“I had to pause and reflect. My surgeon’s recommendations had evolved from offering a double mastectomy, to then suggesting a single breast lumpectomy, and finally agreeing that active surveillance was reasonable. This all because I asked questions and pushed back."
My DCIS and Why I am Waiting
By Larissa Thessaly
It was shortly before Christmas in 2016. The doctor said, “you have breast cancer” and my mind froze. “You will need surgery and can choose between a double mastectomy or a double lumpectomy”. We discussed radiation and hormone treatments. My prognosis was excellent. I was asked to schedule surgery. The conversation lasted 30 minutes.
I was in shock, frightened and vulnerable. Fortunately, I could never decide on surgery without careful consideration.
I asked about obtaining a second opinion and was told that was an option but normally used in rural areas lacking expertise and I would need to go to another treatment center (the truth was that second opinions should be encouraged and were available within the same treatment center). I wanted to do research before deciding. My surgeon said that was fine but treatment was “straightforward” and not to dig too deep as it would confuse me.
I spent Christmas feigning normalcy with a plastic smile hiding my stress. Was I going to die?
My surgeon was correct about one thing. The more I researched the more concerned I became about the recommended treatments and the logic being used to perform approximately 60,000 surgeries a year. I learned that treatment of DCIS is anything but “straightforward.”
I learned that in 2009 the United States National Institute of Health suggested that doctors stop calling DCIS cancer. I learned that all DCIS cases are not the same and some cases have extremely low risks of mortality (at or near the risks in the general population) and a very small percentage of cases are life-threatening.
I learned that doctors lack the ability to know which cases of cancer in situ are life-threatening and which are harmless. In my case, there was no effort to verify if I was a high risk or possibly at extremely low risk. I imagine that many other patients have been marched into surgery without a second opinion or any further discussion or evaluation.
I was never told that there are three studies in progress trying to determine if active surveillance is a better option then surgery for low-risk DCIS.
I was never told that despite 30 years with approximately 60,000 cancer in situ operations each year, performed to prevent a progression to invasive cancer, there has been no associated decline in invasive cancers. Hmmm.
I was never told that many clinicians view cancer in situ as similar to prostate cancer where “active surveillance” has already replaced surgery as the standard of care for many patients.
As a DCIS patient, my focus is on survival. I want treatments that prevent death from breast cancer. I was never told that my doctors are focused on preventing reoccurrences even if those reoccurrences are not life-threatening. Doctors will remove DCIS that may be harmless, and remove it again if it reappears.
I was never told that Radiation Therapy and Hormone Therapies have no impact on mortality. No impact on mortality, but they do have side effects.
No one told me that approximately half of the very small percentage who die after treatment for DCIS do so without cancer ever appearing in their breasts and that it does not matter what treatments they receive, they still die. Thankfully, this represents a very small percentage of cancer in situ cases.
One day I believe that the medical profession may determine which cases of DCIS are life-threatening and which are harmless, but until they do I realize I need to do my own research and make my own decision based on the best evidence I can find and whether surgery is worth it to me.
My first challenge was to determine the nature of my DCIS.
I consulted with a seasoned and highly respected pathologist who reviewed my biopsy slides and provided a focused individual consultation. His findings were critical:
1. My DCIS was low risk
2. The fibroadenoma (lump in one of my breasts) was benign.
These findings contradicted the original pathology report and changed everything.
I had a conversation with my surgeon regarding these findings. Her initial response was that we no longer needed to operate on the breast with the fibroadenoma but still needed surgery to remove the DCIS in the other breast. During this conversation, and as a result of my research, I asked for my surgeon’s view of active surveillance. The response, “Active surveillance is always an option.” I pushed back and said, “I did not ask if it is an option. I want to know your opinion.” Astonishingly, the response was “I think active surveillance is reasonable in your circumstances.”
I had to pause and reflect. My surgeon’s recommendations had evolved from offering a double mastectomy to then suggesting a single breast lumpectomy, and finally agreeing that active surveillance was “reasonable.” This all because I ask questions and push back.
My surgeon was now accepting active surveillance as my choice of treatment, however, the evolution in thinking troubled me.
I really wanted an answer to a simple question. What is the chance of my DCIS killing me?
Surprisingly, no one can answer this question for me or any DCIS patient with any degree of certainty.
However, there are some clues.
There is a study that looked at misdiagnosed cases of DCIS that were left untreated and gives us a glimpse at what the result of not treating DCIS may be. Shockingly, the study showed that nothing happened to 78% of the women with untreated DCIS. Seventy-eight percent of the women lived out their lives without any cancer and died of other causes.
Another important fact that I learned is that invasive cancer, that appears after a DCIS is diagnosed, almost always appears with the same characteristics of the DCIS. For instance, if you have low-risk DCIS and it progresses to invasive cancer, the cancer will most likely be a low risk (i.e. highly treatable and unlikely to kill you).
The best estimates that I obtained from a breast cancer specialist for mortality caused by my specific DCIS if it were to appear as invasive cancer, was “less than 5%.”
Combining these two statistics (a 22% chance of getting invasive cancer, and a 5% chance of dying from it), the probability of me dying from my DCIS would be 1.10%. According to the American Cancer Society, a female in the general population has a lifetime risk of dying from breast cancer of 2.62%. My calculation is admittedly based on the best available educated guess, but giving a margin of error it would take a 26% chance of getting invasive cancer and a 10% chance of dying from it to match the 2.62% in the general population and significantly higher percentages to become statistically significant in comparison to the general population of women.
The best evidence available indicates that my chance of dying from my DCIS is likely no more then that of any women in the general population yet I am a cancer patient given the option of a double mastectomy.
There may be a good argument for operating on someone with a mortality risk at that of the general population, but I have yet to hear one.