I had a bad day today (more like yesterday, as I’m writing this entry super late). I met with a plastic surgeon at Virginia Mason, Dr. Keith Paige, to discuss my reconstruction options post-lumpectomy. Before I get to what Dr. Paige shared with me today, I need to explain the back story of my recent conversations with my gynecologist, Dr. Alan Rothblatt (who found Karla); a Senior Genetic Counselor at Myriad, the company who did my genetic testing; another geneticist; and Dr. Pinder.
I don’t think I mentioned this before, but I was deeply moved by engaging with Winda’s mom, Suzi, while she prepapred for her mastectomy last month. She was diagnosed after me, but her situation required a much different treatment plan, hence why her surgery was scheduled so quickly. Suzi is amazing — she did a ton of research, came to every meeting with a doctor fully prepared with an exhaustive list of questions, and made sure she was fully aware of all her options regarding treatment and reconstruction. Watching her made me realize that I really needed to talk to a geneticist at Myriad and do more research of my own so that I can the make the best-informed decision about my surgery.
I talked to Eric Rosenthal, a Senior Genetic Counselor at Myriad, who my friend Colin hooked me up with (Colin has a good friend from grad school at Myriad). Eric was extremely helpful in giving me more information about my inconclusive genetic test result. In the end, he said that there is not enough information to give much weight to my test result, even with my family history.
Eric suggested Myriad test my Dad to see if he is the source of the genetic variant identified by my testing. Because of my inconclusive result, this testing will be at no cost to me or my Dad. Although it’s not conclusive information, if my Dad (whose side of the family does not have a history of breast/ovarian cancer) gave me this genetic variant, then I can weigh that information against the troubling cancer history on my Mom’s side. It would put my mind at ease a bit (at least with regard to my genetic test result) that the variant is not connected to my family history on my Mom’s side. Eric warned me, however, that even if my Dad’s test result indicates I received the genetic variant from my Mom, that information is still not conclusive that the variant is cancer-related. Again, there’s just not enough information right now about this variant to say one way or another.
After discussing my family history with Eric — specifically that my Mom may have had breast cancer first that spread to her lung – he suggested another set of tests for me through Myraid that I did not “qualify” for previously because my Mom’s history had been originally reported to Myriad as lung cancer that spread to her breast. I’m not quite sure what this testing will involve, but Eric said that it will give me a little more information to work with.
In the end, Eric told me that he does not think a bilateral mastectomy based on my genetic test result is an appropriate choice for me at this juncture. He doesn’t think we have enough information to make such a drastic treatment decision.
Almost immediately after I got off the phone with Eric, I received a call from my gynecologist, Dr. Rothblatt, who I met with the previous morning to prepare for my teleconference with Eric. Dr. Rothblatt called me that day to tell me that he ran my stats by a good friend of his, Bob Resta (I think I spelled that right), who also does genetic research in this area. Bob gave me much different advice from a different perspective. According to Bob, I should “treat the pedigree, not the genetic testing.” My Mom’s family history, my early diagnosis, and Karla’s aggressiveness suggest a bilateral mastectomy is the best surgical intervention in my case. Bob suggested that having both breasts removed would allow me to bear children without worrying about recurrence of cancer while pregnant. He also suggested that I have my ovaries out after I’m done with childbearing, but before I turn 40.
You can imagine how confused I was after to talking to Eric and then getting Bob’s suggestions from Dr. Rothblatt. Here I was, very comfortable in deciding on a lumpectomy after talking to Eric, when Bob throws a monkey wrench in my plan. And that was the observation I made in that moment — I was not really looking for all available information to make a decision regarding my surgery. Let’s be honest, I was looking for support and justification for a lumpectomy. I’m holding on to the hope that I will look less deformed with just part of my right breast removed and that I will have the ability to breast feed from my left breast when and if I am able to have a child.
