More on My Story and Why My Reconstruction is Not a "Sexy Boob Job"

Yesterday, in the comments section of this blog, I was reprimanded by a reader named Becca, a young woman with breast cancer who has chosen to have her healthy breast removed to reduce her risk of future disease.  She took exception to my last post. I wrote a long response to her in the comments section, then realized I'd rather put that response here, where it's more visible. Here is what Becca wrote:

Fear is not the only reason women get bilateral mastectomies. Younger women with breast cancer (like myself, diagnosed at 35) are more likely to have this surgery for a lot of reasons, such as: * we have many more years of life to develop a new primary in the other breast. My surgeon, also at MSKCC, estimated my risk to be 25% or higher. (I’m BRCA negative) * we want a symmetrical chest * we want to lessen our need for additional surgeries in the future, which we would likely need to achieve symmetry as our natural breast aged.

I’m starting to resent this idea that women are getting too much surgery because we are uninformed, pressured by our doctors, or sniveling cowards. I’m part of a group of about 1000 young women who’ve had breast cancer. Most of us had bilateral mastectomies. None of us regret it. The women who do have regrets? Those who need constant monitoring of the “good” breast — which means every-6-month mammograms or MRI, and biopsies of anything suspicious. Those trying to get dressed every day while being very lopsided. But most of all, those women who end up developing a new breast cancer and have to go through surgery/chemo/radiation AGAIN. I think you’re downplaying how terrifying, disruptive, difficult and damaging this is to a woman.

Bilateral mastectomies are not the right choice for every woman diagnosed with breast cancer. But they were right for me, and for so many of my co-survivors. Please respect our choices too.

Also this: “Anyone can have body parts cut off.” What!? Really?

 

And here is my response:

Becca, I understand how emotional this issue is, believe me. I've been through cancer treatment twice, the first time at a very young age. In fact, I'm still in cancer treatment and will be until at least 2017.

I don't think women who choose bilateral mastectomy are cowards. But I also don't think they are heroes. Not even Angelina Jolie. Is she really braver than someone who opted for surveillance, or to have her ovaries removed? If so, why?  So many of the choices we have with cancer are murky and lousy. My point in saying that "anyone can cut off body parts" was that if that's where she stops it is really not enough. Rather than arguing, we who have faced this need to be agents of change, to educate ourselves as thoroughly as possible and push for better  options for the next generation so they don't have to go through what we did. I don't want my daughter's only choice, should they some day find a new genetic mutation that I have and, Heaven forbid, she has, to be the brave choice of surgery. I just don't. Nor do I don't want women to believe we can amputate our way out of an epidemic.

You may have made a fully informed choice to remove both breasts. I have a number of friends over the years who've made the same decision and they were also fully informed.  But the research clearly indicates that many women--perhaps not you or your friends or my friends-- are opting for  bilateral mastectomies without an accurate understanding of their risk or education about what the procedure will and will not do for them in terms of future cancer. I can't believe you would think that's ok. Women (typically cancer patients are older than you or I) are estimating their risk of a new cancer over ten years to be 30% when it is closer to 5%. If they are basing surgery on that assumption, it is simply not informed choice.

It also worries--and, frankly, offends--me that Angelina Jolie's reconstruction is being called a "boob job." If you accuse me of playing down the disruptiveness of surveillance (though personally I never found it especially disruptive), I would say the far bigger danger at this moment  is playing  down the risks and realities of  mastectomy.

Gayle Sulik writes about the aggressive publicity campaigns launched by some reconstructive surgeons since Jolie's announcement. I have, as a journalist, experienced a similar onslaught and find it repugnant.  These PR-releases also only discuss the positives. None mention women who after reconstruction suffer, as Sulik writes, "on-going pain and weakness, scar tissue, nerve damage, risks of infection and implant rupture, and other complications." I've known many women with implants, which is what Jolie has and what you apparently have. Some are very happy with them as you are. They are lucky. Others have had constant issues and deflations and multiple surgeries and wish they'd never done it. Some implants look relatively natural. Others harden and look like bad porn star boobs. Flap surgeries, which I had, carry their own risks, of which I was informed.

