Patient Spotlight: Nancee Pronsati, Golden, Colorado
Nancee has been an ALK patient for the last 6 years, and she is an incredible member of the ALK community who is devoting her time and resources to multiple projects and endeavors within ALK Positive, Inc. This year, she is the Chair of ALK Summit 2022 which we are all looking forward to. We wanted to know more about her life and background and what motivated her to volunteer and make a difference.
1) Can you tell us a little about yourself, your personal and professional background, and your journey with ALK-positive lung cancer so far?
I’m married to a truly wonderful person; I’m a Mom, dog Mom, and most fun of all, a grandmom to 3. We live in Golden, CO where we are so lucky to have views of the mountains every single day. Although I guess I “retired” not long after I was diagnosed with cancer, I worked for a long time in the business world. My career was fun and diverse, starting as an Assistant Controller in the oil and gas industry and ending up working in Software in many roles from financial analyst to training to professional services to HR. Got my MBA along the way and was fortunate enough to have some fun opportunities in leadership positions.
My ALK diagnosis came in 2016, after about 2 years of bronchitis and pneumonia diagnoses. Because I had not smoked and had no other known risk factors, not one of the several doctors I saw ever considered lung cancer as a possibility. Surprise! Finally, I was sent for an X-ray, and that poor doctor had to tell me she had been slightly off in telling me she was sure it was “nothing”. She felt terrible! Paul and I actually got this news in an airport on our way to separate trips. It seemed logical to us to go ahead and go, so we did! Not sure how we sanely made it through that first weekend apart.
We were living in NYC at the time and a good friend provided us an introduction to a great pulmonologist who thankfully got me an appointment with Dr. Riely at Memorial Sloan Kettering. I had never heard of biomarker testing before this and my initial tests came back with no mutation, which was scary, but I had no idea why. Haha. But they pushed for another test which came back with ALK. Dr. Riely knew we were coming back to Colorado and graciously told me I should switch to Dr. Camidge. I’ve always appreciated his lack of ego and his genuine care in making that suggestion at a time before I knew how incredibly lucky I’d be to be a patient of Ross Camidge.
Crizotinib did a great job reducing my tennis ball sized tumor and shrinking the “innumerable” tumors in both lungs. That lasted a year until brain mets were found. Now I’ve been on Alectinib for almost 5 years and have remained stable. My gratitude for this time with my family and friends is immeasurable.
2) What is something you know now that you wish you knew when you were first diagnosed? What would you advise a newly-diagnosed patient?
I knew absolutely nothing about lung cancer when I was diagnosed, so it’s difficult to say what I wish I knew. I think I wish I knew that statistics (which were quite terrible 6 years ago) are just numbers and not to get hung up on them. Things change so quickly. My advice for someone newly diagnosed would be to make sure you know who the experts are for your type of cancer and where they practice. Get a second opinion from one of them if you are not feeling confident that your local oncologist is up to speed on ALK. This is the only Support Group I’ve ever been in, but if they are mostly like ours, join ASAP!!
Live your life - laugh a lot, make the plans, say the words. You are still you - you are not your cancer.
3) You are the main coordinator for the 2022 ALK Summit. This is the first year we are doing a hybrid (in-person and virtual) event. What is there to look forward to and what are you most excited about?
The Summits every year have been incredible. In my opinion, this year has a couple of uniquely wonderful elements. One is the return to an in-person event here in downtown Denver, CO - the appetite for human contact and connection is enormous after a couple of years of dealing with the ongoing impacts and isolation due to COVID. The second is that we are hybrid, so that everyone can participate, not just those who are able to come to Denver.
The Summit team (me, Amanda Nerstad, Kirk Smith, Colin Barton, Chel Gorombol, and Bill Westlake) is creating an agenda that combines important medical and research content with patient stories, videos and community. Dr. Camidge will be the keynote speaker on Saturday. The venue is beautiful and the entire event will be recorded and photographed by Keith Singer and his team from Catch it in Time - amazing partners of our cancer community.
4) You have served ALK Positive, Inc. as a volunteer in many capacities, including Board member, Fundraising Chair, and most recently ALK Summit Chair and Volunteer Coordinator. What is it that inspires you to volunteer, and do you feel that offering your time and skills has helped you cope better with your diagnosis and/or given you a new sense of purpose?
Over the years I’ve volunteered for a lot of organizations for a lot of different reasons. ALK Positive is unique in that I am not only a volunteer but I’m one of the beneficiaries of the amazing work that is done by SO many talented volunteers from all over the world. It’s an incredible group effort where I’m proud to play a small part. We have a pretty big mountain to move in trying to extend and improve the lives of people with this diagnosis - it takes lots of money (go fundraising!) and lots of human hours to make progress. I volunteer because I truly believe that real life-changing/saving impacts are achievable, and in fact some have already been achieved, and it feels important to me to give my time and skills wherever I can and while I can. I’m not sure if it helps me cope with my diagnosis better - possibly. It definitely has made me feel like this diagnosis had a purpose or a reason in my life - I can look beyond my own situation and work for us all.
Interview by: Christina Weber