Here are the questions that I asked, along with the responses that were provided to me by the radiation oncologist
1 – Please list the titles of the professionals who participated in the discussion of my case; including any specializations such as oncology fellowships for any of the general surgeons.
The radiation oncologist could not list the professionals who attended the particular day my case was discussed. She had no idea whether the surgeons who participated had oncology fellowships or not (it turns out none of the surgeons on the team had done an oncology fellowship). She noted that there were no radiologists on team, even though the major recommendations that I was interested in were about what type of test to use and how often to screen. She shared that there were no psychologists or social workers on the team, even though I had previously shared with her that I suffer from anxiety and that I was convinced that a mastectomy would lead to severe depression and impaired ability to function cognitively, mentally and emotionally.
2 – Please list the components of my case that were discussed in order to make the recommendations and share the compelling evidence in favour of surgery over active surveillance in my case.
The radiation oncologist shared that the team had discussed the fact that my DCIS had been found in the tissue removed during a breast reduction surgery. She noted that they were concerned that not all of the DCIS had been removed or that even if it had been removed it might not have had the required margin of clear tissue around the DCIS. I asked if they had discussed my concern that I would suffer a severe debilitating depression if I went ahead with a mastectomy especially if the analysis of the tissue removed during the mastectomy showed no evidence of disease at all. Despite the fact that she confirmed that a mastectomy could indeed show that there was no evidence of disease, meaning that it had indeed all been removed during the breast reduction, she stated that the team had not discussed either my previous history of mental health or my current concerns that a surgery would lead to severe mental health concerns and disability.
3 – I then asked the radiation oncologist if the team had taken into consideration the risks of surgery or over-diagnosis.
The radiation oncologist downplayed the risks of surgery compared to the risks of dying of breast cancer. She spoke as though it was clear cut truth that failure to have a mastectomy would lead to both invasive breast cancer and death.
4 – I then asked how much consideration was given to my tolerance for risk of developing breast cancer over my tolerance for risk of over treatment. I had previously shared that I was prepared to take the chance of developing invasive breast cancer in the future but that I was not prepared to risk finding out that I had had a mastectomy for nothing because the DCIS had all been removed during the breast reduction (which I was told was indeed a possibility).
The radiation oncologist told me that the team had not discussed this as they don’t take this type of thing into consideration.
5 – I asked if the members of the team were aware of and had discussed the 3 major on-going clinical trials exploring the effectiveness of Active Surveillance.
Despite the fact that I had shared the information about the COMET study clinical trial with her just 5 days before, she stated that she herself was not aware of any of these studies and that no team member had brought up anything about any of these clinical trials. Even when I shared with her that I understood that all three studies were randomly assigning women with DCIS to either receive conventional treatment or Active Surveillance, she insisted that NO DOCTOR WOULD EVER AGREE TO LEAVE DCIS INSIDE A PATIENT. She would not change her stance even when I made her aware that I was familiar with research ethics and knew that no ethics board would ever allow the randomization of women to Active Surveillance if there was not already a large amount of data that demonstrated that a watch and wait approach was likely just as good as either a mastectomy or a lumpectomy plus radiation.
6 – Please explain the reasons for the variety and frequency of screening tests recommended.
All the radiation oncologist could say was that it was their expert opinion; she was unable to provide any explanation or justification for this recommendation. When I questioned the fact that there was no radiologist present she just dismissed the question stating that there is never a radiologist present at these meetings. When I brought forth some questions about the risks of having all these tests, especially 2 mammograms per year, she once again said the risks posed by the tests were better than the risks of not having the tests; dismissing my assessment of each of the risks. It’s important to note that mammograms have been controversial for a long time. There is research that suggests they have a high rate of false positives, a high rate of false negatives, lead to over-diagnosis and over treatment and perhaps even increase the chance of developing breast cancer because of the fact radiation is a known carcinogen.