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    Ovarian cancer, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Ovarian cancer, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    7 Answers from the Community

    7 answers
    • Cindy's Avatar

      On March 17, 2013, I will have survived 2 years since my last chemotherapy treatment with no evidence of cancer. Factors that I attribute to my survival are: 1) God's grace; 2) Prayers and support from friends and family; 3) I went to see my doctor soon after having symptoms; 4) My doctors diagnosed my cancer very quickly; (Ovarian cancer is known as a silent killer because it has symptoms that are common to many other diseases and is often misdiagnosed.) 5) My cancer was removed by a gynecological oncologist (i.e., a surgeon that specializes in gynecological cancers); and 6) Cancer research into better treatments and the management of side affects. Before I even had cancer, I participated in the American Cancer Society's Relay for Life which raises funds for cancer research and support for cancer patients.

      I initially went to my primary care doctor after I suddenly started having a pain in my lower right side whenever I moved and a few days later had a low-grade fever. I thought I was having an appendicitis. My doctor thought that there was about a 50% chance of it and immediately checked me into the hospital. After several tests and several different doctors looking at the results, they determined I most likely had ovarian cancer. The gynecologist from the hospital set me up with an appointment with a gynecological oncologist for surgery in another city who was an expert in ovarian and other gynecological cancer. He said that that if his mother had ovarian cancer, that doctor would be the one he would send her to for surgery. I read on the Internet that my surgeon was one of the top gynecological oncologist in the U.S. He taught classes on it and had written textbooks and wrote papers on the subject that he presented world-wide. After the surgery, my surgeon referred me to an oncologist in the city where I lived for chemotherapy treatments. Even though my surgeon removed all my cancer, I needed chemotherapy to get rid of anything too small to be seen.

      I received great emotional support from friends and family and even strangers. I found out how much people really cared about me which I didn't realize before. I had people praying for me from around the world. I had my surgery in a hospital about a 3-1/2 hour drive from our house. My husband drove me to my appointment to see my surgeon on a Friday prior to having surgery on the following Monday. We stayed the weekend there and went to a church we had never been before. My husband asked the elders there to pray for us which they did. One of them came up unexpectedly the next day and stayed with my husband while I was in surgery and kept him company. I was surprised after my surgery when several friends came to visit me from our city when I was in the hospital. My son also made a trip to see me even though he was taking classes at a university several hours away. My mom called me on the phone a lot since she lives even farther away. My husband was my best supporter. Besides being there for me and helping me out, the best thing I liked was that he agreed with everything I said even when we both knew I was wrong. He also gave up his "precious" remote control to me which he thought was the best thing he could do for me. Some ladies from our church provide a set of several individually wrapped small gifts - 1 per day - for one person each month who needs special encouragement. They chose me the month after my cancer surgery when I was just starting my chemo treatments. On the day my husband cut my hair all off I told him I thought it was a 2-gift day. He agreed and I opened 2 gifts instead of one that day.

      Resources that I found helpful were booklets on ovarian that I got from the American Cancer Society office near where I live along with books I checked out from their library. One book I remember, in particular, was about Gilda Radner who was an actress who died of Ovarian Cancer. Also, while I was in the hospital, I received a bag full of booklets and a notebook from an organization called "Bag It." (Their website is www.bagit4u.org). The notebook I received in my bag was the most useful. I use it to store in one place all my lab reports and medical information along with a calendar which I recorded my symptoms and treatments and appointments by date.

