Nancy Riopel
PART 4
I can’t believe that I am already writing the last post in this blog series. It seems like only yesterday that I agreed to consider what I might speak about and how I hoped my audience might be enriched through the process of reading my story. It seems I still have so much left to share with you. And of course it also seems that I have so much more to learn and so much more journey to navigate.
I’ve now taken you through the process of diagnosis and recommendations as well as meeting with a surgeon, a medical oncology team and a radiation oncologist; none of which are going to be a part of the rest of this journey. Where does one go and what does on do after dismissing these common components of a clinical cancer treatment. Well I initially started looking for doctors who were aware of the newest research, who had followed people with DCIS over long periods of time and had a sense of what to look for and how often to look for it. I planned to learn more about invasive breast cancer and find a doctor that I would trust should the worst nightmare become reality.
The more I looked, the less I found. There just weren’t any doctors who would recommend Active Surveillance as a treatment option for DCIS. When I was coming to my wits end, I encountered a doctor who finally helped me understand this roadblock. The doctor shared that while she understood what I was looking for I was not likely to find a surgeon with much experience withholding standard treatment. She went on to say that if I declined surgery and radiation and hormonal therapy and accepted that she would have to note in my file that I was REFUSING or going against recommended treatment she would agree to follow me.
While I was pleased that I finally received an explanation of why I could not find a doctor who would recommend less than surgery, I was appalled at how it really all came down to not wanting to be sued. I was really left with the uncomfortable feeling that I was being pushed to have a mastectomy not for the purpose of reducing the likelihood that I would get invasive breast cancer but for the purpose of ensuring that if I did, I could not sue the doctor for not implementing the most aggressive treatments possible. So our system, the one we have been taught to trust, without question, is built on the premise that even giving a patient the impression that less than the standard of care (one treatment option) is okay, leaves a doctor open to malpractice litigation. No wonder the doctors pushed so hard to instill their message that mastectomy was my only option and to give me the impression that they thought I was putting myself in danger by going against their explicit recommendations.
What I’d like to share now is how since my diagnosis I have met 2 camps of women; those who have bought in hook line and sinker to the fear mongering that most women experience in the face of a DCIS diagnosis and those who rebel and struggle to find peace and acceptance within themselves, their families and society in general. In case it isn’t clear, I fall within the latter group. Luckily I managed to get off the Crazy Train before it left the station, however I regularly encounter many women who are trying to get me to get back on at the very next stop.
Shortly after getting my diagnosis, I searched for a Facebook group on DCIS. I’m not usually much for Facebook or social media of any kind and I definitely was not one for a colloquial approach to medicine among a group of non-experts, however I needed to talk to someone who knew what I was going thru and more importantly someone who was approaching or had approached DCIS with an Acitive Surveillance Treatment Focus. The first group I joined was a rather large group; having over 3000 members. I must say in the first few weeks, I did not spend much time in the group and limited what I read. It wasn’t until 3 weeks in that I actually decided to post something. I wasn’t sure what to expect because all of the posts were about surgery and medication and women wanting to get started on their treatments as quickly as possible. This of course was the opposite of what I wanted; I wanted to slow down, to learn and really just ‘watch and wait’. This was my first attempt at seeking support:
Nancy Riopel Good morning all, I've been in the group for about 3 weeks. This is my first post. I'm feeling so alone. Did anyone else get their diagnosis because of pathology found in the tissue from breast reduction? So far I'm being told that because this was how it was found I don't have the same options as someone whose DCIS was found through mammogram or lump. I'd love to chat with someone in the same boat.
I only got 5 responses. One woman told me I was in her prayers, 2 told me they had breast reductions as a part of their lumpectomy to remove the DCIS (so after diagnosis), 1 who asked me why I was against Mastectomy and 1 from a woman who was in her car on the way home from the mastectomy she had just had the day before because of DCIS that was found in the tissue removed during her breast reduction surgery earlier this year. My heart ached as I wondered if she might have made a different decision if we had had a chance to talk the week before.
Four days later, I gathered up the courage to post this:
I know I'm probably in the minority - but I have to put this out there in the hopes that I might find at least 1 person like me. Is anyone in this group opting for active surveillance rather than surgery? Some might say I'm crazy - and maybe I am - but I feel this is best for me and i would love to connect with anyone who might be considering this. Please let me know I'm not alone.
I got responses from 25 group members; there were a variety of answers, but only 4 people shared that they were doing active surveillance among a group of over 3000 people where there were daily posts about mastectomies, lumpectomies, surgical questions and complications, and medication. I continued to feel pretty alone.
Over the next few weeks, as I gained more knowledge about Active Surveillance, I tried to share what I had learned in the group. I posted a few well done research studies and urged those who had not yet made a decision about treatment to consider the fact that there were some major clinical trials which suggested that Active Surveillance was likely to become the new standard. I was amazed by the reactions that I got. Many condemned me for sharing the articles and expressed that they felt they would be dead now if they had not gone ahead with aggressive standard treatment. Some spoke of having seen women die of breast cancer disparaging researchers, doctors and group members who advocated for Active Surveillance as an option in the treatment of DCIS.
At this point in time, I’m still considering all my options. I’m not sure if there is a benefit to having a surgeon involved in my active surveillance as my family doctor has agreed to send me for the scans I choose on the basis I believe is best given my research. Thank you all for sharing in my story. I wish you all the best and hope that neither you nor your family or friends are ever pressured into accepting treatment that you feel is unwarranted. Always read, read and read some more and then ask questions until you feel you understand and then let your heart and your gut help you decide what’s best for you.