Why I Came Out of the Cancer Closet

cancer coming out edit2 fbfIn observance of October as Breast Cancer Awareness Month, I have updated an article I posted (elsewhere) last year regarding my bout with breast cancer. Because I want you to have information about a treatment option that I almost didn’t get.

Last 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 treatments, 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 for a disclaimer (you were expecting something less from a lawyer??). 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.

When I was first diagnosed, I took weeks to research, process, and pray about the decision I had to make. My choices were mastectomy 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. (Really??) 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 – but looked forward to wrapping up so I could speak more freely.

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 next Wednesday for the post on “Tips for Dealing with Breast Cancer” – meanwhile we return to our regularly scheduled programming!

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.

7 comments

  1. Thanks Shel, it still amazes me after all the medical “junk” I have gone through how people worry about hurting a doctor or nurses feelings instead of getting a back bone and asking (I usually demand with a smile) for all the alternatives.

  2. I was almost one of those people, Cheryl! I consider myself a pretty strong person – not generally afraid to express my opinion. But, I came to realize, it’s easy to be intimidated on somebody else’s turf. I can’t tell you how close I came to staying with the first facility, even after the radiologist botched a biopsy, because the surgeon seemed hurt that I was going to a second surgeon elsewhere. When he offered to put a different radiologist on my case, it was all I could do to remind myself to do what I have been telling my family law clients to do for years – “don’t make the decision in the moment.” So I told him I would think about it and let him know. Of course, once out of that environment and not looking into his “hurt” eyes, I was able to make the less emotional call of going elsewhere. What are the chances the first surgeon even knew my name without looking at my chart?? For us loyal types, we need to realize that a doctor/medical staff/hospital don’t warrant our allegiance as if they were family or friends – they are people doing their jobs and businesses out to make money. Which, of course, there is nothing wrong with – it’s just not a basis for such misplaced loyalty!

    1. It’s a lesson that will definitely stay with me, Jill. It also helped that I brought someone with me (a nurse friend) for several of the early appointments – someone who knew what questions to ask,could cut through the platitudes and med-speak as well as be a set of ears that kept listening during times that I missed info because I was still processing what had been said prior. I didn’t want her to come with me initially (it was such a time investment – I didn’t want to ‘put anybody out’) but she kept insisting. I finally agreed to humor her – and ended up thanking God numerous times for her persistence along the way! Learning to accept help graciously (read: swallowing some pride) was yet another valuable lesson I learned through the process.

  3. My first visit to a new gyn this past summer was a nightmare. She took one look at the wrinkled areola of my right breast I had asked about, shrugged and said, “You need to see a breast surgeon” and went to deliver a baby. Her last comment over her shoulder was “I’ll contact you with a referral.”
    One month later her office FINALLY contacted me (I had called twice reminding them that I need a name and referral). By then I’d asked friends and associates who’d had breast problems and mastectomies who they went to, and it was always the same specialists in one one practice that they recommended. For good reason; these women breast surgeons were superb. My issue was Paget’s Breast Cancer, and since there were no lumps or cysts it took weeks of tests, evaluations, different tests and tissue scrapes and biopsies to learn it wasn’t cancer. Two things I learned: write an official complaint about careless and unprofessional doctors, and once you find a really excellent and professional team, write official thanks for and about them, too.

    1. I’m so glad you connected with a good team, Marylin and that your outcome is positive – it’s such scary stuff. I should follow up with a complaint on that radiologist – I was so full of vim and vigor in the moment and I get angry every time I think of him. And yet after his portion of the treatment was over (actually, I never saw him again – all subsequent follow-ups were with the internist) I just didn’t get around to revisiting the issue with his superiors. I agree with you on both counts – we also have to celebrate those doing a great job – and there are many. Unfortunately, just as with lawyers, cops, teachers, priests, and probably most other professions, those NOT doing the job right get the most attention. Have a great weekend!

  4. I’m incensed reading this that no mention was made of this other treatment until you told the doctor you wanted to go to another hospital so I can just imagine how you felt about it. Oh Shel, this is invaluable information for those needing it and who will read this on your blog. I am in a constant fight ( feels like it anyway) with getting my daughter help with Asperger’s, arming myself with all the relevant information and making sure she gets the right support and not those who actually make it worse. Same for her other health problems. But I don’t want to have to tell the doctor their job! They get paid a lot more money than us for that pleasure! It’s exhausting but I’ve come to the conclusion that more and more we have to be proactive with our health both sides of the pond it seems.

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