Reflections on Attending the OCFRA National Conference

In my last post I mentioned I was apprehensive about attending this conference. While I have learned a lot this weekend and met so many "teal sisters," I feel emotionally drained. I started this post at 3am because I cannot sleep. Even with a xanax. 

I learned that there are many long term survivors. I have met women who were 10, 15, even 20 plus year survivors. That gives me a lot of hope. I have also met many women who have had a much harder road than I. One who particularly stands out is the young woman with 2 small children who fought her way to diagnosis over 2 years. Her cancer has caused many other medical issues. She has had 29 different surgeries, and was headed back home to go back to the hospital after the conference.

I learned that I need to ask to have my tumor tested, because even though my own genetics came back BRCA negative, it is possible that my tumor is. That will make a difference in how I should be treated in the event of a recurrence.

I learned that 42% of IP patients cannot complete treatment because of the toxicity. Many of the women I met this weekend started IP but were not able to complete the entire course of treatment. 

I learned that there are fewer clinical trials for ovarian cancer than in years past, but that there have been many new treatments on the horizon.  This is partially due to a reduction in government funding. I have decided I would like to get involved with the advocacy arm of the OCFRA. This will involve speaking with representatives of various government agencies and elected officials. I already have had some practice, given that I participated in a press conference with Senator Dick Durbin.  I also learned more about how clinical trials work, so in the event of a recurrence I know what questions to ask.   

There were so many useful and informative presentations.  Here is the link to the presentations

Next year's conference is in Washington DC. I already have it on my calendar.