Sunday I logged 14.5 miles for CSCAZ participants past, present, and future. Today, it is Monday, August 14, the final day of my 2023 Walking for Those on a Cancer Journey campaign. It is hard to believe a month of walking has flown by. Today I am delighted to share the story of Rachel Sackett-Putman, CSCAZ participant, volunteer, and newly hired team member.  Rachel recently delivered her cancer story at a National Ovarian Cancer Conference and she shares the script of that speech with us today.  Each of us who has been on a cancer journey has their own story.  Thank you Rachel, for sharing yours with us today.

“My name is Rachel Sackett-Putman. I am a North Jersey native, a proud University of Delaware alumna (go Blue Hens!), a lifelong fan of the New York Yankees and Giants and have been calling the Valley of the Sun, Scottsdale Arizona, my home for the past sixteen years. On Monday, my awesome husband Brandon and I will be celebrating our 8th wedding anniversary, and back home we have two amazing rescue dogs, Marley and Chloe. I love exploring new places and cultures, live music, a delicious meal, and most importantly enjoying all the endless outdoor activities that desert living affords us the opportunity to do like camping, paddle boarding and hiking.  Because when you have been through what we have, you treat each and every day as a gift.

I thought the worst thing I’d have to endure in 2020, at the young age of 38, was in January, when I lost the most incredible man I have ever known, my Dad. So many friends and family thought his loss could be a sign that perhaps he was making way for the child my husband and I had been yearning to have. After visiting my gynecologist, and at a loss as to why we weren’t getting pregnant, we were referred to a fertility specialist. Following a litany of tests, the fertility specialist found a mass on my right ovary and quickly referred me back to my gynecologist to investigate further.  After several cancellations and advocating for myself, my first laparoscopic surgery in April 2020 was finally deemed essential and would uncover much more than my regular gynecologist was equipped to handle. As a result, I was referred to a gynecologic oncologist who then ordered my first CT scan, which not only confirmed an ovarian mass, but also a breast mass. I was almost immediately diagnosed with stage 2A ER positive breast cancer after completing my first (and last) mammogram, breast MRI and simple biopsy in May 2020. But we weren’t done yet as my ovarian mass would not be so easy to diagnose. All this while the fears of COVID swept across the globe.

A follow up PET scan lit up like 4th of July fireworks and my gynecologic oncologist knew he had to schedule another essential surgery as soon as possible. So, in June, I went in for my second surgery where they removed my right ovary, tube and appendix. My pathology could not be confirmed in the hospital and thus was sent to what my doctor called the Supreme Court of Pathology, Duke University, as we anxiously awaited the results.   In the meanwhile, not even three weeks later, I went in for my third surgery to complete my bilateral mastectomy and reconstruction. My husband watched care instructions on YouTube since the mastectomy classes were put on hold. I mean if he can learn to re-tile the bathroom on YouTube, he can surely learn to be my caregiver.  Soon after that, our world completely stopped, as if dealing with the pandemic wasn’t bad enough as we found out my second diagnosis, Stage 3A low grade serous carcinoma ovarian cancer. Two cancers?! How could this be?  I had recently completed my genetic testing which showed I was BRCA 1 and 2 negative, even being of Ashkenazi Jewish descent. Typically, the relation between ovarian and breast cancer in Ashkenazi Jews is significant with 1 in 40 carrying the mutation, which is 10x greater than the general population. I was a cancer unicorn and quickly achieved national cancer case registry fame!

Once we received our dual diagnoses, we went back to the fertility doctor to see what, if any, options we had left.  The ultrasound showed no follicles present on my remaining ovary so we were unable to explore any type of egg retrieval or preservation methods, back to the gynecologic oncologist we went to finish what he started with my fourth surgery, consisting of the removal of my left ovary and tube, cervix, uterus and omentum or whatever that is. So here we were in Arizona, thousands of miles away from my family in New Jersey, navigating a global pandemic and grieving the losses of my dad, fertility and two cancer diagnoses, while desperately trying not to go down the rabbit hole of Google for answers!

Through the magic of online support groups, I had learned there was a doctor at MD Anderson in Houston, who had seen the most women in the world, yes world, with my specific type of low grade serous ovarian cancer.  So instead of enjoying the summer preparing to grow our family and celebrating our five-year wedding anniversary in Jamaica, we masked up for a 19 hour road trip, where we were off to see the to see the Wizard in Houston for a second opinion.  At least we were finally getting out of the house as the 80’s throwback movies and a myriad of coloring books were growing stale. 

