Nancy Riopel


Where to start today? I feel so very blessed after hearing from the ladies at Breast Cancer Action Quebec that the first part of this series received a lot of attention.  I posted the link to the story on my Facebook page and received some excellent feedback from both close friends and distant acquaintances that they had learned a lot by reading my story.  This warmed my heart as it is my hope that anyone who gets a similar diagnosis in the future receives it with the empowerment that only knowledge can impart.  It is with this in my heart that I begin part 3 of my story.

Today I’d like to share my experience in meeting an oncology team.  As I alluded to in my last post, this part of my journey began much more positively than any of my previous experiences.   When I arrived at the cancer clinic, I was greeted by some wonderful volunteers and compassionate staff.  I had my picture taken and was given a binder where I was told I could keep all the information I would gather as I learned more about my circumstances and my treatment.  I felt like I was becoming of member of something, maybe even joining a team.

My first appointment of the day consisted of meeting with the medical oncologist.  I had heard and read some wonderful things about this particular oncologist’s compassionate approach and I was looking forward to finally having someone accept that my journey with DCIS was not going to include a mastectomy or drugs like Tamoxifen.  I hoped to learn more about how I might get on with my life, making lifestyle changes that would help reduce the risk that my DCIS would progress to invasive breast cancer as well as perhaps learn more about how I would be followed and what I might expect if I was among the 20-30% of those whose DCIS does indeed progress.

The medical oncology nurse explained how my day would proceed and got me to change into that ever-awkward front opening medical gown.  With a lump in my throat, and tears ready to overflow my lower eyelid, I courageously asked my nurse if she could ask a favour of the doctor I was about to see.  In a shaky voice, I said “Could you ask the doctor to treat me like a person with feelings and beliefs”.  I shared that I had had some rather traumatic encounters with doctors who had showed no interest in who I was or what I cared about.  The nurse assured me that I was in the hands of a very compassionate team and encouraged me to share with both the student oncologist and my lead oncologist what I had just shared with her.  She assured me that both the student and experienced doctor would want to understand my experiences and would work hard to ensure that I felt understood and supported.

My first encounters with these doctors made me feel that who I was and what I wanted were going to be an important part of my journey from here on in.  The student oncologist did the first part of the assessment and asked some personal questions, like we had just met at a networking event and she wanted to get to know me.  She asked about my family life; how many children I had and their ages.   She asked about what I did for a living and showed interest in my business.  She also asked about how I liked to spend my free time.  Her medical assessment was thorough and well paced and demonstrated that she understood how emotionally difficult the appointment was for me.  She did a brief but thorough clinical breast exam and assured me that she felt nothing out of the ordinary. 

When the lead medical oncologist came into the room, she quickly noticed that I was still in the awful medical gown.  She had everyone leave so I could change into my own clothes and be more comfortable.  My heart ached with joy at this simple act of compassion on this very difficult journey. 

She acknowledged that she had been told I was well informed about DCIS, had done a lot of reading about my diagnosis and that I was pretty clear about how I wanted to proceed.  She said that she wanted to be sure I had all the information possible so she was going to explain as much as she could.  She drew me some pictures and explained that DCIS is not an emergency and is not invasive breast cancer.  She noted that all the abnormal cells are currently contained within the confines of the milk ducts and thus could not go anywhere else in my body without first breaking out of the milk ducts.

She explained that medical intervention consisted of reducing the risk of the current cancer-like cells breaking out of the confines of the milk ducts.  She explained that this could consist of surgery and concurred with previous surgeon responses that in my case that unfortunately meant mastectomy because there was no way of knowing where the DCIS removed during my breast reduction surgery came from, location wise, in my right breast.  She offered some less invasive approaches which might include the use of Tamoxifen and whole breast radiation (more info to come a bit later).

While my scheduled appointment with this medical oncology team was intended to be only 1 hour, the team gave me all the time I needed going almost an additional hour to answer all my questions.  The oncologist accepted that I was not comfortable with Tamoxifen, the recommended medication and agreed that it likely was not a good fit for me.  She shook my hand and encouragingly said that she hoped she never saw me again; which I interpreted to mean that she wished me well on my journey and that I would never need to see her for invasive breast cancer.

