I too am a survivor and have struggled with the same question. I was 27 when I was diagnosed, 3 years ago. I was stage IIb and had a reoccurance 3 months later. My Gyn thought I had a hernia and told me I was too young to have anything wrong with me. 4 months later I became very ill and went to my regular doctor, she thought I was pregnant at first by the look of me.

3 years later and I am cancer free, I am starting back at school for a degree in Physiology and then on to my MD. I do volunteer work with the Minnesota Ovarian Cancer Alliance (MOCA) in Minneapolis and am always looking to do more to spread the word.

I have never had cancer however I have cancer has had a huge affect onall my life. My mother, aunt and my three sisters have had either ovarian, breast or endometrial cancer or a combination of the three therefore I have been monitored closely since I was 18 (I’m 40 now) . All the women tested in my family have the BRCA1 gene and therefore I had my ovaries removed in April 2007 as a precaution. My niece who is 32 had the same surgery.
My oldest sister is going through her 4th reoccurance. Its been 9 years since her initial diagnosis. She is also heavily involved in the ovarian support group in our city.
At the moment there aren’t any good tests out there to detect ovarian cancer at its early stages. Women have to listen to the quite symtoms of ovarian cancer and be persistant with doctors.
I just wanted you to know that its so important that women read stories like yours. Thank you!

I watched my oldest sister die of this disease and it was devastating. You were very lucky to be diagnosed early. Unfortunately, although my sister always went for her exams every year and when she knew something was off, they missed the diagnosis. She was Stage III when they found it and became Stage IV after her surgery. She looked as if she was 10 months pregnant, and my sister had been thin all her life. She had a very good cancer doctor. He did get her into remission which is unheard of in Stage IV. We had her for another 4 years. She was in remission for 2 1/2 years and her doctor skipped around his office because he couldn’t believe it either. My point is that if they could do that 4 years ago, there is hope. I never thought we would have the extra 4 years with my sister. So everyday they are making strives against this disease. Don’t ever give up hope!

Thank you for sharing this story. I lost my mother a year ago (age 73) to ovarian cancer… she was diagnosed in January 06 and passed away Easter Sunday 07.

It is so very important for women to get regular checkups and to be aware of the changes in their own bodies.

Please take care of yourselves – not only for you but for your family.

God Bless.

My mother had ovarian cancer. Hers was a rare form that they know very little about. It was so rare that it took almost 6 weeks to determine that it was indeed cancer.

As a result, the doctors have taken a proactive approach towards my sister and me. I have frequent testing on top of regular exams. So far, I have had surgery to have ovarian cysts removed, but all were benign.

Our mother is still with us although she frequently states how God allowed her to survive this cancer without any treatment but surgery. We know that this situation is rare and we too reach out to others. I have met several daughters of women going through the surgery/healing process and have talked with them on what they can expect and what they have experienced, the good and the bad.

To all,

Thank you for sharing your thoughts. I send my love and will keep you in my prayers . . . a breast cancer survivor celebrating 8 years on September 27.

For the writer, Nikki — what kind of frequent testing do you have?

p

karen, I would Iike to thank you for shareing your incredible story,while I’ve never had cancer of any kind my family has a history of it first my father,grandmother,and mother all died of this terrible silent killer .all of my parents were very young when they passed away 47yrs old 50 ,and 65 I do believe it runs in my family Iam so afraid every time I go to the doctors office ,to get a pap smear ,or a mammagram because I don’t know what the out come will be.I know that the good lord will and can take care of us all,I fell in a way that we all are some how bonded together in this battle against cancer. karen you have a very special story please don’t stop sharing it with your readers it gives hope to so many people you’ll never know how many livesyo’ve touch. Iloved the part about the uninvited guest life is a gift that comes from God; we have to be careful how we take care of it. I’ve loved reading everyone’s stories we have to draw strenth from each other. I love you karen and the whole cnn family. God bless sheila

Until losing my mother in a blink of an eye. I never gave it much thought. I should have but my aunt that had the diseased died at the ripe old age of 85+. And my mother was just 70.
My mother was a very active and young spirited person. She played computer games, did a paper route to keep busy. Then out of nowhere she had seemed to be come ill. It was first what appeared to be stomach problems or indigestion. But then it didn’t go away . I begged her to go to the doctor. Finally on day six she went to the doctor. They admitted her after a few tests. That was mid June. A quick doctors visit with a tummy ache turned out to be Ovarian Cancer Stage III. The rushed into surgery and removed her ovaries. All seemed well. They sent her home. She was told to rest and come back at a future date to have follow up. She went to her follow up and they gave her a clean bill of health. I would talk to my mother daily and she would say that she had pain but everyone attributed it to just having had surgery. Also she didn’t feel it was bad enough for her pain meds. Then came July and her health seemed to go rapidly down hill again she was having stomach problems, this time followed by not being able to swallow. Back to the hospital this was now July 11. Admitted again to find the cancer was back. But now stage IV. It was why she couldn’t swallow. It was in her throat, stomach,and even liver. My mother had months before planned a birthday bash with friends from around the world coming to visit. Thinking this might be her last birthday she kept her plans. Being released from the hospital for the last time July 14th. She went home and called friends to confirm their coming. On July 19th my mother celebrated her 71st birthday with friends and family. Online friends on web cams and microphones. She laughed and smiled and enjoyed her last hours filled with love. At 9:22pm EST July 19. My mother bid everyone farewell. She died 48 hours short of her actual birthday. But celebrated and enjoyed her last moments the way she wished.

I am at present scheduled for surgery to removed my ovaries. Before they find anything.

