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Wednesday, December 1, 2010

I HAVE JUST BEEN DIAGNOSED WITH CANCER: WHY DO I NEED AN ADVOCATE

There is nothing simple about battling cancer. Fighting cancer is a battle for your life so you owe it to yourself to get the best treatment possible for your cancer. New treatments and options are developing constantly, so it is up to you to decipher the options and make informed decisions. Likely right now you think “I can barely breathe, let alone function…how am I to figure all this out?” Well, unfortunately, your life and your quality of life depend on it. Let me share a few stories with you.
My mother was diagnosed with breast cancer in 1994. She had surgery, chemotherapy and radiation. Five years later, she had a recurrence. The scans detected a tumor under her right arm. She went to a local hospital to have it removed. Here an unbelievable thing happened. While removing the tumor, the surgeon noticed an additional cancer…but did NOT remove it and later told her that while he saw it, he did not remove it as it was not listed in her paperwork. Such incompetency is completely unacceptable. I urged and insisted that she go to a specialist and this time she agreed. She went to a major cancer facility, and had the tumor removed. The cancer came back. Now she had to make a difficult choice. She was told that to remove all the cancer could mean compromising her ability to use her right arm. My mother was right handed, loved to sew, bake, quilt, garden…she would have been lost without the use of her arm. She took a chance and they removed as much of the cancer as they could, and advised more chemotherapy and radiation. They did a follow up scan on her and found a suspicious spot on her lung. The doctor suggested a biopsy that would amount to surgery as invasive as open heart surgery. I explained that my mother was too weak and would not survive the biopsy. They gave us no options. I then called other facilities and found that she could likely have a needle biopsy, much less invasive. I called a contact at the New York division of her facility and inquired as to why my mother’s doctor did not want to do a needle biopsy. This doctor looked at her charts and agreed that the needle biopsy was most certainly the way to go. I asked why that was not offered to her and he told me that the adjunct facility apparently was not aware of the procedure. The needle biopsy was performed in New York, no cancer; we could have lost her to an unnecessary surgical biopsy. I know that doctors are busy, and I know no one is perfect, but if your life is on the line, do you want results or excuses? In the summer of 2007, my mother’s cancer had spread to the brain. She was advised to have radiation, which would mean she would have to stop chemotherapy. I was concerned and took this to another oncologist. She explained that my mother was very sick, but likely the cancer in her brain was slower moving than elsewhere in her body, and if she stopped the chemo to take the radiation, the cancer would quickly takeover and kill her. She took the radiation, was bedridden for over a month, and died soon after.
My cousin was diagnosed with cancer of the thymus. She went to a well known cancer facility, and considering her cancer is somewhat rare, was likely in the right place. However, when Barbara asked the surgeon if she would be able to wear a bathing suit after the surgery, his response was “how dare you ask such a question, you should be glad to be alive!” Being the feisty person that she is, she responded “ok, doc, let me put it this way. After you cure me and I am eternally grateful to you, will I be able to wear a bathing suit without looking like Quasimodo?”

A parent at our sons’ school was diagnosed with breast cancer this past year. She called me, wanted to talk about it. She asked me to accompany her to the doctor as she felt he was condescending and unwilling to answer her questions with the detail she needed.
I was the lucky one. In the fall of 2006, my mammogram was less than perfect. I was called back, and the doctor told me things did not look good and that I needed to get a biopsy right away. It took me less than five minutes to get home, and the phone was ringing. It was my Ob/Gyn. He assured me everything would be fine, but explained that in my case, I would require a stereotactic biopsy, and it would be tricky one given the location, but he recommended someone who could perform it. (To keep this short, he was right, others told me this was not possible) Well, this radiologist was amazing, and called me less than 24 hours later with the bad news and recommendations for two doctors (same specialists my Ob/Gyn recommended); she told me I needed to call right away. I did, and as it was the Friday before a long weekend, they were closed. I called her back and she said not to worry, she would make the appointments for me. I saw one doctor that Monday (yes, on a holiday) and the other a week later. The first doctor was wonderful, patient and explained my options, but yet we went home numb and scared. When we saw the second doctor, my husband and I knew immediately that he was our man. He brought in a plastic surgeon and again, we knew we were in good hands. I cannot tell you what difference it makes when you feel cared for, in control. My team was amazing. From start to finish, my journey was expedited by helpful and talented doctors. I am eternally grateful to them for empowering me to make the best decisions, for being open minded to my concerns and ideas and for understanding that there is life after cancer. This is why I believe everyone needs an advocate. Because at the time in your life when you can barely function, and at a time when you most feel the need to be taken care of, you are the one who needs to be proactive and assertive. It is now that you need an experienced person by your side that can help you navigate the process and get the care you deserve. You don’t have to go it alone.

Elyn Jacobs
elyn@elynjacobs.com

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