Reasons / realizations

Many folks have asked me, what ever happened to that clinical trial you were considering?

The short answer is, I decided not to do it.

The medium-short answer is, I decided not to do it for a number of reasons large and small.

The medium-long answer would include a list of some of the reasons:

1) I wasn’t excited about doing more chemo, which it would likely have entailed if I’d been in the treatment group

2) The evidence they are using to assign the treatments based on genomic evidence is apparently pretty theoretical, and the study has been critiqued as being under-powered to tell much about the different treatment groups;

3) Given that I currently have no evidence of disease, there would be no way to tell if the chemo was helping me or not; my outcomes would just be part of the statistical evidence in the long run for other people. (I think this is probably why most of the clinical trials out there about triple-negative breast cancer are for people with metastatic disease; since there is no known cure, patients are presumably much more highly motivated to participate in them, and would have some direct personal evidence of whether they were getting better or not while in treatment).

4) My oncologist was suggesting I enter the trial to get genomic information about my tumors, and that I could opt out of the treatment I was assigned to if I / she didn’t like the sound of the particular treatment they assigned me; however, I discovered that the genomic information about the tumors that they would use to guide their treatment decision would not be available to me or my doctor “until relapse,” since that information could suggest additional treatments to the oncologist that might skew the results of the study. Since my only solid remaining reason for doing the trial would have been to support the scientific research, planning to enter it and then leave it if I didn’t like the treatment didn’t seem like a very good approach to me.

5) I did determine that genomic testing of the tumors could be done at some later date on tissue samples they’ve preserved if evidence accumulates that there is an effective treatment that is warranted.

6) My sister-in-law the brilliant MD did some reading and reported that she found one medical paper that suggested that additional chemo at this point might be as likely to be detrimental to my ultimate survival as helpful; this paper apparently strongly recommended that physicians not prescribe more chemo to people in my situation except in the context of a clinical trial. In addition to making me less excited to receive more chemo, this also helped me let go of the idea that I should perhaps be seeking genomically-assigned treatment outside of a clinical trial (our attempts to find out what other treatment might be available basically met a dead-end, with a top expert in the field saying that in his opinion there is not enough knowledge yet to be attempting genomically-directed treatment for this type of cancer). Finally, this idea that the outcomes could be “two-tailed” in this way, i.e. more chemo could hurt as well as help, helped me let go of the worry that if I didn’t do the clinical trial, and then developed metastatic cancer, that I might be kicking myself for not having done the trial. I still pretty much feel I should do everything in my power to avoid recurrence, but if some of the things I might do could also harm me, that doesn’t seem like a win.

7) The diet my oncologist suggested felt like a more positive way to act on the feeling of wanting to do something more to avoid recurrence. While it is somewhat questionable scientifically, is challenging, and is leading me to make quite a few changes in my lifestyle (and wardrobe), it is also pretty clear that getting my weight under control (it had been slowly but surely creeping up over the years) has a lot of other health benefits as well as possibly helping prevent metastatic cancer.

The really long answer would also include some more about my decision-making process, and might call into question whether or not I was really deciding based on reasons at all.

As you may remember, I was kind of obsessed about this question of further treatment for a couple of weeks after meeting with my oncologist, during Don’s dad’s funeral, and before going on the meditation retreat with Tara Brach. It was a tough decision and had implications for whether and how to plan the next period of my life. After the retreat I was much more relaxed about it, and thought, I’ll just wait until near the end of the enrollment window for the study (84 days after my surgery) before I decide. And in the meantime (I said to myself), I’ll just “live into” what it feels like to not be in treatment anymore. I had read that some cancer patients have a hard time ending treatment, because it feels like you’re no longer actively doing anything to combat the cancer. I realized that this was somewhat true for me, and that I needed time to get used to the feeling of living with the risk, and not knowing whether or not the cancer will return.

Then, 2 weeks after returning from the retreat, I decided to go to Israel one week before my departure!! It wasn’t until after that major decision was made and the wheels, wings, and camel bags were in motion to speed me on my journey that I realized, uh, gee, the time when I thought I’d be making my final decision about the clinical trial, I’ll be in Israel!! I think I laughed out loud when I realized this, because it was clear to me that, all of the reasons and reasoning aside, I had made my decision without realizing it!!

On Nov. 3rd (2 months after my surgery and 4 days before leaving for Israel) I emailed my oncologist to say:

Hi, Dr. O’Regan,

I have decided not to enroll in the clinical trial or seek any further medical testing / treatment at this time.

I have also decided (last minute!) to travel to Israel, 11/7 - 11/23! I’m happy to be feeling well enough!

I have continued with the low-fat diet, will relax my vigilance as needed on the trip.

I am wondering how you feel about me trying herbal and/or homeopathic remedies for jet lag and, longer-term, for hot flashes?

Thanks much, Becca

Dr. O’Regan, who travels a lot, replied:

Hi, Becca

That's wonderful, have a great trip. I am fine with any supplements you may want to try.

Let me know if you find a cure for jet lag.

Best, Ruth