Thursday, November 18, 2010

IDC #6: The Oncologist

She’s a little thing, not slim, but small of stature and face, dark hair curled around, glasses hiding her eyes. Her handshake is weak, airy. I don’t feel a confident power about her the way I felt from Dr. Louis. She doesn’t look terribly young, but somehow – reticent.
We juggle sitting positions and then she proceeds with a litany of options. She doesn’t allow Vince to interrupt with a question, almost as though she must start and finish or she won’t remember it all. She has reams of surveys that she has printed from the Internet on survival rates using a myriad of treatments. She mentions that chemotherapy is one option when the tumour was more than 1 cm.
Mine was 1.1 cm.
My body reacts physically to the word: chemo. A flush, a hot rush of fear, courses through me; I feel my face begin to flame up. Now I am wary and on edge.
She explains that my pathology report states that I am HER2 receptor negative. This (I have read previously) is a good thing. These little buggers are aggressive and kind of nasty. They will want to return. So I’m happy they’re not present at all.
I am, however, estrogen (hormone) receptor positive. This is something Dr. Louis told me and therefore, familiar. In fact, 80% of women (in my age bracket) who have breast cancer are estrogen receptor positive.
(I keep thinking of the old joke: how do you make a hormone?
Don’t pay her.)
I will have to take a medication called Arimidex for five years. It’s an anti-estrogen/hormonal therapy. Hormonal therapy medicines treat hormone-receptor-positive breast cancers by “lowering the amount of the hormone estrogen in the body and by blocking the action of estrogen on breast cancer cells. Estrogen makes hormone-receptor-positive breast cancers grow. So reducing the amount of estrogen or blocking its action can reduce the risk of early-stage hormone-receptor-positive breast cancers coming back (recurring) after surgery”. Okay. All of this is expected, all of this we knew. All this means is that my moustache will probably grow thicker. So far, so good.
Then the doctor gets to those reams of print-outs.
Statistics, statistics. I got a C in statistics in university, despite the assistance of my classmate and friend John. My head cannot handle them. All statistics lie, all liars use statistics, is a rule for me.
First, radiation is a given. “Radiation therapy — also called radiotherapy — is a highly targeted, highly effective way to destroy cancer cells in the breast that may stick around after surgery. Radiation can reduce the risk of breast cancer recurrence by about 70%. Despite what many people fear, radiation therapy is relatively easy to tolerate and its side effects are limited to the treated area.” I like this option. This is the route I have been expecting.
For my treatments, I’ll have another doctor, this one tells me - a radiation oncologist. I’m already glad she’s not the one. It will be at Credit Valley Hospital in Mississauga. No problem. We’re ready. Give us the schedule.
The doctor examines me and pronounces me well healed (not heeled). My husband ogles me when my breasts are bared, despite bruises and stitches and rolls underneath. He’s the best.
She does tell me something very helpful: in removing the lymph nodes, the surgeon would have removed nerve endings as well, which explains the stinging. But it will get better, she assures me. Thank goodness for that - it's the only thing that's preventing me from saying that I feel perfect.
Then the oncologist continues with the stats. She keeps recurring to the recurrence of cancer factor. Chemotherapy would do blah blah blah. Yah, make my hair fall out, cause me to throw up all day, become rake-thin. (The last one almost makes me say, yes, let’s do it, but the other two cancel it out.)
What it boils down to: I could do a test that will give us more information. “The Oncotype DX test may help some women diagnosed with estrogen-receptor-positive breast cancer and their doctors decide if the cancer is likely to come back and if chemotherapy would offer benefits.” (I read this later.) Benefits - and side effects. Do the benefits outweigh the side effects? That's what "you and your doctor" would have to decide.
But chemotherapy is not normally recommended when the lymph nodes are clear and the HER2 is negative. Even if the Oncotype DX test came back and said I had a high risk of recurrence, the chemotherapy would still only reduce that risk by a small %age. And we’re talking about reducing the 30% that the radiation treatment offers by a few, scant %age points more. Teeny benefit for a huge price.
