Our recent SteveFlix (Netflix only better!) binge has been Breaking Bad. Damn, what a fantastic show. It speaks to my inner chemistry nerd (don't forget, I'm the girl who does stoichiometry for fun), and it's just damn good. Bryan Cranston- love him!
In season 2, Walt has a PET/CT scan to determine if the treatments are working, or if the lung cancer metastasized. He gets a glimpse of his scan and sees a giant mass in his right lung. Convinced he has weeks, at most, to live, he spends every waking moment cooking enough meth so his family will be financially stable once he's gone.
Fast-forward to he and his family getting the results at the oncologist, they are told that not only is the treatment working, but also he's in remission. The mass he saw was inflammation, an effect from the radiation. His family is overjoyed, and Walt sits there in disbelief, questioning the doctor. Next you see him in the rest room, he's irate and starts beating the hell out of the paper towel holder.
When I received the call from the oncologist (hi Danielle!) that the mass in my breast was not malignant, I was at Olive Garden with Steve, Brie, Pete and PJ. The mass was atypical lobular hyperplasia (ALH), pre-cancer, and I would still need surgery. I yelled out the good news, Brie cheered and cried, Steve and Pete were thrilled, and I think PJ threw his crayons. I smiled and laughed with my family, but the truth is, I was in disbelief and seething inside.
I felt like Walt; I didn't see my films, but the radiology technician told me immediately after my diagnostic mammogram the radiologist categorized it BI-RADS 5, highly suggestive of cancer (I Googled BI-RADS the minute I got in the car after the biopsy and read a score of 5 means a 95% chance of breast cancer. Enter panic attack). Then she left me alone in the waiting room to sit and cry before I was called back for the biopsy. So when it wasn't cancer, part of me was angry, surely they were reading someone else's results. I refrained from heading into the bathroom and going batshit on the paper towel dispenser, but my smiles and cheers were fake. I don't know how to articulate this without sounding like a loony tune, and I certainly hope anyone who's received a breast cancer diagnosis doesn't take offense to this.
It sent a shock through my entire being. I spent those 4 and a half days on an emotional roller coaster waiting for the biopsy results, CONVINCED of the worst. I KNEW that lump was cancer; lumps in the breast are ALWAYS cancer in my family. I researched statistics, options, physicians, I even wrote out lists of the drugs I would receive in chemotherapy. And when I got the news it wasn't, it made my brain explode.
Steve came to Olive Garden straight from work, so we drove separately. That drive home was not full of joyful, happy, beautiful tears, they were angry, banging the steering wheel, feeling so confused, livid and overwhelmed, burning hot OMIGODWHATTHEFUCKISWRONGWITHME tears.
Breast cancer has come after almost every woman in two entire generations on my mother's side. For us, it's a matter of when, not if, a black cancer cloud always looming over our heads. When an oncologist raises her eyebrows when I go over my family history, I take the hint that it's not good.
There are very few things we have control over in life. I chose to marry Steve (dude, what were you thinking?), but I can't control my punching him in the face if he watches another episode of Dr. Who when I'm home (kidding! But that show, ugh, awful!). I had no control over getting sick with lupus, and how it affected our weeks-old marriage. I can't control if I'm going to wake up one morning in kidney failure or unable to walk from a stroke caused by lupus, and I have no power over when my pulmonary valve will start failing from my congenital heart defect and I'll need open-heart surgery.
But, there is one thing I can take control of, and that is a way to GREATLY reduce my risk of ever developing breast cancer.
I've decided to have a preventative double mastectomy with breast implant reconstruction as opposed to having the lumpectomy to remove the ALH in my left breast. Despite my jokes, this is NOT a decision I have taken lightly. I've spent months researching, reading articles, seeking out opinions from highly regarded cancer institutions, undergoing genetic testing, talking with a friend who both she and her sister underwent the same surgery, going on online discussion boards, speaking with friends, family, my husband, etc... I could go on and on.
Being diagnosed with ALH increases my chances of developing an invasive breast cancer in the future, about four times higher than someone without the diagnosis. If it is found before the age of 45, the risk is even higher. Lobular masses usually go undetected by screening mammogram, and the one I had in August 2013 was clear. Had it not been for the breast MRI (the one I almost blew off) ordered by the oncologist so we had a baseline to refer to, who knows when I would have felt the lump?
If I were a healthy 33-year-old woman who had the same diagnosis with the same strong family history, I wouldn't have come to this decision. I would've had the lumpectomy and continued with extensive monitoring. But the thing is, I'm not a healthy 33-year-old woman. I've had 4 open-heart surgeries and now live with severe pulmonary regurgitation. I have lupus and a number of overlapping autoimmune diseases. Besides damage to my heart, lungs, brain, and baby maker, there's no true way to determine the havoc my lupus treatments are causing, and if and how much they increase my risks for developing specific cancers (many of the medications I take come with an increased risk for Lymphoma).
