Have you ever heard of DCIS and what do you know about it? Prior to being diagnosed with what the medical profession calls stage 0 breast cancer in February 2019, I had never heard of Ductal Carcinoma in situ. Let me tell you, that the word Carcinoma sure got my attention and had me shopping for nipple tattoo artists within 12 hours of diagnosis.
I came to my diagnosis in a very different way from most women. Most DCIS is discovered via a mammogram and confirmed with some type of biopsy. My journey was quite different, when I was diagnosed with DCIS, I had never even ever had a mammogram.
My DCIS was diagnosed via the testing of tissue removed during a breast reduction. Unbeknownst to me, tissues removed during surgery are apparently routinely screened for ‘cancer’, so much for ‘informed consent’. Well, 2 months after my breast reduction, my plastic surgeon’s office called to tell me that the surgeon wanted to see me the next day with regards to ‘something’ on my pathology report.
While I sat on the examining table, uncomfortable in my forward opening medical gown, my plastic surgeon, faced his computer, his back to me, and read my pathology report outload. I remember hearing the word ‘carcinoma’ and looking at my husband who sat in the support person chair 5 feet or so away from the examining table on which I sat, he mouthed the word ‘tumor’ to me. I don’t really remember anything else the doctor said after that, I just remember that he never even stopped or turned to look at me and just kept on reading.
I remember thinking to myself, “Oh my God, I’m going to throw up or pass out”. I slowly got down from the examination table and walked over to my husband sitting at the other end of the room and started to cry. Finally, the plastic surgeon turned to me got up and started to look for some Kleenex. He spent the next few minutes telling me that I did indeed have cancer, but that it was the BEST KIND of cancer anyone could have. He told me it could be 100% CURED and that all that I would have to do was to have a SIMPLE MASTECTOMY. “A simple mastectomy; how can lopping off one’s breast be simple?”
He explained that since my ‘cancer’ had been found after a breast reduction, there was no way for them to know whether they had gotten all or only part of the tumor and no way to check because they had no idea which parts of the tissue came from where in my breast and so no idea where to look for ‘remnants’ of the tumor. In less than 10 minutes I went from finding out I had cancer, to learning that I would lose my right breast. There was no option for a ‘lumpectomy’ because they did not know and apparently could not find out where the tumor had been or was in my breast. The plastic surgeon further explained that since I had had a reduction, there was no way to spare my nipple because the only blood supply to my nipple came from the breast tissue below it (the skin around the nipple had been totally cut away during the reduction) which would have to be completely removed in order to be sure that no cancerous cells were left behind.
As if the shock of finding out I had cancer and that I would lose my breast and my nipple wasn’t enough, the plastic surgeon spent the next 45 minutes sharing with me what he seemed to feel was great news. He explained that I would be able to have immediate reconstruction. He went into great detail about the different options for cutting tissue from other parts of my body, my stomach or my back and moving tissue and fat to ‘build’ me a new breast.
After explaining all this terrible mutilation, he expressed that he prefers to do reconstruction with implants, he shared lots of information about how the ‘bumpy’ implants have been removed from some markets because they are thought to cause cancer and how even though he is not required to by law, he prefers to only use the smooth implants. My husband tells me that he spoke about how he would cut into my chest muscles so he could place the implant behind a muscle so “it would look more natural’. Truly, I don’t remember much about the conversation, I just remember staring at this ‘sack of silicone’ that was to replace my breast. As I look back on it now, the main focus of the entire appointment was not telling me about my ‘cancer’ or even about my treatment options. The focus of the appointment was ‘selling me’ on reconstructive surgery. I might as well have been buying a new car so much so was the sales pitch for reconstruction options. If I had been buying a car, instead of cancer treatment, I would have at least gotten a test drive, some information on fuel efficiency and the option to shop around.
The plastic surgeon told my husband and me that since my ‘cancer’ could be totally cured by surgery, I would never even have to see an oncologist. He went on to say that he could refer me to a general surgeon and that he and the surgeon would work together to get my surgery done as soon as possible and that I could put this whole ordeal behind me in the matter of a couple of months. At the time, I was thrilled, I remember saying to my husband, I feel so much better knowing I won’t even have to see an oncologist. I also remember wishing the surgeon would hurry up to call and schedule this appointment so I could forget all about this and get on with my life.
On my way home from the appointment, I called each of my sisters and shared the news that I had breast cancer. I explained that I had ‘the best kind of cancer’ and that I would soon have a mastectomy and would be totally cured. I apologized to them for ‘increasing’ their risk of breast cancer and encouraged them to let their doctors know about my diagnosis so they might be spared the experience that I was going through. I told them that I was strong. I told them that there was nothing to be scared about because this kind of cancer does not kill you. We all agreed that I was lucky that I had a breast reduction so that they found it early before it became life threatening.
That night I went on the internet to shop for nipples; not to research DCIS, or to explore treatment options, or better understand survival rates, but to shop for nipples. I was devastated by the prospect of losing a part of myself.
The next day, one of my sisters texted me the question that would change my whole approach to this roller coaster ride. She asked “Are you really going to take cancer treatment recommendations from a plastic surgeon?” She urged me to read, and to seek out the best doctors. She reminded me that in our northern communities, many doctors, even oncologists, are less likely to be aware of cutting edge treatment options and urged me to consider going to a large center like Toronto or Ottawa, or even coming to stay with her in Winnipeg to see what the doctors in dedicated breast cancer clinics had to say.
Well, I owe her my life, or at least my right breast because I learned that the diagnosis of Ductal Carcinoma in situ is very controversial. I learned that some doctors are lobbying to change the diagnosis so as not to include the word carcinoma. I learned that a better description of DCIS is a “non-obligate precursor” meaning that only some DCIS ever becomes the type of cancer that needs to be treated. I learned that in perhaps up of 70 or 80% of cases, DCIS remains nothing more than an odd lesion never even causing any symptoms. And finally, I learned that there are currently 3 large scale studies, exploring the option of Active Surveillance for DCIS.
You might be thinking to yourself, that I must have been so pleased to learn the above facts and that those learning those facts meant I could forget the diagnosis and just go on with living my life. Unfortunately, my roller coaster was just gaining speed and I would spend the next two months trying to convince the medical field that I was not ‘suicidal’ by ‘refusing’ Western Medicine Standards of Care.
Over the next few months, I will share more about this difficult but enlightening journey. I hope to share with you all that I have learned not only about DCIS, but also about Western Medicine and the need for women to be EDUCATED before a diagnosis, not only in breast health and general health, but in Western Medicine, in Standards of Care, and more importantly in Self-Advocacy.