Patients and Caregivers - A Patient’s Story


A Patient's Story

As I approached my 73rd birthday, I remember reflecting on the fact that I had reached my seventies with no major health issues.  I had no idea that was all about to change.

I have been married for over 45 years, have three grown children, three grandchildren, and I have practiced law full time with the same firm in New Orleans for over 51 years.

A few years ago, my older daughter was diagnosed with triple negative breast cancer in her right breast. After hearing the diagnosis, it took no time for us to spring into action. As is the case with any issue affecting my family, I took the lead in identifying the experts in the field, in order to find the right treatment for my daughter. Shortly after discovering the lump in her right breast, she underwent a lumpectomy and started a tough schedule of chemotherapy, followed by radiation treatments.

A year after her initial cancer diagnosis, we learned that she now had the same aggressive cancer in her left breast.  Again, we sought out expert advice and did our research.  We all agreed that a double mastectomy and breast reconstruction, followed by more chemotherapy and radiation was the best way to reduce her risk of another recurrence.  My daughter has been cancer free for some time now.

The next year, my family was given the news of yet another cancer diagnosis, only this time I heard the words, “YOU have cancer.”

During February and March 2012, I was having discomfort in my abdomen.  While it was not very painful, I was concerned enough to schedule an appointment with my gastroenterologist.  First, he scheduled an ultra sound of my abdomen.  That showed nothing.  Since I still had the discomfort in my abdomen, a CT Scan was scheduled.  After the CT Scan was completed, I headed to a previously scheduled and unrelated appointment with my internist.

While driving home from the internist, my doctor called on my cell phone.  He said that the CT Scan reflected enlarged lymph nodes and that he wanted me to come in the next day so we could decide how to proceed.  I asked him whether the enlarged lymph indicated cancer.  The answer was yes.

I had always wondered how I would react if I was told I had cancer, and when I got the news, I really didn’t have a reaction.  I answered the call from my doctor while driving and remained calm. After all we have been through with our older daughter, my emotions were quite muted when it came to my own cancer.

The day after the cell phone call, and following a meeting with my GI doctor, I met with a surgeon at East Jefferson General Hospital in Metairie, Louisiana.  After the surgeon felt an enlarged lymph node in my neck, he immediately scheduled a date for surgery.  During that surgery he removed the swollen lymph node in my neck.  Pathology showed that the removed lymph node contained cancer.

My family and I had been through this before and awaited the results of a biopsy, so I could start treatment as quickly as possible. Unfortunately, it was not as forthcoming this time.

The pathology laboratory at East Jefferson indicated that I had an "undifferentiated" cancer. Based on this report, it was possible that my original cancer was breast, salivary gland or squamous cell carcinoma.

My family and I were not expecting a complicated diagnosis. It felt like the floor had dropped out from all of us. Mentally, we all had a game plan for treating one type of cancer.

Shortly thereafter, I had my first PET Scan and visit to my Metairie oncologist, Dr. Laura Brinz.  Based on the PET Scan results, Dr. Brinz told me that I had cancer of unknown primary (CUP) and that this unknown primary cancer had metastasized to lymph nodes.

Little did we know that it would take more than nine months to learn the identity of my primary cancer, since the CUP diagnosis was not a clear conclusion. What we did know in that nine month period was that the cancer had already metastasized to lymph nodes in my abdomen, groin and neck, while the primary cancer (such as Colon, Kidney, Liver, Breast, etc.) was not known. This time I was facing a battle and had little to no information to guide my doctors and me.

Frankly, I had never heard of an unknown primary cancer nor did most of the people with whom I discussed my illness. Many thought I was joking. Who knew that in this day and age a patient could be diagnosed with metastatic cancer, yet the primary site of the disease is not always obvious? In fact, as I have learned since, I was one of the approximately 3-5% of cancer cases diagnosed as CUP annually in the United States.

My initial concerns grew deeper when I learned that, generally speaking, the best method of treating a cancer is by using a chemotherapy medication that attacks the primary cancer. Without identifying the primary cancer, an oncologist, even one who specializes in unknown primary cancers, sets the treatment plan on some medical assumptions and perhaps a little guesswork.

Instead of immediately initiating an appropriate treatment, I felt as if I was on a scavenger hunt.  Over the course of eight weeks, from the time my cancer was discovered in mid-April, we looked to various specialists and hoped that each test would provide the answer.

Dr. Brinz suggested that I make an appointment with a cancer of unknown primary specialist at MD Anderson Cancer Center in Houston, Texas. Before my visit at MD Anderson though, because the pathology report indicated a possibility of breast cancer, I had a bilateral mammogram and ultrasound, among a battery of other exclusionary tests. There was no sign of breast cancer, and still no explanations.