Dr. Pinder weighed in on the subject of whether pregnancy would increase my chances of recurrent breast cancer (either Karla returning or a new tumor in my other breast). She already addressed this issue with me once before, but after I shared with her my confusing round of talks with Eric and Dr. Rothblatt, she emphasized again that the studies show that even in women who test positive for either the BRCA 1 or 2 genetic mutations, pregnancy has not been shown to increase the likelihood of recurrent breast cancer. In fact, getting pregnant may actually decrease the likelihood of recurrent breast cancer. Dr. Pinder explained that the studies in this area elucidate that pregnancy, hormonal shifts during pregnancy, and the ultimate effect of pregnancy on estrogen-positive cancers like Karla are a much more complex system than originally thought.
Which brings me today’s discussion with Dr. Paige, which got me down today. I was not prepared for another reality check like the one I received from Bob. Dr. Paige was recommended by several friends of mine who have gone through post-cancer breast reconstructions. He was recently commended by Seattle Metropolitan Magazine as one of the best reconstruction plastic surgeons in Seattle. Clearly, Dr. Paige is qualified and highly regarded. When I met with him today, it became evident that he had reviewed my file in detail, because he immediately expressed confusion as to why I decided to have a lumpectomy done versus a mastectomy. According to Dr. Paige, Karla is/was big, I have a troubling family history on my Mom’s side, and I was diagnosed at a very young age with an aggressive cancer. Given this information, Dr. Paige encouraged me to reconsider having a mastectomy (and went so far as to say that a bilateral mastectomy would be appropriate). I told him that I had gone through the mental exercise of going through each choice (lumpectomy or bilateral mastectomy), envisioning the worst case scenario several years down the line, and then deciding on the outcome I could live with better. While going through that mental exercise, I decided that I could live with dealing with another cancer in the future (post-lumpectomy) better than I could deal with another cancer after removing both breasts. Dr. Paige then said something to me that I had not really registered before — he said that the worst case scenario would be death. Then he commented that a bilateral mastectomy, though not 100% in preventing breast cancer in the future, would greatly reduce the odds of recurrent breast cancer.
When Dr. Paige uttered the word “death,” I felt like I had been slapped in the face — not in a abusive way, but in a slap-to-reality way. I had not really contemplated that death was an option. Seriously. The positive interactions I’ve had with my cancer care team and the overall support I’ve received have kept those kinds of thoughts out of my mind. It was refreshing, eye-opening, and very disturbing to face the reality of death. Cancer kills and I may not be lucky in the future. Hell, screw any future cancer, Karla may prove to be a more formidable opponent than I give her credit.
I had a moment as I walked out of my meeting with Dr. Paige where I felt like giving up. Death take me now, you fucking bastard. I’m tired of fighting and I’m throwing in the towel. Then, as I exited Virginia Mason, the sun came out and warmed up my face. In that moment I remembered why this battle is important. I’m not a fucking quitter. I’m a fighter. And although I may ultimately lose this battle with Karla or one in the future, I can’t go down like this. I’ve worked too hard to survive this process to let my spirits get down now. We can all play the odds game with any given scenario. Perhaps the odds of me dying in a car accident with the way I drive are as good as those of me getting cancer in the future. I just need to decide how much weight to give these statistics given the information I have.
And don’t get me wrong about Dr. Paige. Although my talk with him today got me emotionally and mentally down, our conversation was necessary for me to really confront and understand the implications of the surgical intervention I choose. I’m worried that I’ve been floating on this cloud of denial, assuming a lumpectomy is the best choice, not really processing the value of a mastectomy or bilateral mastectomy. With my surgery date right around the corner, it’s time to stop dicking around and to really confront the reality of my options and the consequences associated with each choice.
I’ll blog more about the reconstruction discussion with Dr. Paige in another entry when my spirits are back up. Yet another set of variables that affect my treatment plan and surgical intervention! Just when I think I’m mentally comfortable with the decisions I’ve come to regarding my treatment, I get another perspective that just throws a monkey wrench into the system. I’m tired and just want to move on to the next step without any more indecision. I’m not sure I’m going to have that luxury, given how complex and confusing my situation is and the changing tide of the information and perspective I get from my doctors.
