In August 2009, Donna Pinto, from San Diego, was 44, in excellent health and happily married with two boys (7 and 9) when she went for a routine annual screening mammogram.
She was "surprised, but not worried" when the radiologist told her there was an area of concern and they would like to get some more magnified views and a biopsy. However, after the biopsy, she was told she had DCIS (Ductal Carcinoma in Situ) and would need surgery, specifically a wide excision, to remove it. A week later she was told that in fact she had ADH (Atypical Ductal Hyperplasia), but that the surgeon wanted to do a wide excision to determine if there was any DCIS.
Two months later, the wide excision was performed and a week after that, Donna was told she had been upgraded to DCIS; "which is 'stage zero' breast cancer." She was also told "although it is considered 'pre-cancer,' we treat it as if it is cancer."
It was suggested that Donna have a partial mastectomy plus seven weeks of daily radiation. Instead, she chose to research DCIS herself, and ultimately to choose a wait and see approach - active monitoring, first with dedicated breast MRI and then a specific type of ultrasound, along with doctor visits - rather than treatment. "Over the last nine years, thankfully all has been clear. I feel healthier, wiser and more grateful than ever," she says.
"The problem with a term like 'stage zero' cancer is that it lumps all of DCIS together as one condition and one stage," she says. "This is not the case. There are 3 grades of DCIS and differing levels of risk for each grade to become a true invasive cancer, yet they are all currently treated with the same aggressive protocol which is also the same treatment protocol for stage 1 invasive breast cancer."
For Donna, "over-diagnosis and over-treatment of breast cancer is a real travesty in women's healthcare. Many women are not aware they may have been over-diagnosed and over-treated. Fear sets in instantly with the word 'carcinoma' and a cascade of events happens quickly. There are often severe physical, emotional and financial hardships women and their families experience - and many of these women have or had a condition that was not a threat to their health or life."
Women, she says, "deserve to be properly informed about the benefits and risks of early detection as well as the benefits and risks of all treatments."
In the years since Donna's diagnosis, she has found attitudes changing. "For the first few years, my views seemed extreme to many women in online DCIS support groups and there were some heated debates. In 2015, there was a noticeable shift. I was invited to share my story and perspectives in various major media outlets and suddenly more and more women were writing to me. In 2016, I was invited to be a patient advocate on the Comet Study and Precision (www.dcisPRECISION.org), to distinguish low-risk DCIS from high-risk. Being involved in these multi-million dollar high-level DCIS research projects has brought a new level of credibility and respect."