Even with a team of three oncologists in Arizona, the proposition of chemotherapy was up in the air as I discovered that due to the lack of research and information on low grade serous carcinoma, a rare subtype of ovarian cancer that typically affects younger, pre-menopausal women, the effectiveness of chemotherapy post debulking surgery was questionable. I had already learned, because breast cancer is leaps and bounds in its research, awareness, prevention and treatment above ovarian cancer, that my breast cancer treatment did not require chemotherapy through the use of an oncotype score. That’s right, breast cancer has a specific test that uses statistical data to predict YOUR likelihood of recurrence.  It’s not some obscure number like a 70% recurrence rate in 5 years, which was likely given to most of us regarding our ovarian cancer, but an actual number based on your individual case.  This is an important reminder to tell your doctors that you are NOT a statistic, YOU ARE YOU, and that’s who they are treating.  So we left Houston with the knowledge that the Wizard, agreed chemotherapy would not benefit me at this time in my cancer journey.  My husband and I were very grateful that we did not have to endure the19 hour drive back to Arizona with two differing opinions!  For me, this was especially critical to understand since sadly so many women build a platinum-resistance to chemotherapy and as a result this no longer is a treatment option. I feel blessed that my team of doctors agreed chemotherapy was not the right choice at the time, keeping it in our back pocket if and when I recurred.

The year ended with more tests and my fifth surgery, which was another reconstructive surgery from my bilateral mastectomy.  I also learned that despite not carrying the BRCA 1 or 2 mutation, I did have an APC mutation, which puts you at a higher risk for colon cancer.  I learned through critical family medical history conversations with my mother that my maternal grandfather did in fact have colon cancer, and there may be a correlation between colon and ovarian cancer.  To wrap up the literal shit show of a year, I had the pleasure of enduring my first colonoscopy.  It was quite the happy holidays for my entire family as I urged everyone to get their colonoscopies too!

I had one last surgery this past June 2022, another reconstruction, and am hoping that the surgery portion of my cancer journey is finally over. While I was meeting with one of my doctors, telling her about the last few months of my life, navigating the many ins and outs of this chronic illness and insurance fights, I asked her, “Who helps these older women who are battling this disease all by themselves?”  “Who helps these frail women that I see at the cancer center or in my support groups?”  The average woman diagnosed with ovarian cancer is 63, people who are in a completely different time of their life than my husband and I.  She looked at me and said, “Rachel, that’s why you have to!”  And from that point on, I knew my new purpose in life and what I needed to do next.  I’ve found meaning in advocating for my fellow teal sisters by building awareness for this incredibly personal and horrible disease and I will continue to do so until I no longer can.  As Viktor Frankl says in his book, Man’s Searching for Meaning, “Those who have a ‘why’ to live, can bear with almost any ‘how’.”

So, for now, I just focus on the good days and enjoying life to its fullest.  I’ve been on letrozole, an aromatase inhibitor, for the last two years as daily maintenance medication and will continue to be on it indefinitely. Letrozole, like most medications for ovarian cancer, is actually a breast cancer drug.  I do my best to manage the awful side effects of letrozole, including hot flashes, bone and joint pain, brain fog, neuropathy, extreme fatigue and lack of sex drive. My doctors always remind my husband to blame it on the hormones, not the person. I never thought that when talking to my mother we would compare notes on what menopause feels like.  Like so many of you here in the room today, the picture-perfect idea of what my future would look like had become just a faint dream.  Luckily, I received a beautiful gift from a friend who reminded me of one of the most important lessons I’ve learned along this journey.  The gift was a pencil and the note read, we tend to write our lives in pen, trying to predict our fate and every path along the way. But the truth is we should be writing our lives in pencil.  Life is dynamic and ever-changing and we can’t simply account for or control everything.  But, if we’re open to it, really open to it, life can be just as beautiful, maybe even more so, even if it doesn’t go according to your plan.” Rachel Sackett-Putman

Thanks Rachel, for sharing your story, and giving me the honor of walking for you today.  CSCAZ friends, be sure to meet Rachel the next time you are in the Palm Lane CSCAZ center in Phoenix. Cindy