deconstructing reconstruction… what a hot mess

Big holla back to the creators and supporters of the pink ribbon movement. I work in public relations, so I geek out when something so simple raises international awareness. At the same time, as a cancer survivor, a woman and someone who’s spent her entire career in the healthcare/pharmaceutical industry (including breast cancer causes), I can’t help but feel shocked, and sort of naive, to learn how COMPLICATED having a double mastectomy is. Angelina Jolie failed to mention that part in her NY Times stories.

Encouraging women to be strong, run out and chop their tits off is empowering and brave, but it only scratches the surface… it does nothing to prepare women for what that entails. When you learn how crazy reconstruction is, the mastectomy almost seems like the easy part. Further, the success of your reconstruction depends a great deal on the talent of the breast surgeon doing the mastectomy. A plastic surgeon does the reconstruction. You literally have to find a dream team.

You’d have to be cold, dead and empty inside NOT to admire women who’ve faced this emotional, personal and terrifying decision, but now that I know what that decision-making process really looks like, my perspective has sky-rocketed even further. I’m going to tell you why.

I’ll start by saying, once again, I’m grateful my diagnosis is DCIS and not something more progressed requiring additional treatment. This diagnosis has given me the gift of CHOICES. Breast cancer patients, particularly those with zero body fat or who need chemo and radiation, have more limited choices. But, choices are a double-edged sword. All of them are hardcore, long procedures and in my opinion, none of them are great… likely the reason some women opt to forgo reconstruction altogether. “Great” would be never having to lose your own breasts. I’ve been blessed with a pretty awesome pair of large, natural boobs. They’re so nice, they’re a conversation piece, and have been for decades… HILARIOUS conversations, obviously. My friends and family will 100 percent attest to this. Go figure I have to lose them, but I won’t digress further. In short, I will (already am) mourn the loss of my boobs and my doctor has big shoes (boobs?) to fill.

boobs
My best friend and old roommate Seana made these shirts for our other BF/roommate Jen when she was battling Stage 3 invasive breast cancer… being put to good use again (July 6, 2015)

I’m lucky I’m a candidate for a nipple and skin sparing mastectomy. This is important to me. I’ve met other women who didn’t have that luxury, or who didn’t care about that luxury. Call me crazy, but I’d like to keep what’s mine, if it’s safe to. I’ve had plenty of procedures that have left me with scars all over my body. Sure, scars are cool… they’re about as cool as having cancer. I think if most had the option to NOT have a huge scar on their body, or not have a part of it amputated, they’d take it.

Once I was diagnosed and started telling close friends, I was immediately connected with women who’ve had reconstruction. They told me about their experiences. They lifted their shirts for me and let me feel their boobs. Some of them had reconstructed or tattooed nipples and they looked amazing. The doctor can use skin from your thigh to create a nipple, and I think there are about FIVE people in the entire US who tattoo nipples well. Women travel hundreds, even thousands of miles to have it done. That’s a lot of work, and we haven’t even gotten to the actual boob yet…

The treatment you are having, or in my case, HAD, also impacts your decision. Radiation damages the skin and how your reconstruction heals. You can develop complications, infections, capsular contracture (scarring) and that can cause implants to look and feel like two tin cans in your chest. Those 14 days of radiation that caused my breast cancer could potentially impact how I heal from the mastectomy and reconstruction. I don’t know what Angelina Jolie or Christina Applegate chose, but for me and many others, it’s not at all as simple as removing my breasts and throwing in some implants, because if your skin is unhealthy, your body can reject the foreign object. You have to use body tissue to reconstruct completely, or to surround implants to protect them… and this is where things get interesting.

I took the entire month of July off from work to research reconstruction and met with several plastic surgeons, and I’m glad I did. The science behind reconstruction is FASCINATING.

