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Registry Members

Natalie’s Story:
I support the registry because I know how powerful it will be for future generations to be able to be screened for this disease and make lifestyle choices to reduce their risk of getting ovarian cancer. - Natalie
The registry is a powerful research tool that will help scientists understand this disease as well as prevent it in future generations.” - Stephanie (Natalie's Daughter)
In July 2009 I had experienced some bloating and fullness. I called my GYN and got an appointment scheduled for 2 weeks. Before that appointment I was at work having lower left sided pain that made it difficult to work so I called my primary Doctor. They sent me to the ER to have a Catt scan. It showed an Ovarian Tumor and I was scheduled to see Dr. Lele at Roswell Park. At our appointment he confirmed it was ovarian cancer and scheduled surgery.

In August 2009 I had Debulking surgery and then had 6 rounds of Chemo. In 2010 I returned to work. Unfortunately later that year I found out I had developed a surgical hernia. After my repair surgery I found out I had positive washings of cancer. I was then scheduled to receive a onetime therapy of internal radiation p32. After my radiation I was in remission for 4 months. At my routine check-up I received news that my CA125 was extremely elevated. Since that news I have been in treatment with a variety of treatments. What you don’t see with the facts of my treatment is the tears, laughter, love, and support that is in all of those treatments and recovery!

Christine's Story:
I support ovarian cancer research because I am a survivor, I think women can be diagnosed a lot earlier, I was diagnosed at 46. I believe young women should have the opportunity to be diagnosed earlier so it is not a death sentence.” - Christine
My story starts with an annual exam at my gynecologist. During the exam we discussed the fact that my monthly cycle had changed, instead of every 28 days like clockwork it was every 26 days and it had changed it was different, that is the best way I could explain it. My doctor said it would be best to do a sonogram to see what was going on. I had the sonogram and it showed that there was some thickening in my uterus and that I should have a D&C and so it was scheduled for December 10, 2010. I had the procedure and the Dr. said all went well and everything looked good.

I got a call on December 14, 2010 and the doctor told me that I had Uterine Cancer and that it was stage 1, so not to worry…Not to worry easy for her to say, she just told me I have cancer….So I made a series of phone calls my husband, my mom, my sister, my friends…….and so my journey with cancer begins……..I made an appointment with my gynecologist to discuss the next step and she told me that with uterine cancer I would need to have a hysterectomy and that would be the only treatment needed. She also told me that I was young and that if I wanted to I could keep my ovaries and she referred me to a surgeon. My sister had been given the name of a Dr. at Roswell as being the best and we made the appointment at Roswell instead of with the surgeon my Dr. recommended.

The appointment was December 21, 2010 and the Dr. said and I quote “Everything Out” and I agreed, I felt comfortable with him, confident with him. So the surgery was scheduled for January 3, 2011 and all went well with the surgery, my treatment was basically done, I was told to come back in 2 weeks for a checkup. Well I went back at the 2 week mark for the checkup and was told the surgery went well, and my healing was going very well, but……but what? Well the pathology had come back and as well as having uterine cancer I had ovarian cancer, also stage 1 and a separate cancer from the uterine, wow my head is spinning again…….What!!!? So I am told I will now need to have chemotherapy and that it would start in two weeks and I would need 6 rounds of chemotherapy. Chemo sucked!!!!! It didn’t suck while you were getting the chemo that was actually very relaxing, it was the effects after…It was worth it though, every ache and every pain, the baldness, the weight gain (yes weight gain) they now give you steroids so that you don’t get nauseous, the chemo brain, all of it was worth it, because I am here telling you my story and feeling great about life.

I also had a great support system my mom, husband, sister, friends, and coworkers were an amazing support to me and without them the fight would have been a lot harder. My chemo ended May 17, 2011 and I just celebrated my 2 year mark this May…..My story I am told is unique in the fact that the ovarian cancer was found so early and found as the result of another cancer. Ovarian cancer is usually found much later and the results are not always so great. I want to tell my story if only to help one other woman make a decision that might save her life…as my decision did……

Susan's Story:

There has been an increased awareness of breast cancer.  Women need to be just as cognizant about Ovarian Cancer!  Being a part of the registry provides opportunities to improve health care and research about Ovarian Cancer. - Susan
In 2006 I was abruptly diagnosed with ovarian cancer in a hospital where my husband and I were coldly told “There is no hope.” In what became an unusually quiet but crowded emergency room that lacked privacy, the words echoed in my head. Shortly after, I was connected with Roswell Park Cancer Institute. With help from Roswell’s finest, I fought back. I had surgery and eight months chemotherapy. I remained cancer free until February 2007, when I had a reoccurrence requiring another 14 months of chemotherapy. In March 2009, I was once again informed I was cancer free. Throughout it all I remained hopeful and thankful for Roswell Park Cancer Institute. Everyone was so positive (and I mean everyone from parking attendants to physicians). Their spirit was contagious and encouraged me to keep a good outlook. This past March I reached a significant milestone. I’m five years cancer free!

 

Kathleen's Story:
I am proud to be part of the Familial Registry, I am hopeful that someday there will be a cure for genetic ovarian cancer, and being part of the Registry allows me to be part of that history. - Kathleen
Kathleen A. Maxian
Dx Stage IIIB August 2009
Recurrences 3/2011 and 1/2013

Kathleen Maxian brings a passionate and personal perspective to her role as President and Co-Founder of the Western New York Ovarian Cancer Project (WNYOCP). After being diagnosed with the disease in 2009, Maxian learned that a simple genetic test could have predicted the likelihood of her cancer.

Because of the inherited BRCA 1 gene mutation, Maxian was pre-disposed to breast and ovarian cancer that, in fact, could have been detected through comprehensive genetic testing and prevented with prophylactic surgeries.  Those genetic tests are now readily available to American women thanks to a 2013 US Supreme Court decision that declared it illegal for any biotechnology company to hold a patent on a gene, which up until then had been the situation.  Ellen Matloff, a Yale Professor and Director of its Genetic Counseling Center said Maxian played a role in that groundbreaking decision. “She was able to show how gene patents affect real people, she was very courageous and generous with her story.”  This landmark case that will potentially impact millions of women and save lives.

Kathleen co-founded the WNYOCP in 2012 with a mission to educate women on the symptoms and risks of ovarian cancer, as well as provide hope, support and networking opportunities to those diagnosed with ovarian cancer.  Maxian promotes education and advocates for improved diagnostic tools through speaking engagements and media appearances.

Member: National Cancer Institute Gynecological Steering Committee
Member:Patient Advisory Committee of the RPCI and University of Pittsburgh Cancer Institute’s Ovarian Cancer SPORE Program.
Member: Roswell Park Cancer Institute’s (RPCI) Patient and Family Advisory Board

2013 Recipient of the Cindy Melacon Spirit Award by the Ovarian Cancer National Alliance 2014 Recipient Women Who Move the City Award by Big Brothers Big Sisters of Erie County

For further information, visit wnyovariancancerproject.org