Gaining Agency with Your Medical Team During Cancer
Updated: Oct 13, 2018
During Cancer treatment so many decisions can be made for you by your medical team and often you will be a willing participant. But what happens when you choose to go outside the standard protocol and query a treatment or say no to a treatment? How will your professional team respond to you? Why do you fear challenging the experts? Yes, fear does come into it. When we put our lives into someone else’s hands with years of training and experience we expect them to be putting out best interests first in their decision making. You might not like to challenge them because they are the expert and fear a negative response. But what if they are wrong?
When I was diagnosed with Triple Negative Breast Cancer (TNBC) I researched my brain off. I read all day every day for about two weeks before my first treatment of chemotherapy started, which was FEC (Fluorouracil, Epirubicin and Cyclophosphamide). I read the pros and cons and read more medical literature than I thought possible. FEC certainly seemed to be a 'go to' in my part of the world for TNBC. But my alarm bells started ringing when I researched the second phase chemotherapy, which was Docetaxel. I discovered that even though it is fairly standard for breast cancer, it wasn’t considered one of the leading chemo treatment for Triple Negative Breast Cancer. The better chemotherapy in my country for my TNBC was Paclitaxel, a less toxic but endurance testing chemotherapy, requiring one session a week for 12 weeks rather than 1 session every 3 weeks for 3 sessions of Docetaxel. Hmm..
I went to my next Oncologist meeting fully armed with my findings, ready to let him know my opinion. When I put the Paclitaxel case to him he was really happy, he said that it was a great idea to swap from Docetaxel to Paclitaxel, as statistically it has better outcomes than Docetaxel for TNBC. As you can imagine my jaw was on the floor! I asked him why, if this is the case, had he prescribed the upcoming Docetaxel? His response was because I lived an hour drive from the hospital, he presumed I wouldn’t want to travel in once a week for 12 weeks, so he chose the Docetaxel! I was astounded that I hadn’t been given the decision to make that choice myself, he had made the decision based on my commuting distance! I told him that I value my health more than anything, more than my commute, and that switching to the weekly Paclitaxel was my decision. One I am so grateful, with retrospect, to have made, as there were no great side effects on Paclitaxel, apart from ongoing hair loss.
I can’t speak for the regimen you are on but always remember you do have the control, agency and right to know why a particular treatment has been selected for you. If you want to know why - ask. Don’t feel intimidated with titles and experience. Put it this way, if I had found out after the fact that I had been prescribed an inferior chemotherapy to save me the hassle of a long commute I would have been fairly upset and angry, wouldn't you? Instead I thanked my lucky stars for questioning the Doctor when I did.
If your Doctor isn’t so amenable to being questioned and gives you the stock answer, ‘This is the standard protocol’, you are within your rights to get an elaborated answer or a second opinion. Either at the same hospital or elsewhere. We are all different, we all have our own Cancer quirks and Cancer manifestations. If you find some research, that disputes a regimen you have been assigned, bring it in and show your Oncologist. I did this with other things and sometimes it was all my Oncologist could do to stop his eyes rolling in in his head. Often it may be that a particular treatment is not approved or used in your country, or it is so new they haven’t got it in their hospital programme yet. Don’t let eye rolling get in the way of your health.
But remember a good Oncologist is on your side too, they want you to get better and not suffer. I had a client who told me that during his chemotherapy he hadn’t wanted to let his Doctor know how ill he was between chemo treatments. He took it as a sign of weakness that he couldn’t ‘cope’ with the chemotherapy. He was too embarrassed to admit he was struggling. It was his wife who happened to attend an Oncology meeting with him who asked the Doctor what she could do to help with all the side effects. The Oncologist was confused, as no side effects had been mentioned by her patient until that point. When she found out the truth she reduced the chemo dose down immediately and the side effects lessened greatly. My client got the all clear at the end of treatment so there had been no need to ‘man it out’ on a higher dose. Be honest with your Oncologist. Don’t assume that you are meant to have very severe side effects. They will need to know which ones you have and how severe they are in order to help you out.
Be in charge of your cancer treatment, as much as possible. Know your rights, know why you are on a particular protocol and stand up for yourself by asking probing questions, even if you have a negative experience with an Oncologist. This will make you feel more in control and in charge of yourself, an important contributor to maintaining self-esteem during Cancer.
If you are struggling with communication and assertiveness during your treatment I am here to help you with great CBT techniques and tools. Book in a CBT appointment with me and let’s get working on this now.