April 2021, at age of 37, I received a devastating diagnosis of incurable stage 4 lung cancer. I would find out I had tumors throughout my lungs, bones, brain and lymphatics. A biomarker test ultimately revealed I had a mutation in a gene called RET, which has caused my cancer cells to grow out of control.
Miraculously, a drug that blocks RET was FDA approved only one year prior to my diagnosis, and I was able to start this as first line treatment. The response has been nothing short of a miracle and has kept my cancer stable, and kept me alive, for the past two years.
When I was first diagnosed, I felt completely lost. We didn't know at first what "type" of cancer I had. I didn't really fit the profile of thyroid cancer, which was suggested by my doctors at first. My largest tumor was in my lung, but I was so young and never smoked, so surely it couldn't be LUNG cancer...
The cell type appeared to be an aggressive neuroendocrine carcinoma, which can occur in any organ/ tissue of the body. Everything I read about neuroendocrine carcinomas included words like "dismal," "poor prognosis" and "unknown." I learned that these types of tumors often have little research and few new treatments over the years.
The one silver lining, the golden needle in the haystack, was finding that RET mutation. I not only found the Achilles heel of my cancer, but I found people just like me--younger adults, mothers, healthy individuals, etc.--who had RET mutations driving their cancers and were now living longer and better with selective targeted therapies against RET.
Unfortunately, these brand new, miraculous, targeted therapies do not work forever and do not work for everyone with RET. Eventually, everyone doing well on these treatments will progress. Inspired by the late Aliye Bricker, MD, a fellow RET+ cancer survivor and founder of RETpositive, I have become involved in advocacy for RET+ cancer as a way to bring a sense of purpose to the pain--to support research for newer, better treatments for us all.
Recently, my cancer has been starting to progress. My targeted therapy is keeping progression slow, but a new mutation has developed which will mean a new cocktail of treatments are likely in my future. This gives me hope. However, it feels like I'm living on the cutting edge of research, and I must hope that research will advance faster than my cancer does in order to see my children grow up.
Despite exciting and accelerating progress in research, some big challenges remain for my particular rare subtype of cancer.
1. Research on lung cancer, despite being the #1 cancer killer (more deadly than colon, breast & prostate cancers COMBINED), is massively underfunded. This is thought to be due, in part, due to stigma associated w/ smoking. The majority of RET+ lung cancer is found in younger women who have never smoked.
2. RET driven lung cancer is ~2% of all lung cancer, so of the reduced amount of funding lung cancer receives, most is allocated to the more common subtypes.
3. RET is still the the new kid on the block, and therefore, research needs to catch up to other well-known cancer types.
4. RET is a rare mutation causing cancer in a broad range of different cancer types (lung, thyroid, pancreas, colon, etc.), so while collectively it RET represents 0.5 to 2.5 percent of all cancers, amounting to millions of cancers worldwide, It remains a small proportion of any one particular type of cancer, which means it is harder to study in traditional clinical trials.
My cancer remains a unicorn. A new, rare subtype of cancer, w/ a stigma attached to it.
For those reasons, people living with RET+ cancers need to take matters into their own hands. This fundraiser will do just that! By donating, your money helps fund research specifically for RET+ cancer. This research will help find new treatments so that people like me can continue to live their lives for hopefully many more years to come.
Thank you! My family and I are truly humbled & grateful for all your support.
With much love, Hilary
