No easy choicePosted: May 22, 2013 Filed under: breast cancer, cancer fatigue | Tags: Angelina Jolie, Angelina Jolie preventative mastectomy, breast reconstruction, Dr Deanna Attai, lymphedema, The New York Times Well blog 15 Comments
I have a friend I met through this little blog. Like I, she lives in a suburb of this vast, sprawling city, although we are on completely opposite ends of the city — an hour’s drive apart. In this city of more than 2 million people, we both had the same surgeon for our reconstruction. She found this little blog while researching our shared doc. Small world, huh?
M and I have gotten to know each other in short order, as is the case when strangers are bound by the worst-case scenario. Instead of discovering that we both like to hike or collect Troll dolls or any number of commonalities that bring people together to forge a friendship, we’ve bonded over things like post-surgery infections, failed surgeries, broken promises and shattered dreams. We’ve traded war stories, vented frustrations and showed each other our scars — the ones on the outside, that is; the ones that can be seen by others.
Our most recent conversation was about how our reconstructive surgeries didn’t exactly turn out the way we expected. We’ve covered this topic before, and will likely cover it again. This most recent conversation coincided with this article in The New York Times following Angelina Jolie’s announcement that she had a prophylactic mastectomy. While Jolie has received a lot of praise, the article says that some breast surgeons worry that the general public will think that reconstruction following a mastectomy is “a quick and easy procedure” and that most people don’t fully understand what’s really involved. I certainly didn’t. I do now. Man, oh man, I do now.
The Times article elaborates: “For most patients, breast reconstruction requires an extended series of operations and follow-up visits that can yield variable results. Some women experience so many complications that they just have the implants removed.” While not all reconstruction involves implants, as in the case with M and me, that’s the most common version, and as long as one doesn’t suffer complications like M and I did, it’s a straightforward process.
It is not, however, a boob job. Roseann Valletti was interviewed for The Times article, and reports that “she is uncomfortable. All the time. ‘It feels like I’m wrapped up in duct tape,’ said Mrs. Valletti, 54, of the persistent tightness in her chest that many women describe after breast reconstruction. They look terrific, to the eye, but it’s never going to feel like it’s not pulling or it’s not tight. It took me a while to accept that. This is the new normal.”
Ah, yes…the “new normal.” M and I have discussed this “new normal.” A lot. And we’ve both come to the conclusion that we don’t like it. Not one bit. We’re so over the “look on the bright side” mentality that is forced upon us cancer patients, especially those of us “lucky” enough to have “the good kind” of cancer. Newsflash, people: there is no good kind. There are degrees of shittiness, but none of them is good.
M and I have learned the hard way that reconstruction after a mastectomy is not a simple thing, as some people may have inferred from Jolie’s experience. As stated in The Times: “Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result. A syndrome called upper quarter dysfunction — its symptoms include pain, restricted immobility and impaired sensation and strength — has been reported in over half of breast cancer survivors and may be more frequent in those who undergo breast reconstruction, according to a 2012 study in the journal Cancer.”
Running through that check list, I can say yes to bleeding, infection (not just risk of, but full-blown), scarring, persistent pain, and additional incisions. No anesthesia complications, no implants (ruptured, leaky or otherwise), or upper quarter dysfunction, although I certainly do have all of the symptoms listed, so perhaps I do have it and just don’t know it. Add to that list less-than-satisfactory aesthetic results, intermittent lymphedema, frustratingly painful scar tissue, divots in both armpits from lymph-node removal, unholy difficulty finding a bra that fits, PTSD, a near-uncontrollable aversion to antibiotics, and discomfort when reaching or stretching my arms.
Dr Deanna Attai, a mainstay in the online breast cancer community, was interviewed for The Times article and said, “We do not yet have the ability to wave a wand over you and take out breast tissue and put in an implant — we’re not at “Star Trek” medicine.”
Rats. I like the idea of just waving a magic wand and getting “Star Trek” medicine. Although, if there were such a magic wand to be waved, I’d wish not for “Star Trek” medicine, but for never having had breast cancer in the first place.
Great article…By the way, do you know what your “magic wand” plant is called? I have 1 that comes up in my yard every year. I call it my “sparkle plant”…cuz a girl has to SPARKLE every day, right? All the best to you. Prayers from Dallas, TX
Hi Eloise! I don’t know what that plant is called, but now I’ll call it the sparkle plant! Thanks for the lovely suggestion!
Oh for a magic wand, I’d be waving that sucker all over the place. I understand the thinking behind prophylactic mastectomies as well as the concern about risk of surgically removing healthy body parts. I do not understand, not even a little, the hateful, venomous attacks unleashed on those who chose either option by people neither involved nor experienced in the process.
If wands did exist, dear Ed, you’d be the very first person I would hope would get one, for you would do mountains of good with it.
Thanks for this article, for your blog. It gives me a much better understanding of the whole hideous ordeal that is breast cancer. It helps me understand after the fact what family members went through when they battled breast cancer. I am glad to hear you and M have found each other–maybe you can decide on something similar to collect, like magic wands or Star Trek toys, or stupid comments from stupid people about cancer. I love your honesty and humor.
Patti, the idea of collecting stupid comments from stupid people made me laugh so hard I nearly spit my coffee!
I think Angelina Jolie’s article should have an asterisk by her statement that the procedure was quick and easy, linking readers to your blog post – you know, for some wider perspective on the subject. ~Catherine
I agree with Catherine! Love Patti’s idea of gathering stupid comments. 🙂
That was one thing about Angelina’s article that really bothered me too. There is nothing easy about having a mastectomy and reconstruction. And even if the end result is “quite lovely” as she stated somewhere, things are not the same. Reconstructed breasts are exactly that, reconstructed. Thanks for writing this.
Thank you so much for the mention and for your very kind remarks! And I really wish I had some sort of magic wand to wave – nothing I wold love more than to just be able to make everything better, in a simple painless way.
One of the main reasons I opted not to have reconstruction surgery was the potential of complications, pain and the possibility of further problems. Our surgery is covered by Government but still not worth the risk… Alli…..
Wonderful post about the truth of reconstruction. Too many people think it’s a “boob job,” and as you pointed out, it’s not. I had a DIEP flap reconstruction, and things turned out as well as possible. But I still have residual surgical pain, scars (not to mention my emotional scars and body image issues) and breasts that don’t look like the ones that were my natural ones.
Thank you for writing this important post.
Wonderful article! I enjoyed reading your blog and this one in particular, I definitely agree that it’s no easy choice. The news about Angelina Jolie undergoing the preventive procedure was a shock to me. I admire her for her bravery and strength…and I salute all of you who have been fighting the disease for your courage and humor amidst the trying times.
A “magic wand” would be heaven’s sent! Breast reconstruction have advanced over the years and I’ve heard of this new breakthrough called AeroForm that should be more comfortable (http://www.airxpanders.com/ ). It’s no “magic wand” but its good to know that there is this option out there.
You are an inspiration to all the people with the same battle. Thanks for the good read and I wish you all the best.