So a bit of background information before I post about the appointment:
The final stage of my reconstruction was about 2 years and 9 months ago. It involved removing the expanders that had been placed under my pectoral muscles and replacing them with shaped, textured ("gummy bear") implants that look like these:
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Unfortunately, shortly after I had my gummy bear implants put in, research began to hit the media that linked breast implants--but especially textured implants like the gummy bear model--to development of a rare type of cancer--breast implant-associated anaplastic large cell lymphoma (BIA-ALCL). Initially (in 2016) the estimates were about 1 case in 30,000 implants, and few deaths. (It is a highly treatable form of lymphoma.) Over time, as knowledge of the link grew, the estimate gradually increased so that the current estimate could be as high as 1 in 3817 women. Still very low, and still very treatable, but add it to the list of "one more thing cancer gives you to worry about."
This was also the time where I became involved with Team Phoenix, and met a LOT more breast cancer survivors, including many who chose not to reconstruct, but to remain flat. When I was first diagnosed in 2014, there were so many decisions to make, and I don't remember much of my conscious decision of what to do--I just know that everyone I knew who had had breast cancer did reconstruction, and when I met with the plastic surgeon, he confidently told me, "you're young--you'll want to reconstruct" and "there's not enough tissue to reconstruct from your stomach or butt, so you'll need implants" and "you are removing your nipples, so you won't be able to do immediate reconstruction." Whatever the reason, I didn't even consider flat to be an option. But now I had what felt like ticking time bombs in my chest, and I was beating myself up about my vanity putting myself at additional risk. Furthermore, my reconstructed breasts have never felt good. I don't even mean that they never felt like real breasts--they have always been uncomfortable, and the right one (cancer/radiation side) has always been painful. I stretch every day, and keep going back to PT when the pain and tightness on the right side are too much to deal with. Recently I developed rotator cuff issues on the right, likely due to my pain and awkward use of the right side. And it regularly goes numb and itches and is just a constant issue. So I joined a Facebook group called "Flat and Fabulous" and read more about the choice to go flat. And knowing that I was coming up on my 3 year implant-aversary, I knew I had to either get an MRI or decide to explant (opposite of implant). I wasn't sure what to do or in what order, so I called Dr. Sterkin's office and they said I needed to see Dr. Sterkin himself, so I made an appointment. The earliest appointment was 6 weeks out. And that was yesterday.
During the immediate time period before and after my mastectomy, I saw Dr. Sterkin a lot. I had check-ups after surgeries, and appointments to add saline to the expanders, and I was in his office about every two weeks. Trying to avoid taking as much time off of work for the appointments, I usually made them for 4:00 or 4:15, and I quickly learned that he often ran late and I might not get in until after 5:00. I would come to appointments prepared, with knitting or a book, and practiced relaxation techniques, viewing the extra waiting time as a gift to make me slow down, and somewhat a penalty for scheduling the last appointment of the day. Knowing this, I decided to take a morning appointment to avoid that delay for my 3 year follow-up.
I arrived a little after 9:00 am and was almost immediately shown back into a room for my 9:30 appointment (was told to be there at 9:15 for paperwork). I saw the MA and changed into a gown and then I waited. And waited. And waited. An hour later the MA came back in and said Dr. Sterkin would be in shortly. An hour and a half later, Dr. Sterkin finally came in.
And here's where my confusion sets in.
Dr. Sterkin (in his tactful way ;)) explains to me that the odds of my aggressive breast cancer coming back and killing me are volumes higher than the chance of my dying from BIA-ALCL. (Scientist that I am, I actually find this comforting.) But he did listen to my complaints of pain on the right. And after a lot of poking and prodding and discussion, he told me that I have a grade 2 or 3 capsular contracture on the right side, and that removing the implant was the only way to fix it. (I knew this and had suspected it might be a contracture due to the pain, but I didn't realize it had actually distorted the position of that reconstructed breast until Dr. Sterkin helpfully pointed it out.) I was relieved that he was on the same page--at least where I was leaning. I was especially encouraged by his explanation that if the implants below the muscle were removed, I wouldn't have the pain I get after biking a long way (uses the pecs and they tighten and hurt a lot).
But then things shifted. He immediately launched into how to "fix" it, and that involves a capsulectomy (removing the implant with the capsule around it) and then laying the pectoral muscle back against the ribs and putting in a new implant in front of the muscle. I tried several times to stop him and explain that if I were having surgery again, it would be the last time and I'd just go flat, but he didn't let me interrupt.
An hour later, I'd picked out non-gummy bear, rounded, smooth-surface implants to insert pre-pectorally when I swapped the sub-pectoral gummy bears. I'm still not sure how that happened. It involved statements like "I almost never have a woman go flat--only when it's an 80 year old woman with ancient implants and she wouldn't reconstruct at that time." and "You're too young to go flat." and "I'll do whatever you choose, but I won't be able to make it look good." and "I've not done this on an irradiated side, but I think with the fat grafting that it should work." and "There is a risk of infection." I questioned my desire to go flat. Since joining the "Flat & Fabulous" group, I've seen a lot of photos of women going flat, and a lot of reconstructed "breasts." And Dr. Sterkin did a really nice job on me. Even with the capsular contraction, I have pretty natural-looking, even "breasts." And my clothes fit pretty well. And I saw photos of how much better the pre-pectoral implants look (they almost give you cleavage!).
But now I'm away from all that and I'm definitely conflicted. I'm also frustrated that I'm even considering a risky, somewhat experimental surgery for vanity. And I don't know exactly what to do. I *think* I need to see another plastic surgeon and see what they say about going flat. And maybe I need to talk more to people who have gone flat to see if I'm ready for it. Maybe I need referrals if you have a plastic surgeon you like who isn't anti-flat? Most of all, I am scared to have another surgery. I could just stay as I am, have the MRI, and deal with the pain. I know that any surgery will take me away from biking for awhile, and that makes me sad. And then I think about my sisters who have recently been diagnosed with recurrences, metastases, or second primary cancers, and I just want to scream a giant FU to cancer--the gift that keeps on giving.
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However, I must say that one of the best things I could do to get my mind off this tonight is attend a gallery opening that my dear friend (and Team Phoenix sister) Wendy created. It is called "Amazing Strength" and it showcases photos of 39 Team Phoenix sisters. (I happen to be one of the 39.) Wendy is so gifted and the exhibit is so moving. It's only there for a week (until March 17), so I encourage you to visit it in Delafield. Information (and digital images of some of the photos) is on Wendy's website: www.WendyAndrewsPhotography.com under the "Team Phoenix" link. One of the quotes written on the paper hiding the photos until the big reveal was "Cancer is life-changing in a BAD way. Team Phoenix is life-changing in a GOOD way." And that's so true. I can do this--whatever I decide.
p.s. in the photo above, I'm raising my "problem" arm high in the air. I credit cancer physical therapist Dr. Leslie Waltke for giving me the range of motion!
