Stage 0 DCIS Saga — Guest Blog by Lynn Good
Published with the kind permission of Donna Pinto, author of the DCIS411 blog, and Lynn Good, author of the testimonial, from United States
Thanks Donna and Lynn!
Posted on January 25, 2023 by Donna Pinto
Thank you for this blog; it has been a great help to me.
My family doctor pressed me to get a mammogram a couple of months ago. I am 70 years old and had had a mammogram 16 months before. There is no history of breast cancer in my family. After the mammogram, the radiology center asked me to come back for more imaging because they thought they saw something of concern. The results of the second, more detailed scan showed some calcifications; the radiologist showed me images and said I could choose between monitoring and having a biopsy; she said the calcifications were near the chest wall so she wasn’t sure a biopsy would get them. I said I was comfortable waiting. At that point she started putting on a lot of pressure for me to choose to have a biopsy instead. I agreed, expecting it would be negative. The procedure required 3 tries, the third time with a larger needle, to get the desired sample. A clip was placed to mark the location. The results of the biopsy came back Ductal Carcinoma in Situ (DCIS), ER+, left breast, Stage 0. My family doctor then referred me for a follow-up MRI of both breasts and to a surgeon and oncologist. The MRI was done and showed nothing. NOTHING! Both the radiologist and my family physician talked about the likelihood that a lumpectomy would take care of the DCIS; my doctor said Tamoxifen or another estrogen suppressant might be prescribed to address the estrogen sensitivity shown in the biopsy pathology results. Neither mentioned the clean MRI.
At the surgery consult, the surgeon began by showing knowledge of my medical history, which seemed to show she had done her homework, then gave us an opportunity to ask questions. I asked about sentinel node biopsy based on information my brother, whose wife died of breast cancer, gave me; she said she would be doing that using blue dye to find the nodes. She wanted an RFID clip inserted in place of the one the radiologist had put in. She also described how she decided by how the tissue “felt,” how much of the breast she would remove. Pathology would be done on the sample afterward to help decide on further treatment. While I was focused on this, my husband mentioned a lumpectomy; the surgeon corrected him, telling us that that wasn’t the correct term-the procedure was technically called a “modified radical mastectomy,” but I didn’t absorb that part of the conversation. Later at home, my husband brought it up, saying that he thought that meant removal of the entire breast. (By the way, his first wife died of breast cancer and he has told me over our years together what that was like, so I am not unfamiliar with what cancer can do to a person.) At that point I became upset. The next day, a Friday, I left a message asking the surgeon to call me to clarify whether she was planning breast conservation or to remove the entire thing. As she was in surgery that day, I was told she would not be able to call back until Monday. Later that day, her assistant called and gave me the dates for the surgery and all of the other related procedures.
Over the weekend, I tried to find information on what a “modified radical mastectomy” was; I think I had heard her say it, but thought the “modified” meant it would be a lumpectomy. What I found told me it wasn’t. It also told me what the surgery would do to my body and how that might feel. And I came across a number of articles, in journals and reputable publications, about the overtreatment of DCIS with surgery. That DCIS doesn’t always progress. I also found this website [DCIS 411]. After a great deal of anguish and talking it over with my husband, I realized I was more afraid of having my body mutilated and myself traumatized by the surgical procedure and the prospect of living the rest of my life from scan to scan wondering whether it would be clean or not, than I was of actually dying! As I said, I am 70 years old, and I have had a very good life. I also have begun to have some health challenges that even before this, led me to begin thinking about end-of-life issues because, you know what? We all die eventually!
By the end of the weekend, I knew that I was not going to go ahead with the surgery, at least not now. I’m even a bit uncomfortable with the idea of a second opinion or monitoring, because I expect to just be pushed back toward this treatment treadmill. I will go back to see my family doctor and try to explore other options, none of which, you notice, have been presented to me yet, or information on pros and cons of options and descriptions of the possible/likely outcomes of alternatives. I don’t know if there are practitioners in my area that would consider other approaches or respect my values and right to choose, but I am going to try to find one.
As I was approaching my 70th birthday recently, I felt I have reached the normal human lifespan; I can feel ways my body is beginning to break down. But today, I am still here, and every day that that is true is a gift. I choose to experience that in an intact body, not one that is mutilated and with a mind that is traumatized and kept terrified by the prospect of a negative scan or medical report in the future and what will have to be done to me to treat it. And I am prepared to live with the consequences of that choice.
I am sure that my decision is not necessarily right for others; situations are different, everyone has to decide for themselves, and no one really knows what it feels like to walk in another person’s shoes.
Thank you Lynn for sharing your story and insights. I’m so happy you have found help and solace from DCIS 411. Wishing you peace, love, light and health – Donna Pinto
For anyone interested in writing a guest blog post, please email me (Donna) at firstname.lastname@example.org