Personal Stories

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I was discovered to have primary peritoneal cancer in June 2006. Had the necessary surgery and then carbo and taxol for 18 weeks. I was supposed to have IP therapy and did for two times, but new infusion nurses messed up and did not put the chemo into the port, they used a scar from a drain. So, the rest of the chemo was put into a chest port. Had recurrence in June 2009. Put in a clinical study with Vironistat (used successfully for some lymphoma) and carbo and gemzar. Had that for 18 weeks. Never had real symtoms, just slightly elevated CA 125. Cancer showed up on CT scans. Sept 2010 CA125 is up to 40. CT in November to see what the next step is. Had a bowel obstruction in March 2011 and was in the hospital for five days. CA 125 in May 2011 was 93. Chemo begun again in June after another bowel obstruction - in hospital for two days. Am in another clinical study with carboplatin and Pralatrexate. After 5th cycle infusion developed allergy to carbo. Will be desensitized for 6th and last cycle.

I.

Hello, I would be glad to share with you. I am appalled that there isn't more attention or help with this disease. I had begun to have some bleeding (very light) and pain in lower abdomen. I went to doc and she sent me to gynecologist. They did pap smear, biopsy, ultrasound and everything came back normal. He put me on antibiotics and told me to come back if it continued. It did and I went back and he suggested I have a hysterectomy since I was definitely not going to have children anymore. During surgery the tumor was discovered on my ovary and then discovery of ovarian cancer.

I knew something wasn't right, and all I can recommend is that even if a biopsy comes back from the uterus normal, women should insist on further testing since there is no definitive test for ovarian cancer. As I was not educated I was not aware that that biopsy would not show up ovarian cancer, which it did not. But, since they did not know I had cancer before surgery the lymph nodes were not removed or the (not sure of what it is called) is it the peritoneal lining? So, I have got to have that removed and further biopsies Nov 2.

I would love to do something to get ovarian cancer as well known as breast cancer. Thanks.

II. YOUNG GILRS AND OVARIAN CANCER

Yes young childern do get ovarian cancer, my daughter Sophia Grace Who was just 5 years old had small cell carcinoma a very rare form of ovarian cancer that affect young girls. When she was finally diagnosed she was stage 3. As we have learned this last year after talking with so many team mothers, we were able to find other mother who had or who is going through this with a young child. On Thanksgiving day last year god took home two young teal daughter from this horrible cancer. One was eight years old and her name was Merrial and my daughter Sophia Grace. The year has been very tough for us, we have so much anger , because we just don't understand how young childern get ovarain cancer. And over the year we found other mothers that had a three year old , a seventeen month old. Everyday we wish that it was caught in the early stages. Please I hope you don't think I told you this to scare but to make people aware that ovarian cancer does effect all ages. In young childern it is hard because DR. Say oh she is constipated, or acid reflex, or she has urine track infection, and after my daughter pain did not go away after a month then they finally realized that something else could be going on, by the time they figured it out it had already been stage three. I will keep your daughter in my thoughts, but please and I know you will ask your DR many question don't hold back, ask him to be honest with you ask him if you should take her to another hospital. I hope that after her ultra sound that you have good news. Please keep us posted.

III.

The picture you see above was my brother's wedding day; a day I would not miss for the world, and a day that was only to be about them. And it was the first day I had to put every fear aside, every worry for my husband and daughter's future, and decide how I would face uncertainty. Because only the day before I found out, what nudged me quietly for two years, just like a whisper, were two tumors grown and twisted on each ovary.

The frustration in this entire saga, was that I saw it coming, I saw it. And perhaps many of you would ask, "Why, for God's sake, didn't you DO anything about it?" But, the funny part is, I did. I did do something. I just didn't do enough.

I never blamed my OB/GYN. I am not that kind of person. But two years in remission I look back and think, "Did she listen to me? Did she listen during each appointment that my abdomen felt hard, that intercourse with my husband would leave me buckled in pain, that I was gaining weight only in my lower abdomen. Did she deny a request of mine for an ultrasound, a blood test, anything, to quell my concern?" No, she did not. She prescribed astroglide, and told me we are all getting older, and that's life. I didn't go for that second opinion, thinking she was likely right.

