skin on my radiated breast that did not survive treatment.
When I had expanders in, the expander on the radiated side broke through my skin, became infected. The tissue had to be removed. It left for a puzzle piece appearance – lovely, I know. But, the surgeon I ended up with at Cedars Sinai (the one they brought in to fix the mess the first one left me with) did great with what he had to work with. And, I am very lucky because the infection could have lead to a lot worse than having to steal skin from my back to replace the skin on my front . . . it could have killed me. So, in the scheme of things . . . I am pretty grateful.
It is so true that there is way too little discussion about the surgery. You can’t blame yourself for not asking enough questions . . . how do we even know what to ask? They are the experts and the onus should be upon them to apprise us of what is going to happen.
So we are both in California?!
I am in Southern California, how about you?
All the best,
Lisa
This is a great post. Reconstruction is never far from my mind and though I had “immediate” reconstruction, you are so right…nothing immediate about it. Still not finished over two years later. I appreciate your openess here, it does seem harder to discuss than other parts of this whole journey, but as you say, we need information, time and the right kind of support to make the decision that’s right for ourselves and not be judged for it. I’m sorry you didn’t find that in your group, but it sounds like you did what was right for you and good for you on that move.
Stacey,
Thank you for your comment. I too am over two years out from my “immediate” breast reconstruction surgery (ha, ha, ha . . . not very funny) and I am still not finished. I believe I have one more procedure . . . assuming it goes the way it should. Fun times! 🙂
I just wonder how it is that they can even call it that – “immediate” reconstruction . . . hmmm
Thank you so much for your comment.
All the best,
Lisa
Isn’t it interesting how a complete stranger can share so much of an intimate nature, things you probably don’t even share with your best girlfriends? Such is the nature of the breast cancer sisterhood. Elizabeth Edwards confirmed that when she told me that she knows women she’s just met, who’ve had breast cancer, better than she knows her best friends.
I’m sorry your support group was more interested in defending their point of view than your decision. With the resources we’re given, we all have to do what’s in our best interest. That’s what you did. Don’t let anyone second guess you.
Brenda,
Thank you for your comment. Yes, it is a bizarre part of all of this, the trauma that binds us all to one another I guess. It must be that. When people see my scars they get a better idea of what I have been through. I think people are shocked actually.
They thing that you just get breast implants, like one would do for cosmetic purposes, breast enlargement. But, it is quite another thing when it is reconstruction. People don’t get that. I did not get that. I have a number of scars (my back from where they took the lattissimus muscle and skin to replace the skin that did not survive the radiation) and in the front.
Like I said, the scars are fading some. Still it is quite a sight. What gets me is that a year after one of my surgeries there is one scar that still just hurts like the dickens. For some time I would freak out thinking it must be cancer coming back, then I would reach for where the pain was coming from and, sure enough, it was along the scar. Funny how relieved I would be every time. Now I just tune it out, or at least try to.
How wonderful that you have met Elizabeth Edwards. She was a remarkable woman. I completely agree with her statement. When you add up all of the insults this disease visits upon us, who can really understand it all or how it affects you but another breast cancer patient?
I am sorry for how my “support” group reacted too. I felt under siege by a couple of women in particular. And it was as you said – like they were defending their own positions rather than anything close to supporting mine. It was as if my choice was somehow perceived as an attack on their own decisions. It just goes to show how deep some of this can run and how long it can last for some of us (one woman was a 15 year plus survivor).
Thank you again for your comment.
All the best,
Lisa
Hello,
I have a question about your blog. Please email me!
Thanks,
David
Hello David,
I would be happy to email you, but, I do not see an email address . . . maybe it is in your profile and I am just somehow missing it. You can email me at cancerfree2b@gmail.com
Look forward to hearing from you.
Lisa
Oh my goodness, I can so relate to the way you decided your reconstruction strategy. I also had a lat flap. In my case, not the best decision. I have scoliosis. So that ‘little bit of muscle from my back that I’ll probably never miss’ – I definitely miss it. I ended up with 2 frozen shoulders, which thankfully are better now, but hurt as much as the surgeries did. But I was in a hurry to get back to some state of womanhood, and besides that, the doctor made me feel as if that was my only option. I hope I have the opportunity to help other women take their time thru the process.
Dear Pink Kitchen (love your name) 🙂
Thank you for your comment. Wow, I have “mild” scoliosis. Since all of the surgeries and moved muscle – that I too was told I would not miss – I swear my chest bones (not really sure what to call it) have changed, protrude in a different way. In the past, before breast cancer, as a teenager I was diagnosed with mild scoliosis and was told that this was what was causing the bone between my breasts to protrude (very slightly – not noticeable really by anyone but me). That remained pretty stable through out my life, until breast cancer and the subsequent surgeries. Now it is noticeable and initially I was concerned that it was cancer. My oncologist assured me it was not.
But, it wasn’t until your post that I put it together, it is probably from the muscle being moved from my back . . . it has to have an effect.
Anyway, it is quite a ride isn’t it?
I just started doing yoga and I am amazed at how it is helping me. I take it one day at a time and hope, always hope, for the best.
Glad to connect with you here and on twitter!
All the best,
Lisa