During my last check-up I told my gyn that I had heavy bleeding during menstruation and pain throughout the month, she told me the pain was in my head and ignored the heavy menstrual bleeding. It is awfully difficult to get a doctor to pay attention. They are often very dismissive. She did order an ultrasound just to “put my mind at ease” then her office forgot to call me with the results. When I did not hear from them in a reasonable amount of time (I gave them 6 weeks, the bills they sent me served as a reminder) I follow up, then I learned I had two fibroids, each 2 centimeters big. But what if it had been ovarian cancer? or some other type of cancer? Why is it so difficult having a doctor take our complaints and concerns seriously? We need regular testing as part of the gyn yearly exam.

I am also an ovarian cancer survivor. I was quite lucky. I am not sure what stage to call it as it was attached to just one ovary but it wasn’t really in the ovary. My waist line ballooned overnight from 32 inches on a Saturday to 38 inches the next morning. At first they didn’t know what type of tumor it was as it had pushed all my abdominal organs out of place so they didn’t know where it was attached until I had surgery. It ended up being over 20 lbs and was so large they had to stretch the skin on my abdomen to get it out as the largest incision they could make still wasn’t large enough. It was kidney shaped with a couple bubble like structures in the middle (I have a copy of my cat scan and the surgeon took pictures and gave them to me). After having a complete hysterectomy, taking several lymph nodes and the greater and lesser omentum (parts of the peritoneum) out and testing everything the only place that was positive for the cancer was inside the tumor. Everything else was negative. I was only in the hospital 4 days. Lucky indeed.

I really enjoy Dr. Gupta’s insiteful answers to vexing questions. One area i believe he has not touched on is Down Syndrome. Because of John McCain’s running mate’s child has been in the news, I was hoping he would discuss the issues and therapy regarding Down Syndrome.
Phyllis Beal

April 07 I found out that I had ovarian cancer. I went into the hospital thinking that I was having an appendicitis attack. Once tests were done they discovered through an MRI that they could not see my right ovary. Two days later, exploratory surgery was performed and they found a cyst the size of an orange on my right ovary. It was removed along with my appendix and many lymph nodes, my abdominal flap, and abdominal fluid. The cancer staged out at 1C.

I was only able to get through 4 of the 6 recommended doses of chemo because my body did not bounce back fast enough. A year after my last dose, my platelets and my white blood cells are still just at the bottom of the acceptable range.

I’m thankful that it was found early and hope and pray for a long, healthy and happy life.

I am an Ovarian Cancer Survivor — this coming Wednesday marks my one year anniversay!
When I was 9 ½ weeks pregnant my OB decided to do an ultrasound – we had no reason to suspect that anything was wrong – this was just to confirm how far along my pregnancy was. During this appointment, a mass was discovered on my left Ovary. After a few months of close observation, my OB decided we needed to do surgery – I was five months pregnant. The mass ended up being much bigger than previously thought and as a result, my surgery ended up being much more extensive than we had planned. Four days later – Monday, September 10, 2007 – I was officially diagnosed with Ovarian Cancer. Needless to say, that was not the news I was hoping for; as I had been told that the chances of it being Cancerous were less than one half of a percent. My first thoughts were of my baby daughter – what effect would treatment have on her, could we wait and do treatment until after she arrived. After consulting several OB Oncologists and a few experts on Chemotherapy agents; the consensus was the same – I needed to start treatment right away. As it turned out, the Cancer was an extremely aggressive form of Ovarian Cancer and delaying treatment would seriously jeopardize my long-term prognosis. We began treatment on October 8, 2007 and ultimately, my daughter and I underwent 18 sessions of Chemotherapy. Rowan Alexandra – my Angel Baby – was born on Wednesday, January 16, 2008. She was very little but she was healthy and she is thriving today. On January 18, 2008 I received notice that all of my biopsies were indeed negative – I am Cancer free!

I’m also a ovarian cancer survivor and My oncologists miracle as he called me, I was diagnosed at 39 with stage III. After having all the tests I was told there was no cancer but since I had fibroid tumors they should be removed. When my GYN went in to remove them he found a small tumor attached to my back wall behind my ovary when tested it came back positive. The oncologist told me he can recommend chemo but it would have to be very toxic because of the advance stage (not that there was another choice) so I went through with it 6 months of chemo and blood transfusions another surgery to take a second look and I was very lucky cancer free and have been for the past 14 years.

I can’t say enough about my family support which help my daily attitude and strength to keep going.

Good bless all
Niki

It has been almost eleven months since the loss of my sister, my only sibling. Although we both had our seperate families, we were best friends who hardly did anything without the other. In 2001 she was diagnosed with ovarian cancer just ten days after the birth of my first grandchild. My what a roller coaster of emotions for our family. Difficult as it was I have to constantly remind myself of how lucky we were to have her for more than six more years. No they were not always easy years but she put up a fight I don’t think I would have the strength if it were me. The hole in my heart will never heal.

We must all look at our lives and the stress we have in our lives. For my sister, just four months prior to her diagnosis, her youngest daughter was found to have breast cancer. Just recently her husband has been diagnosed with cancer.

Today’s families have to have a bigger houses, latest model cars, frequent vacations; kids must be taken to soccer, hockey, football, swimming, ballet, volleyball, gymnastic practices while both parents work to try to pay for it all. Is the stress of having it all worth the health risk?

Thank you for your story Karen.

I am also an ovarian cancer survivor. I celebrated my two-year cancer-free anniversary this weekend by doing a fundraising walk for ovarian cancer. I am one of the lucky ones.

I was diagnosed at 38. My family doctor sent me for an ultrasound after feeling a slight bump during my annual pelvic exam. The results came back as “potential bilateral ovarian cancer”. Panic is what I felt that day. We were still hopeful it was a false alarm until the CA-125 test came back at 129… I was lucky to see a fantastic gyne-oncologist who scheduled surgery quickly (in 4 weeks). I was staged at 1c, and luckily, low grade. I had a second surgery to remove the omentum and take more biopsies three months later. No need for chemo, thank heavens. I have had CT scans and ultrasounds every three months since. I have now “graduated” to six months intervals.

