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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



Before I share my story, I must say I had the wondeful honor of knowing Louisa. She was one of the most bravest women I knew. She loved her family and life in general. She fought hard and with grace every step of the way. We met through our oncologist. I am forever grateful to have met her. She taught me so much, and because of her and the difference she made in making a difference, I push twice as hard to fight for me and every other amazing woman out there. RIP Louisa, you are dearly missed, and forever loved.

My name is Nanci Cacossa. I have cancer. Ovarian cancer. Stage 3C ovarian cancer. I lost my ovaries, uterus and fallopian tubes to this disease, but I'm not about to lose my life. No, I'm fighting with all I've got. And what I've got is great! My family, friends and doctors joined hands and hearts with me, and we built a circle of strength. Together, we are fighting. We have in our arsenal weapons that will help me silence this cancer known as the silent killer. Ovarian cancer symptoms are quiet. But if you listen carefully, as I did, you can hear the whispers. Please, read my story. Please, listen to your body. Please join us in The Circle of Strength and use your voice and donations to fund ovarian cancer research to silence the silent killer.

It was October 2008 when I felt a pulling sensation in my pelvic area after I emptied my bladder. As a diabetic, I don't ignore when my body is trying to tell me something, and it was telling me to go to a doctor. I went to my internist, who ruled out the urinary tract infection diagnosis I anticipated. The next day I was at my gynecologist's office, where I'd been seven months earlier for my annual visit. At that time, I received a full exam, including an internal sonogram, and was given a clean bill of health. This time, the internal sonogram shocked both my doctor and me. In a little over half a year, it seemed a four-centimeter tumor had grown on my right ovary. A transverse vaginal sonogram and CAT (Computerized Axial Tomography) scan confirmed it. I had a tumor on my right ovary. Whether it was benign or malignant could only be determined through surgery.

The next four weeks were chaotic, to say the least. Emotionally, I couldn't wrap my brain around the idea that I might have cancer. Intellectually, I told myself I would have a relatively simple laparoscopic surgery to remove the tumor and all would be fine. My dad and step mom, both cancer survivors, encouraged me to find the best gynecological oncologist surgeon available, just in case. I'll never be able to thank them enough for their advice.

On November 25, 2008, the best gynecological oncologist surgeon began a laparoscopic procedure that turned into an eight-hour full hysterectomy. When the scope showed the condition of not only my right ovary, but my left one as well, she asked for a scalpel. My right and left ovaries, fallopian tubes and uterus were cut out. While exploring my abdominal cavity, where ovarian cancer cells are known to float, she removed anything suspicious to send for pathology evaluation. The quick pathology assessment done during surgery confirmed her suspicion and my worst fear. I had cancer.

Oh, that pulling sensation I felt after emptying my bladder? It had absolutely nothing to do with my ovarian cancer, and everything to do with discovering it. When my surgeon began removing my uterus, she found my bladder was attached to it by the scar tissue my body developed after the C-section that delivered my son 14 years earlier. God bless that scar tissue. It spoke to me and I listened.

Two weeks later, I sat in my surgeon's office with my wonderful, supportive husband, Frank, and my parents waiting for the pathology results. The diagnosis was brief. Ovarian cancer, stage 3C. Words and images collided in my head and mind's eye. Cancer. Chemotherapy. Death. Husband. Children. Friends. Life. My father already buried one daughter, would he have to bury me?

It took me several days to come to terms with this new part of my identity. Cancer Patient. Fortunately, I quickly realized that while I couldn't choose my diagnosis, I still had a choice; I could fight or I could surrender. I chose to fight.

Based on tumor size, pathology reports and blood test levels, my doctors determined the best course of medical treatment for my cancer. Six rounds of Taxol and Carboplatinum chemotherapies. It was up to me to determine the best course of personal treatment. Based on who I am, my needs and wants, I decided not to go it alone. I opened my heart and story to my family and friends for support and encouragement. As I went through my treatments, I used Facebook status updates to update people on my status. I vented emotions, happy and sad, and posted pictures of myself in wigs, hats and simply bald. People replied with a constant stream of hearts, smiles, love and never-ending words of moral support to maintain my morale. My openness about my illness and honesty about what I was enduring was a huge learning experience for us all. The exchange and flow of information and emotion kept us strong so I could fight. Together we became a circle; The Circle of Strength.

Chemotherapy was very tough, but my cancer responded to it well and immediately. Ovarian cancer is monitored through different means. One is a blood test called CA 125. A woman's level should be 35 or below. Before surgery, mine was 129. After surgery, it came down to 54. After just one treatment, my level was 15. The CAT scan after my third treatment confirmed my body was responding positively to the chemotherapies. The medical and personal strategies were working!