The next doctor I saw was a radiation oncologist. This surprised me and my husband because we had never before that day been told that radiation might provide a second-best option to mastectomy.  This doctor explained that since my DCIS had technically been removed (though they were not sure if there was more still in the breast) they could potentially treat me as though I had had a lumpectomy which is, I was told, typically followed by radiation therapy to ensure any microscopic cancer cells had not been left behind.   The doctor initially made a good case for radiation and actually had me considering it, though I would have to be away from my home and family for at least 4 weeks.  The benefits sounded good initially.  However, as I asked more questions, I realized that radiation therapy would provide no defense against any larger DCIS which they explained might be hiding in the scar tissue left by my recent breast reduction.  She also explained that radiation to the breast would go through a small portion of my lung and of course through the bones of my rib cage.  She explained that this could lead to other problems including lung cancer and or bone cancer.  It is important to note that she really up played the benefits of radiation and downplayed the risks. 

The turning point for me however was when she shared that radiation to the breast is a one-time process.  She explained that after I went through the 28 radiation treatments she was recommending, I would never again be able to have radiation meaning that, should they later find either remaining DCIS from the initial diagnosis, or a recurrence of DCIS, or God forbid a small invasive cancer, I would have no option but to have a mastectomy as lumpectomies needed to be followed by radiation which I would not be eligible to have later should I proceed with this option now.  My mind was made up; there was no good reason to believe that the DCIS had not been completely removed during my breast reduction. At this stage of the game, I wanted to keep what I then referred to as ‘my wild card’ should I need it later if I developed invasive breast cancer. Remember, I just couldn’t even fathom the idea of a mastectomy.

I informed the radiation oncologist that I was not interested in radiation therapy and continued to hold strong to my decision despite her almost pleading with me to accept her services.  While she verbally said she was not trying to influence my decision and would accept what I chose, she continued to both verbally and non-verbally influence me to accept the proposed treatment.  I’m so happy I learned all I could before making a decision as without that last piece of information I might have accepted a treatment which I now feel was never warranted and might well have been harmful in a number of ways.

Both the medical oncology team and the radiation oncologist asked my permission to have my case reviewed by their multidisciplinary team.  They stated that they wanted the opportunity to discuss my case in this group because my diagnosis had been made in such a different way than most; having been found post reduction surgery in the removed tissue. 

Being a person who respects discussion and values diverse opinions I said yes.  I wanted them to discuss the fact that the only evidence of disease was on a slide in a laboratory in Toronto; that currently I myself was what they refer to as NED (no evidence of disease). I was told that the team would meet over the next week or two and make some recommendations on my case.  I agreed to a follow up video conference appointment to review the recommendations on 2 conditions: 1) that they focus on how I should be followed under Active Surveillance as that was my treatment choice and 2)  that my family doctor would be a part of that video conference so that he could hear the surveillance recommendations first hand.  While this coordination of doctors clearly posed a challenge for the clinic, they agreed to schedule the appointment through my family doctor so that he could be present during the discussion.

I left the cancer clinic feeling somewhat more in control of my destiny and pleased with my decisions to refuse mastectomy, tamoxifen and radiation.  I still had questions about what active surveillance meant and I planned to continue to research. 

Over the next few weeks, I unfortunately became disillusioned by the process that overshadowed the initial compassion I had felt from my oncology team.  I met with roadblock on top of roadblock as I followed the procedures identified by my oncology team to pose and receive answers to any questions that I thought about.  I was informed by the medical oncologist that she was floored that I did not accept radiation.  I was discouraged when I was told that the radiation oncologist would not respond to my questions about scoring me on the Van Nuys test without a telemedicine videoconference scheduled appointment which I thus accepted on the condition that the appointment was solely to answer my question and not to present me with the multidisciplinary team’s recommendations on my case.