I was lucky in more ways than one as my family and my amazing circle of friends were right there every step of the way. I can never thank them enough.

Keep sharing your story and for those who are going through diagnosis right now, keep positive, my outcome was better than I thought I could hope for. My only advice is to surround yourself with loved ones and ask all the questions you can think of, you will be better able to make the right decisions for you.

Good luck to all of you.

I had breast cancer in 1981. After a modified radical mastectomy, I did chemo for a year. No recurrences. Then in 2003, I had ovarian cancer, stage 1. I’m over my five years out, and my oncologist considers me cured. Some of us are more fortunate than others.

It wasn’t but 11 years ago when we laid my grandmother down to rest when she fought and failed the complications of ovarian cancer. She was 76 and she lived a great life. I only wish she was still around to see what a beautiful great-grandchild she has today. If it had not been for the other complications of her health (heart disease, diabetes), I am confident she would have made it through.

We didn’t see this coming at us so quickly 11 years ago when she was diagnosed with stage 4 ovarian cancer. Her stomach was getting bigger and didn’t know why. This was in June of 1997. She went in for a few tests and a MRI and then finally when the blood work and tissue samples came back, that is when we found out. She went into the hospital one week later where they were going to do surgery first, but decided to do chemo first and shrink the tumor. She had some complications, but came out of it. It was working and the doctors tried another round. It was then that she didn’t come out of it. So many thoughts went through my mind as I watched her suffer and there was nothing I could do. Fear, anger were just a few, but remembering the woman who was more or less my “second mother” growing up and the fear of losing her was devistating to me.

I cannot urge all women to not only get their yearly screenings done every year, but I feel we need more than a simple test to show for ovarian cancer. This is by far one of the most undetectable cancers and a pap will not uncover whether you have it or not. As much money and research has went into breat cancer, I think we are short changing ourselves if we don’t put half as much funding into developing awareness, detection methods and tests for ovarian cancer. I know breast cancer is devistating and it is serious, but detection methods and education are there. Ovarian cancer needs to catch up and catch up quickly. I would hate for anyone to lose their grandmother like I have who I was very close to.

My love to the people who fight this cancer . But I have a question .I had removed all my reproductive organs because my PAP smear was abnormal and later the biopsy came cancer so How I do my OBG test now.
Sincerely
Lilian

I was diagnosed with IIc in January 1998. I had a terrific surgeon, and wonderful support and love from family and friends got me through chemo (Taxol and Cisplatin). It was hard to imagine that there would come a day when the threat that the cancer represented would not enter my mind, but miracously, it hardly ever does now. Five years proved to be an important turning point.

You ask what I learned. I waged as big a war against fear as I did against the cancer itself. I, too, was afraid I wouldn’t be there for my son. That was the worst fear of all. I fought the terror and the cancer on every level I could; exercise, nutrition, hypnosis, social support, prayer…anything I could think of that might bolster my courage and hope. My prayers were answered in that one day, somewhere in the middle of the chemo, I stopped feeling so damn afraid. I was better able to live in the moment and be aware and grateful for the love that so many people offered me. What did Bob Dylan say in “Forever Young”? “May you always…see the light surrounding you?” Amazingly, the light became the biggest thing and the cancer seemed so small in relation to all the love I was receiving. (And I always treated it as “the cancer”. Not “my cancer”. It was not mine. It was as you say, an uninvited intruder. I disowned it.)

I don’t know that anything I did (besides the surgery and the chemo) killed the cancer. But I think everything I did and all the emotional support I received killed the fear. I am not as good now as I was then at living in the moment and feeling gratitude. Sometimes I regret the loss of the perspective that was so much clearer to me then, but sometimes I am just glad that I ever got back to being “normal”. My son is now 21! I have lived to see him become a man and I am truly grateful for that.

Hang in there, Karen. I hope the words my gyn-onc spoke when he broke the news to me will stay in your head and heart as powerfully as they did mine: “I know this is scarey, but the idea I want to leave you with is that you are going to do very, very well.”

I am proud to say that I am also a cancer survior. When The doctor first told me of his findings, I look at him and said all the patients you have you chose me to lie to.[That what my way of not naming it mine]. I was also detected accidently,after going 41/2 years without my menstal period, I started bleeeding again and I went to the doctor to find out why, my primary care doctor sent me to a specalist and he order a catscan which show i had a tumor on my ovaries and that I would have to have surgery,but he was going to have a cancer specalist in the surgery with him, My surgery went well and I had 6 months of chemo. I made my esperience fun praising God for my healing and thanking him for the medication but knew he was my healer, I was in the hospital when my hair first started to fallout so I went to the nurses station and ask for some scicors and cut all my hair out put it in a bag and when my doctor came in I told him I had something for him and I gave him the bag of hair saying you gave me that stuff to take my hair out you must wanted it for youself, I wore my bald head and when people would look at me with sadness I would say I am expressing my healing are’nt I beautiful then they would relax and hug me and say you are so brave,
I was always saying during my treatment that God had chose me to tell the world that he was healing me and today I am thankful.
The main thing when being diagnose don’t give it ownership by saying my cancer rebutted it right away and call it a lie but take whatever treatment your doctor thinks is best for you, but keep a positive attitude.
When your hair begin to fall out don’t try to hold on to it because it is going to fall out anyway so at that moment cut it all off.
That was in 1996 and I have been cancer free . Thank you Dr Parvinder Knuija and Thank You God.

