When is the Right Time to Change Your Treatment?
After being diagnosed with high-grade T1 bladder cancer in 2017, I was launched into a conversation with my doctor after my TURBTs that at the time I was ill-equipped to deal with. There didn’t seem to be many options for treatment on the table and to be honest, I wasn’t prepared to make such big decisions that early in my diagnosis. So, rightly or wrongly with my minimal research and still coming to terms with having cancer, I opted for what I felt at the time was the least invasive.
Why I chose BCG
I was choosing between the options to remove the bladder, chemotherapy or BCG. I didn't know much on any of these options and didn't want to even consider the removal of my bladder, and I was fearful of words such as chemotherapy. I opted for the BCG because it seemed the impact on my daily life would be minimal. Whether or not this drug was going to be effective on killing off the cancerous cells was low on my list of priorities at the time.
Fears of the cancer becoming more serious
So, fast forward 18 months, and I’m thinking I need to consider changing my treatment. I say this because over the 18 months that I have been treated with BCG, I’ve had two recurrences, followed by procedures under general anesthesia to remove the tumors. Both biopsies have come back classifying the tumors as low-grade superficial, and as a result of this, my medical team has decided to continue to treat me with the BCG. My reservations with the BCG is that if I continue to have recurrences, the next tumor that returns could be more serious, leaving me with restricted options, such as the removal of my bladder, which I fear more than the cancer itself!
Listening to my doctor's advice
I’ve discussed this with my doctor, and he is under the impression that although I have had two recurrences, my treatment is going well and to continue with BCG. So as always, I’ve taken on their advice and stayed with the current treatment plan, which is to receive weekly doses of the drug, followed by another cystoscopy after 3 months to see if any tumors have returned.
My doctor's reaction to seeing me outside the treatment room
Around the time of my third weekly visit to the urology department, which is based in a major general hospital, I decided to pick up a coffee from the cafeteria. While leaving with my purchase, I could see my doctor entering the same cafeteria. Happy to see him outside of the treatment room or the surgical theater, I made a point while passing him to say hello. He literally looked at me with a complete blank and with absolutely no recognition of who I was and only politely offered a very weak response back me. I was slightly taken aback by this, because for some reason I expected him to fully recognize me, mainly because he and his team were playing such a huge role in my life, literally!
Am I just another tick in his box?
While traveling home, I started to reflect on what had occurred within the cafeteria. I was listening to and basing my entire treatment plan on the judgment of a doctor that didn’t even know me. So how deeply is he really looking into my treatment options for the best possible outcome? Am I just, as I imagine, another tick in his box? The truth of the matter is that although he is a very important person to me, I am one of many hundreds of patients that he deals with, which means my patient number and treatment plan is all he will possibly recognize and be familiar with. Knowing this has left me feeling even more unsure with my current treatment plan. The realization that I am truly just another statistic within a very large bladder cancer system is annoying. It may be naïve of me, but I would like to think that the one person making some very big decisions on my life knows me a bit more on a personal level and a lot more about how I’m feeling, or at the very least recognize me in passing, considering I’ve been under their care for 18 months now.
Taking control of my care
What’s become very evident with all of this is that I must at all cost take control of my treatment, my care, and my future. Unfortunately, we can become just a statistic to the professional bodies, and if I were to perish from this disease, my loss to the medical fraternity is not going to be any big deal. So, I’ve shifted my views on loyalties to any one cancer care provider. I intend to go where it's best suited for me and have just recently told my current primary care provider that I intend to seek a second opinion on my treatment plan from another cancer institute.
Determined not to be complacent in my treatment
It may well be that the second opinion concludes that my current treatment is the best at this stage of my journey, but at least I would have heard it from a second party, which will hopefully make me feel a whole lot better. The fact that there are many more treatments available now in the bladder cancer world dictates that I must consider all options, even if my current provider does not. I’m determined not to be complacent in my treatment, and I’m armed with a lot more information and knowledge today than I was 18 months ago. So, I’m taking back a little bit of control for my treatment, my care, and my journey.
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