On April 22, 2009, five months after surgery, I was told I was N.E.D. (No Evidence of Disease.) I fought the good fight and won. The cancer was gone!

What followed was bliss. We celebrated my daughter's Sweet 16 in May. The summer was what summer should be- busy and fun. Fall brought a Halloween filled with treats, and Thanksgiving was thankful, to say the least. The holiday season was imbued with a renewed feeling of comfort and joy.

In January 2010, my body whispered to me again. I was feeling pain in my lower left abdomen. Maybe I pulled a muscle? After 10 days of discomfort, I called my oncologist and saw him the following day. After examining me, running blood work and scheduling a CAT scan for the next day, he said he'd call when the results were available. On January 21 he called. I think he was as upset to say as I was to hear what needed to be said. It's back.

It's rare that I'm in my office alone, but I'm glad I was. I cried. I cried hysterically. I cried so hard that it was difficult to breathe. I was angry. I was sad. I was petrified. They'd told me it was gone. What happened? I played by the rules of cancer. I endured surgery and chemo. How could it be back? In what sick world does a sick woman get well only to be told she's sick again? My dear friend LCS calls cancer -the beast. How cruel can the beast be? Apparently, very cruel. During my short-lived remission, while I was being monitored, the beast was hiding under the radar of blood tests and CAT scans.

When I finally caught my breath, I knew I had to call my husband. It broke my heart to tell him, but I needed him. We agreed to meet at home and drive to the doctor together. The bad news was that a recurrence  is different from an original diagnosis. The good news was the CAT scan only showed small nodules and my CA 125 was at 42. However (a word that should be banished from the dictionary), because it was a recurrence, this round of chemo would be stronger and longer.

Facebook Status Update: Calling out to The Circle of Strength. My cancer has returned. Need support. Who's in? Everybody! All my family and friends were there for me. Once again, I was blessed with an outpouring of support, encouragement and love.

The following Tuesday, it was back to chemo. Taxol, Carboplatinum and now Avastin, which isn't a chemotherapy, but works with chemo to fight cancer. The following week, I lost my newly grown hair and generally felt like crud. Just as I felt better, it was time for another treatment. I didn't think it was time to develop an allergic reaction to Carbo, but apparently someone did. Now what? I need Carbo. Turns out it's common for an allergic reaction to develop after seven or eight treatments. Bingo, this was my eighth. Carbo would now be given over six hours on a separate day from other meds. On the bumpy road of cancer, I chose to think I merely hit a pebble.

In September 2010 (Ovarian Cancer Awareness Month), I was told I was, once again, N.E.D. A clean bill of health. It's a bill I gladly would have paid, if only I felt clean. Something in my gut told me the beast was lurking under the radar. I demanded periodic CA 125 monitoring. By December, the results showed the numbers creeping from 15 to 22 to 27. By January 2011, the level climbed to 72 and I was experiencing sharp pains in my upper right abdomen. The beast was back and it was time for a new chemo.

The Taxol/Carbos are platinum-based, this time we went with plant-based Doxil. I hated it. I absolutely, positively hated it. Since patients on Doxil are prone to blistering, we are advised to keep our hands, feet and mouth cold for three days after treatment to avoid it. Also, chemotherapy lowers the white blood cell count, which the body needs to fight infection. At all cost, I had to avoid blisters that might get infected. I guess it’s lucky we had a cold, snowy winter. While the rest of the East Coast bundled up, I walked into the snow in flip-flops and tossed snowballs to my golden retriever with my bare hands.

It didn't really matter what I did; Doxil didn't work. My CA 125 surged to 385. Considering my level was 129 before surgery, this was a very scary number. Worse yet, a CAT scan showed the cancer was progressing. It hadn't spread, but new nodules (small tumors) appeared. Time for yet another medication change.

Topotecan. (Toe-poe-tee-can.) It is also plant-based. You sort of have to love a chemotherapy that sounds like an exotic bird. I think I do love it. After the first treatment, my number came down to 289. After the second, 163. It's a good trend.

As of now, I am receiving treatments every three weeks, four days in a row and fighting the fight. I'm not going anywhere anytime soon. Not if I can help it. My husband and I plan to spend many more years living and loving together. There are still lessons to teach my children and milestones in their lives I intend to celebrate. There is love and joy to share with friends and family. I will not surrender.

I am hopeful. For now, for today, my body is again responding well to the treatments. I am hopeful I will not only tame the beast, but kick its butt once and for all. I am hopeful that my story and the efforts of The Circle of Strength will arm women with information and raise money for ovarian cancer research that will make a difference. I am especially hopeful that after you've read my story, you will join hands and hearts with The Circle of Strength. Together, we can silence the silent killer.

~Nanci
NY


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