My sister Julie was diagnosed stage IIIC when she was 43 and was with us for 3 years fighting with all her might. She had a brilliant oncologist that performed 3 major surgeries and a network of chemo angels that kept her spirits up through it all. The Celma Mastry Ovarian Cancer Foundation lovingly assisted with her expenses. I now get a yearly CA125 and transvaginal ultrasound along with the pap since I am now considered high risk. We were blessed with the support of friends and community organizations, like American Cancer Society who gave Julie her 1st wig and Hospice, who has an amazing staff and eased our pain. Through it all, my family grew in love. Julie passed away last spring at home, in my brother’s arms. We miss her so much and wish she was diagnosed properly and earlier.

Thank you Matthew for writing your story. I lost my mother to uterine cancer in March, 2003 and although uterine cancer is typically quite responsive to drugs, my mother’s cancer acted like a very aggressive form of ovarian cancer. By the time it was detected, she was already in stage 4 of the disease, despite her routine medical checkups.

I share Matthew’s comments and would also love to see the amount of funding that goes to breast cancer research, go into developing awareness and detection methods and tests for ovarian cancer. Afterall ovarian cancer is known as the “disease that whispers.”

i haven’t fought cancer but know many that have, including a close friend of mine who is only 33 and has a young daughter. i’ve learned that support groups and blogs have been very helpful in sharing treatment and recovery tips as well as just emotional support. sometimes it just isn’t enough that i’m there to support my friend but she felt better when communicating with others who were going through the same thing.

Also, I noticed many comments about family members who have had ovarian cancer. Just fyi, there are diagnostic tests which can let you know if you are more likely to be at risk. Here is a list of ovarian cancer diagnostic tests.

http://www.wellsphere.com/cancer-article/tests-&-diagnostics-for-ovarian-cancer/116517

My ovarian cancer was discovered by accident exactly 3 years ago this month when I was 61. I had been extremely bloated and looked and felt like I was nine months pregnant. At first I thought I was just getting fat and was full of gas. But the symptoms never got better. I thought I would wait to get it checked because I had a colonoscopy scheduled and I didn’t want a lot of things going on at the same time. When I first went for my checkup prior to the actual colonoscopy, the doctor said “what’s this?” He told me I needed to get it checked first then we’d do the colonoscopy at a later date. So, I contacted my primary who told me I had to see an OB/GYN. I was 61, so I didn’t know who to contact and each one I called could not see me for at least 6 weeks. I called my primary back and the nurse said I could wait, but if I was too uncomfortable, I could go to the ER. Since I wasn’t getting a whole lot of help with these doctors, I went to the ER. After they took blood tests and a CT scan, then admitted me and said they had an OB/GYN on duty that evening who would see me. Consequently, he was one of the doctors I had called who was too busy see me in his office. When I did see him, he said he could remove the cyst the next day. The cyst was 14 pounds and quite large. After the surgery, they told me they found cells that were cancer. My cancer was stage 1A. I was so lucky. I had to go through three chemotherapy treatments and had all the unfortunate side effects one could have. I finally did have my colonoscopy, which was fine. So far all my post-surgery CA125 tests and CT scans have all been normal. Ovarian cancer is a silent killer. There are no diagnostic tests for early detection. There are some symptoms to watch for but these symptoms mimic a whole host of other ailments. A PAP test DOES NOT detect ovarian cancer.

i was diagoinosed in 1998 with ovarian cancer. i have been fighting it since then. on tuesday of last week i found out i have a brain tumor. i am so very scared. will know more after surgery if it is cancer or not. good luck and keep your head up.

I was diagnosed w/ovarian cancer (stage IV), on Jan 1st, 2008. I put off going to the doctor because I knew something was wrong and was scared but finally my stomach ballooned so big I literally couldn’t move. I had an enormous tumor blocking my colon and was operated on immediately. Due to my lack of seeking early medical attention, it has spread to my lungs. I just finished my 9th round of chemo and am waiting for my next PET Scan to see where there is still cancer. I’m scared to death all the time. My sister just had her ovaries removed today and another sister (my identical twin), may do the same. Every day I get mad at myself for not going to the doctor earlier. I’m 47 years old and feel too young to die. My experiences have been mixed. Some good friends ran away once I told them and others have come closer. I feel lucky and blessed by God that I have been able to handle the physical symptoms of chemo pretty easily. The hair loss has absolutely been the hardest to accept. I pray every day to become and stay cancer free. This is a horrible disease and I wouldn’t wish it on anyone. Get checked early, have them run a C-125 on your blood work. I only wish I had been brave enough to go to the doctor earlier.

My ovarian cancer was found because of a bowel obstruction. Besides removing my ovaries and fallopian tubes (I had a partial hysterectomy 10 years before), they also removed 8 inches of my bowel and told us that it was definitely cancer in both the bowel and the ovaries. They did not know if the cancer was spread from one site to the other or if I had 2 separate cancers.
When I returned for the final pathology report, I received the shocking news! I did not have cancer in my bowel. It was endometrial tissue that caused the blockage. However, if not for that obstruction, we would not have found the cancer so easily. I have IBS and would have ignored the symptoms. fter all, I ignored the symptoms of the obstruction for over a year.

The results showed that I had stage 2b cancer> After the surgery, I underwent chemo and I have survived for over 6 years. Not many people think it’s a good thing to have a bowel obstruction, but I am thrilled I had it.

Besides the miracle that I feel I received, having cancer was so good in so many ways. My husband got in touch with his feminine side and we are even closer than ever. I had the honor of being told that I was being prayed for. I also realized how much I want to live and have been much more care-free since then.

Paulette Raspberry

i forgot to mention that i have had 68 chemo treatments. but i’m still kicking.

