On this day, January 19, 2010 — 12 years ago — I was given a diagnosis that brought my happy life to a screeching halt.
I had never heard of DCIS before, but from the moment a nurse told me about the aggressive treatment protocols, I knew something was not right.
I read an article about a proposed treatment option called “active surveillance.” This emboldened me to refuse all the “standard of care” treatments.
At the same time I became fascinated with stories, books, articles and films about holistic ways to reduce cancer risk and improve health. I became a passionate student of “food as medicine” — and in 2013, I received a Certification in Nutrition.
Most importantly what I learned over the last 12 years was this:
True health is more than just high quality organic plant-based food, filtered water and daily exercise. A healthy disease-free life revolves around a mindset. It’s not something most oncologists and healthcare providers are knowledgeable about. One has to go outside of the mainstream medical box and dig deeper within themselves. I made a “Wheel of Healing” that included everything I felt was important to my health and well-being…
I understand how overwhelming it can feel in the beginning after a scary diagnosis. But I also know for sure that this can serve as a wake-up call. It did for me. And while my path is not for everyone, the journey it took me on is one that I am grateful for each and every day.
I created my website DCIS 411 in 2011 in hopes of helping even one person seeking answers and support outside of the mainstream medical box. It warms my heart to know I have made a difference in so many lives. I am truly grateful for the wonderful friendships I have developed along the way.
The time I spend writing, working as a patient advocate, and sharing insights in support groups is my way of paying forward the love and wisdom I received when I was scared and in need of guidance.
I created a nonprofit called Give Wellness inspired by my friend and amazing researcher Sandie Walters who co-founded DCIS Redefined with me in 2013. Some of my Recipes for Wellness can be found here.
Over the years I have tried to simplify all the information and frequently asked questions. I created a FAQ page as well as a BREAST WELLNESS CHECKLIST and a RESOURCE CARD for women diagnosed with DCIS. Both can be downloaded…
Lastly, I always encourage people to find a like-minded tribe/support group. Links for DCIS support groups I created or am involved with can be found under Resources.
Words could never express the gratitude I feel for all that I have learned as well as all the wonderful people who have helped or supported me in one way or another over the last 12 years.
Due to the loss of both of my parents over the last two years, I have not had too much time or energy for writing blog posts or keeping up with my passion projects. One of my goals for 2022 is to work on a book as well as create short educational videos.
I hope to connect more with many of you in 2022. You can “Follow” my blog by entering your email address if you’d like to receive an email when I publish new posts. Feel free to leave a comment below, follow me on Twitter, or send me an email. My contact info is here.
With peace, love, gratitude and blessings,
January 19, 2022
Donna, you were the voice in the wilderness when I was first confronted with a few microcalcs back in 2011 and was told (actually ordered!) to get a biopsy. At that time, I was in the middle of buying a home and selling another home, my mom had just passed away, so I hit the “pause” button and decided to research microcalcs, which I had never heard of before. That’s when I stumbled upon yourt website/blog and began my journey to question, question, question!
You are a true angel, a blessing, a warrior, and one of the most intelligent people I’ve ever run across. Your posts gave me the courage to stop the runaway train of unnecessary invasive tests and potentially a lot more. So, here I am, like you, almost 11 years later, doing active surveillance and feeling absolutely fine about my choice. I still have to fend off the occasional aggressive pushy medical personnel who try to bully me, but luckily, a lot of that noise has diminished as I have proven my point, that active surveillance is a legitimate approach. All I can say is, Thank God for you and for all the other women here who have decided to think for themselves and do their homework on this subject rather than jumping through hoops.
I am so sorry to hear about the loss of your parents….I know what a trying and painful time it can be to handle such events. You can’t be all things to all people or work on a blog non-stop. You have a life to live and you are living it! I wish you continued health and success in 2022 and look forward to you writing a book on these issues. You are a true blessing and have truly found your mission in life!
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Thank you so much for your kind and appreciative sentiments. I am taking it in as a big hug! Although we have never personally met, I feel a deep bond with you. I am so happy you have been able to continue on your path and I so appreciate you sharing your story and insights as you do from time to time. You are equally intelligent and angelic and a blessing! Thank you for joining me on this wild ride! I feel like many more are finally joining us 🙂
Donna, I am so touched by your kind remarks. I also feel a deep bond with you, even though we have never met. That’s what makes the internet so amazing, that people who are on the same wild ride, or path, can make such a huge difference for one another. Definitely, BIG hug to you! Stay the course and stay strong! You are the BEST!