I decided I want to look as close to “me” as possible. There are more options out there, but given my history of radiation, I was recommended the following options to be conducted IMMEDIATELY FOLLOWING my mastectomy:

  • DIEP Flap — This approach uses lower abdominal fat tissue, no muscle, to reconstruct your breasts. The doctor must perform micro-surgery to remove the arteries in the groin area which feed the fat tissue. Then, the arteries are reconnected back into the chest, so that they can continue to supply fresh blood to the fat tissue that is being used to reconstruct. AMAZING. The result is a very natural look and feel, lower risk of infection, and a “free” tummy tuck (yes, there are a few silver linings to having breast cancer). The cons: 8-10 hours (or more) of total surgery. Hugely invasive and highly complex (your doctor must be a PRO and the hospital staff must have an infrastructure to manage your recovery, not everyone DOES this). At least 8 weeks recovery with lots of drains. If you’ve never had children, you must consider that if you do in the future, your skin is now already stretched significantly. You need to have enough fat tissue for DIEP to even be an option. Depending on where your arteries are in your groin/belly, they may need to take some muscle, which means they replace it with mesh and you now have a risk for future hernias. And, you need physical therapy afterward.
  • Latissimus Dorsi Flap — This approach uses your back muscles to either reconstruct completely or wrap around an implant to protect it. In a nutshell, the surgeon cuts through your back muscle and wraps it around the front to your chest, along with any back fat you might have. I’m told this is the way to preserve the size and most natural feel. The cons: also an 8-10+ hour total surgery with lots of drains, intense physical therapy and what I have to imagine, and have been told by other patients, is a permanent impact on your future mobility (the back muscle used is what you use to twist your body). The result may look good, and I’m sure may patients do very well, but I have not spoken with any who have said they feel as mobile as they once did, even five years later. They DID say they spent two years sleeping like a mummy and unable to go to the gym — TWO YEARS.

So… WTF do you choose? I obviously said, give me a tummy tuck stat. Here’s the funniest part… my plastic surgeon discouraged me from the DIEP, because — get ready for it — I’M NOT FAT ENOUGH. I’m carrying around an extra person these days, thanks to my thryoid having been removed, but I don’t have enough fat tissue in my belly to construct breasts at my current size, which also means the likelihood of being able to save my skin and nipples would be low. They cannot take fat from multiple areas and no, they do not take donors  (everyone I know has asked, you know you are thinking it…).

My doctor strongly encouraged the LAT flap… and my heart kind of sank. I booked my surgery date, but with reluctance.

To give some context, I met with my plastic surgeon for the first time on June 5, still in shock that I even have to go through this. He was the first plastic I’d met with. I was in his office for FOUR HOURS. I walked out with Peg (my mom), she looked at me with excitement and said, “Isn’t he great?” I looked at her and burst into tears. Holy overwhelming situation, batman. What do I do now?

crying
after work on June 16, still trying to wrap my brain around this and battling major anxiety.

I decided then and there, I would not be convinced until I’d spoken with as many GOOD plastics as possible, and I started doing my research. I had plenty of recommendations from colleagues and friends, and I got to work researching who the top docs performing the DIEP and LAT flaps were, NOT plastics who primarily do cosmetic breast augmentation. I checked to see who had been featured in credible medical journals, credible news sources (US News & World Report, TIME, NY Magazine, and medical magazines). I stayed OFF of the Internet and didn’t troll random sites. I spoke with patients. Everyone — patients and doctors — had a different story, a different perspective and a different recommendation. This was helpful, it gave me ammunition and new questions to ask MY plastic, but it didn’t help me make my decision. And I was STRESSED.

I went back to my plastic on July 7, a full month later. I told him I was unconvinced the LAT flap was the right decision for me, that the thought of a permanent impact on my mobility was terrifying and begged him to prove to me why I should reconsider. He admitted, he couldn’t convince me… he understood my concerns… and gave me a third option… just go straight to implant… a whole month later… WHAAAA?

Then my interrogation started: What about his concern about my radiated skin? What about the implants hardening? Why was I only hearing this now? His answers were simple and made sense: “Mary, you have the BEST breast surgeon out there. I would not be recommending this if you were having your mastectomy by any other surgeon, I’d be telling you the LAT is your best option. I’m confident your breast surgeon, Dr. B, will make sure the skin envelope is pristinely managed so that you don’t reject a foreign object. You haven’t had radiation for weeks and weeks like other breast cancer patients, whose skin LOOKS radiated, burned, scarred and thin. Yours was only 14 days, 17 years ago… you will be fine and I’m confident this is the best option.”

