Starting Over

Not all doctors are created equal. 

Some doctors are smart. Some doctors have no bedside manner. Some doctors are kind and warm. Some doctors are driven by money. Some doctors use your fear against you.

I have met all of these doctors.

Yesterday I met the doctor that I trust to take care of my body and my future.

Before I was brought back to meet her, we sat in various waiting rooms and I noted that the facility felt a bit like a cancer factory. Patients with all different cancers were siphoned into their respective wings. It’s alarming to see all the different breeds of cancer. There’s the cancer that leaves a young man looking weak and emaciated and reliant on a wheelchair that he cannot move on his own. The kind of cancer that leaves an old woman hunched over in a wheelchair, completely oblivious to her surroundings. Cancers that break your heart. 

Then there’s breast cancer.

After I was diagnosed a co-worker, and survivor, repeated something to me that was said to her when she was diagnosed. “Unfortunately you have cancer, but atleast you have breast cancer”. The point being that breast cancer is more treatable and survivable than all the others. The truth in that statement was quite evident by the women in that waiting room. Unless they were wearing a headscarf, I wouldn’t have known they were patients. 

After a little while, I was finally sitting face to face with the oncologist. Her big, beautiful, warm personality and loving heart melted away any coldness that the facility had imposed. And not only her. Every nurse that I met was loving and warm. I actually had the thought that chemo might not be so miserable if these were the faces that I would see each time.

While Dr. C presents like a warm hug, she’s incredibly smart, proactive, positive, and knowledgeable. Discussing my case with her was the polar opposite of the experience I had with Dr. S. The conversation did not include huge gaping holes that were filled high with doubt. Here is what we learned:

  • We need more tests. Since my Oncotype was 21 (intermediate risk), a test called the Mammoprint will act as the tie breaker. Dr. C is confident that I will come back needing chemo, but now we can be sure.
  • My options for chemo are still 18 weeks of the heavy duty chemo, which I’m still very uncomfortable with, or 6 rounds of TC instead of 4 rounds, as Dr. S offered. One (weak) study showed that one group of patients did better with 6 rounds of TC over the more aggressive treatment. My cancer profile puts me into that group. 
  • Dr. C also ordered more genetic testing. Apparently I was only tested for BRCA and another gene could be responsible for my cancer forming. It’s scary to think that after chemo I might need to go back and have the double mastectomy. 
  • I heard for the first time that not only did I have my 1.5cm tumor, but I also had 3cm of precancerous cells that were removed. Scary. Why did nobody tell me that before? Things like that push me into desperately wanting my boobs gone, but that’s hasty and irrational thinking at this point.
  • I learned that at the end of treatment I will be put into chemical menopause for some period of years to help starve any cancer cells from getting the estrogen they need to grow. Hopefully my body responds well to this treatment and I’m not a miserable, cranky, hot flashing mess.
  • She’s also recommending I get a port.

If my head wasn’t spinning enough, Dr. C warns me that some patients have permanent hair loss from TC, specifically from the Taxotere (T). Lovely. According to her, 2 of her patients out of thousands have had this side effect, so the odds aren’t high. In my research I’ve read that 3-6% of women have this side effect, which is different from the 2 out of thousands, so who really knows. She recommended looking into cold caps. If you don’t know what that is it’s basically a torture device that you put on 30 minutes prior to the start of your chemo drip, during, and then for 3 hours after. The cap is -25° (sometimes colder) and it basically keeps the poison from reaching and killing your hair follicles. 

In my research, some people have had great success with these systems, and others lose most of their hair anyway. These caps are a pain in the ass, not to mention painfully cold. You must have a “helper” swap them out every 30 minutes, and if they don’t fit properly they don’t work. You can’t shampoo regularly, brush your hair often, use styling products, pull it back tightly, color or heat treat. If you do, the hair can fall out. On top of the royal pain in the ass they seem to be, they are expensive. $400/month to possibly keep your hair. 

I have been preparing myself mentally for the temporary loss of my hair, but now I have this small possibility to consider. So many decisions. So many gambles. This sucks. What are the odds that lightening will strike me twice?

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3 thoughts on “Starting Over

  1. I had Taxotere, so glad I didn’t know that the hair loss could have been permanent! Mine has grown back. Best wishes navigating all the treatment decisions.
    Love and light from across the blogosphere

    Like

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