So, my next encounter with the oncology clinic was via telemedicine videoconference with the radiation oncologist I had seen a couple of weeks before.  The purpose, in my mind was to get the score this doctor had assigned to me on the Van Nuys test which provides recommendations for treatment and to get the name of the other similar test which apparently suggested that I was an intermediate risk of developing invasive breast cancer.  To my dismay, the radiation oncologist quickly jumped into providing the recommendations of the TUMOUR board; which is the name she gave for the multidisciplinary team.  She stated to no surprise that the ENTIRE team felt that I should have a mastectomy.  She then went on to say that the team did not recommend radiation treatment at all as they did not feel it would be helpful; despite the fact that she had basically pleaded with me 2 weeks before to at least accept radiation therapy if I was unwilling to have surgery. 

Finally, the radiation oncologist said that the team felt that if I refused to have a mastectomy then I should be prepared to have both a mammogram and an ultrasound every 6 months as well as a contrast assisted MRI once per year.  This is 10 times more tests than what is recommended for the average woman who has a 12% chance of developing breast cancer in her lifetime.  I was floored.  From what I had read about a study going on at Duke University investigating the viability of active monitoring was only using mammograms every 6 months no ultrasounds or MRIs, so 2 tests per year. This team was recommending 5 per year for me.  I left this appointment feeling blindsided and dismissed, especially when I spoke about the 3 large scale studies (COMET, LORD, LORIS) randomly assigning women with DCIS to either standard care or active surveillance and she had no idea there was any research of this nature going on.

My husband and I had some very difficult conversations over the next few days.  It became clear that we had a difference of opinion about what constituted a good patient doctor relationship.  My husband felt that I was not giving the doctors the respect that they deserved by questioning their knowledge and their understanding of the current research.  While my husband told me that he supported whatever decision I made, I felt alone and not supported because he did not jump in to share the info we had read or discussed when the so-called experts were refuting the validity of the research that I had read or the processes I wanted to engage in.  Throughout this period, we had a long discussion about what I needed from him, and I must say he really came through once he understood what I needed and why I needed it.  He was able, with practice and support, to start our next appointment off with a solid request to the medical practitioners to allow me to direct the discussion and to answer the questions that I had.  I know my hubby was out of his comfort zone, but he did a really good job of setting the stage for me to advocate for myself and to regain a sense of control over my own life. 

Now that my husband had set the stage for me to lead the telemedicine appointment, I took the opportunity to share my feelings and ask some questions which I hope promoted thought, empathy and understanding on the part of the medical team.  I started by sharing with both my family doctor and the radiation oncologist that my last appointments had left me feeling unheard, devalued and dismissed.  I explained that I was not pleased at all with how the last telemedicine appointment had gone.  I shared that I felt that the radiation oncologist had highjacked the appointment, failing to allow me to ask the questions that the appointment had been booked to address and instead shared the recommendations of the multidisciplinary treatment team that were to be addressed today.  I went on to share that I was not pleased with the recommendations of the multidisciplinary team and did not understand the process by which they would have come to those recommendations.  I then went through a series of prepared questions about how the multidisciplinary team comes to its recommendations. 

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.

Despite the fact that the radiation oncologist provided very little in terms of answers to my questions or shared that many of the pieces of the puzzle that were important to me were not part of the discussion by the multidisciplinary team, I felt much better.  I felt like I had taken charge of my health and my treatment and had given a clear message that I would not be tricked or bullied into accepting the opinion of professionals who were less informed about the current state of research on DCIS and who refused to treat me as a whole person rather than a tumour.

I wrapped up the telemedicine conference with two statements.  I recommended that the center never use the words “Tumour Board” to refer to the multidisciplinary team when talking to the patient; she had used those words every time she spoke of the multidisciplinary team throughout the appointment.  I reminded her that I am much more than a ‘tumour’ or a group of cancer cells.  I reminded her that patient care should be patient centered and consider the whole person, the mental, the cognitive, the spiritual and the physical.  I also recommended that they allow patients to participate in the discussions with these teams so that they can hear what the professionals have to say and ensure that what is important to them takes on the most importance in developing any recommendations. 

My final statement was this, “Please close my file and cancel my future appointments”.  I do not feel understood and respected by the professionals in this clinic and will thus seek services elsewhere.  My family doctor was not thrilled with my final words.  My husband however, finally understood the depth of my need to have power over my own journey.