My kidney cancer diagnosis came at the very young age of 27 in the year 2002.  Very shocking to say the least. Just prior to my diagnosis, I felt bloated quite often and uncomfortable, but without pain. One night while lying in  bed, I felt something very hard on the right side of my stomach, in my kidney area and made an appointment with my internist who informed me that it was likely stool. My uncle had passed away from kidney cancer, almost 4 years prior and I was very concerned about it being cancer, but the doctor assured me that kidney cancer was not common in young women, and mostly affect men over 60. I spent the next month taking laxatives on the weekends per my doctors suggestion. When I returned for a follow-up visit, the doctor wanted me to take a prescriptive laxative, but I held my ground and refused, and insisted on an ultrasound.

Thinking back it felt unreal that I was in this situation, life and time seemed to stand still, the ultra sound was scheduled, and the next day I had it done. The ultrasound showed several cysts on my right kidney. With those results in hand I went back to my internist and it was decided that I follow up with a CT scan, which turned out to be one of many. The CT scan showed a very large “bloody cyst” on my right kidney. The radiologist recommended not to worry, and to repeat the CT scan in three months and worst case scenario, they would have to drain the cyst.

Hearing that was a load off my mind initially. However it did not sit right with me, considering the family history and my age, so I requested a biopsy. My internist had a connection to a hospital in NYC and helped me to get an appointment the very next day. That was the longest day of my life, and was the beginning of my story. In one day I received a biopsy, a cancer diagnosis, a surgical consultation, and a second opinion.  The surgeon said to me, “if I’m going to save your life we need to do it now”, and on the way out of his office he told me to stop at the chapel and say a prayer. That night my husband and I came home from the hospital, completely numb.  All of our close friends and family members showed up at our home to offer support. The next day my two closest friends came back and brought me to my parish where I met and spoke with our pastor.  The day after that I had a radical nephrectomy where my right kidney was removed. In the end I had an 8 centimeter, papillary type II tumor, grade 3. The tumor was attached to back bone and the vena cava, and muscle.

Thankfully, the cancer did not spread but my prognosis was not great.  The expectation was that the cancer would return and my life expectancy would be 5 years, which was a really hard pill to swallow. The truth was there was very little known about my particular kind of cancer at that time. I was just told that it was very rare and that there were no FDA approved treatments available. I was only 27, and newly married. I was not willing to sit idly by and accept my fate. I knew that I needed to do something, so I spoke to one of many oncologists. One particular oncologist offered a cancer treatment that worked on clear cell patients, with the hopes that it would work as an adjuvant treatment for my cancer. I figured it was worth a try.  That treatment was high does interleukin 2 which was administered in the hospital, 5 days on, 7 days off and 5 days on, all while in an ICU setting.

Once the surgery and treatment were completed and the pathology all in, my surgeon informed me that research is being done at the National Institute of Health (“NIH”) on papillary tumors which may be linked to a specific gene related to HLRCC.  I reached out to the NIH, and after testing positive for the HLRCC gene,  I became the fourth subject in their protocol.  Interestingly, just six months prior to my diagnosis they discovered the HLRCC gene. Shortly after entering the NIH protocol, a doctor and a nurse from NIH came to my home in New York and tested all of my family members, which included, grandparents, parents, siblings, aunts, uncles and cousins. As it turns out my uncle who passed away also had a papillary tumor, his pathology was positive for the HLRCC gene.

At the NIH, I learned that uterine fibroids and skin lesions were also associated with the HLRCC gene. It was all starting to make sense now. I had a myomectomy in 1999 and a hysterectomy in 2008, due to fibroids, all associated with the HLRCC gene.  With all that has gone on medically, I was blessed with two beautiful children, born in 2004 and 2006.  With all the psychological effects that come with a rare cancer diagnosis, with no treatments, and at such a young age, with the support of my family and friends we decided to clear out all of the noise and do our best to maintain a positive attitude. Good news with each scan followed with a celebration of life.

I was fortunate to learn the reason “why” I got cancer and I was even more fortunate that my surgeon was able to remove all of the cancer.  Between prayer and medicine I was determined to live my life. I assisted in running fund raisers for kidney cancer, continued working, raised children, and I advocate where I can, particularly for NIH funding. Since my diagnosis, so many viable treatments have come to the market and people with metastatic kidney cancer (HLRCC in particular) are living longer and with greater quality of life and more importantly hope.  HLRCC patients, while still considered rare, are no longer being told that there are no treatments available. In my 21 years fighting this cancer I can say it’s amazing to see how the science has evolved. 

A little over a year ago this cancer claimed another one of my family members, which was a tremendous loss that I can’t even describe. My cancer journey is not over and it will never be. I visit the NIH yearly, where they monitor my remaining kidney with an MRI and keep me up to date on all the developments. I’ve had cysts on my remaining kidney since my cancer diagnosis and so far they have all been benign. I also have family members with the HLRCC gene, a child, a parent and a sibling. For all four of us, knowledge is power.  We are all monitored with an MRI yearly and know that if something suspicious is shown that it can be taken out. I am a testament to that and I hope I provide hope for many out there that have the gene. Yearly monitoring by MRI by an HLRCC expert is key.  I also hope my story empowers people to advocate for themselves and their loved ones.  Speaking up for yourself can be your super power