      over 7 years ago
    • derbygirl's Avatar

      How did I survive is a good question because it took me a while to call myself a survivor. In December of 2007, I went to my ObGyn because I was having pain on my right side. During his exam, I had so much pain, I cried the whole time. He saw me crying and stopped then said he was going to have me get an ultrasound. The ultrasound was painful but it did show a cyst twisted around my right ovary so he decided to remove it during an outpatient laparoscopy. On February 1, 2008, I went in to the Lancaster General Women's and Babies Hospital in Lancaster PA for my laparoscopy, thinking that I'd be home by the end of the night. When I woke up in a hospital room, I knew something was wrong but I thought it was because my heart, which is bad, caused complications. The doctor came in, looked at me, and said "I took the left one." He told me to get some sleep because I was staying and he told me he'd be back. I was confused but I was too tired and in too much pain to ask questions. When he came back, it was the next morning and he checked my incisions and discharged me. I could tell there was something wrong because I've known this man, at the time 14 years, and could tell by the look on his face. I knew however that he'd tell me when it was the right time so I waited. I didn't have to wait too long though because 5 days later he and I spoke on the phone and he told me he found a tumor on the left ovary. He set me up to see a GynOncologist the next week and on February 14, 2008, I was officially told I had ovarian cancer. On March 4, 2008, I was back in the OR with my doctor and the ObGyn oncologist having a total hysterectomy. I just celebrated my 5 year anniversary being cancer free and to this day I know why I survived and that is because my ObGyn took the necessary steps to find out what the problem was and act on it quickly. During my hysterectomy, I had a chemo bath due to my heart problem so I haven't had to have IV chemo which made me feel like a cancer outsider, I even had another cancer patient tell me if I didn't have IV chemo or radiation that I wasn't a survivor. It's been only recently that I have felt strong enough to say "I am a Survivor." So how did I survive? Well here it is, I was meant to survive!

      over 7 years ago
    • denisecoats1's Avatar

      Since August 16, 2012, I have been in remission. I praise God for leading me in all the right directions and Christian doctors who prayed for me and for their knowledge for the right treatment. I could not have made it without the support of my family and friends. I went for my yearly exam in March 2012, and upon exam I felt a sharp pain in my left side. The Dr told me I need to do a vaginal ultrasound I was then told I have a large mass, that needed further investigation. I am a Children's pastor and I had to get all my summer stuff done before I could have surgery. In April 2012 I went for surgery thinking it was nothing but a fibroid tumor, during surgery the tumor was removed and it was wrapped around my Fallopian tubes and I bleed out quite a bit. After several weeks the tumor board finally came up with a diagnosis and I had stage II Leiomyosarcorma. The first of May i started chemo it was very tough on my body but every week I took a red marker and marked each treatment off to make one step closer. I made the mistake of reading the hospital reports and I suggest not doing that it will scare you and trust your Doctors that is what they went to school for. I live each day now to the fullest I am back at work and loving each day God has given me. I help others now with their journey when they have questions or just want to talk about it. I will be walking the survivor lap this year on our Relay for life team, and I am so excited.

      over 7 years ago
    • daniC's Avatar

      I am now 2 years out from my total hysterectomy ( omentectomy, appendectomy, bowel re-section, etc!). Ovarian IIc & early endometrial cancer. I had 6 rounds of chemo & then radiation treatments also...am NED ( no evidence of disease) !! Huge support from having a CaringBridge page for me & friends & family to use to communicate & not get worn out by same conversations over & over...I STILL use to update as I am monitored quite closely. So, I advise CaringBridge or other site. Many health centers have them now. I also had a GYN/ONC & this is CRUCIAL for surgery. It is really a big team effort & necessary to be. I am lucky enough to have a couple great choices where I live , but would have traveled if I didn't. Sense of humor-also CRUCIAL. And asking for help. With EVERYthing you can think of. Work through your day, from getting up to going to bed. At different times I had friends & family stay w/us for specific tasks & it worked beautifully. Try to stay flexible since there are SO many adjustments one cannot anticipate. Physically, but also emotionally, too. Onc social workers are valuable people to help w/support of all kinds, including resources for other help w/$, like gas cards from ACS, which I had no idea about. Tides to treatment, help w/insurance struggles. CALL on people, because they want to DO something. Just always remember to switch it to thinking like, " if it were my best friend" & act from there!! Also, for chemo, my boyfriend & I watched silly movies & ordered take out, making it something to look forward to. He shaved my head & we shared video w/friends...I painted my toenails before every session & others did it in solidarity w/me. Come up w/some enjoyable " ritual" & share it w/friends & family to feel like everyone is participating. And accept w/gratitude people's support. Especially the delicious homemade meals. Even when I couldn't eat it, it was so important to know people were looking out or Chris ( my sweetie) too. Team effort. Best, all!!

