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Why I’m Coming Out Of The Cancer Closet

Why I'm Coming Out of the Cancer Closet Earlier this year I was diagnosed with Invasive Lobular Breast Cancer. There was no anger, no “why me?” I went straight to self-blame and a list of what I didn’t want.

I didn’t want people to know. I didn’t want people who love me to hurt. I didn’t want to be called a ‘cancer victim.’ I didn’t want to hear about survival rates. I didn’t want “I’m sorry you have cancer” hugs. I didn’t want sad, pitying eyes directed at me. I didn’t want to be immersed in a world of cotton-candy pink ribbons. I didn’t want to have cancer.

As word seeped out among family, friends, and my church community, my focus was on keeping my cancer-life separate from my work-life. My list grew longer. I didn’t want colleagues deciding for me I had too much on my plate for them to refer cases. I didn’t want clients concerned about the priority of their matters. I didn’t want adversaries to think I was trying to get sympathy by playing the c-card. As far as I know, I was successful at keeping IT out of my work-world.

So why, after achieving my privacy goal and wrapping up radiation treatment yesterday, am I suddenly getting chatty on the subject? Because I want you to have information that I almost didn’t get.

Let me break here and make a couple of disclaimers (you were expecting something less from a lawyer?). First, I don’t pretend to represent ‘cancer patients’ and I have no illusions about my medical or scientific expertise – you are simply getting my opinion based on my personal experience. Second, the facility and most of the staff where I am being treated is excellent and it is not my intention to malign either. My issue is with an individual’s handling of an event and is not indicative of how my overall case was handled there.

When I was first diagnosed, I took weeks to research, process, and pray about the decision I had to make. My choices were masectomy or lumpectomy followed by radiation – and I had to make the decision before I knew whether or not the cancer had spread to my lymph nodes. I educated myself. I made lists of questions that I took with me to my various doctor appointments. I took notes on the answers. I switched medical teams after a botched biopsy. I got a second opinion on the type of cancer and treatment. If being a prepared patient was a class, I would’ve gotten an ‘A.’

I learned there were new alternatives to the 6-7 week traditional radiation regimen, so I decided to pursue that route. Proton Radiation Therapy was not available for my type of cancer. The radiologist resident assigned to me told me there was only one other option, described the invasive but shorter procedure, and told me if I opted for that procedure they would have to refer me to the other radiologist on staff because her doctor (my assigned radiologist) didn’t do it.

She left me to ponder the two options while she went to get my doctor. He came into the examination room and explained the traditional regimen I would be on. No mention of the other option. Was he avoiding referring me out? I decided it was a moot issue because, having already had two surgeries, I had mentally decided to go with the less invasive approach.

The treatments would take seven weeks, five days a week. I thanked him for the information and told him that because the process was so lengthy I would have it done at a hospital closer to where I lived. He asked me how much closer. Ten to fifteen minutes – depending on traffic. He said that wasn’t much of a time difference. I told him it wasn’t just the distance – if I was going to be doing this for almost two months, I might as well do it in a town where I routinely shop, bank, etc.

That’s when the miracle happened. He suddenly remembered a third option for radiation. One that lopped three weeks off the treatment time. One that wasn’t done at the other facility I’d mentioned.

“Is it as effective?”

“Every bit as effective.”

“Are the side effects worse?”

“No – there might be more thickening of the skin, but it’s more likely the doctor would notice it than you.”

“Is it riskier?”

“No – they have been doing it in Canada for years and we have fifteen years of data on it.”

“Then why . . . ”

“The reason I didn’t think to mention it sooner is that we don’t use it as often.”

I was glad there was a better option. I was very, very angry that it was only mentioned to me because I planned to go elsewhere. Those of you who know me would have been amazed at the restraint I  demonstrated by simply saying: “I’ll go with that option.” I didn’t see an upside to antagonizing the staff who would be treating me.

The process is called hypofractionation or hypofractionated radiation therapy. The total radiation dosage is divided into larger doses per treatment which results in fewer treatments. For me, it was the difference between 34 traditional treatments and 19 with hypofractionation.

Fifteen less treatments, three less weekly doctor appointments, about thirty less hours of treatment and travel, and thousands of dollars less. I can’t imagine why he almost forgot to mention it.

This newer radiation therapy procedure for breast cancer is probably not done everywhere. If you ask about the option and you are told the doctor is unfamiliar with it or it is not offered at that facility, check elsewhere. There are numerous reasons to move to a different medical facility and it’s done all the time. Do not let fear of hurting the staff’s feelings, loyalty, shyness, or any other reason deter you from making the best choice for your health and your life.

Three extra weeks may not seem like much time to someone not going through radiation. But for the person who loses pay each time they’re off work, the person who needs assistance with transportation, the person who has adverse affects to treatment, and any person who is opposed to spending thousands more than they need to pay, three weeks is a very long time.

I thought I’d asked all the right questions. Asking if there were alternative treatments wasn’t enough. Now we know to specifically ask if hypofractionation is an option.

As long as I’ve broken my ‘vow of silence,’ I’d like to lighten things up by sharing some tips I picked up about dealing with this process as well as my list of things to say – and NOT to say – to a person who tells you they have cancer. But I’ve already violated the keep-it-short-on-the-internet rule. So please join me Monday as I continue this break from our regularly scheduled programming!

    Meanwhile, if you were subjected to unnecessary medical procedures or know a question we should ask to avoid it, please let us know in the comment section below.

 

Shel Harrington
 

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