Despite all of the above, I'm actually in the best place health wise that I've been in in almost 3 years. I can thank McDicky for that. My reasoning for going ahead with this surgery now is exactly that; that I am in this stable place at the moment where all my specialists feel the surgery would be well-tolerated. Why wait until my heart and other organs affected by lupus have suffered more damage? Why roll the dice and see how breast cancer treatments are after I've endured another 3-year-flare?
Tamoxifen is an anti-steroidal, anti-estrogen drug that was given to women after they received breast cancer treatments (chemotherapy, surgery and radiation) to prevent the disease from coming back. April of 1992 began the Breast Cancer Prevention Trial (BCPT), a study to determine if Tamoxifen could prevent breast cancer in women who were considered high risk, but had not yet developed the disease. My mother not only took part, but also was the Philadelphia spokesperson during her years in the trial (she's a MUCH better public speaker than me!). By 1997, of the 13,000 enrolled in the study, data showed treatment with Tamoxifen to have a 49% reduction of the development of invasive breast cancers across all age groups. Extremely significant. The final reports were released in 2005, and it was concluded that the overall benefits outweigh the overall risks.
I know what you're thinking; why don't I just take this miracle pill instead of lobbing off my breasts? What's another pill to add to my collection? If only it were as simple as the oncologist writing a prescription. Is it ever that simple? Due to my lupus and specific antibodies that come along with it, I'm at an extremely high risk for developing blood clots and having a stroke, and because of this I can't take birth control, any type of hormone therapy, or anti-estrogen medication such as Tamoxifen.
In the past, having SLE was an immediate contraindication for receiving radiation as cancer treatment because of complications that may arise. Those with lupus and other connective tissue diseases, specifically scleroderma, are at an increased risk of developing severe scaring and a late complication of subcutaneous tissue fibrosis in the exposed area. There is also evidence that the radiation can cause elevated SLE activity and lead to severe flares.
Today, there are conflicting reports if radiation therapy causes more harm than good in lupus patients. As with any disease that isn't one size fits all, some studies indicate no issues in those with lupus after receiving radiation for a cancer diagnosis, while others experienced severe flares despite being treated with a reduced dose of radiation therapy. Each patient and his or her medical team need to weigh the risks vs. benefits.
When I initially thought about undergoing a mastectomy, one of the first things I did was sit down with McDicky. I wanted to voice my thoughts and concerns, discuss my family history of breast cancer, and I needed his opinion. In my research, I found a number of articles (reputable? who knows) stating a cause-effect relationship between silicone breast implants and lupus. I figured why waste the breast surgeon's time if McDicky was going to say absolutely not?
I won't go into specifics, but McDicky had choice words regarding the supposed negative correlation between breast implants and lupus, assured me it was absolutely safe for lupus patients to get implants, and there is no scientific evidence of this so-called cause-effect relationship. He felt in my particular case, he wouldn't want me to undergo radiation therapy because of the risk of inducing a significant, organ-damaging flare. *Note- for those with mild SLE or who haven't had major organ involvement, the benefit of radiation therapy as cancer treatment could outweigh the risks. Again, everyone is different.*
He wrote a letter to the breast surgeon clearing me for surgery with specific instructions regarding my immunosuppressive medications and stress doses of steroids he expected me to receive in the operating room and 24 hours post-operatively.
Next up was seeing my cardiologist, and I wasn't sure how this would go. A mastectomy with breast implant reconstruction is typically a 6-7 hour surgery, which is a long time to be under general anesthesia for anyone, let alone someone with a heart defect.
Once again I laid it all on the table, the diagnosis (ALH), my family history, that I'm unable to take Tamoxifen or other anti-estrogen preventative medications, and the recent revelation that McDicky wouldn't want me to undergo radiation therapy in the event of a true cancer diagnosis.
I voiced my concerns from a cardiovascular standpoint; many chemotherapy drugs can cause cardio toxicity, and being that I already have cardiac issues (tetralogy of Fallot from birth and aortic regurgitation caused by lupus) if that made me more prone to developing cardio toxicities. Of course, there is no relevant data of CHDers who have gone on to develop cancer in their adult life, so she planned on speaking with the cardiac oncology specialist and would get back to me.
