All Clear!

Yesterday was eventful. I went to see Dr. R at Sunnybrook Hospital, in Toronto, for my second opinion dialogue. My wonderful pal and sister-in-law, M, came with me. I have been staying with M and my brother, Tom, for the last couple of days. They have been so incredibly kind and generous as hosts, inviting over friends and family, cooking marathon meals, and generally being the wonderful people they are.

In some significant way, it is M’s own cancer story, or part of it, one really important detail, that may have saved my life. M had pain in her left breast a couple of years ago that prompted her to seek a diagnostic mammogram, only then to learn that she had breast cancer. When I experienced continuous pain in my left breast this past Spring, it was the echo of M’s story that sent me on my own path to my GP seeking a diagnostic mammogram, and finding likewise, cancer in the other breast.

M and I made our way to Sunnybrook Hospital, and to Dr. R’s office in the Cancer Centre. To recap, for the uninitiated, following my surgery, there was a conflict between the cancer diagnosis at time of biopsy (microinvasion) and at the time of pathology analysis following surgery (no invasive cancer). I located, with Dr. R’s assistance, a dedicated breast pathologist who specializes in the kind of cancer that I had (DCIS) and had ALL the slides sent to her for re-analysis - a fresh and highly skilled pair of eyes. Dr. R offered to provide a consultation regarding the whole case once the pathologist had finished her work.

The important facts that emerged from my conversation yesterday with Dr. R are as follows:

-No indication of invasive cancer

-Clear and significant surgical margins (greater than 1 cm)

-Mastectomy was, in fact, my only surgical option because the cancer was not just dispersed (multi-focal) but also existed in two large and separate locations (multi-centric) which removes lumpectomy as an option.

The clinical implication for the findings is that there is no need for any further treatment of any kind, and I don’t even need to pursue any kind of follow-up monitoring.

I really appreciate the effort and commitment demonstrated by Dr. R, who organized the pathology second opinion, and offered to talk to me with no formal referral — just following contact by email. I can’t say clearly enough how wonderful it was to be able, finally, to ask my questions and feel heard.

You have likely participated in some way in my cancer story, if only as a reader of this blog, which has been, for me, a vital way to connect with a social network of folks who offer solace, wit and the critical factor of co-presence. To all of you, I need to say how very grateful I am that you have been strong enough and persistent enough to be part of my life in this strange time. With this new clarity concerning the present - my present body - I feel like I can finally take a big first step away from this grotesque disease that is cancer.

 

Diagnosis 2.0

“Patients with multifocal DCIS with microinvasion have a five-year actuarial disease-free survival of 78% compared to 98% in patients with simple DCIS.” Ductal Carcinoma In Situ of the Breast

I am the fourth woman diagnosed with breast cancer on my mother’s side of the family in the past thirty years. Both my great-grandmother and my grandmother’s sister died from metastatic invasive breast cancer. When cancer runs in families, it tends to show up earlier with each successive generation. My cousin was diagnosed with exactly the same cancer as me (multifocal DCIS, comedo carcinoma, Grade 3 with a focus of microinvasion), at precisely the same age as me (I’ll never tell).

My cousin had the same surgery as me (bilateral mastectomy), but unlike me, she did chemo and tomoxifin. My Rx post-surgery was “no further treatment”. I am getting a second opinion about my breast cancer case. If you’re an American, you may be shaking your head right now, and thinking, “What’s the big deal about a second opinion?” Well, in Canada, it’s not common to get a second opinion, and the medical system is not set up to facilitate getting a second opinion.

I have never been able to rest easy with the discrepancy between the finding of microinvasion at the time of my biopsy, and the lack of a finding of invasion in the pathology analysis after my mastectomy. There are multiple possibilities. It is possible that there was a single focus of microinvasion in the DCIS at the time of the biopsy, and that the biopsy itself removed that microinvasive section of cancer cells. It is also possible that the post-surgical pathology missed the invasive component. Another option is that the biopsy pathologist was mistaken about an invasive component. The difference matters, because there are implications for treatment.

The basic question that needs to be answered with a reasonable degree of confidence is, “Did the cancer (DCIS), prior to the surgery, already progress to the point where some of the various tumour segments included invasive cancer cells that could have travelled beyond the confines of the ducts?”

Certainty in this matter of the diagnosis is not on the cards, because all of the methods for the identification of the kind and grade of cancer cells, and the degree or not of invasion, involve probabilistic techniques. No pathologist has the time to look at every cell, nor does the technology to do so even exist. So what pathologists do is based on a cost/benefit ratio acceptable to most parties, that goes something like, “If I slice up the tissue and make slides that I examine carefully from ten or so of the possible thousands of slices, then I will have a representative sample of the total population of material that could be examined.” And there are disagreements, of course, to pile on to what statisticians call, “standard error of measurement”. So if your life depends on getting the correct answer, then adding a second look to the first opinion is a very solid place to begin to improve the accuracy of the total diagnostic picture.

I was very surprised when I asked my surgeon what was the consensus about the error rate for pathology analyses, and she nonchalantly ventured that the generally accepted error rate was about 10%. Imagine that your life depends on the accuracy of a given diagnosis, and that in ten percent of the cases, a second-look would reveal that the facts were actually different. There is a decent body of research on the rate of disagreement amongst pathologists, like this study, by Canadian oncologist, Dr. E. Rakovitch, of Sunnybrook Hospital in Toronto. If you saw the news reports about Stronach’s DCIS and mastectomy back in June, you will have seen Dr. Rakovitch interviewed in just about every report. Dr. Rakovitch’s research shows that when you get a dedicated breast pathologist to provide a second opinion on pathology slides, a significant percentage of errors show up from the first opinion, resulting in a change of treatment plans in many of the cases (29%).

