Friday, July 11, 2014

The Cancer Isn’t Always Greener on the Other Side

After the meeting with the breast surgeon. I was feeling depleted. I never researched about women who present with metastatic breast cancer having a bi-lateral mastectomy. I guess naïve me just assumed that’s how the journey went. A vast majority of women with breast cancer receive some type of surgery, even ones who have a complete response to chemotherapy will have mastectomies. I didn’t have any reason to assume I was different. Until that meeting.

I don’t think the breast surgeon took in to account my mental well-being. I never was asked what I want. She saw studies, she saw numbers, but I don’t know that she saw me. She told me how she thought I would feel, not knowing that it wasn’t really my outlook. I had my mind made up since my diagnosis that this would happen. I never questioned it. Any time I had asked my oncologist about having the mastectomy, he never led me to believe otherwise. If I had been told at the beginning how controversial the surgery was, and that it just wasn’t for me, I would have never been so dead set on having it done. My oncologist told me once that he felt that I would have a better overall outcome as a result of having the surgery so I had set it as a goal. If I reached that goal, it meant I was essentially doing better. There was this obvious tension between my two doctors. They didn’t agree, and my breast surgeon didn’t try to sugarcoat any of that. She blatantly disliked his opinion and there was no room for compromise. Again, what she wasn’t understanding was that if having my breasts removed meant that I had a miniscule chance of living even a day longer, I was willing to do it. She just didn’t hear it, though. She just didn’t seem to get it.

 She had me sent for two additional tests, a breast MRI and a mammogram. She called me the day after and told me I still had a very small spot (6mm) of cancer in my right breast. The she said “You know, I read your blog”. I wasn’t quite sure what to think of that. Maybe she read of my pleas? Maybe she understood a patient’s perspective better after reading it? That didn’t appear to be the case. I never once heard “I understand where you are coming from. I understand why you want this done.” She only defended her actions, maintained her research and said she called my oncologist about my blog. I suddenly felt violated. As if my Mom had just read my diary and told my Dad on me. I was not pleased.

There is a physical aspect of cancer and a mental aspect of cancer. You can’t be in the profession of dealing with cancer patients and be narrow-minded. There isn’t only black and white. There’s a lot of grey. Emotions play a huge role in the life of a cancer patient. Only 30% of breast cancer patients are metastatic which puts them in to a completely different category than other staged patients. The cancer has already spread and we will die as a result of it, it is just a matter of when. Our lives revolve around trying to stay alive. It’s mental. Most patients that doctors deal with are just looking to get through their diagnosis; do what they have to do to get it over with and move on. We cannot. We will never move on. Cancer is intricately woven in to our daily lives for the rest of whatever time we have left. Do you think that because I already know my cancer has spread that this makes things easier or better for me? That the decisions I make should be effortlessly assured? Absolutely not. In fact, it makes every single choice ten-thousand times tougher. I know the cancer isn’t always greener on the other side. I know that the other side is physical pain and disfigurement. BUT, I would rather have a peace of mind; knowing that a secondary breast cancer will never occur in my breasts. I’ll take the pain over chemo and radiation any day of the week. Being on this side of cancer: the bad side, the “oh shit” side, the inescapably horrendous side of cancer, the side you think of twenty-four hours of every day, unequivocally sucks. Honestly, anything looks better than the emotional tolls that havoc my mind.

The whole saga put me in a pretty deep depression. I felt dismissed. I felt isolated. I felt alone. It was taking a toll on my family, too. One night my five year old cried the whole night over anything and everything. She begged me to not put her to bed, she wanted to sleep with me. When I told her no, she cried hysterically. I finally asked her why she was so upset about this and that’s when my heart broke in two.

“I never got to see you when I was in school. Now I’m outta school and you’re always at the doctor because of your cancer!”

I just want to live longer. This girl, she can’t live without me. She needs me. All my kids do. My son, he needs me to be there. They need my guidance, they need my discipline and most importantly, they need my love. If I have to trade in my breasts to do that . . . then so be it.




I met with my Oncologist last Thursday and reported that my liver and bone mets are still stable. That’s about all I can ask for: stability. I expressed my concerns over the consultation with the breast surgeon and I told him “I am not trying to be cured, I am just trying to live as long as I can”. To which he replied, “Well, I am trying to cure you, and if you want to have surgery, then why not?” He never has me convinced of what he knows and that is that there really isn’t any upstanding evidence to prove that a bi-lateral mastectomy on a metastatic patient will “make things worse” or not do anything at all. That fact remains that no one, no doctor in the universe, knows if the surgery will improve my overall prognosis because there isn’t enough supported research studies. He agreed that if I am at a higher risk of having a secondary breast cancer, then my breasts need removed. I finally heard “I understand where you and coming from. I understand why you want this done.” A giant sigh of relief hit me and a smile swept over my face.

The consensus is this: If this breast surgeon doesn’t want to do this surgery, then we search for one until we find one that will. Simple as that.

8 comments:

  1. I am so sorry you were dismissed by this breast surgeon. Any time a patient is essentially removed from the decision making process in a paternalistic fashion, it makes my blood boil. Seems to me an intelligent conversation with both doctors input - during the same conversation - should have taken place. The art of medicine and the science of medicine. Both matter and nothing matters more than YOU, making an informed decision based upon the evidence provided by your doctors in ways that make sense and in ways that you can understand. Ultimately, we are the only ones who can place weight on those intangibles that you so beautifully shared. I support you.

    AnneMarie

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  2. I too had a bilateral mastectomy. My surgeon told me I didn't have to. The 2nd surgeon I went to, for a 2nd opinion said I didn't have to. My oncologist said I didn't have to. But, like you, I felt that for me, it was a necessary decision so I went ahead and had the 2nd breast removed. After surgery my surgeon said the biopsy showed irregularities in the "non" cancerous breast, so I'm 100% sure I did the right thing. I understand you and where you're coming from and I support your decision, YOU'RE the one who has to live with it.

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  3. My thoughts and prayers are with you. I made the choice of having a bilateral mastectomy because ultimately in my heart (and mind) it was the best thing to do for me and my family -- regardless of some surgeons' opinions telling me otherwise.

    You are courageous and strong and an inspiring voice of truth on the front lines.

    Nicole

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  4. That surgeon might have had a point, but her method of approaching it was entirely wrong. I was initially given the option of a mastectomy and it was later taken off the table, as neither my oncologist nor my surgeon agreed it would be an ideal step at that point in time. (That's not ruling it out for later, but there's no sign of anything in my healthy breast, and the tumor in my left breast has disappeared with chemo. It wouldn't get rid of the rest of the cancer in my system, so a surgery has been put in the 'let's cross that bridge if we come to it' category)

    If you and your oncologist feel that this might be the right choice for you, then by all means, forge on ahead and look for a surgeon who's capable of empathy. It's not her refusal that's bothering me as much as her lack of empathy.

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  5. blog hopping and I landed here, I enjoyed this post, I do not have cancer but recently had a condescending doctor experience and found another after telling her I didn't think her office was a good fit for my family
    you are doing the right thing
    what is best for you!

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