Stage 0 DCIS Saga — Guest Blog by Lynn Good

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 dp4peace@yahoo.com

About Donna Pinto

I am originally from New Jersey and moved to Los Angeles with my family at age 12. After graduating from San Diego State University with a BA in Journalism, I had a short-stint in magazine advertising sales before landing my "dream job" with Club Med. For two years I worked at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met in Ixtapa, Mexico and we embarked on a two year honeymoon around the world. This was also a research project for a book we wrote called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of a quote book for new graduates -- "Cheatnotes on Life: Lessons From The Classroom of Life." In 1997, we settled in San Diego and I was blessed to work part-time from home for non-profit organizations while raising our two boys. In 2010, a DCIS diagnosis changed my life. DCIS 411 is the culmination of my on-going journey and discoveries.
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4 Responses to Stage 0 DCIS Saga — Guest Blog by Lynn Good

  1. informedconsent2014 says:

    This is an amazing blog post and I read it with a great deal of interest. I applaud you for doing what is best for you. The thing that I don’t understand is why you were offered monitoring instead of surgery, and yet when you decided to opt for monitoring, they immediately pressured you into surgery. Why did they even bother to offer you the monitoring option if they were going to push you into surgery anyway? It seems as if they are starting to understand that monitoring IS a safe and acceptable option from a medical (and legal standpoint), so they now must offer it to DCIS patients, but at the same time, they still want to play the pressure game and force patients into big surgeries that may be totally unnecessary.

    Also, you were wise to find out more about the definition of “modified radical mastectomy” vs. lumpectomy. That certainly is confusing and they really didn’t make any of that clear to you prior to setting up surgery dates. If nothing else, you have time to do more research and ask a lot more questions. The mere fact that they did offer monitoring shows that they know full well that you are not in any immediate medical danger. Otherwise, they wouldn’t have offered it at all. So, you are in a good position to do more research into the subject of DCIS and overtreatment and network with people in this community to find out more. Maybe there is someone in your area who can provide another opinion or further insight. I think the big message is don’t rush into things and don’t allow yourself to be pushed into potentially big medical situations that aren’t needed!

    I and so many of us here are very grateful for DCIS411, we have all learned a lot and each of us has our own story related to microcalcs (myself included). Whether one is 70 or 40 or 20, life is still precious and also quality of life! I am almost 67 and have a lot of living to do, and I want to do it in an informed manner and make medical choices that are right for me! I am so proud of you for making wise decisions based on information and not fear! Stay happy healthy and wise! Let us know how things are going and how you are monitoring your health, as I’m sure there are many in your same boat! Thanks so much for sharing your journey and your experiences!

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  2. Teresa Milner says:

    Kudos to you! When I was told I had Stage 0 DCIS, ER+ in my left breast, I followed a similar path to yours. However, I had already submitted myself to a smorgasboard of invasive procedures: 6 mammograms, 4 biopsies, and multiple ultrasounds, all within a few weeks. My doctors all pressured me toward surgery (AND reconstruction!!), but I chose the “watch & wait” approach. I changed my diet (WFPB, gluten-, oil-, sugar-free) and went back for yet another mammogram at both 3 & 6 months. I attribute the progression of my DCIS to stage 1 to have come from the plethora of mutilating tests I had submitted to (before I was self-educated), and to the incredible stress that was my life at that time.

    The best part of all of it is that I learned SO much about healthful living, and I continue today, almost 6 years later, living a lifestyle I never would have embraced prior to my “cancer” diagnosis. I feel younger and better at age 51 (now) than I did at 45, when I was diagnosed.

    I hope your journey leads to nothing but positive outcomes.
    Best!!
    Teresa

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    • Hilary says:

      Can I suggest a place to go?
      I don’t know where you live but I travel from the East coast as necessary to be a patient at Cancer Center for Healing in Irvine CA. You can Google them and attend their class (events/learning tab). Or just give them a call and get on their email list to receive an invite to their helpful webinars. You can also have a free initial phone chat with them. Tell them your dilemma. They are integrative and have a number of different practitioners They will provide you with a very customized approach tailored to your specific needs

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    • chritie arnold says:

      what does wfpb mean-any supplements u could share with me

      Like

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