Nothing is ever what it seems

I last left you, dear reader, on my way to the oncologist. This would be the oncologist who has been following me since I moved to Toronto. I last saw her in July when she gave me the news that the cancer was back. The last visit with the surgeon was so unclear and unsatisfying; I hoped to get more answers and information from the woman I consider to be my real doctor. And I did get answers and information. A lot of it.

My oncologist (who requires a snappy nickname, but that can wait) read through some of the notes from my visit with the psychosocial oncology psychiatrist. Note to self: what is discussed with a hospital psychiatrist becomes part of a file that will be seen by people you may be discussing. She was distressed by some of the things I said. It was clear, she said, that the surgical oncologist did a poor job of presenting me with an explanation of my treatment options and plans. I don’t want you to feel like we set you adrift, she said. You do have options and I am so sorry you were left feeling there were none.

Let’s discuss.

1. The surgeon did not explain why he decided against surgery.

Not only was this not explained to me, it was not explained well to my oncologist. The tumor load is low-volume which is generally the best time to perform surgery. But the surgeon basically told me that the only surgery I would receive would be palliative. I know the cancer will grow back even with surgery, my oncologist knows it, everyone who has had an ovarian cancer recurrence knows it, but surgery forms the backbone of treatment for low-grade recurrences. So why am I not receiving it? My oncologist is frustrated by this almost as much as I am. Which brings us to the second point.

2. I am going for a second surgical opinion with a surgeon outside of PMH.

It is with a surgeon who is highly regarded but who, my oncologist has warned me, has a bristly personality. I really don’t care about that. I’d rather deal with someone who is brusque and insensitive than someone who delivers terrible news to me with a sing-song voice that should be reserved for children. If the opinion is the same — no surgery — then I am happy to continue on the no-surgery path. If it is different, then I’ll have to do a lot of work to figure out why it is different and which opinion I should take.

3. Chemo is an option.

If I want it. As my oncologist said, this type of cancer tends to respond “erratically” to chemo. And there are studies that suggest it doesn’t prolong life in women with low-grade ovarian cancer. However, if I am not comfortable with doing nothing, then we can start chemo tomorrow.

4. A clinical trial is probably a better option.

Specifically a clinical trial that is testing targeted chemotherapy. Until recently, low-grade serous ovarian cancer was treated the same as high-grade, but it doesn’t behave the same way. For now, I’m going to try to wait for an appropriate trial comes up. If I have to resort to chemo before an appropriate trial comes up, it will be with the same agents I had for round one (carboplatin and taxol).

5. I will be monitored with CT scans every 4-6 months.

I can’t remember if I discussed the surgeon’s follow-up plan for me, and I can’t be fussed to look back to figure that out. So I might be repeating myself. Basically, the surgeon told me I would continue on as I had in the past before the recurrence happened — visits with blood draws every six months, CT scans once a year. Which seemed to me a little . . . dismissive? Sure, I have a low-grade recurrence, and low-grade serous ovarian cancer grows “slowly”. But there’s no actual set pace for “slow”, and waiting a year to determine the rate of progression for a disease known for its lack of symptoms until it is well advanced is more than a bit careless.  Then there is the possibility that my recurrence could change from low-grade to mid- or high-grade, in which case exploring chemotherapy options becomes a more pressing concern. But my oncologist doesn’t agree with the surgeon’s follow-up plan and thinks it is important to use imaging more frequently to monitor the recurrence. So I go for my next CT scan at the beginning of November.

I’ve been mulling over all this for a couple of weeks now. For the most part, I am happy to have options again and I am happy that I get to take part of determining what my treatment will be, and when. It’s also a bit overwhelming. My oncologist said, there are many choices for you, and no one knows what the right one is. Choose the one you’re most comfortable with. For now, that’s avoiding conventional treatment (what I am doing alternatively is a post for another day) and going for frequent follow-up. That might change in November based on what the CT scan shows and what the second-opinion surgeon says. Until then, status quo.

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About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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3 Responses to Nothing is ever what it seems

  1. Terri says:

    I am so glad you were able to get more satisfying (and thorough?) answers from your “real doctor.”

    • Jenna says:

      I am shocked that your psychiatric notes are not confidential… but happy it lead to a constructive discussion and that you have for clarity. xox Enjoy your road trip.

      • leeshlou says:

        I was a bit surprised by that as well, but not completely. Technically, my psychiatric care is part of the oncology department. But it also might be a failing of electronic health records (I seem to remember reading that that was a concern).

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