Tell us your story

We want to hear from YOU. It can be a personal story or even just your experience at one of our events.It's so important to share your story with others. It might help someone else get properly diagnosed or even find strength during treatment or while taking care of a loved one. 

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"On the date of the teal walk this year will be the 2 anniversary of my moms passing. We thought that it was a sign that our family should be involved. In April 2008 my mom, Elizabeth Marino was diagnosed with ovarian cancer at the age of 48. After a long struggle with treatments she succumbed to this terrible disease. She was a wonderful mother, wife, and friend to many and she is greatly missed. Last year was our teams first year doing the walk and it is known in our huge family now that this is an event that will be supported annually by the Marino's. We will walk in teal tye-dye for all the women who are struggling with this disease, families and friends who have lost loved ones, and those who have passed. Above all we will be walking With Love for Liz!"

~Kristina
Oceanside NY


In January, 2016, I began experiencing sever pain in lower left side. It got to the point that I would just go home after work and lay in my bed with a heating pad until I fell asleep. I went to my primary and we both felt like I had pulled a muscle in my side somehow. I had a follow up two weeks later to check on my pain. At that time the pain had gotten to the point that when I was sitting and went to stand I would have to wait until I heard a pop before I could stand. My primary ordered a CT to be done the first week of February because while pressing on my stomach it was rock hard. The following Monday I went to have my CT done. I was told it would be a few days before I would hear from my Dr. I went to the gym that night and while putting my shoes on and talking to my friend, my Dr.'s office called and said that I had an appointment in three days with a gynecologic oncologist for a mass in my pelvis. My heart sank and I instantly started hyperventilating after hearing that. I went to the Gyn Onc and he said my report stated the mass was only 3 cm and wasn't that concerened about it and felt good about it. He began pushing on my stomach and felt how hard it was and sent me to have my CA 125 levels checked and to have an ultrasound down. The ultrasound tech had trouble finding my left ovary because the "3 cm" mass was actually 30cm and was not only blocking the view of the left ovary but extended up toward my rib cage. My CA 125 levels came back as 199.4 which alarmed my dr because at the age of 27 they should only be around 30 at most he said. He began telling me to prepare to have a full hysterectomy done and that cancer staging will most likely take place during the surgery. March 1, 2016 is when we did the surgery and the tumors were bigger than what the ultrasound first shown. The one on the right was about 40 cm long and completley covered the right ovary and the left one was the size of a soft ball and had actually started "eating" away the wall of the ovary, which they suspected was why I was having sharp pain in my side. The tumors were Stage 1 IC2. I lost my ovaries and fallopian tubes but he left my uterus since it had not spread there. I remember waking up from surgery with my dad telling me the news that I would not be able to have my own kids. I think at that point I was done with the emotional roller coaster from the past month and just shut down. I pretty much bottled all my emotion up and pretended I was ok with everything. I grew tired of the looks I would get when people came to visit and they learned about the not having kids. It is a sympathetic look that is frustrating to see. I can't blame them, they cared. I did not have to undergo any chemo or radiation. At my 3 month follow up in June my CA 125 levels were checked again and they went from 199.4 to a 10. At that point my Oncologist said I was officially in remission. The sense of relief I felt hearing that was amazing. I am beyond grateful that they found everything when they did. But I find it hard to find someone to talk to about it because none of my friends no what I am going thru and it is hard to explain how it is hard to watch a movie where someone is pregnant. It has been 6-7 months now and I am still working thru everything and trying to not become to paranoid when I feel pain in my pelvis or back.

~Lauren
St. Louis

 

 



"On January 2, 2007 I was at home on Christmas break with a tummy ache and leg cramps. When my dad felt my stomach, he said that it felt like a football, so he took me straight to the hospital. After hours of tests, the doctors just could not figure out what was wrong with me. Finally my mom got off work, and when they told her they didn't know what to do so she said ovarian tumors run in our family. So they did a CAT scan and yup, that's what it was, but there was just something weird about it. After an ambulance ride 50 miles in a blizzard, we ended up at the children's hospital. The next day, I had surgery to take out the tumor and one of my ovaries. Luckily, after I was all better that's when they found out what that weird thing was: it was cancer! So now, almost 5 years later, I am 11 years old and have a 7 inch scar and I can tell you my story. So now when someone asks me why I have a scar this is what I tell them."

~Meghan
Houston, AK


Happy Mother's Day. Today I sit in the hospital with my mother who is losing the battle to ovarian cancer. 4 year fight and now day 12 without food or water. Susan is 62, my bestfriend, bold, beautiful and graceful. I could only hope to be the women she is. The last days have been a struggle and painful to see. Pray that the pain ends soon.

~Michelle
  Brooklyn, NY



In April of 2008, my wife, Marie Acanfora, 55, had been feeling extremely tired and was suffering from stomach discomfort. She conyinued teaching as the school year was approaching the end. She scheduled an appointment with her Gastointerologist in June, just to make sure that everything was ok. She suffered from irritable bowel for years, and wanted to be certain that that was all it was. Her doctor sent her for CT scan, as xrays proved something visible in the abdominal area. Her colonoscopy 9 months earlier showed nothing. By mid July, the results of the CT Scan warranted another colonoscopy, which revealed what was thought to be colon cancer, specifically in the sigmoid area. Her doctor also scheduled an appointment with an OB/GYN doctor whom he recommended.

