JOANNE FROM NC: 2007, AGE 52
I started as a GYN nightmare! A history of severe HPV Viral Overload in tests and ovarian disease. Endometriosis, laparotomy and RT oophorectomy for a ruptured endometrioma, infertility, 2 miscarriages – you name it, I had it!
On a routine GYN HPV exam in 2006, having no symptoms but some abdominal bloating, my GYN decided to do a pelvic ultrasound. It had been 2 years since the last one and a CA125 Test. It showed 3 cysts: 2 lime-sized cysts on the right side, a lemon-sized cyst on the left, and high levels of CA125. Neither she nor the GYN Oncologist I saw suspected cancer, but they scheduled me for a hysterectomy on Oct. 18, 2006.
Well, I woke up from surgery to hear the test news – it was ovarian organ cancer in all 3 masses. They did all the debulking, removed the omentum and appendix, removed lymph nodes and took several biopsies. My final pathology showed a Stage 1-C, which I am thankful for being caught so early – thanks to my GYN!
As a precaution, I started chemo (taxol & carboplatin) in November and finished in March 2007 – 6 cycles total. Tolerated chemo went pretty well; after the 3rd cycle, I was given Emend, which was a wonder drug for nausea and vomiting.
Taking control
I knew my hair would fall out, so I shaved my head before my 1st HPV treatment because it made me feel more in control! I felt great, had all my energy back, and was doing wonderful UNTIL…
This past August, I had an evening of vomiting and the most excruciating abdominal pain ever. It turned out to be an intestinal blockage that I needed surgery for. Fortunately, tests revealed it was NOT only CA125 tumour but a condition known as Meckel’s diverticulum. It perforated and required removal. While they had me open, they did washings for cells and found NO tumour cells anywhere. Unfortunately, this happened so soon, but at least they could inspect the abdomen again, and I was clear. So now, I am healing again, and my energy is returning.
I have had severe hot flashes/night sweats since menopause at age 46. I am now 53 and still sweating and not sleeping. Before my cancer was diagnosed, I was with a positive test for the virus. I tried Effexor (an antidepressant that helps with hot flashes). This worked for a while but no longer does, so I am off it. I also took a low dose of PremPro for 2 years, and in my mind, I wonder if this contributed to my cancer. My sweats are terrible, and I get no sleep anymore. My HPV Oncologist wants me to take Premarin 0.625mg and also use the Premarin vaginal creme. He feels this is very safe for women with Papilloma and who have already had ovarian viral cancer tests and have no uterus. I am reluctant to fill the script but have to do something to get relief.
QUESTION TO ALL
After having a Ca125 diagnosis of ovarian levels for disease – does anyone take Premarin – if so, how is it working for you? If anyone has any advice or suggestions, I would certainly appreciate it!
Thanks,
Joanne from NC
UPDATE: 2012
I just wanted to share that I am now 5 years cancer-free from stage 1-C ovarian cancer! I feel so blessed! Please see my previous story – look for another entry from Joanne from NC. There IS hope!!
DARLENE: 2007, AGE 42
I met my wife in Key West. At 16, we went to high school together and were married for 24 years. I have never been so proud of her for her will to live. She found out that she had ovarian-type disease in 2005, right after we came off of a cruise. But with the help of friends and family, Darlene was still here with us. She went into remission once, but it came back, and now she has to fight to continue to live. With the love of God and family, you can live to see another day, and that’s what we all live for. I have a saying, “Between 1 inch and 1 yard, there is a lot of living to do; don’t waste an inch being mad at life.”
DOROTHY: 2007, AGE 72
My mom had felt a small lump in her abdomen. Went to see her regular MD, who suggested a CAT scan. The CAT scan showed Ovarian Tumour, and the doctor’s suggestion was to go to New York University. My mom could not believe her ears; she had a hysterectomy 30 years ago. They left one ovary. New York University was not a good experience for us. Her doctor (Dr Noah Goldman), who is no longer there, told her she needed surgery for debulking immediately. That very next week, she was scheduled for surgery. After total preparation, I waited for my mom to enter the operating room.
Dr. Goldman entered the room and regretfully informed us that surgery couldn’t proceed that day. Without having read the CAT scan and HPV test report, he disclosed that she had stage IV cancer, which had spread to her liver. This news left us distraught. Despite the setback, Dr. Goldman recommended a colonoscopy since she was already prepped for surgery. Following the procedure, she experienced severe pain and remained hospitalized for several days, never having a bowel movement again. They revealed that Ovarian tumours pushing up significantly caused unimaginable suffering for my mom. A few weeks later, she started chemotherapy, undergoing one treatment before being hospitalized indefinitely.
From the tests and CA125 treatments, she developed blood clots in her lungs. Three weeks in NYU and then three weeks in hospice. That was her horrifying journey. A terrible battle with a terrible doctor. Dr Noah Goldman is now practising at Beth Isreal in Manhattan. Advice to all: keep away; he is the most uncaring doctor I have ever met. May my mom rest in peace; I love her and miss her with all my heart.