Questions I wish I had asked before starting my cancer treatment
I was diagnosed with breast cancer in the middle of last year. The initial shock of the diagnosis took me quite some time to process, my emotions took over, and thinking straight, let alone making important decisions became incredibly difficult. As I began working through the life changing news and what it meant for me and my family, one of the first dilemmas I encountered was the timeline and the urgency in which I felt decisions about my treatment options, often involving different specialists, needed to be made. Looking back, I now wish I had asked a few more questions, but at the time I didn’t quite appreciate, nor understand, the ramifications that some of my early decisions would have on the future management of my cancer. Below are some questions I wish I would have asked before the treatment wheels were set in motion, so that I was better prepared and more informed.
1. Which health professionals will be involved in my cancer treatment and care, what is the nature of their involvement, and at what stage will they most actively be involved?
In the beginning I had no idea who would be involved in planning, delivering and overseeing my treatment, and at what stage they would be involved. However, the number of different health professionals who played a role at different stages actually surprised me, and included my surgeon, medical oncologist, breast care nurses, radiation oncologist, genetic counsellor and chemotherapy nurses.
I found it quite reassuring to learn that a multidisciplinary approach to my care was being adopted to decide and deliver my cancer treatment plan. If you are unfamiliar with the term, one way of explaining multidisciplinary in the medical sector is a group of health professionals and specialists (including allied health services, nurses etc.) with different, but complementary, expertise and skillsets, coming together to deliver holistic care and treatment, to achieve the best possible health outcomes for the patient.
In addition to asking about which health professionals will be involved in your treatment and the nature of their involvement, you may also want to consider how you will select the various individuals who will need to be involved in your care? For example, will you request recommendations from others including friends, family, your general practitioner, or do you prefer to make contact with one specialist first and then go with either their established team or with those they may work with and recommend. There are undoubtedly a lot of dedicated, caring professionals working in the medical field, and for me it was important to feel comfortable with those who were involved in my treatment. Personally, I wanted people who were genuinely interested in listening to me and happy for me to ask any question at all, and as many questions as I needed to, without making me feel silly or without rushing me through the appointment.
2. Who will oversee my care, treatment in the short term and long term? Who is my point of contact so to speak, for example, when you are in between different treatment regimes?
At various times and stages of my treatment, there were different medical professionals taking the lead, e.g. medical oncologist whilst I was having chemotherapy; the radiation oncologist during my radiotherapy etc. Whilst I was under the care of each specialist, they let me know they would provide an update to the other specialists involved, sometimes questions I raised with one specialist triggered recommendations or information that was useful for other members of my team to be aware of. Knowing they all communicated with each other was very reassuring as I then knew they would each have the most current information about my progress.
If your treatment is being managed by more than one specialist, and particularly if your treatment will span a long period of time, you may want to clarify if the members of your team will communicate directly with each other about your progress or if some other arrangements are in place.
Whilst a multidisciplinary team has its advantages, given my life time risk of cancer, I wanted to know who was going to be responsible for monitoring me once each course of treatment had been completed and who would be monitoring me over the long-term. In my case, my surgeon is overseeing my long-term screening, but each situation is different so it is worth asking, will it be your surgeon, your general practitioner, or other?
3. Should I have genetic counselling and testing?
This is a very important question, actually it should be considered as two questions, given genetic counselling and genetic testing are two different things. These are the two questions I really wish I would have asked and investigated more thoroughly right from the start. I will explain why in more detail in another post, suffice it to say that I didn’t have genetic counselling and testing till after I had surgery and completed chemotherapy and radiotherapy, and it was only then that I learnt I have an ATM mutation. This puts me at a moderate increased risk for breast cancer, increased risk for pancreatic cancer (and possibly others). However, this is not a mutation the medical field knows a lot about, and the current evidence for treatment and screening protocols is limited and not very clear. The reason I think it is crucial to consider genetic counselling and testing is that the presence of certain genes can lead to different treatment decisions. For example as I have had radiotherapy, a mastectomy with reconstruction now becomes a lot more complicated, and implants have not been recommended because of the damaged cells from radiotherapy- I wish I would have known this information prior to undergoing radiotherapy. There are also other questions that you may want to consider, such as:
a. Will/could the results of my genetic testing impact the type of treatment I should consider?
b. What is the likelihood there will be established protocols (e.g. screening,) for genetic mutations I am being tested for? Finding out you have a genetic mutation is one part of the puzzle, knowing what to do with the information is another. In my experience, it appears we are learning about genetic mutations faster than we are identifying evidence-based treatment and screening protocols- this is the current scenario I am facing and I have many more questions than answers — no doubt much more research is required in this field.
c. Will results of my genetic testing have an impact on my insurance eligibility and cover?
d. What are possible short- and long- term implications/impact of treatments, if testing shows I have a mutation?
4. Are there any clinical trials I should consider?
Before beginning your treatment journey, it may be worthwhile asking if there is a clinical trial that is suitable for you. Asking about the clinical trial doesn’t mean you have to participate, but if one is suitable then at least you will be able to collect information about the trial, where it is being held, if you qualify, what’s involved et cetera, and then make your decision from there.
5. Should I ask for a second opinion?
A number of critical decisions are made during your cancer treatment, and although I have the upmost respect for the medical profession and for those who have been involved in my care, there have been times I requested a second opinion, mostly to help clarify my own thinking about a matter or just to validate information or advice. Someone in the medical profession did say to me that sometimes more information can just confuse you, and yes whilst this may result in the need to process more information, I decided I would much rather be confused than uninformed.
Finally, facing and dealing with cancer is not easy, and emotions have often clouded my thinking, but I found being a little prepared for appointments helped empower me a little. Writing down my questions and trying to take an active role in the decision-making, so that I felt like I had some sense of control over my treatment journey also helped.
Also, whilst I know the medical professionals on my team have my best interests at heart, at various times throughout my treatment I have had to advocate for myself, to try to maximise the likelihood of successful outcomes. This doesn’t mean I went to my appointments pretending to know it all, but rather went into my appointments having researched new treatments, developments and possible alternatives and had information that enabled me to ask questions I may otherwise not have known to ask.
If you have appreciated my story I would appreciate your claps and comments.