I will be celebrating my 7 year ovarian cancer survivorship November 14th. I too went into surgery thinking I was having a very large fibroid removed. After surgery my family didn’t tell me it was cancer and I wondered why they weren’t hanging out in my room much, until the Dr came and told me that it was ovarian cancer. Then I understood! I was 38 when diagnosed with a rare Germ Cell form of ovarian cancer. The blessing is that there is a tumor marker for germ cell cancer so they can do a AFP blood test to make sure I am cancer free. AFP should be 6 or under… AFTER they removed the tumor my AFP was 36,000!!! After 6 rounds of chemo my AFP was normal for a couple months then went back up a little. I ended up having an eraser sized nodule in my lung which I had removed in Aug 2001. Since then my AFP has been less than 3.

I have been involved with the Dallas/Ft Worth chapter of the National Ovarian Cancer Coalition. It has been a blessing spreading awareness and being involved with many wonderful people. If you can get to Grapevine, TX our Walk to Break the Silence On Ovarian Cancer is September 27th. You can go to http://www.ovarian.org to find a chapter or walk near you.

Through my cancer experience I learned that life can be short so I enjoy the simple things in life more and stand up for myself more. I take those girlfriend trips more and just enjoy nature. I appreciate what I have instead of focusing on what I don’t have.

God bless all the women going through this and their families and friends.

Melissa
Diagnosed 11/14/2001
Ovarian Germ Cell Cancer

These are all amazing stories. Can anyone can recommend an Obgyn or Obgyn-oncologist in the Kansas City area. We recently moved and I have a cyst on my left ovary that needs to be removed. All of these stories definitely make me want to be proactive even though previous dr’s say it’s most likely benign.Thank you!

I was diagnosed with ovarian cancer at the age of 26. Although I am a long-term survivor, I can certainly remember feeling much like Karen and the other women who have written. In addition to coping with a potentially life-threatening diagnosis, I was struggling with the symptoms of sudden menopause as well as trying to figure out how to fit back into my life when I felt my purpose had so drastically changed. Long story short….I wouldn’t want to go through that experience again,but I did learn alot from it and it actually enriched my life in some ways. To all of you in the throes of dealing with this disease, stay strong and never underestimate the resilience of the human spirit.

Donna Thomas,

You are a remarkable woman. What ever the outcome of your prognosis is – you can do it!! you obviously are a very strong woman.
68 chemo treatments? You can beat this “brain thing” come on girl!!
I had uterine cancer 4 years ago and when someone said to me “BE STRONG”….I thought what other way is there?? I know you can do it
Donna!!

Marla
Vancouver, B.C.
Canada

I read all your stories and was really moved. However I did not see any mention of the symptoms. Maybe if you all mentioned what symptoms you had previous to your diagnoses then we could pick out the common ones.

My prayers are with you all for full recovery and comfort.

Karen, thank you so much for sharing your story of survival with others during September, Ovarian Cancer Awareness Month.

Your message helps all of us Break the Silence on ovarian cancer!

All women are at risk. And symptoms do exist:
- Bloating
- Pelvic or abdominal pain
- Trouble eating of feeling full quickly
- Feeling the need to urinate urgently or often

If symptoms persist daily for more than a few weeks, consult your physician.

Please contact us for additional information: http://www.ovarian.org

Luann Anderson, National Ovarian Cancer Coalition

I do not have cancer but am worried that I will get it as I underwent 6+ years of intense infertility treatments with all kinds of drugs that were both approved by the fda and not. I’ve spoken with my obgyn about having my ovaries removed and she indicated that you can still get ovarian cancer without having ovaries. I don’t understand that, but believe her. I feel bloated all the time – I go for my annual exams, but it just a pelvic exam. I am 48 years old and never had a baby and feel at high risk.

Thanks for sharing your story; I’m looking forward to reading more blog entries.

I, too am a stage IIc survivor. The tumor was found by chance in 2004 a couple days after my 44th birthday during a routine gyn exam. I got what I called the two-for-one deal from hell because I also was also diagnosed with endometrial cancer after surgery. But here I am 4 years later, after the chemo and radiation, healthy and whole again. I’ve gotten to see my daughter blossom from a first grader to a pre-teen.

Have you ever heard of ovarian cancer described as the silent, deadly killer? Ever heard the lament that it’s almost always discovered too late at stage 3 or 4, and then, only in response to patients complaining of symptoms?
Yet the Ovarian Cancer National Alliance says that early detection can improve survival rates from 25% to 90%. So why aren’t we finding more ovarian cancers at stage 1 or 2?
The American Cancer Society advocates that women get an annual diagnostic mammogram – with no symptoms required – for potentially early detection of breast cancer before it progresses further. Why, then, doesn’t the ACS also recommend use of a transvaginal ultra sound – with no symptoms required – for potentially early detetion of ovarian cancer before it too progresses further?
A transvaginal ultrasound is a mighty good way of discovering ovarian cancer before it becomes a fatal disease. Yet oddly, there is no voice – no shout actually – for women to add this simple, painless procedure to their annual gynecological visit.
Why is that? It couldn’t be because there could be false positives, or that they could miss cancers that are there. If that were the reason, then who would bother with a mammogram? After all, they also report false positives and can also fail to detect some cancers
I suspect that the reason it is not recommended is more financial than medical. Insurance companies probably wouldn’t pay for this added annual test. While it is always dangerous to base one’s medical health on the fiscal needs of insurance companies, shouldn’t women at least know this test is available? If they then decide to forgo an extra night at the Holiday Inn on their next vacation, or hold off on the purchase of a dress, or a nice dinner out, in order to afford this test, then shouldn’t that be their decision on how best to appropriate their money? A gynecologist told me that he believes that many women would pay for a test like this if they would just look at their health in the same way they look at their car maintenance.
So why aren’t the various cancer organizations – and anyone who has ovaries or who loves someone who has them – simply alerting women to the potential life-saving benefit of this annual ultrasound? What could possibly be the downside of doing so?
A gynecologist told me that he purchased one of those ultrasounds ten years ago. He acknowledged that it is rare for a doctor to have one available to patients right in the examining room beause they are expensive and it takes time to lean how to use it. Usually, patients are sent to an imaging center for an ovarian ultrasound only after presenting symptoms.
So I asked this doctor how many ovarian cancers he had found in the past ten years. His answer was six. Four were his patients who were seen annually; they all had stage 1. The other two were referred to him with symptoms; they both had stage 3.
What’s so disconcerting about all of the above is that ovarian cancer is called the silent killer, even though a simple test could “hear” it before it begins to scream.
So why aren’t more women yelling about this?

my prayers go out to all of you ,stay strong have faith and god bless . remember god wont give you more than you can handle.