I searched out a breast pathologist, and an expert oncologist who specializes in DCIS, and together, they have agreed to provide a second opinion. I am really glad that I followed my gut feeling about the complexities of my case, and my family history. I am incredibly grateful to the doctors who helped me to find the right people to provide the second opinion. I’ll know more when I meet with the oncologist in about ten days. I am really nervous about opening up the space of uncertainty again. However, in fact, the space has always been open. All I am doing is gathering more knowledge with which to interpret the various uncertainties.

After my visit with the new team, I’ll update you. When I know, you’ll know.

 

Dancing on Knife’s Edge

I have wondered how to start this blog. Just thinking about writing my cancer onto the screen is way too real.

I have been living with a breast cancer diagnosis for three short weeks - days that have been filled to bursting with specialist appointments, blood tests, MRI, and hundreds of desperate and sometimes awkward conversations with friends and family. And I have cried. I have never cried so much as I have over the past 21 days. Buckets. I never know when the tears will start.

The beginning of this story probably involves a minimum of three combustive elements: queer love, a tattoo and cancer. I could start this account 17 years ago, when I had fallen desperately in love with a woman called Ange. She seemed like a heroic figure to me at the time. When I met her, Ange had just been through surgery for colon cancer. She had “the bag”. And she had a poster on her bedroom wall of an Amazonian woman with an amazing floral tattoo that wound its way across her double mastectomy scar. Ange died of cancer about six months after getting the all-clear from a doctor at the B.C. Cancer Agency. And now, today, I am quietly waiting for my own bilateral mastectomy (double) which is scheduled for the day after the day after tomorrow. And the tattoo that I have so proudly sported for the past seventeen years - a floral wreath that winds its way across my breasts in Ange’s honour - will itself be severed, and distorted; brutally cut short, just like my love of Ange.

I wanted to start this blog right away - back then - in the early days - but I just couldn’t bring myself to do it. I didn’t have the energy or perhaps, the courage. So this first entry will be a retrospective on the first three weeks.

June 8 - a mere three weeks ago - I got the call from my doctor with the results of my core biopsy. I was sitting in the Edmonton airport, waiting to fly back to Vancouver after having done a couple of really good research interviews. I am working on a project where I am looking at media, sexuality, communities and knowledge. When I saw my doctor’s name flash across the call display I knew before I even clicked the little green button that the news wasn’t good. After all, why phone me with good news? “Are you sitting down?” she ventured. My doctor told me that the biopsy of the right breast had revealed DCIS (ductal carcinoma in situ). “We’ve found it very early,” she exclaimed buoyantly, “and it’s totally curable. 100%” She then told me that she was heading out of town herself, but that she had set up an appointment with a surgeon. I remember that I couldn’t hear the surgeon’s name, and that I was utterly at a loss for words. I couldn’t metabolize the information at all.

It was a Friday, which meant that I couldn’t get into the doctor’s office until Monday to read the radiologist’s report on the biopsy. So I read whatever I could get my hands on about DCIS. Monday, I knew what to look for in the report. And when I finally got to see the report, I couldn’t fathom the intention of my doctor’s good cheer. The DCIS was multi-focal, grade 3 comedocarcinoma, and with a focus of microinvasion. Not good. But my doctor wasn’t around, and the next step was to get in touch with the surgeon, and to see what I could find out about her.

Dr. C works at VGH and is an oncological surgeon. So far so good. I found published papers she had authored. I didn’t find anything awful, although I am not sure what I was expecting to find. When I called Dr. C’s office, her secretary set up an appointment the very next day. I was just four days post-biopsy news, and heading into the oncological surgery floor of a major hospital. I didn’t take that as a very reassuring sign although, of course, I was also really grateful.

Dr. C’s office manner was a breath of fresh air for me. She took one look at my page crammed with notes and questions, and asked me what I thought about the situation. I remember thinking, “Wow. How novel. A doctor who wants to know what I think before even giving me her opinion.” So I ventured forth with my impression of the biopsy report, outlined my family history of bilateral breast cancer, and ended with the notion that I would probably be more comforted with a simple mastectomy of the right breast than a lumpectomy, despite the equivalent survival rates, because the fear of recurrence would likely prove untenable for me. My presentation felt oddly clinical - like I was an extra on House who had just nervously stumbled her way through a case presentation during Rounds. I thought Dr. C would vigorously disagree. After all, how hopelessly old fashioned of me to suggest a mastectomy for DCIS when I could opt for lumpectomy and radiation - or what we call, “breast conserving” treatment. But instead of trying to persuade me to keep my right breast, Dr. C steered us right down the path of deciding the fate of the left breast, and about 60 seconds later, I had settled on a bilateral mastectomy. There wasn’t a whole lot left to talk about at that point, save for a discussion of the sentinal node biopsy - a technique for testing the cancer status of the lymph node closest to the cancer and that is designed to reduce the risk of unnecessary lymph node removal. Then came the date for the surgery. July 3. 3 days from today.

I don’t know how to accommodate to the fact that I have cancer, nor to the fact that in three days, my breasts will be removed. Some days, the loss of my breasts seems like the really bad thing that I have to somehow get used to. And then, cruelly, comes the realization that after all, what’s the loss of breasts in comparison to the very real possibility of metastatic cancer?