No More Chemo…. so…. hooray (sort of)

I finally got to have a good long talk with Rachel, my lovely oncologist today. We’ve agreed that I’m not having any more chemotherapy.

When my one year scans picked up more cancer in my left breast the multidisciplinary team unanimously recommended a mastectomy. My oncologist was on maternity leave but the Professor that runs the practice was on the team and she suggested that a platinum based chemotherapy should be considered. My surgeon rang my oncologist and discussed it with her at the time and it was agreed that I should not have it prior to the mastectomy.

When I saw my oncologist recently she raised the possibility of having it now and seemed inclined not to, but she was uncertain about it. I’ve been waiting for her to get back to me so we could both check our research and discuss it.

Here’s the thinking behind the decision:

There is good evidence that having a platinum based chemotherapy drug added to the cocktail for triple negative breast cancer prior to surgery can result in a higher chance of a pathologically complete response (code for ‘all the cancer dies’). My oncologist says there’s no research that established a complete pathological response necessarily translates into better long term survival but I was sure I read that it did so I’m going to have to go back and check that. In any case, that horse has already bolted. I’ve long since completed my neo-adjuvant (before surgery) chemotherapy and I’ve had three surgeries since. If I could turn back time I’d have asked for platinum in the original mix.

Note: Since writing this post I’ve found the research that shows a pathologically complete response does improve long term survival prognosis. Here’s the link: http://www.ncbi.nlm.nih.gov/pubmed/17443564

Neither my oncologist or I can find any research indicating that having a platinum based chemotherapy at this stage of my treatment, when all detectable cancer has been removed, would be on any benefit at all. The dilemma is that it MIGHT be beneficial. We just don’t know.

On the other hand, chemotherapy will weaken my immune system and might actually create an opportunity for my notoriously aggressive and treatment resistant cancer to take hold again. All chemotherapy also carries risks associated with the side effects. The platinum based drugs are considered to be among the worst in terms of side effects. I already have numb and painful hands and feet from the FEC chemotherapy and it would likely become worse and potentially crippling with a platinum on top of all that. There’s also a risk of kidney damage and hearing loss.

My oncologist made the observation that I am really well. I look and feel great. My energy is slowly returning and I’m fitter than I’ve been in a long time. Of course, I was also getting compliments on how great I looked when I had my one year scans and discovered that I still had cancer.

All things considered the best course of action seems to be to hold the platinum in reserve. My plan is to not ever have cancer again. In which case I will never need it. It’s also worth considering that if I had it now I wouldn’t be able to have it later. Given that there is no known benefit to having it now we’re both comfortable with the decision to avoid it.

Of course, what all this brings into sharp focus for me is how fortunate I am to have access to such a great medical team. It’s so good to be able to work cooperatively with doctors that are happy for me to do my own research and ask lots of questions. I don’t know how many patients Rachel sees, or how she manages to remember the complex histories and pathologies we all have, but she always manages to make me feel like I’m her only patient and that she has all the time in the world to discuss my treatment. I know she doesn’t. It’s why I always make notes before I talk to her and try to stay on topic. I could easily spend days discussing triple negative breast cancer with her (but I doubt she’d enjoy that as much as I would).

As is so often the case with decisions about cancer treatment, this is a complex decision. In the absence of any evidence to the contrary it seems to be the right one, and that’s really the best you can ever do.

 

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