I was diagnosed with stage IIIc ovarian cancer at age 48, just 2-1/2 months after getting a clean bill of health from my annual exam. I’ve been in treatment since my diagnosis in May 2006.

What have I learned?
1. Life isn’t fair. I didn’t have any of the typical risk factors and I was doing what I could to be healthy and strong. (http://www.cancer.org/docroot/CRI/content CRI_2_4_2X_What_are_the_risk_factors_for_ovarian_cancer_33.asp)
2. I need more than just my own strength. I’ve learned to rely on spiritual strength and support from other people.
3. Some of the nicest people in the world get ovarian cancer! I’ve met many wonderful women who are fighting for their lives, yet they reach out to offer support and love to others who are fighting this disease. The Ovarian list at ACOR.org has put me in touch with ovarian cancer survivors from around the world.

Such inspiring comments from all. It’s just been a year since I was diagnosed and I am hopeful about the future. I had few serious symptoms so it took 2 to 3 months before I decided to go to the dr. I have Stage IIIC Ovarian Cancer. It’s difficult to maintain a positive attitude at times knowing the stats. Lots of inner turmoil dealing with all this.
I had a brief remission of 4 months after surgery and chemo. Now my problem is getting my blood counts up to snuff so I can have chemo regularly. Also a port infection set me back a couple of weeks.

I have a wonderful, supportive husband and familyi and friends as well. Makes a big difference!

I am a new cancer survivor. I’m going next week for my 2nd session of chemo.
This was the shock of my life.
I went to my doctor because my waistline was expanding rapidly. I described myself as looking and feeling 8 months pregnant!

After an x-ray, blood tests, and a CT scan, an appointment was made with a gyn/oncologist.

From the first day of symptoms until surgery, only two weeks passed. That’s how fast it all went. I have stage IIIC, had tubes, ovaries. omentum, appendix, 8 inches of colon all removed. There was still 30% unremovable–attached to pancreas and rear abdominal wall and other places.

I had four children while I was in my early 20’s, not a usual candidate for ovarian cancer.
You can imagine what a shock it has been and still is for me and my family.
We’re all optimistic, have had lots of prayers and prayer circles on my behalf (even though I’m a non-believer). and it might be working.

I’m 73, in excellent health and condition all my life–think that will all work to my advantage.

I have to lick this thing soon–I want to get back to traveling to exotic places. We had to cancel a river trip up the Amazon in Peru because of this!

Maybe in six months.

Good luck to all of you out there.

Love, Jan Folick

My mother died from ovarian cancer. For that reason I had yearly CA125 tests and pelvic ultrasounds. At age 60, when my CA125 went from 5 to 22, my PCP sent me to a gynecological oncologist. After testing I was scheduled for surgery and was later diagnosed with stage IIC ovarian cancer. It has just been a year since diagnosis and I had 6 rounds of carbo-taxol. When my hair started growing back and was salt and pepper (after years of dyed blond) I decided I wanted it to look like Jamie Lee Curtis’ hair. Well today I met her and had my picture taken with her and she called me her twin. There are good things that happen as a result of cancer. I have advised all of my friends to tell their Drs. that they have a family history of ovarian and to request a CA125. While it is not a great test, it is just about all we have. I plan to do BRCA testing in the near future. I sure with this cancer got the attention that breast cancer does!

While reading through these stories the word “accidently” appeared consistantly. If Ovarian Cancers is diagnosed in such large numbers as an accident it’s no wonder so many woman have given up their lives to this disease. Even those of us who are still surviving today have given a large part of ourselves to the long term effects of harsh chemotherapy treatments and surgeries. Living in the shadows of a possible recurrence because we were diagnosed at such a late stage. We are frozen with fear with each new pain and struggle to except that we might have to go through that horror again.

I was “accidently” diagnosed in 2001 and the doctor holding my hand and kneeling beside by bed was just as upset as I was. He knew what the future would hold for me. What I don’t think he knew was that I would survive that stage 3III diagnosis for 7 years with no recurrence. He did his part and sent me to a GYN/ONC for surgery and treatment. He told me something that morning that I would like to pass along to anyone reading. He told me that my best chance to beat this disease was the first surgery. It should be done by a GYN/ONC, the best you can find (who’ll see you). The surgeon must remove as much of the disease as possible. Leaving behind only the smallest amount of disease that can be destroyed by the chemotherapy.

We deserve a better early detection method. Doctors need to listen when we tell them we need something done. My doctor wasn’t listening in 1999 and 2000. I found a doctor that would. Don’t be afraid to leave your doctor for someone who will listen to you. We know our bodies the best and for now we are the only method of early detection. Make sure all your love ones know the symptoms of ovarian cancer. Their not as quite as some may think.

It is so important to educate women of their risk of this potentially fatal disease. I am a almost 6 year survivor of stage IIb ovarian cancer. I learned that it is important to let people help you through this difficult time. It is amazing how many friends and family will be there for you.

After the chemo you will need to learn to cope with post chemo effects and living with “NED”–No evidence of disease. You will want to know your results of the CA 125 level.

