DiAnne Estes ~ Stage 3C ~ Louisville, KY
My name is DiAnne Estes and I am a 66 year old Stage 3 Ovarian Cancer Papillary Serous Adenocarcinoma survivor. Since I was diagnosed at age 53, I have spent many years working, living and loving. Cancer can certainly humble you quickly and test your strength. I have been a hairdresser for 47 years and currently work 3 days a week. I have been lucky that there have been very few missed days of work. I contribute my cancer-free success to God, my wonderful husband Richard, my daughters Michelle and SuzAnne, my terrific friends and the many prayers that have been said on my behalf over the years. Here is my story…
In the months of October and November of 1999 I had a scheduled mammogram and Pap smear. Under direction of my GYN I had been taking Prim Pro, a hormone, for about one and a half years. Also, I had had a physical with my PCP which included blood work, and everything was normal. I had always kept current with normal screenings and had pretty much stayed healthy. Because I was over 50, I was scheduled to have a sigmoid scope. This test was very painful! The doctor completely ignored my feelings, but the nurse was very concerned. This test showed no abnormalities in my lower colon, but I think I had tumors on my ovaries at that time. This test, as painful as it was, should have been a red flag marker that I needed further testing.
Seven months later, in June of 2000, I awakened at midnight with labored breathing. My abdomen was extremely extended, but no pain. I went to the emergency room and after several hours was diagnosed with gastritis. When my daughter asked the young doctor why my abdomen was so large, he replied “how do I know your mother is not just fat?” This was on a Saturday and early on that following Monday morning I went to my PCP. He admitted me right into the hospital where I had surgery the next day by a gynecological oncologist. I had two tumors the size of grapefruits. One was wrapped around my colon and the other was around my ovaries. Because of this I had to have a colostomy. Two weeks after surgery I started on chemo.
Through the next several months I took 12 treatments of Carboplatin and Taxiol. M y CA 125 count was 2300 before surgery. It was coming down very slowly so I continued other chemo drugs such as Doxil and Topatecan for the next couple of years. Because the CA count was still not in the normal range, which is 35 or under, my gynecological oncologist did a second look surgery. With the results of a PET scan, he removed three “hot spots”. Also at this time, he was able to reverse the colostomy, which could not have come soon enough! It was nice to be rid of “Carol” my colon. After this surgery I took a maintenance oral chemo, Hexalon, for one year. At this point I had taken over 200 chemo treatments.
In 2009 my CA count started to elevate. I took Tamoxiphen for five months but it really did not help. I had another PET scan which showed a small spot on my diaphragm. This was removed laparoscopically and then I followed with nine treatments of Gemzar.
In October of 2010, I decided to go through genetic testing. I am an only child and my family was not riddle with cancer stories, so when I received the positive BRCA2 results we were very surprised and disappointed. The next step was for my 2 daughters to be tested. My oldest daughter Michelle tested negative and SuzAnne tested positive. SuzAnne followed through with preventative surgeries of a total hysterectomy in 2010 and a double mastectomy in 2011.
In the spring of 2011, my CA count started to elevate again. Through a PET scan, a small spot was detected in my bronchial area near the aorta. I was scheduled for laparoscopic surgery to remove it which then I completed 18 Gemzar treatments. This was a time when my GYN Oncologist started mentioning my potential to develop chemo induced Leukemia since I have had so many chemo treatments in the past 11+ years.
In the early spring of 2012, my CA count began to elevate. This time the PET scan showed 2 small spots; one between the windpipe and aorta the other deep under the collar bone. Since these locations are hard to surgically remove and are highly sensitive areas, the tumors cannot be removed. I started Gemzar again but decided that I needed to get a second opinion…
On August 27, 2012 I had an appointment at M.D. Anderson in Houston, Texas. I wanted to know if there was a drug better suited for the BRCA 2 gene. The doctor there was very complimentary of my GYN Oncologist and on all of my past treatments. She recommended that I take 3 more Gemzar treatments and then let my body rest. Because of carrying the BRCA gene it had been suggested that I have a double mastectomy. This doctor suggested that I put this on the back burner for now because the chemo I had been on would ward off any breast cancer.
In September 2012, my CA 125 count was 35 but I was afraid to “not” do anything, so I asked my GYN Oncologist about taking Hexalon, an oral chemo. Hexalon was a drug I took 10 years ago for one whole year and it gave me 6 years of remission.
In September 2013, I finished 1 year of Hexalon. At this time my CA count was 11.7 and was on monthly blood draws. On July, 17, 2014 I had a doctors appointment with my GYN Oncologist to review my recent blood draw and for my regular check-up. My results showed that my CA125 had edged up to 19. I know this is still considered to be within the normal range but as sensitive as I am to this test, it certainly makes me a little nervous because it is slowly elevating. All of my other blood work was normal and I feel fine. In fact my doctor is always surprised when I tell him that I am still working 3 days a week and living a normal wife, mom, and grandma lifestyle! My GYN Oncologist did feel that I should have repeat blood work and a PET in September (2014) and as always, we will make a plan from there.
A Special Thanks… I have been traveling this journey for 14 years and all of the days certainly have not been easy. I know that I am blessed and I continue to give thanks and praise to my family, friends, medical staff and to my wonderful and supportive “sisters” in OAK (Ovarian Awareness of Kentucky). In our monthly support group meetings we “discuss and cuss “J everything about our cancer. We learn so much from each other and I have made so many lifelong friends. My support group ROCKS!!!!!!! Come join us!!
Hugs and blessings, DiAnne