We both asked each other questions, and gave answers to the best of our ability. I guess my point was to go ahead and do this NOW, while my heart is in good shape to handle a 6 hour surgery, and not have to endure any treatments that could be potentially detrimental to my cardiac health. Before she gave me a straight answer, she wanted to speak with the cardiac oncologist, and I had to get an exercise stress test.
After speaking with the oncologist, the cardiologist called and informed me again, there is no true data out there because it hasn't been researched. The oncologist said that having CHD and cardiac issues from lupus doesn't make the risk of cardio toxicity any higher, but if I were to go on and develop it, it would hit me a lot harder and cause much more damage. Just how much harder, no ones truly knows. I had an A-OK stress test, and a detailed letter clearing me for surgery arrived from my cardiac team.
And finally, I had one more appointment with the doctor who played the most integral role, the oncology breast surgeon who I saw two weeks ago. I decided before I went in that if she didn't agree that going ahead with this was more beneficial than risky, I would have the lumpectomy and revisit things if any new masses popped up in the next few years. I trust her opinion, and bouncing around between hospitals trying to find a surgeon who would do the surgery seemed rather daunting.
I was a nervous wreck, wondering if she was going to tell me I was absolutely crazy for even considering this. Hey, it wouldn't be the first time someone told me I was absolutely crazy. And when she came in, I went into my usual I'm-nervous-so-I'm-going-to-spew-out-a-ton-of-verbal-diarrhea.
32 and I already have pre-cancer... shouldn't get radiation... can't take Tamoxifen... my heart... what would chemo do to my heart... not trying to be Angelina Jolie... genetic testing… strong family history... lupus... steroids... methotrexate... implants are ok... go big or go home... sorry, I'm nervous, ignore me.
When I finally looked up, I met her eyes and she said she agreed I was making the right decision.
It is exceptionally validating when someone you trust implicitly agrees with you. In the past two years, I lost my hair, I lost my looks, and less than a year ago I lost the ability to carry a pregnancy. It took me months to come to this decision, to being ok with letting go of another part of my femininity in order to have some semblance of control over my health.
I know nothing is ever 100%, and some people reading may not agree with my decision. There's obviously no way to predict if I would ever develop breast cancer, and if the treatments would cause more harm than good. But, why take the risk if I can do something about it, and I have the blessing from the people whose opinions actually matter to me?
In my lifetime I've already heard the words "you have a complex congenital heart defect," "you have lupus," "you have cervical cancer," "you have bechet's disease," and quite a few other diagnoses along the way. I've been through more medically in 33 years than most 90-year-olds. I'm tired of hearing I have all these unwanted things. When am I going to hear that Charlie Hunnam stumbled on my blog and now wants my hand in marriage?
I can get this one thing off my chest (ok, TWO things as the case may be!), and I know it's risky, drastic, aggressive, scary, life-changing, painful, and will be at least a 4 month process (it's actually 2 separate surgeries), but it me gives the security in knowing there is at least a 90% chance of never having to hear those words, "Marla, you have breast cancer." Those are the words that have plagued my family since my grandmother got her diagnosis at age 45 and succumbed to the disease at 46, leaving my mom at age 9 and Aunt Anna at age 14 to grow up without their mother. Unfortunately, it didn't stop with my grandmother, and appears to not be slowing down in my generation.
This has been a long, drawn out, wordy post, and I tried to keep it on a serious note, rather than my usual f-bombing, douche lording self. I don't need to explain anything to anyone, but I guess I want to reiterate that this was NOT an easy decision; I assure you I didn't wake up one morning, "I think I'm gonna cut off my tits!" I did my research, I went through all the appropriate channels, I spoke to my therapist, I sought out many opinions, hell, I'm still trying to find as much relevant data as I can.
I remember the chart with pink plastic rope with instructions and pictures of how to do a breast self-exam hanging from our shower head growing up. My mom never hid how the disease has terrorized our family, and I've been giving myself breast exams before I had anything to put in a training bra. Even though I started having mammograms at age 30, I never thought this would be a decision I'd ever be making at age 33.
No, I haven't been bit by the Angelina Jolie bug and I'm not suffering from The Angelina Effect (Although, does that make Steve Brad Pitt? Princess Matzo Ball must be Zaharra and Linky Cat little Knox! Ahem…) I'm not sure going forward with this makes me a hero, or brave, but no doubt a move to allow me to hopefully stick around in this world for a bit longer. To cause a ruckus. To MAKE A DIFFERENCE.
Sorry, I can't help myself.
I have big plans, you know.
This is the decision I've made and, insurance approval pending, the surgery will be happening in the next several weeks. Whether you agree with me or not, please respect my decision and support me along the way.
Love you all <3 <3
Linking up with Kathy, Shanna