We Talked...

Earlier this week I met my friend, Sandy, for lunch. Sandy and I first meet when we attended the Gynecologic Cancer Support Group meetings at our cancer center in 2007. We were both diagnosed in 2005 with stage 3 serous epithelial ovarian cancer. We became friends and have stayed in touch even though Sandy now lives half the year in the Florida Keys.  Since she returns to NJ for the summer, we took this opportunity to get together.

Our lunch conversation was not about politics or the heat wave. Nope we talked about our gynecologic oncologists and our nurses. Even after more than ten years, those doctors and nurses still play an important role in our lives. Both our doctors are practicing in different locations now. So we talked about what went into the decision to stay at our cancer center or follow them to their new locations. Not an easy decision at all.

Then we talked about how even 11 years out,  we still worry about a recurrence. We laughed about how we can't multi-task any longer because when we do, we forget things. We weren't talking about forgetting where we left our keys or glasses. We were talking about finding the right words / names for things. We talked about how on some days we still need to nap because we are too exhausted to function properly. We talked about how our toes are still numb and how we can literally trip over our own feet- and it is not the shoes we are wearing.  We talked about how we still get nervous when we need to have our blood drawn for our CA-125 level. We talked about gaining weight. Do you feel bloated? ( One of the signs of ovarian cancer.) We talked about how neither of us have had a CT scan in over 2 years. Should we get one? We don't want to expose ourselves to the radiation but we know that for us that is the only way we will find a recurrence. Decisions, Decisions.

I talked about my advocacy work and she talked about her paintings and recent gallery exhibits. We talked about our families. We have been blessed and we have accomplished a lot over the past 11 years.

Then we talked about Pam and Sharon and Rita Kay and others from our support group. We can't understand why we are two of the lucky ones- women who have lived ten plus years after an ovarian cancer diagnosis. Sure we try to exercise more and eat better - less red meat , more fruits and vegetables but nothing dramatic.

Honestly, we don't know why we are still alive... and why our friends are not...eleven years later.


Dee
Every Day is a Blessing! Blessed to be celebrating my 11th cancerversary on July 29th.

One Characteristic - Age

 A study looking at characteristics of women who are long-term survivors of ovarian cancer was recently published in the journal  Obstetrics & Gynecology . The study " Characteristics of Long-Term Survivors of Epithelial Ovarian Cancer" is currently pre-published
online and I am happy to say you can read the entire article for free. So I took the opportunity to download the article and read it and looked at the data.

This study is a retrospective study of over 11,500 women in California diagnosed between 1994 and 2001 with epithelial ovarian cancer. The California Cancer Registry was used.  Thirty one percent of the women in the study were long term survivors. Since I reached 10 years of survivorship last month I was interested to see how my characteristics matched those of women in California who were long term survivors. 

The study found the predictors of long-term survival were 
younger age ( 18-50)
early stage 
low grade 
non-serous

Out of all those predictors I have one characteristic - younger age - and I barely made that one. I was diagnosed one month after my 50th. 

I found it interesting that 1/3 of the long term survivors were women who were  late stage /high grade serous. The authors explained this result as better surgical techniques that offered these women advantages as well as possible IP or BRCA mutation status. But that information was not available in the data set studied. 

I appreciate that the authors made note of the issues associated with long term survival. The paper ends with this paragraph- 
"  Long-term survival may bring its own challenges beyond worry about recurrence. Studies have shown that patients with ovarian cancer are challenged with problems of anxiety, fatigue, sexual, social, and financial problems, which should be amenable to appropriate interventions. These studies highlight that physicians, especially those who provide primary care, should be prepared to address cancer survivor- ship needs in this group of patients.
"

It would be interesting to see if similar studies were conducted in other states if the characteristics would be the same. 
Dee
Every Day is a Blessing!