Saturday, July 24, 2010

DCIS Diagnosis? At least get a second opinion.

Stages of cell changes that occur when normal ...Image via Wikipedia
When it comes to your health, YOU are your own best advocate. I recently found this out the hard way. In January of this year I went in for a routine mammogram that turned out to be anything but routine.  My doctor did a biopsy and sent it off to a pathologist. His diagnosis: ductal carcinoma in situ or DCIS.

What is DCIS? It's a type of early stage breast cancer located in the milk duct(s). In situ, I learned, is Latin for "in place". In the world of cancer this is a good thing because it means that the cancer cells are contained within the breast's milk duct, and haven't broken out and infiltrated to other areas. The Wikipedia image above illustrates the type, placement and progression of cells from normal to invasive breast cancer.

DCIS has become one of the most commonly diagnosed breast cancers.  It is also sometimes referred to as Stage Zero. To add to the confusion, some doctors don't consider DCIS cancer at all. Yet, the treatments for DCIS are typically the same as those for early stage invasive cancers. Most doctors I spoke with used the terminology ductal carcinoma in situ. Whatever it's called, when you hear you have cancer it rocks your world.

After my doctor called to report the pathology diagnosis of DCIS, I started thinking about how my life had been completely altered by one individual's assessment of my biopsy. It occurred to me that everything hinged on that pathology report. After the initial shock wore off, I found myself in a state of denial. However, in my case denial turned out to be a good thing because it motivated me to get a second opinion.

I'm fortunate to live near a university hospital and several large medical centers with expert physicians. Still, I decided to seek a second opinion from a pathologist outside of  my area. I learned that it's not uncommon for local patholgoists to support each others diagnoses.  As a result, it's important to get a second opinion from a pathologist who is at least associated with a different hospital. I chose the expertise of  Dr. Michael Lagios, an independent pathologist located in California who is experienced in the pathology of  DCIS. His diagnosis differed from that of the first pathologist. Now, I felt I needed a third opinion to break the stalemate so to speak.

My third opinion came from a group of doctors affiliated with a local hospital, but not from the same hospital as the first pathology report. They all agreed that mine was a tricky case, but that's where their agreement ended. They were split in their diagnoses.  My case was then presented to a tumor conference.  Ask your  doctor if they attend these sessions which are usually held monthly. At the very least, it is important that they are discussing your case with other experts. The consensus of the tumor conference was that they leaned more toward the second pathologist's opinion.

Needless to say, trying to get a diagnosis was a very frustrating, time consuming and emotional journey, but for me it was absolutely necessary! I realized that sometimes doctors really don't have all the answers. I was fortunate. My radiology oncologist, Dr. Mark A. Engleman, didn't scorn or dismiss me. He didn't diminish my need for a third opinion.  He supported me and encouraged me to be my own health advocate. He recognized the importance of getting the most precise diagnosis possible BEFORE he started radiation treatment. Not all doctors feel comfortable when put in this position. I can't say enough about his care and professionalism.

I'm still not sure I feel I've received an absolutely definitive diagnosis. One thing I do know for certain. When it comes to DCIS pathology there is sometimes a gray area. It isn't always a clear cut, black or white situation. Unfortunately in my case the uncertain diagnosis has made decision making about treatments more challenging. The up side is because I sought these additional expert opinions I feel I can make a more informed evaluation and decision regarding treatments. This approach worked for me. Having said that, I'm still working toward feeling okay with the uncertainty surrounding my diagnosis and the treatment decisions I made.

The Dallas Morning News ran a New York Times article this week that hit a nerve for me. Stephanie Saul's  article discusses the difficulties of diagnosing DCIS and she shares one woman's compelling journey from misdiagnosis to treatment in the video below. Sadly, the woman in the article lost a quarter of her breast and later learned she didn't have cancer. Perhaps if she had sought a second opinion, she might have been spared that trauma and loss. If I can share one thing I've learned from my experience it's this - when it comes to DCIS, or really any diagnosis, it's important to be your own health advocate and consider a second opinion.


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