When I think back on my experiences with the medical care system over the years since my breast cancer diagnosis over 27 years ago, I’m appreciative of the excellent care I’ve received.
I also realize that my involvement in the decision-making process, especially at some crucial times, has been very important.
The need to be more actively involved was at first a sobering realization for me. We don’t grow up learning this approach. And yet it’s crucial.
Looking at my breast cancer experience from the perspective of medical decision-making, I can see that I had both negative and positive experiences in dealing with doctors and the medical system. And I learned a lot from both types of experiences.
Test Results and Diagnosis
My first experience with the cancer world taught me to be assertive and to get written copies of my test results.
I had found a lump, and went to my doctor, who ordered a mammogram and ultrasound, while also pointing out that my risk for breast cancer was very low given my young age (35) and because I had very few of the known risk factors.
The mammogram did not show anything, the radiologist said, even though a lump certainly could be felt. The ultrasound did show a solid lump. The radiologist’s conclusion was that, given my young age, he was “99% sure” the lump was benign.
The question then became whether I needed a biopsy. Both the radiologist and my primary care doctor seemed to put more weight on my young age than any uncertainties about the lump. My primary care doctor said she would be equally comfortable with my getting a biopsy or not getting a biopsy.
What I didn’t know initially was that I needed to be more skeptical. I later learned that we can’t be certain a solid breast lump is benign without doing a biopsy. And when I did decide to consult with a surgeon, he was immediately concerned based on additional information he gleaned from looking at the mammogram films.
Unfortunately, those concerns turned out to be well-founded and I did in fact have early stage invasive breast cancer. (I’ve written more about my breast cancer story in this post.)
Later, I obtained a copy of the radiologist’s written report, which actually did recommend a surgical consultation. But that is not what the radiologist or my own doctor had said to me orally. I was very glad I had trusted my own instincts on this.
Fortunately, my experience with navigating treatment decisions was very different from the initial diagnosis experience.
Some of the decisions were easier than others. For example, that I needed some form of chemotherapy seemed pretty clear after careful consideration of this question. I was young, and chemotherapy would be important part of treating the cancer so that, hopefully, I would not have to deal with it again.
Less obvious was the choice on chemotherapy regimen. My oncologist discussed with me two options that she considered to be equally effective but that had different side effects. One was an older combination that would not cause me to lose my hair, but that would affect cells in my ovaries and as a result could prevent me from being able to have children.
The other option, with included the drug Adriamycin (doxorubicin), would cause me to lose my hair but would not have adverse effects on my ovaries.
Losing my hair seemed like a big deal, but I did recognize that it would be temporary, while harm to my ovaries would be permanent. I researched Adriamycin, and found another issue as well. Even back in 1993, it was known that this drug could cause heart problems.
This was my biggest concern, and I discussed this with my oncologist. She said that the dose that I would be getting would be small enough that she was not worried about the risk for heart problems. I was glad that I had asked about this.
I chose the the Adriamycin combination, and I appreciated having this option to preserve my fertility. This issue is something I’m sure I wouldn’t have thought to ask about on my own. I was glad that my oncologist gave me the information so that I could make the choice that was best for me on this aspect of my treatment.
How I Approach Health Care Issues Now
I try to apply what I learned from these experiences whenever I have health care issues to deal with.
Health care knowledge tends to be population-based. This simply reflects how high-quality studies are conducted and how the “evidence” behind evidence-based medicine is developed.
In fact, much of the terminology of cancer is tied to population-based knowledge, as I’ve written about in this post.
Good doctors are expert at applying population-based knowledge to us as individuals. But we need to help them do that because that can’t know everything about us and our preferences, especially when there is more than one acceptable course of action.
Approaching medical decisions this way doesn’t mean there will always be “choices”. But it does mean understanding the recommended treatment plan and why it makes sense for you. If you have questions, it means asking them in a professional manner and making sure you understand the answers.
Tools I Use In Navigating Health Care Decisions
These are some essential tools that I use regularly in navigating health care decisions, based on my own experiences dealing with breast cancer.
- Find a doctor you are comfortable engaging with. I’ve found that most of the doctors I’ve had have been very receptive to having a dialogue. But when this isn’t the case, it’s better to find a different doctor.
- Obtain written copies of your test results. This is a lot easier now than it used be, with many doctors having electronic portals where the test results can be accessed by patients. It’s no longer viewed as unusual for patients to be looking at their test results.
- Understand both the benefits and the risks or possible side effects of treatment options. For example, if it’s a treatment to reduce the chances of recurrence, what is your chance of recurrence without treatment vs. with each of the proposed treatment options? What are the most likely side effects?
- Ask how any common side effects of a treatment will be managed if you get them. And once on a treatment regimen, be sure to report any side effects right away.
- Ask about alternatives if none are offered. Talking about alternatives, including what is the risk if we do nothing, can make it easier to understand how much benefit a particular treatment offers.
- Don’t hesitate to get a second opinion. This is considered normal for major medical decisions such as cancer treatment and doctors are prepared to do this. Although I had a high degree of confidence in my oncologist, obtaining second opinions was part of my process.
One of the worst things about a cancer diagnosis is the feeling of loss of control. But it’s important to remember that you do have control of how you deal with it. And that includes taking a thoughtful, informed approach to getting the best possible care you can. It really is in your hands to do that.
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Image credit: Javier Allegue Barros via Unsplash