And so months went by, and I was doing my yoga with my daughter, the day before my brothers wedding, and while doing cobra pose, I felt them. It was if I were pregnant, and impossibly so, as I had no uterus. I called my GP, he rushed me in, rushed me to have an ultrasound, and only twenty minutes after this quick test, he was on the phone with me, thus beginning a new chapter in my life.

So, please, from my experience, it is your body and your life. You know when something is not exactly right, probably more so than your doctors and specialists. They work for you, you should not be an afterthought, or dismissed, or placated. Advocate for yourself. Get a second opinion. My symptoms were quiet, and that is why this disease is devastating.

I hope my story helps you, even if only to remind you to be strong and vigilant.

IV

I had all of the classic symptoms, pain with intercourse, gaining weight only in my abdomen, pain in my lower abdomen, bowel issues that mimicked IBS, but would not respond to treatment for IBS, bloating, feeling full, then it began to progress, severe pain in my abdomen feeling like someone was stabbing me with a knife during sex, weird periods barely spotting for a couple of days in the month to almost no periods at all, even though I was in my late 20's.

Then to 12-21-11: I found myself fighting a fever of 102.9, went to the ER and had a CT scan and was told by an ER doctor that I had a large mass in my abdomen and they thought it to be cancer. Diagnosed with Stage IIIc ovarian cancer, had tumor debulking surgery and had 8" of bowel removed.

Biggest lesson is to listen to your body and don't stop with the first doctor's diagnosis. I was diagnosed with endometriosis and IBS and come to find out now, I have neither one, it was all caused by my tumors. Also, urine incontinence is gone now that tumor is removed! Yeah!!

V.

Fatigue..dizziness...urinating more frequently...then abdominal distention...heartburn...all suddenly ocurring

relatively suddenly and over a period of roughly 6 weeks. Turned out I was carrying a

15 cm x 15 cm tumour on right ovary...which was larger by the time I had surgery.

I think that frequent urination is a sympton that is overlooked and treated as a bladder infection.

the constipation I don't think it would have been discovered as early. Thankfully, it was designated as IIC. It wasn't until the following school year after the surgery and chemo that I realized I didn't need a nap anymore. Was surprised how much the tumors had dragged me down. So my main two symptoms were extreme tiredness and a crowded feeling in my belly. The problem is how slowly the symptoms crept up which I just got used to over time.

VII

June, 2011 - I didn't feel "right". I was an active 58 year old woman with a demanding busy job. I was fatigued all the time, felt nauseous (which I rarely feel), had some minor bloating, and pains in my lower right abdomen/pelvic region. After a few weeks, I figured I must have appendicitis. Saw the physician's assistant and a blood test. She assured me it was not appendicitis, just a stomach virus - wait a week and it will go away. I wanted to just hang up the phone and get on with things, but for some reason, I did not do that, for a change. I said I did not get stomach viruses and I just don't feel right. Thank goodness she then listened to me. I had a CT scan which showed a 3x7 cm cyst on my left ovary. Called my gynecologist who sent me for more bloodwork (CA125 but I didn't know anything about that then) and an ultrasound, abdominal and transvaginal. Two days later in her office she gave me the news that I had ovarian cancer. CA 125 was 40 and the ultrasound clearly showed the tumor. She referred me to a gyn/oncology practice. After debating robotic surgery, I ended up with a total abdominal hysterectomy, removal of 57 lymph nodes in the abdominal region on July 1. I was fortunate - Stage 1a. Then unfortunate because, although all nodes and fluid washings were clean, the pathology report showed clear cell. So next step was 6 rounds of carbo/taxol. Through most of that I battled a wound infection (incision burst open 3 days after I returned home from the hospital). My surgical incision was left "open" so that I could heal from the inside out. I was on a wound vac for 11 weeks and then another 11 weeks with packing and daily dressing. 7 months after my surgery I developed lymphedema in my groin and right leg. That has been another nightmare. I often wish my surgeon had not been so aggressive with the lymph node removal.

All in all, I consider myself lucky, but it has changed my life forever.

VIII.

I sure agree, incontinency was one of my symptoms. I went to gyn/uro he inserted the mesh device, that worked for a year or so. Then it all started over. Went for check up he finds large tumor on my ovary. Doc's need to be more aware of this!!! Also , bloating for years, my onc says I had this tumor a long time. I had Barret's Esphogas so was treated for that. The bloating can go along with Gerd. . A couple weeks before my surgery i looked 7 months pregnant.