While the tissues were re-tested and sent to Anderson, the uncertainty about a diagnosis, plus the results of more tests showing more cancer throughout my body, only added to the stress level.  I do not like to wait, but there was no option in this case.  MD Anderson would not even schedule an appointment until I had more tests to rule other things out.

In June 2012, I started my visits to MD Anderson, and have continued almost every three months since.  An additional test was performed on a tissue sample from the previously removed neck lymph node.  It was determined that I had a 55% probability of breast cancer, a 31% probability of salivary gland cancer, and an 8% probability of squamous cell carcinoma. Based on those probabilities, the MD Anderson oncologist started me on a cycle of chemotherapy with two medications that would, among other things, attack breast and salivary gland cancer. My chemotherapy treatments did not actually begin until eight weeks after my initial diagnosis.

My family and I hoped the specialist would offer more insight into my situation, but so many questions remained. While she was able to offer a chemotherapy treatment based on what was known about my cancer, she also gave me a prognosis of two to four years.

After completing six rounds of IV chemotherapy and seeing some reduction in my metastatic cancers, my MD Anderson oncologist suggested a 10-week chemotherapy break.

It was during this time in late December of 2012, that I found myself trying to push through what had become more frequent bouts of insomnia. I could not sleep, so I got out of bed, and went to my study to use my laptop.  I turned to the internet, but not for conducting my own medical research which I knew was ill advised, especially with the lack of information relevant to CUP patients like me.  I had a serendipitous event occur while browsing Facebook.

My cousin Eric had posted a story about the Connecticut school shootings of the previous day.  One of the people commenting on Eric’s post was another cousin, Ken. I had never met Ken, but was interested in my “long- lost” relative. Being curious, I clicked on his name to get to his Facebook page.  There I discovered that Ken was the President and CEO of Rosetta Genomics.  Knowing that genomics has to do with genes and that genes play a large part in the treatment of cancer, I decided to check out Rosetta Genomics’ website.

I learned that Rosetta Genomics is an Israeli company with various cancer tests.  When I used the website’s drop down menu, I discovered that one of their tests, now known as the Rosetta Cancer Origin Test™ identifies primary cancers which previously were determined “unknown”.  I thought genomics, that’s cancer, that’s me. Seeing the cancer origin test, I said to myself, that’s me, too!

Being excited about this discovery I called Ken on Monday morning.  We played telephone tag until Tuesday morning.  

Ken explained what the Cancer Origin Test did.  Arrangements were made for the pathology department of East Jefferson to send some remaining tissue from my removed neck lymph node to Rosetta Genomics in Philadelphia for testing in their lab.

A few days prior to my early January 2013 visit to MD Anderson, I received a call from my local oncologist’s office.  The Rosetta test had determined to a 90% certainty that my unknown primary cancer was breast.  

I was very ecstatic for two reasons. First, instead of receiving a shotgun approach to treatment, my doctors could now focus on one cancer, just breast cancer.  Second, I felt positive as to my treatment; for the first time I was optimistic that my life expectancy could well be greater than two years.

As a Cancer Unknown Primary (“CUP”) patient, I was told that the mean life expectancy was 2 to 4 years.

This confirmation came at the best time possible—just days before learning that my original chemotherapy regimen was not as successful as expected. The January scans showed that not only had the metastatic cancers on my abdominal lymph nodes grown, but also showed evidence of metastatic cancer on my spine for the first time.

My MD Anderson oncologist felt that the results of the Cancer Origin Test were a great help in that it reflected breast cancer to a 90% certainty.  Accordingly, she had a number of chemo regimens in mind to treat my breast cancer and only breast cancer.

As a result, I am now on a chemotherapy that is directed only towards breast cancer. Thanks to the Rosetta Genomics test I now have targeted treatment options!

It is scary enough to have a cancer diagnosis, but to not know the primary cancer increases the stress exponentially. Since receiving confirmation that my cancer originated as breast cancer, it feels as if a weight has been lifted from my shoulders, as well as my family’s. By no means does this mean I am cured, but when dealing with what appears to be a greatly reduced life expectancy, each day is important. Having that knowledge makes all the difference, especially when it means there is confidence in my diagnosis as well as my treatment plan.

The Rosetta Cancer Origin test has been the turning point in my own experience with cancer. It is my hope that these tests are available to help other similar cancer of unknown primary patients and that the number of unknown primary cancers decreases. It was not too late for me, and it is not too late for others. I only wish I had discovered Rosetta Genomics earlier—eliminating not only a number of unnecessary tests, but much of the emotional suffering my family and I have all been through over the last fifteen months.