This week I got some frustrating news about the POSITIVE clinical trial I have been planning to participate in. I reached out to you all for your feedback on Instagram and after a lot of consideration, Mac and I have made a decision on how to proceed. I wanted to write a full post to catch you up on the situation and explain our decision.
When I learned about the Pregnancy Outcome and Safety of Interrupting Therapy for Women With Endocrine Responsive Breast Cancer (POSITIVE) trial over a year ago, it gave me the hope I needed to get through the remaining 12-16 months of our waiting period. It also helped quell our fears about the uncertainty of pregnancy after cancer, even though the study does not provide any guidelines or reassurances – it only collects data to (eventually) inform future practice. There was something about being a participant in a clinical trial that made me feel secure. I knew it was a false sense of security, but it was the mental comfort I needed at the time.
So as you all read about in my last post“Hope for a Family After Cancer”, I went off my endocrine (hormone blocking) therapy on Jan 1st and it is now time for me to enroll in the POSITIVE clinical trial. I was all set to enroll at my first fertility specialist appointment later this month and then I got a frustrating update from the study coordinator. I was told that I cannot participate in the study unless I switch providers and go back to my former hospital for care and the study blood drawers every few months.
For those of you who don’t know I used to commute an hour each way to work (at UNC Chapel Hill) and NC Cancer Hospital (UNC) was a 5 min walk from my office. That is where I completely my surgeries, and chemotherapy. This past August I started a new job in Cary (15 mins from home) and I switched to a new oncologist in Cary who I absolutely love. She is still part of the UNC system, and she is 10 mins from my house. You may have seen her in my photos from the Kendra Scott fundraiser for Young Survival Coalition back in October. She is an AMAZING supporter of YSC and the young cancer community in this area.
So, in order to participate in the study, I would have to switch back to my former oncologist (who is also an amazing doctor) and begin the awful commute to Chapel Hill. These appointments would be in addition to my normal primary care thyroid appointments, fertility appointments, and eventually obgyn appointments all in Cary and surrounding areas. This information really took me by surprise and threw me for a loop.
Participating in the study was always part of my plan, but now this wrench was thrown into the mix. So, I reached out to all of you on Instagram and polled you on the matter. As the results started rolling in, I started to panic. I thought I want you all to convince me to enroll in the study and yet as I started seeing the poll numbers I realized what my gut feeling was. I really wanted to hear that it was OK to not do the study. As I left work I really started obsessing over the decision. With the help from many of your messages, I began to mentally review the pros and cons.
Join the study
- PRO: Support the young survival community as a study participant
- PRO: Contribute to science
- PRO: Help other young women like me in the future have more guidelines for pregnancy after cancer
- CON: 45-60 min drive each way
- CON: More sick leave used for doctor visits that could be used on maternity leave
- CON: More stress about missed work, traffic, long waits for appointments, logistics
- CON: Pregnancy sickness/fatigue + driving = UGHHH
- CON: More wear and tear on my car/fuel costs
- CON: Forced to leave Dr. Sherrod who I have really bonded with
After mulling over this pros and cons, I was still torn on the decision and plagued with guilt. I felt like if I joined the study I would be sacrificing my precise time and disregarding my mental and emotional needs. If I didn’t join the study, I felt like I would be letting the cancer community down – all of you who voted for me to do the study and were trusting me to represent you.
So how did we make a decision.
- I talked to my girlfriends. As survivors (one of which is a new momma after cancer cancer) I trust these women to hear me out and give me their honest opinions & feedback.
- I discussed the topic with many of you. Your feedback, and insight mean so much to me. Thank you to each and every one of you who reached out to explain your thinking and help me see different sides of the equation that I hadn’t yet considered such as:
- Possible carsickness during pregnancy
- Exploring options with the study coordinator (travel reimbursement, mobile blood draw, other flexibility)
- Determine how much do they care about enrolling me, how much do I matter – financial implications, samples size, etc
- Self-care, whats best for me and the baby and my family
- I reached out to my former oncology at UNC Chapel Hill to make one last plea to participate from another location and see what if any modifications the study could make to enroll me.
- Last but not less important, Mac and I talked everything over as a family.
Mac always brings light to situations that I feel are so cloudy. I will be lost in a decision grappling with what I see as major obstacles and he looks at it and can make things seem so clear. He is big on leaving the decision in my court, but in his mind there was one clear priority here and that was ME. He sees my health as at the top priority, specifically my mental and emotional health. We both feel that this stage of the journey trying to get pregnant and possible fertility treatment will be stressful enough, without the added stress of more appointments and an additional commute. We also both acknowledged that my level of care would not change with this study. While I would love to contribute to science, my cancer care, my mental care and my future baby’s care are the most important things and not study participation.
So, it is after a lot of thought, consideration and reflection that I have decided not to enroll in the POSITIVE clinical trial. I am still holding out a little bit of hope the the study protocol office will work out a way to work with me and include my data, because I feel I am a prime candidate, but at the end of the day I had to choose what is best for me. I had to say no and that is a lesson in and of itself. I am still learning to prioritize myself and my body. With time learning to say no will help me protect myself and my future child and I know that is what’s best.
I still feel guilty that I couldn’t represent you all in this way, but please know that I will continue to be your leader and represent each and everyone of you in other ways. I will continue to fight for our community and I will continue to share my journey on this path to motherhood after cancer. I hope to continue to inspire young women like me and bring hope to all of you hoping to start a family after cancer.
I am currently looking into other clinical studies related to pregnancy after cancer and hope to write about my journey on other platforms as well. If you know of opportunities please share them with me so we can get this story and message out to many other women. I hope you will understand and support our decision and I thank you from the bottom of my heart for taking the time to share your insight and thoughts with me.
18 Comments