Because so many ovarian cancer patients die there is not a large body of champions for this disease. Research is needed to develop a reliable screening test so early diagnosis is possible. The death rate has not changed in 30 years!

Thank you all for your stories of courage. Just 2 weeks ago I went to my MD with bursitis and finally got him to listen about the size of my belly even after losing 30 pounds. I whipped up my shirttail and gave him a sideways view and he finally said “That’s not right.”
Things have moved rapidly since then. A CAT scan the next day and blood work. Referred to an OB/GYN/Oncolist was made for 2 days later. Surgery is scheduled in 3 days. A diagnosis cannot be made until I’m on the table.
I’m scared and I’m praying that it will be benign, knowing the chance of malignancy is high. My family has rallied round keeping my spirits up and helping anyway they can.
At 62 I’ve learned God’s will be done but I’m going to fight this intruder with all my strength.

Karen, Thank you so much for being out there for us in telling your story. It takes someone like yourslef to bring this to the forefront. I learned on the 1st of July 2008 that I have Ovarain Cancer. It is stage III. I bloated and looked 9 months pregnent. My GP told me I had ACID REFLUX. When I went back in pain I was told I had GAS. It took an Ultra sound to find the Cancer. I have had 4 treatments of chemo.
My hair like yours is just about gone. It is quite thin like an older persons and quite short. I call it the comb overeffect. Under a baseball cap I can disguise myself fairly well. I am not ready to shave it off since it seems to be hanging on. Perhaps it will not fall out completely. Only time will tell. 2 more chemos and I will be scheduled for a full Hysterecomy and also the removal of the omentum. Never did I think I would be dealing with this. I did the yearly checkups and all was good for all these years.
Perhaps now that you have the cancer that no one seems to speak of , perhaps you can team up with Fran Dresher in getting the word out to everyone that there are other female cancers out there besides Breast Cancer. Fran Dresher is also a uterine cancer survivor.
When I looked at the paperwork for support groups I saw one for uterine cancer far from where I live but, saw several Breast Cancer support groups nearby.
Again I thank you for trying to get the word out there.
Keep doing your everyday schedule and live everyday no matter what the day brings. We as women are tough we can handle this. Let’s get the word out! Thanks again for telling your story . Know that we will beat this together!!

My mom passed away on Jan. 2, 2008 from stage lllc ovarian cancer. She fought the fight for 4 long years, never giving up hope until the very end. She had the surgery to remove as much of the cancer as possible, debulking they call it, but it was in places they couldn’t get too. She went through chemo off and on for the 4 years, but never really got much of a break from it. I think the longest she ever went without chemo was 6 months. I can only wish and hope they have some kind of testing to detect this horrible cancer soon, for myself, my sister, her 2 daughers, my 3 daughters and now my new granddaughter (that my mom will never get to meet ) and for all of the women out there.

My one suggestion to every women out there is to not wait if you think something is wrong. My mom waited and it wasn’t until I said please see a doctor that she finally went. But, she went thinking she had lung cancer because she had a cough that wouldn’t quit – it turned out to be ovarian cancer. Don’t wait, see a doctor.

please forward this message to as many people as possible…..

My wife of 8 years was diagnosed with Ovarian Cancer last year we beat it without any surgery chemo or radiation….Ovarian cancer is cause by a fungus/virus in the body (same with endometriosis and poly optic/ bi lateral cysts). Fungus grows ONLY through high acidicy levels in the body, I URGE ANYBODY AND EVERYBODY TO PLEASE DO THE RESEARCH ON ALKALINE BASED DIETS. all this diet does is regualate the body to where it was 100 years ago before we started eating all the garbage we do…..Humans are the ONLY MAMMALS who have a high concentration of Acid in the body….your doctor won’t tell yuo any of this so please use your own mind and do the homework yourself. you might save somebodys life……………………….

Alma, I will keep you in my thoughts and prayers as you undergo surgery. You are brave and strong and you will overcome this terrible disease.
My sister in law was diagnosed almost 4 years ago as a stage 3C and after three surgeries and several rounds of chemo she is doing well…she has her good days as well as bad but with her family and friends and her faith in God and a wonderful team of doctors she is an inspiration to all of us.

I would like to strongly recommend genetic testing if there is a high risk of ovarian or breast cancer in families. After my sister in law was diagnosed her siblings ( a sister and brother, my husband) were found to carry the Brac-1 gene and my daughter who is 25 carries the gene as well. Although this is a mixed blessing knowing what might be ahead for our family we have been very proactive: my other sister in law has diminished her risk of breast and ovarian cancers by having prophylactic surgery…my husband knows he needs to be more vigilant with his health ( prostate screening and he is at very low risk for breast cancer) and my daughter has begun her screening ( Breast MRIs,mammograms, vaginal ultrasounds, CA-125 blood tests). Although this may seem overwhelming we feel we are fortunate to know and to be able to fight this disease and not let it devastate our family. My daughter and I recommend highly a great organization FORCE (facingourrisk.org) which helps people whose family history and genetic status put them at high risk for these diseases . They are a great resource for information and support.
I know the more we can inform women about this disease, making awareness a top priority so it can be caught in its early stages when it is more treatable, getting more funding from Congress and networking like this we can beat this disease. As women there is nothing we can’t do!

i enjoyed this article because i know someone who encountered cancer. this person is my mother, she suffered from lukemia cance. As i look at karen’s picture it reminds me of how my mother went through her treatments, lost her hair, and loss weight. this is very inspiring to people who have and don’t have cancer to let them know that just because you have cancer you cannot fight it. for those who don’t have are eligable to encourage someone else to get though it. There are many cures to survive because this is a very seriouus illness to have.