And, I was skeptical, but believed him…

A week later I saw a brilliant plastic at NYU for an opinion, someone a good friend recommended (she’d done her breast reduction). She asked me what I’d been recommended. She IMMEDIATELY told me, straight to implant is what she’d do, and why the DIEP and LAT procedures were not optimal, for ME. Her reasons validated everything I’d felt, and had been told by my plastic. She ALSO said, there was only ONE breast surgeon in all of NYU that she’d recommend do the mastectomy, to ensure the least risk of complications. She also said she’d treated many patients just like me, who’d gotten breast cancer as a result of chest radiation due to Hodgkin’s Disease, and they’d done very well. She also said she knew and had studied with my plastic surgeon. And all of a sudden, I had peace of mind.

So that’s the decision that took an entire month to make: bilateral mastectomy and at the same time, my plastic will insert tissue expanders under my pec muscles. I will wake up with smaller “boobs” and go home with about four drains. I go back and forth to the doctor for the next 6-8 weeks and during that time, they inflate the expanders to the size I want to be. In about 3 months, I go back in for a quick in/out surgery where the plastic goes back in through the same incision, removes the expanders, and any scar tissue, and inserts the implants, which are wrapped in Alloderm (cadaver skin) to protect them from rejection. Yikes. This is happening.

The lesson from this long ass post: if you have a complicated and serious medical condition to deal with, DO YOUR RESEARCH. Don’t settle for a decision your gut tells you isn’t 100%. Ask questions, poke holes, and demand to know “what if.” When it comes to getting second opinions, do what you have to in order to get the appointments, LIE if you have to. I cannot tell you how many doctors would NOT see me because I’d already scheduled a surgery. Memorial Sloan Kettering would not return my calls. In fact, the admins I spoke with asked ME to call back daily, because they don’t meet patients for second opinions… “they don’t have time for that.” I’m sorry, but I didn’t realize meeting with a doctor at such a prestigious institution in NYC when you have breast cancer was the same as trying to get a resi at Del Posto for dinner. Shocking, but then again, everything happens for a reason.

Again, a lot to absorb. My surgery is Aug. 6. I’m mentally preparing (slowly starting to freak out). I’ll post once more before I go in. Much love.

cropped-marys-got-this.jpg

so, I have cancer… again.