It was determined that a colon resection was necessary, and that her ovaries should be removed. Marie had had a hysterectomy 15 years earlier, but her ovaries were not removed. Surgery was scheduled for early August, so that she would not miss our second son’s wedding on August 1st. Marie was operated on in August. Her surgeon explained that the cancer had spread to a section of the small intestines and her lymph nodes, in addition to the colon. Resections were done on both intestines, and the ovaries were removed. We still thought Marie was faced with Colon cancer. After an 8 day hospital stay, I took Marie home, and we followed up with the surgeon the next week. At that time we were advised to seek an oncologist, as he recommended chemotherapy. Before she even met with her Oncologist, her OB/GYN doctor requested to see Marie immediately. I left work and we met with her that afternoon. Results confirmed that the cancer was in fact Ovarian, which had spread to the large and small intestines, and was present in 32 out of 37 lymph nodes that had been biopsied. She was advised to seek an Ovarian cancer oncologist at Sloan Kettering as soon as possible. Her doctor told us then that Marie had a very aggressive cancer that was already in an advanced stage .

She met with the oncologist at Sloan, but we had already seen one on Staten Island. Marie opted to seek treatment close to home, as both doctors agreed on the type of chemo, the dosage, and the intervals of treatment. Marie was diagnosed at Stage IV and would begin a four month chemo regimen. She was a trooper through it all, even helping to prepare for the wedding of our 3rd son in November.

Her chemo was scheduled around the wedding, and Marie looked beautiful. Bald and exhausted, you would have never known what she had been going through. At 100 pounds she was determined to have a great time. Who would have known that on that day we would have danced together for the last time. We made it through 2 weddings, Thanksgiving and Christmas, making sure everything was done as it always had been done. We still celebrated Christmas Eve at our home with 25 family members as was customary.
Marie finished her chemo in January, and her February visit indicated that her CA125 marker was an 8. Sent home to celebrate, we bought a bottle of wine and spent a quiet evening together. Our four sons were thrilled with the news. Our oldest son was stationed near Somalia Africa during this entire ordeal, and his wife was always flying in from VA on weekends to be there for Marie. In the next 2 months, Marie’s hair began to grow back, and she managed to do things around the house. Still very weak and tired, she had to resign from her 22 year teaching career, 20 years of which were in Kindergarten.

By March, it was time for her first 3 month check-up. The news was devastating. We were told that her CA 125 was over 200 and that chemo had to begin immediately. Unfortunately, as we read and learned, Marie was considered Resistant. The typical treatment of Carboplatin and Taxol, did not work as Marie was platinum resistant. Topotecan, another drug, was to be administered every other week. We began immediately, but this drug completely exhausted Marie.

Her treatment continued for about a month when another obstruction was discovered. Rushed to the ER from the doctor's office, Marie had another resection to help her eat and drink. By mid July I took her home once again, and she recovered nicely, awaiting to resume chemotherapy. Within a week, Marie was rushed back to the ER, as her bloating and discomfort could not be controlled. Another surgery was performed and her oncologist advised us that he would administer the Topotecan daily for 5 days, rather than once a week. We hoped this intensive, aggressive treatment would show an improvement in her condition. The treatment left her exhausted and sick for a week. Her migraine strength headaches never stopped and no drug helped ease the pain. She remained in the hospital for 28 days. It just happened to be on our 32nd wedding anniversary, when her oncologist asked to see us both. A most compassionate man, he told Marie that the Topotecan administered for 5 consecutive days, did nothing to reduce her markers. She only experienced the negative effects.

He asked her if she knew about Hospice. The remarkable woman that she was had taken care of a dying mother and an aunt on Hospice, and was well aware of what our doctor was about to ask her. He told us that the one last drug had a success rate of about 2 %, but he would try it only if she wanted. She looked at me and smiled, and turned to her doctor and told him that she had had enough. It was time to go home and she would begin hospice care. It was just 12 months earlier when this entire ordeal began.
Our son managed to visit her once from Africa, and one of the newlywed couples who lived in Los Angeles, managed to get a transfer back in June. With her family and friends around, Marie's headaches went away and the vomiting stopped. Weak most of the time, she made the best of a bad situation. I took a leave from work to remain with her until the inevitable would happen.

The cancer continued to spread rapidly, and I helped drain her abdomen daily. Within 5 weeks, Marie's condition began to deteriorate very quickly. She had lost about 30 pounds and was not able to even keep liquids down. Hospice was summoned at 4:30 AM one morning, and I was instructed on how to help make Marie as comfortable as possible. Heroically, she selected clothes for her funeral, requested some special students of hers to serve at her Mass, and divided her jewelry for her nieces and daughters-in-law. I cried constantly, never letting her see. After all, she had been the bravest of all.

The next day would be the last time I was able to get her to the shower. When I got her to the bed, she asked me to hold her. The embrace was our last, and she collapsed from fatigue right in my arms. I put her in bed and put on her favorite music. Marie slipped into a coma the next day. She lived for four more days. At 2:45 AM on September 29, 2009, Marie lost her battle with this terrible disease.

I have managed to share what I learned with many of our friends and relatives, many of whom have requested an internal ultrasound from their doctors. We are so committed to the work OCRF does. I wish the publicity for this most dreaded disease would be right up there with breast cancer. I know all the facts – ovarian cancer survival rates have not improved much in 30 years. At a survival rate of 11%, I only wish major organizations would embrace our cause, as they have breast cancer, which these days has a much higher survival rate.

I appreciate the opportunity to share our story with you.

~Matthew

 NY



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