Early in February of 2013 I underwent an endoscopy and colonoscopy at a hospital in the Greater Toronto Area. Near the end of the procedure I awoke to overhear a conversation between my specialist and his assistant in which I learned the diagnosis was cancer, that treatment would be radiation only, no surgery. I said nothing about overhearing the conversation but waited to discuss it directly with my specialist.
I prepared a list of questions and discussion points in preparation for my next appointment. When I entered the office he immediately told me I had cancer, and this is what he would do for his mother, that it had been sanctioned by “the committee”. I was told surgery was the usual treatment with a resultant colostomy but because of my polio history I would probably not get removed from a respirator and my treatment would be radiation only. I tried to have a conversation with him about breathing issues, the logistics of getting to radiation (I use a power wheelchair and live in Toronto), the side effects both temporary and permanent of radiation, and the consequences of having no treatment. He became very irritated. He went back to his desk - he had been pacing - he signed an already prepared form, told me I would go for radiation five days a week, for six weeks. He abruptly got up from his desk and opened the door as a signal for me to leave. His last words to me were “I’ll see you in a year for another colonoscopy”.
I left very upset. I left his office with little more insight into my condition than on my arrival. I was not informed of the type nor even the exact location of the cancer. Not only had decisions that would have a major impact on the rest of my life been made for me without consulting with me, they had been made on assumptions, misinformation and non-information and I was offered no recourse to question it. I made an appointment with my family doctor from whom I learned that the diagnosis was adenocarcinoma of the lower rectum, confirmed that I had been referred to radiology only, and because I was so distraught, referred me to the oncology clinic to talk with someone. The request was ignored.
Fuelled by my dismissive treatment, I armed myself with knowledge gleaned from various sources. All were consistent in the recommended treatment for rectal cancer - surgery - no matter the stage. Some radiation may be done before, during or after surgery, but surgery is the gold standard. Radiation only is done solely in cases where the patient is too ill to withstand surgery. Clearly I did not fit into that category. I was further spurred on by a CT scan that determined a Stage 1 cancer. The possibility of a “cure” loomed on the horizon. I sought a second opinion. I was referred to a surgeon at another location. The difference in respect shown to patients was night and day.
A comprehensive history was taken, a two-way conversation actually took place and further testing was done. Surgery was not questioned. All this took time. New tests revealed that the cancer was now spiking and beginning Stage 111. My question to the committee is “If surgery had have been performed in a timely fashion when it was first diagnosed, would it have reached Stage 111?”
Surgery is now behind me. I have a colostomy. I’m learning to live with my new reality. I’m living a fully independent life in my own home and gradually resuming my old activities. If I had agreed to the “radiation only” option, assuming logistics could have been worked out, I would in all probability be residing in a nursing home, perhaps still with radiation burn, in feces soaked diapers for the rest of my life. I’m very grateful to the surgeon and the team that gave me a fighting chance at quality of life and did not just dismiss me as “not worth it” like the first specialist had.
I’m requesting a copy of the minutes of the portion of the committee meeting in which my case was discussed. What I want to know is who represented me at that meeting? Who spoke for me? Did anyone question the validity of my specialist's assumptions regarding breathing issues? Did anyone ask for concrete evidence or suggest a second opinion? Did anyone suggest a spinal with light sedation as an alternative to conventional anesthetic? Did anyone question the consequences of radiation burn for someone who sits in a wheelchair full time? Considering the location of the tumour with the almost certain destruction of the sphincter muscle, did anyone question what quality of life would be like post radiation? Did anyone ask any question on my behalf or was it just a rubber stamp and “next”. I fear the latter.
I’m assuming, perhaps falsely, that every member of a committee that makes life and death and quality of life decisions for faceless people know best practises and the consequence of each treatment option. I’m alleging that, in my case, disability, age and gender, in that order, played a far greater role in my specialist's and the committee’s decision than did “best practise”. False assumptions were made with regard to my physical condition, my intellect, and my capacity to make my own decisions. I am requesting a meeting with the committee chair, one or two other committee members, and any other interested persons, to discuss this with me in person.