Dear Karen,
How wonderful of you to share your story and create awareness! I have had 4 bouts of ovarian cancer – 1989, 1993, 1996, 2006. I have survived because I BELIEVE. For me, cancer is not about battling and fighting but rather it’s all about believing … believing in the wonderful team of doctors and nurses that you have, believing in the miracle of chemotherapy that cures you, believing in yourself. Your story is compelling and you are helping so many women. Thank you again! Please do me a favor: listen with all your heart to track #11 on the Bon Jovi CD “Lost HIghway” … the song is called “One Step Closer” and I promise you that it will inspire you to have your arms open wide each and every day to receive and believe, and with each day you are one step closer to “getting out of that chemo room” and into full remission! Sending you lots of love and healing energy, Suzanne

Dear Karen, funny how you posted the Before and after photos! I just privately took my own portrait of how I currently look battling ovarian cancer stage3 B too! I felt as though this is just a bad dream. I wanted to know the path I have been walking including surgeries, infections, chemo, and the path of Love shown by all my friends, family, and neighbors. I found my cancer at a pilates class when I was laying on the floor performing abdominal exxercises…Three days later I was scheduled for surgery . My Chemo is tolerable , but I am seeing light at the end of the tunnel. I have completed chemo through the halfway point and am feeling like a survivor. My battle has shown me that cancer isn’t going to get me right now. Awareness of this disease is first and foremost for all women….Thank you for your openness and Bald women are pretty sexy …don’t you think?
(at least thats what I tell myself these days!)

Brilliant work guys, nicely doneI Enjoyed It Very Much

The sisterhood of ovarian cancer survivors has many faces. A symbol of strength love and hope as hands and hearts join this circle of friends.The heartsongs of life echo around the world as we remember the fallen heros of this battle.So many earth angels work long difficult hours in search of the gift of life for women they will never know. More years have passed than one could imagine since this silent killer first ended a life. Treatment has advanced much slower than the ability we have to put a man into space. The need is more funding for medical research for a test for early detection. Improve treatment and save more lives every year. You have a voice to be heard use it for you might just save a life. I too am a member of the sisterhood of survivors for December 2007 my journey began. We know the drill on the chemo for that powerful army went to war to save my life. Etched in our mind is the fear of return and reading the shared stories has allowed me comfort and for that I thank you. We must vow to look far into the future of old age and thank God we made it!

Reading this web site I see my last entry has not been joined by new diagnoised or treated patients. My battle began December 2007 with surgery debulking chemo four days post op. Heart attack and wound infection prevented intrapertional chemo and systemic therapy completed april 2008. Ca125 level were over 400 to start dropped to 189 in january 2008. From that point on bottomed out 4.5-5.6 until therapy completed.Remained well within normal limits until January 2009 ca125 109.Ct of abdomen and pelvis is normal no tumor growth present. Now this is the part hard to understand is the waiting game you get to play just as your life is beginning to become somewhat normal. The game much like checkers or chess only the one to lose in the long run gets to be you. All the medical information I can read informs me of what mice and cell study inlabs are able to do and how dormant and active cancer cells die in a lab but just can’t quite kill the monsters killing women. When I read this web site I feel encouraged in some ways and disgusted in others. No matter how you paint the picture your survival satistics just don’t increase. Is ovarian cancer whispered amid the public awareness knowledge for I hear or see little of the losing battle of those stricken. The treatment of Hiv virus has far excelled the treatment of ovarian cancer and patients live far longer. Pray for my journey and maybe no new cases of the silent killer this year wouldn’t that be great.

It is now March 2009 and the beat goes on for seems I’m the only one left. September is Ovarian cancer awareness month ?Well seems to me those that cry the loudest get heard the most so get off your duff and let your voice be loud and clear. Contact your elected officials to request more to be done to save lives. Numbers you see it’s all about numbers and money.Guess you didn’t know less money for ovarian cancer research due to less of the population with it! Now if that’s not a kick in the teeth for those of us on the sick end of the stick. When you ask about a vaccine that has been in research for 5 years no answers on the data. Nothing is out there to have many plan B’s. So let your voice sing above the top of the list for the dollars .Make yourself known and help save your own life!!!!

I have ovarian cancer when I first found out that I had ovarian was when I was in the middle of my extermship. I would be so tired I would have to set down to rest. I could not get into my van . Because my belly would be so big it would hit the steringwheel. so I went back home to chicago to get the treatment done there. and the doctor ran test on me and they gave me surgery. and they drain seven quarts of fulid out of me. and the doctor remove my overy. The thing is that I stop going back to the doctors. Because I can’t afford the bills that I’m getting every month. The bill is killing me more then my cancer is killing me. because i’m worrying about the medical bills more then I’m worrying about my cancer. If anyone want to help me live a please. Donate me some money to help me with my medical bills. So that I can finish up my medical treatment.

To Eunice I encourage you to return t o a doctor or clinic for evaluation. Upon a visit to your doctor for follow up he will send you for test. Apply for indigent care if you are uninsured then go to the social security administratiomface to face or on line. Your medical records and information from your doctor will be requested. You have to step up to the plate so to speak take some control of your destination. When one door is closed another will be opened! Go to your local health dept for a physical as income based fees are charged and your services won’t be denied. Labs can be drawn at some public health dept. at reduced rates. Walk forward in this life to seek the proper care. Your doctor may have a case worker to guide and assist you on your journey. Determination of your own can play a roll in the road to success. If you receive a denial for social security take the refusal letter and unpaid medical bills you currently have to family and children’s services. There may still be a program to assist in the payment of the medical bills. Be assertive in you journey pack anger in your pocket for respect of those you seek are there to help you if they can. Get on your journey for life for the harder you fight for life the stronger you may become. I too am a fighter of this thief in the night and will make my voice loud and clear for more funding for research. Ovarian cancer funding falls far below breast cancer for the numbers .It’s all about numbers and we are not first on the list. Write your legislature and fight for your life. So get started!!!!