How do I tell my friends and family I have breast cancer?A Story is one person's health experience, often with recommendations.
As soon as my doctor told me I had cancer, all I knew is that I wanted it out...
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The two weeks after my lumpectomy were the two longest weeks of my life as I waited for the results. The day I had been dreading arrived. I called the hospital in the morning to find out if cancer was all over my body. “The margins are clean,” Chrissy told me. I had prepared for the worst so I started crying with relief at her response. “You’re sure, right?” I asked, not wanting to get too invested in her answer. “Yes, I’m sure.”
This was incredible news. It meant that the cancer was contained and had not spread to the rest of my body. I felt like the luckiest person alive. “Luck” was now relative but my one wish had come true – I had a second chance at life. My next step would be meeting with an oncologist who would tell me what needed to be done next. Dr. A. referred me to Oncologist #1. She would be able to tell me about my chemotherapy options. Mom and Dad accompanied me to the appointment.
I assumed, walking into her office, that she would have a set plan for me and I could get started. She didn’t. “Well, you have a lot of options. You can do Adriomycin/Cytoxin, Taxol, Taxotere, a combination of them, anywhere from 4-8 treatments…” she recited without the slightest bit of compassion and as if she’d had way too much caffeine. “OK, wait. You need to slow down. I don’t know what any of those things mean,” I said to her. She told me that each one is a different type of chemotherapy. "Anyway, it’s your choice about what you want to do.”My dad wasn’t happy with her answer. He grilled her about facts and figures for each treatment. “I want to know what studies have been done on each of these treatments; I want to know the survival rate for women taking these drugs; I want to know what evidence you have that these drugs will work on younger women." She paused, not having answers to any of his questions. “Unfortunately none of these drugs have been tested on younger women because there have not been enough young women diagnosed to study.”
My dad’s faced visibly reddened. He was becoming furious. “Do you mean to tell me there are no hard facts on any of these drugs for younger women?” he almost screamed. My mom placed her hand on his leg to calm him down. “Yes. That’s what I’m saying. Also, I would like for her to get genetic testing because of her ethnicity.” She was no longer talking to me but to my parents. I felt like I was five years old again when adults talked about me as if I wasn’t there. “Ashkenazi Jews often have the BRCA gene mutation, which is linked to breast and ovarian cancer,” she informed us. I secretly hoped that since I was only half Jewish, I would only have half the gene. I already had the breast cancer half, so hopefully I wouldn’t have the ovarian half. “If in fact she does carry the gene, I would recommend an oopherectomy, removal of her ovaries, so she won’t be at risk for ovarian cancer.” I sat in silence. “Does that mean I would be able to have children?” I asked quietly. “Yes. But ultimately your entire treatment plan is your decision,” she told us frankly.I left the office more scared and confused than I came in. How can she expect me to tell her what treatment I want? She’s the one who has been trained in this, not me!
My parents weren’t happy with her and wanted me to get a second and third opinion. “I can’t get another opinion. That is so offensive and will totally hurt her feelings.” I said. My dad told me I needed to get over hurting people's feelings. "In medicine, second and third opinions are expected,” my dad advised me. I had an unsettled feeling in my stomach – like I was cheating on her, except that this was a life and death decision. Reluctantly I agreed to seek out more opinions.
Later that week I was able to finagle an appointment with Oncologist #2, who was a big name in breast cancer at Sloan Kettering. He seemed surer of himself than Oncologist. #1 and recommended four treatments of Adriomycin/Cytoxin followed by four treatments of Taxol. At the end of our appointment, he recommended I get an oopherectomy and a double mastectomy. I would then avoid having to go through radiation therapy. This was getting worse by the moment. But although I thought he was intelligent, he was also a man. How would he like it if I told him, “You need to have your penis removed even though there might not be anything wrong with it?”My third opinion was scheduled at Beth Israel in Boston, which I again went to with my parents. I had spent the last four days straight with them going to appointments.
Within minutes of arriving in the waiting room, an attractive woman came over to my chair and introduced herself as Oncologist #3. I felt an immediate connection with her. Her warm smile was inviting and personable. My dad insisted on being in the meeting with me and he grilled her as he did with every other doctor. But he soon softened. Her kindness and quiet competence put us all at ease and for the first time since being diagnosed, I thought I might end up OK.
She asked me a little about myself and when I told her I played the violin, she made a little note on her paper then looked up at me. “My recommendation would be four treatments of Adriomycin/Cytoxin without Taxol. Taxol can make your fingers go numb and prickly indefinitely which concerns me since you are a violinist. You’re young, you’re going to be alive for a very long time and I don’t want to put something so important to you in jeopardy.” Then I asked her the dreaded question. “Should I get an oopherectomy as well?” “Asha, you’re young and I think it’s a bit drastic at your age. Ovarian cancer doesn’t usually start showing up until 35 years old or so. We are not going to worry about an oopherectomy until you have children. Then we can take care of the ovaries.” I felt utter relief. My dad announced that we would be doing the treatments in Boston because we liked and trusted her.
She then asked to speak to me alone. My dad looked from her to me and back to her, concerned that he may miss out on some information if he left the room. “Uh, I’d like to stay in…” he started. She quickly interrupted him saying she needed to ask me some personal questions. As soon as he left the room she looked at me with the kindest eyes I’d seen thus far from a doctor. “Asha, what are you thinking?” I teared up a bit, touched that she would care enough to ask me this. The other doctors seemed to want to get me in and out so they could see their next patient. “You are by far my favorite doctor. I totally trust you and I will do any treatment you recommend. But the problem is my whole life is in New York. If I move home to Boston for treatments for the next six months, I will be living at home again and my entire life will revolve around breast cancer.”
My dad was a mess and not handling the situation well. I knew it would not be healthy to be around him because I needed to surround myself with positive energy. If I stayed in New York, I would continue working and have some sort of distraction. She agreed and now I was totally confused as to what to do. “Should I get a double mastectomy? What kind of chemo should I get? I will do anything you tell me to do.”“Asha, from the research I’ve seen with your stage and the type of cancer you have, it is unnecessary to get a mastectomy. As far as treatments, protocols for chemotherapy are well established and you can certainly have it administered in New York as well as Boston.”
I sat for a second and then timidly asked her, “Do you think I’m going to be OK?” She smiled. “Yes, I do. In fact, I think you are going to get through this with flying colors.” She had given me the encouragement I needed and I knew if she believed in me, I would somehow get through this. She is my family’s living angel and I will be forever indebted to her.
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