Sneaky symptoms, but Gyn's must be made more aware. More education on the subject? I don't know.

IX.

Late July started feeling a little bloated and what felt like onset of UTI. Cranberry juice did not work! Noticed bloating in midsection which I attributed to desk job/overeating. Days passed and discomfort increased - reminded me of hyperstimulation of ovaries when undergoing infertility treatments years ago. Thought perhaps bladder issue and requested appt w/primary as I was soon leaving for major conference. Was seen by nurse practioner who barely listened to me, and did perfunctory pelvic exam w/o speculum, requested that I cough, and then sent me packing w/RX for macroban. While out of town, called my gyn to indicate my concern, and she booked appointment for when I returned. Once seen, w/in 5 mins she diagnosed a 10c tumor on ovary....immediately did pelvic ultrasound. Had me in surgeon's office next day, and in surgery w/in 7 days for radical hysterectomy. Stage 1-C, clear-cell carcinoma. Nodes clear, few stray cells found in pelvic wash. 6 rounds of chemo (just did 4th) of taxol and carboplatin.

Lesson? Pay attention to your instincts! You know your body! Hope this can help someone.

XII

Hi! My name is Nancy. I am 46, a Mom, a Birth Mom, a Grandma, a sister and an aunt! On 9/20/12 I was diagnosed stage 4 ovarian cancer. This is my story: On September 3, 2012 I was in court. As I stood before the judge regarding my divorce the pain I was having was excruciating. I did a pretty good job not showing it. When I left the court house I returned to the hotel in which I was staying (there were extenuating reasons for this). About 1 hr after arriving I used the ladies room and found that as I got done the pain was unbearable. I looked into the bowl and realized that I was bleeding. As I left the bathroom I hit the ground in pain. I immediately called my doctor who sent me to the emergency room. They believed that I had kidney stones and me to have a CT scan. Little did I know how my life was going to change. The CT scan showed something that concerned my doctors. They sent me to a surgeon who scheduled a biopsy. On September 20th I found myself an outpatient going in to have a biopsy done. It was after the surgery that my sister said “you have ovarian cancer”. I remember saying to her, OK… so what do we do next. When I visited my surgeon one week later he was so kind. I said to him Ok.. let’s kick cancers ass. But, I need to know.. what stage is this. He said Nancy, you have stage 4 ovarian cancer. I always thought I would be the type of person who would have cried or buried myself in a shell. And I know that many years ago I might have been. All I could say was “so what do we do to kick this?” And I will beat this. Looking back at the last year of my life, there have been so many ups and downs. But, I believe that everything I have gone through in my lifetime and the last year has been a gift which will allow me to fight this with everything that I am. I will not let this beat me. I will not allow my life to be cut short because I know that God did not bring me this far to take me now. I also know that I am truly blessed to have all of my family, friends and more who will be there by my side as I fight this. I have a sister who if it wasn’t for her I don’t know where I would be. I have a man who is being my rock and fought this fight himself (ok.. not the same cancer but the same stage) and won. I have 2 beautiful children who I know I can count on at any given time. I have an awesome God who is holding my hand throughout all of this. So.. if this is the next challenge that I need to conquer .. and with all that I have on my side... I say... Bring It On! In 4 months I have had 4 surgeries including biopsy, debunking, full hysterectomy, removal of omendum, and scraping of the colon, insertion of the port, and replacement and new port put in and began my chemo treatment. The type I have is a very rare form of the disease. It is stromol cell. The cancer that I have is a very slow growing cancer. This has been there for many many years. The hard part now will be chemo. This type is cancer is only in a small percent of the cancer patients with ovarian cancer. It is also a cancer that does not typically respond to chemo. But, if there was a small chance that chemo would work and knowing that if I didn’t try, years down the road I would have said what if? I have made the conscience choice to do it. But, even with this diagnosis I have had some wonderful lessons learned. I have had many of my questions answered including Why Me? If anyone is interested in learning more about me and what I have learned I have a blog that when I feel up to it I update it. It began as a blog about my journey as a birthmom and reuniting with my girl and is becoming my journey on the road called Cancer. Visit it at http://babyitwasbecauseilovedyou.blogspot.com/2012/10/another-life-changing-event.html. You see the road is named Cancer, I am named Nancy. I will continue to remain who I am and I will continue to fight.

THIS IS MY STORY.