But the oncologist scares me with the paperwork and the repetition of stats and her admonition that “this is your life”. We have mentioned going to Mexico for six weeks. I think she's gotten the impression that we feel the cancer treatment is too much of an imposition on our plans, as though we'd decide not to go ahead with this or that simply because we'd have to postpone our trip. Huh?
She's pushing for the test, for delaying the radiation treatment.
She tells me I'm young and I can go on other holidays. Huh?
I feel an uneasiness and a flash of unreasonable anger at my husband, simply because he’s the only other person in the room and I want him to make the decision for me.
So I finally say, OK, let’s do the test, which will mean the radiation treatments won’t start for another 3-4 weeks. I’ll have to sign some papers, she says, so return to the waiting room and she’ll send them out to us.
Vince and I talk in the waiting room. I am disgruntled: something is telling me that I have made the wrong decision. I want the radiation therapy to begin as soon as possible.
Now I have delayed it with a test that will be highly unlikely to make a difference to the decisions I made previously: partial mastectomy, radiation, drugs.
No papers come out. Just a new appointment, 4 weeks in the future.
I am angry all the way home. My body tells me clearly, with its dissonance, that I have made a mistake.
When I get home, I talk to my son, cruise the Internet, talk to my husband.
Some of the facts I read stay with me: “About 1 in 8 women (in the United States) will develop invasive breast cancer over the course of her lifetime. About 70-80% of breast cancers occur in women who have no family history of breast cancer (hey, that's me!). These occur due to genetic abnormalities that happen as a result of the aging process (what?) and life in general (the red wine??), rather than inherited mutations. The most significant risk factors for breast cancer are gender (being a woman) and age (growing older).” Great. Another factor is being overweight. That, at least, I can do something about.
“Radiation therapy has an important role in treating all stages of breast cancer because it is so effective and relatively safe. It may be appropriate for people with stage 0” – I am Stage 1, but only because it was invasive: the size is called 0 (under 2 cm) and the metastasis is 0 – “through stage III breast cancer after lumpectomy or mastectomy. Radiation therapy is recommended to most people who have lumpectomy (lumpectomy plus radiation is sometimes called breast-preservation surgery).”
"Typically a doctor will recommend lumpectomy followed by whole breast radiation if the cancer is: early stage (check); 4 centimeters or smaller (check); located in one site (check); removed with clear margins (and check)." Dr. Louis recommended exactly that path of treatment for me, for all of these reasons.
“Each person's treatment plan will be different, but there are some general guidelines about who would benefit from chemotherapy:
Chemotherapy is almost always recommended if there is cancer in the lymph nodes, regardless of tumor size or menopausal status. - NOPE
Doctors recommend more aggressive treatments for premenopausal women diagnosed with invasive breast cancer. - NOPE
Chemotherapy may be recommended for some women diagnosed with early-stage breast cancer if the cancer is hormone-receptor-negative and HER2-positive. Both of these characteristics are associated with cancer that is more aggressive.” – AND NOPE.
I am more convinced than ever that the Oncotype DX test is a waste of time and has simply resulted in delaying my treatment. Vince agrees.
I call the oncologist. I have to leave a message. They promise to get back to me within twenty-four hours. Twenty four HOURS!! I get myself into a bit of a tizzy, until I realize that, test or no test, I can ask them to start my radiation treatment asap.
I can also request another oncologist.
Again – how awesome is our health system! I have options. I don’t have the stress of paying for all of this, on top of the stress of having this condition in the first place. Of having to make all these life decisions. It’s not a perfect system, the people in it are not perfect either, but oh my god, it’s so much better than in other countries, one of which is right next door and keeps trying to talk us out of medicare. Avast, ye swabs!
I have more messages in my email box: supportive, loving, energy-pumping messages, and suddenly I feel good again. Right decision, right country, right family and friends.
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