What's more, no matter how good-looking or  symmetrical reconstruction may be, it is, essentially, a permanent prosthesis. A reconstructd breast has no sensation. You may look good in clothes and hot  to others, but you will feel nothing when touched. It is the sensory equivalent of having a ball of socks on your chest. Why isn't that out there along with Angelina's "beautiful results" so women considering such surgery are fully informed? I  find that when I tell my friends that my reconstructed breast is numb they are shocked: they had no idea that would be so. Just like they don't know that breast cancer in your breast doesn't kill you. Just like they don't know that breast cancer doesn't spread laterally. Just like they don't know that lifetime risk is not the same as current risk. If you understand all of that, again, and you choose bilateral mastectomy, that's fine. Or if mastectomy is required, as in my case, that's the way it goes. But I am extremely concerned about misinformed decision-making.

Also, I'm sure you know that while you may not need surgery to adjust for sagging, implants tend not to last more than about 10-15 years. So, since you were so young, you will eventually need additional surgeries to replace the implants. Your implants may also get in the way of detecting a chest wall recurrence.

I was also diagnosed young: in 1997, at 35 years old. I considered mastectomy at the time, but since lumpectomy with radiation has been proven over and over to be equally effective (possibly more so) that was the direction I went. I did have concerns about the radiation at  such a young age, and it wasn't an easy decision.

I never considered removing my healthy breast (I tested BRCA-) although my  risk of a new primary in my other breast was also about 25% over my lifespan.  I figured that made my risk 13% higher than someone else's over several decades. Which sucks, but  then again, there was a 75% chance I wouldn't get a second cancer. At that time I didn't take tamoxifen, which would've reduced that risk considerably. The drug puts you into menopause, at least temporarily, and I wanted to have a child. Since my recurrence I have started taking it and it lowers that lifetime risk in the other breast to 12%--that of an average woman. You may have a more aggressive form of disease than I did, or a form that won't respond to tamoxifen. That is a different set of decisions as well. A woman who dislikes the size, shape or other aspects of her healthy breast may also make a different set of choices and be less concerned with sensation.

There were benefits to waiting to do a mastectomy (though I didn't do mine by choice). As an older woman (and after having a baby) I have enough belly fat to use for  reconstruction. I was too thin to do that in my 30s (sigh) and, anyway, it was less commonly done. That means my new breast is not an implant. It was made from my own flesh. It won't degrade. It matches my healthy breast and will (for better or worse) be similarly affected by gravity. So no replacement down the line, no nip and tuck. I am done with surgery. And I am not, nor will I be, "lopsided" as a result of keeping my healthy breast. (I probably would have had an implant if I could have--the initial surgery is WAY easier, but I'm glad it ended up this way).

I also benefited  because nipple-sparing mastectomy was not then available. Now it is.  Again, still no sensation, but it looks better. For those considering prophylactic mastectomy who can possibly delay, know that there are new techniques in the offing that may be less invasive and create a better result. Maybe, some day, they will even spare the nerves. That's another reason to take into account how your risk changes over time.

Becca, being diagnosed with cancer young is horrifying and scary and I'm sorry it happened to you, too. Often it means the cancer you have is more aggressive. This was not the case for me (I have "little old lady" cancer) and I hope it's not for you. It may interest you to know what has happened to the women in my initial support group of women under 40 with breast cancer.

Sadly, two have died. They had aggressive disease from early on and mastectomy would have made no difference to them.

Those of us who are still here are now in our fifties with full, busy lives. Most of us are faring well. Two have metastatic disease;  one has been living with mets for 15 years. A mastectomy would not have made a difference to either of them. Three have had chest wall recurrences, one despite mastectomy. I am the only one who has had a local recurrence.

Removing my healthy breast would not have changed that. Admittedly, a mastectomy would have. Still, the chances that this would have happened were very small--maybe 6% at most. There have been advantages to delaying mastectomy 15 years. And while a local recurrence does raise my risk of metastatic disease, it is not by much. So for me, living with that small risk of recurrence was worth it, even though things have not fully gone my way.

Everyone else, as far as I know, has remained healthy and I hope always will. Three of us who had not yet had children have gone on to become mothers, which has been a great gift.

In every case except perhaps mine, our status has played out as the original biology of our tumors would predict.

No one has been diagnosed with a new cancer in her other breast.

I hope for and work towards better options so that none of our friends, sisters, mothers, aunts, daughters, neighbors etc will have to face the choices we did.

Be well.

Image 2This is what my  cancer looks like under the microscope. Weirdly pretty, isn't it?