A lot of big things happened for me in June, but the most significant was ironic… June marked my 17th year in remission for Hodgkin’s Disease. This past June I received my second cancer diagnosis: ductal carcinoma in situ (DCIS) in my left breast. Stage 0, non-life threatening and non-invasive breast cancer, found because I’ve had mammograms/MRIs annually since age 24. To prevent recurrence, I will have a bilateral mastectomy on August 6. Reconstruction will begin at the same time.
Holy shit. Buckle up.
buckle up
driving to the Jersey Shore at 8 a.m. on May 23, 2015… still blissfully unaware I even have breast cancer.
Like I was told so many years ago, my breast surgeon said, “You are lucky. Your cancer was caught early. You will be cured. But, your road ahead will be tough.” Dealing with chemo and radiation in high school WAS tough. I’m relieved I don’t need it again , but a bilateral mastectomy with reconstruction starting in August is a whole different kind of tough.
I’m aware that not everyone knows my story from the beginning, and that has everything to do with the present, so like any story, I’ll start from the beginning… get a beverage of your choice, this post will be the longest one.
I have no family history of cancer. I was diagnosed just days before my 16th birthday with stage 1A Hodgkin’s Disease. I’ll never forget the moment the oncologist said, you have Hodgkin’s Disease, and the sound of my mother’s breathing as we processed that… I had no idea what the doctor was talking about, I had no idea he was even an oncologist, until I heard the words “chemotherapy and radiation.” Then I understood everything. And I was mad. I was so mad. The doctor was talking, but I heard nothing. Then he looked me in the eye and said, “This is going to be a tough 6 months, but after it’s over, you’re going to be cured.” And I thought, well, my sweet 16 is in two days. At least I can party like a rockstar, in a beautiful dress, with my closest friends and family, before all of my hair falls out and I spend the next several months barfing. The thoughts of a teenager…
After one surgery, a bone marrow biopsy, dozens of scans, 3 cycles of chemo, 14 days of radiation and one last surgery to remove my mediport, I WAS cured, for all intents and purposes… but by no means was I done with cancer.
Those 6 months WERE tough. Chemotherapy is disgusting, and not just because you feel nauseous and lose your hair. You lose your taste buds. You’re on a ton of daily medications to prevent infections. You’re given steroids which bloat you and keep you up all night. Your face becomes round and your eyes get dark. You are tired. You have to give yourself daily shots to boost your white blood cells to fight infections. Those shots make your joints weak and your knees give out (your bone marrow is tired from overproducing). Chemo stops your hormones, so my body went into early menopause and I had hot flashes day and night. You can’t be around germy things. If you develop a fever of 100, you have to go to the hospital. Luckily I was never admitted, I came close once.
I was optimistic through the entire experience. I was being treated in the pediatric ward at LIJ, surrounded by children and babies who were much sicker than I was. Some would never leave the hospital. Some would never reach their 16th birthdays. I had so much to be grateful for, and still do. I would be cured. And I never forgot that. Over the years, people have told me how strong I am. My response is, how can you be anything less when you see children, who only know the inside of a hospital and still manage to laugh, smile, play, hug their parents, share their toys and be brave through all the needles, and overnights, and pain. You learn to be strong right away.
I saw the bright side of chemo. No hormones means no monthly period. FLAWLESS skin on what used to be a broken out adolescent face. No hair anywhere, I loved not having to shave my legs. And a shrinking tumor with each cycle. My treatments were working. They were also creating long-term risks I would have to stay on top of for the rest of my life.
  • Hypothyroidism and potentially thyroid cancer
  • Cardiovascular problems
  • Susceptibility to bad sunburns
  • Bone density issues
  • And breast cancer… a 20-30% increased risk
All because of those 14 days of radiation.
In the last 17 years I’ve had countless chest x-rays, blood tests, cat scans, pet scans, gallium scans, EKGs, echo cardiograms, stress tests, ultrasounds and mammograms/breast MRIs. I’ve had more health scares than I can count. I’ve spent thousands of hours convincing health insurance companies to cover these tests, as if they’re elective. I’ve spent even more time navigating what it’s like to be treated as an adult, no longer a pediatric patient. I learned that sadly, most healthcare administrators don’t care enough to go beyond their most basic duties. Medical records gets lost, messages get lost, doctors forget to call you back, they forget to remind you to come for your annuals. You fall through the cracks of our unfortunate healthcare system, as if you have time to make sure healthcare professionals are doing their jobs. You have to be your own advocate, you have to raise your voice, you have to be assertive, direct and sometimes rude. Thank goodness LIJ enrolled me in their survivorship program once my 10-year remission visit was completed. They handed me a roadmap to ensure I stay healthy and this has been invaluable. They still keep in touch.