Thank you Donna! You are a bright star. Keep shining. Look forward to your book! -#OwnYourHealth
Thank you so much!!! 🙂
I’m really glad to read that you are doing well, 12 years later, and your blog is helping me a lot.
I’m 41, just got my first mammo in December, was called back for a diagnostic mammo, and then was told about suspicious calcifications and that I needed a biopsy because they were worried about it. I was so scared to think that I had cancer, and they didn’t give me the option of waiting 6 months, so I just blindly and numbly did the biopsy on Jan 3., 2022. It’s been over 7 weeks and I’m still not healed…it was much more invasive that I anticipated, and I just hate that I have 2 markers in my breast now…forever. I’m worried the pain will never go away.
The biopsy result was benign, with severe atypical hyperplasia bordering on DCIS.
Now they want to do a surgical biopsy, which as you know is really a lumpectomy, which in my case would be removal of 50% of the breast…so in that case they are recommending mastectomy. WHAT?!?! Mastectomy when I don’t have cancer?!
I have been worried and confused to the point of being sick to my stomach. I am definitely seeking a second opinion. It feels absolutely INSANE to remove a breast that doesn’t have cancer.
Anyway, the breast surgeon explained that atypical hyperplasia can co-exist alongside DCIS which can co-exist alongside invasive breast cancer…and that’s why I should do the surgery. I’m not convinced. And I’m sure if I DID do the surgery, then they’d say I need radiation just in case!
They are recommending genetic testing and MRI with contrast. But I think they would be injecting the contrast directly into the breast, and as I’m still in pain I don’t want to do that, at least for now. They are really rushing me…even though they say I have “weeks” to decide. (Yep, weeks.) And I’m not sold on the genetic testing, either.
What I’m curious about is…if you could go back, would you have still had your surgeries, knowing what you know now? I know it’s hard to answer that…
Also, what do you think about thermograms? I am also going to look into whole breast sonogram. I have extremely dense breasts.
Hi Sara, Knowing what I know now, I would not have started mammograms at age 40. I would not have had any surgery or biopsies. Even Dr. Esserman told me should would not have recommended surgical biopsy for me when I had ADH after needle biopsy. I have done a couple of thermograms. They did not show anything, yet I had low grade DCIS. This tells me that low grade DCIS is not anything of concern. I have been doing only SonoCine ultrasound for the last 5 years because I trusted the radiologist who was very honest and certain that I had no invasive cancer. Even if something suspicious ever turned up again, I would choose a radical detox like Gerson therapy and more alternatives before considering surgery. Definitely no radiation or drugs either! I did not do genetic testing but I did have Oncotype for DCIS and DCISionRT — both came back LOW risk biology. So in my case I feel I was over-scared, overdiagnosed and overtreated. Several doctors were saying mastectomy or at least another lumpectomy plus radiation and drugs. The fear and coercion is very strong. I knew in my gut this was all overkill and all my research proved that it was more likely overdiagnosis/overtreatment. Time has proven me right and all those scary statistics wrong. Once they get you with the fear it is very hard to dial back, but it is possible. For me, I had to stop going to the fear-mongering docs and I had to focus on holistic health, nutrition, support and positivity for my path. I eliminated a lot of toxic stuff including toxic people. Take your time and review my FAQ page and resources.
I was so grateful to get your reply so soon! Thank you!
I will pour over your blog more, and I will reach out when I think of questions you might be able to answer.
I watched an interview with you and another woman — whose name unfortunately I can’t remember, and I can’t find it again! — and she said how she had DCIS in one breast…and then several years later developed IBC in the other breast. And her doctor said, you have DCIS in the other breast, but we don’t worry about that. That was so shocking to me…since I’m being recommended mastectomy! I wish I could remember her name, but perhaps you remember that interview?
Hi Sara, I think it was Cynthia in this interview….https://dcis411.com/2020/10/01/awesome-interview-inspiration-for-dcis-411-informed-choices-and-healthy-living-over-fear-fear-fear/
Keep digging for the truth and the truth will become crystal clear. xoxo
Hi Donna and everyone,
An update on me…it’s now 14 months after my core needle biopsy and I am still in pain, every day. Some days are better than others. I see a mental health therapist and a physical therapist to cope (along with doing other therapies on my own like castor oil pack, etc.) I’m hoping to one day be out of pain, but I don’t think it will happen sooner than the 2-year mark, which will be Jan 2024.
My advice to everyone is to not let the mammogram industry terrify you into rushing into something that doesn’t seem right or make sense to you. My breast (and chest and arm) is now in a worse state than it was before the biopsy.
Very sorry to hear Sara. Thank for sharing your advice/warning. Hope you are feeling better. Big hug to you.