In 2009 I had a private reading with a medium who pointed to the spot on my left breast where the DCIS was just found. She told me, there’s a lump there. I told her I’d just had my mammo/MRI and all was clean. She said, if you don’t have it now, you will. It’s going to be fine, cancer isn’t taking you down, just be prepared.
In 2011 an ultrasound of my thyroid showed a tiny nodule that my endocrinologist insisted on biopsying, given my history. This came back atypical and without question, the recommendation was to remove the entire thyroid. It was already barely functioning and if there was one nodule, there would be more in my future. First broken body part removed…
In 2012 when I went for my mammo/MRI, the radiologist said he wanted to do a quick ultrasound. I couldn’t believe my ears, even though the medium had prepared me years prior. They focused on the spot in my left breast where she had pointed to, but said nothing to me. When I started asking questions about how big it was, the radiologist looked at me, shocked, and asked if I felt anything, did I have any pain. I just said no, you wouldn’t believe me if I told you. He said, I can only describe what I we see as a cluster of cells. We’re not sure what it is, you are young, your breast tissue is dense. It’s something we should monitor, come back in 6 months. After two more MRIs, and no more changes, I was told to resume my annuals.
This past March I had my mammo/MRI. About a week later I received a notice from my post office that someone (recipient not disclosed) was trying to send me a certified letter… could have been from anyone. I work M-F, 9-5 and am never home to accept a certified letter. Those are also the post office’s hours. When would I ever be able to get this letter? And why should I make it a priority? I had no urgency to do so since I didn’t know who was sending it. I never received one phone call from a doctor, why would I have any reason to believe it was from mine?
Almost a month later, on a Saturday before a business trip to Las Vegas, I made it to the post office before noon. I was handed one envelope, with two letters in it. The first read, your mammo came back fine, please come back next year. The second letter read, your MRI was abnormal, please follow up with your doctor ASAP. HUH? Did the person stuffing the envelopes even read them? Did the person typing the generic shitty template put two and two together? DID ANYONE TRY TO CALL ME? The next business day, from my hotel in Vegas, I spent several hours trying to connect the dots. What were my next steps? What does “abnormal” mean? Why hadn’t the radiologist just done an ultrasound like he had in the past on the same day I’d had my MRI? I spoke with the OBGYN who had ordered the MRI, and the radiologist office who performed it. Nobody could give me a straight answer, nobody would take responsibility for never having called me, nobody could tell me how I’d fallen so far through their cracks, but after two hours, they finally confirmed, you actually don’t just need an ultrasound, you need a biopsy. The cells grew.
Then, shit got pretty gangster. People started doing their jobs really quickly. Or so I thought.
classy woman little hood
I had an MRI-guided biopsy on May 1. A few days later, my (incompetent) OBGYN called with the results. She was a day early, so I knew it wasn’t good news. In her bubbly, amateur voice, she said, “I have GREAT news and some not so great news. The GREAT news is, you don’t have breast cancer, so that should be a relief… BUT, you have atypical cells, so you really should follow up with a breast specialist, I can recommend someone in the area for you.”
No thanks doc, I’ve got this.
I called my mom. I made an appointment with a breast surgeon on Long Island to appease her, and another closer to where I live upstate. In my mind, I trusted what the medium had said. This was not the end of the world, I was going to be just fine, but what I had to deal with was just an inconvenience. I had already decided to have a lumpectomy. I didn’t want atypical cells turning into something worse.
My appointment with the LI breast surgeon, Dr. B, was June 1. Weeks prior I had requested to have my medical records sent to her in advance, and the radiologist’s office sent them to the wrong office. More frustration, more waiting… I finally went into the exam room and Dr. B asked what brought me to her. I told her a biopsy had shown atypical cells. After a few minutes, she asked me to dress and meet her in her office where we could talk. In there, she told me, “I don’t know who told you you have atypia, that was wrong information. This is more serious. You have DCIS, it is early stage breast cancer that requires treatment, and there are a few options we need to discuss…”
And all of a sudden, I was right back in that moment. I heard my mom’s breathing. She grabbed my hand. I completely lost my shit. Except this time, I heard every word the doctor said, because when you’ve been where I’ve been, and know what I know about the healthcare system, you pay attention.
A lumpectomy was an option, but only if followed by radiation, which is what landed me here in the first place. Another alternative was to follow a lumpectomy with 5-10 years of tamoxifen, a good drug, but one that would mean no children (you cannot be pregnant on tamoxifen). At 33-years-old, that is not an option for me.
Bilateral mastectomy it is. I don’t want to worry about breast cancer ever again.
This is just the tip of the iceburg. There is much more to tell, but this was a lot… process it. I’ve learned a lot of lessons, some of which you may have picked up from this first post, but more that I will share as this ride continues. When all else fails, you know what? You just gotta be tough. #BOOM
bad ass