      over 7 years ago
    • Donna1943's Avatar

      My support was made up of family, friends, and church (pastors and members).
      Got a lot of support from my Home Health Care RN, specialists, your web site, e-mails, phone calls, and cards. Also from the chemo RNs. Yes, these things made a world of difference. When I moved here, I had to find new team of speciaiists. Some MDs are more supprotive than others. My female cancer surgeon was tremendous support. I also received a lot of support from my HMO's Health coach RN. Web sites on cancer were very helpful. Resources helpful were pamphlets, magazine articles, prayers, and my daughter's continuous support.

      over 7 years ago
    • rjtom's Avatar

      My initial symptoms were pressure and pain in my abdomen and bloating. After being misdiagnosed with a UTI at the ER my urologist found that I in fact was stage IIIC ovarian cancer. The immediate support of my doctors sent me in the right direction and I found a great gynological oncologist. The support of my family and friends was overwhelming. Without them I don't know what I would have done. The American Cancer Society offers numerous resources for everything from nutrition, psychological support, even rides to and from chemo if you need them! The Relay for Life was also a source of strength for me and is something everyone should experience. I won the courage award at last year's local Relay in my area and the out pouring of support really helped me through.

      over 7 years ago
    • pammyjo's Avatar

      Today, Feb12, is the 3rd aniversary of my surgery snd diagnosis. I am a survivor because of seveal factors that I'll list in front logical order.
      1) I listened to my body. My symptoms were difficulty urinating and post menopausal bleeding.
      2) I did my own research. When I was originally diagnosed with something else, I was able to say I thought it could be cancer and explain why in clear, intellegent, correct terms.
      3) I was lucky enough to have a PC Dr who actually listened to me, and ordered tests. When CA125, ultrasound and CT were inconclusive he refered me to a local gynocologist for a probable uterine fibroid.
      4) I listened to my instincts. When the local gyno who I was refered to refused to answer my questions, I got on the internet to research where I should go.
      5) I took action. Internet research and two days on the phone landed me in the women's clinic at UCLA 4 hours from home.
      6) Go to a large teaching Hospital or Cancer Center, no matter how far. It probably saved my life. When my laparoscopic surgery for a benign fibroid became a hysterectomy with optimal debulking, my gyno-surgeon was able to call in the gyno-onc team (including the head of the gyno-onc department) to do it right and in only one surgery.
      7) Get 2nd and 3rd or even 4th opinions. I had my PC, my UCLA oncologist, UCLA gyno-onc, UCLA medical onc and my local medical onc. They didn't always agree, but they were great about explaining their reasoning and respecting me to make informed decissions. Plus when they did agree, it was real peace of mind that I was doing the right thing.
      8) Do your own research, BUT, consider the source. There is a lot of crazy stuff on the internet. I found that www.pubmed.org is a wonderful site to find up to date research. My Ovarian Clear Cell Carcinoma is considered rare with little research bring g done. But I was able to find some current research that even my top Drs were unaware of. UCLA Drs requested copies of it because of its direct relevance to my cancer. You will be told not to google, but I disagree, just make sure it's a reputable source and that it's relevant to your specific cancer, grade, and stage.
      9) Accept all the help that is available. This is not the time to be proud. You are fighting for your life. I talked with the nurse navigator at the Hearst Cancer Center. She set me up with free transportation , a coupon for wigs, meals, scarves, Look Good Feel Good, Well Fit as well as a shoulder to cry on.
      10) PRAY! Ask your friends and family to pray. I could feel all the prayers giving me strength when I didn't think I could do it any more.

      over 3 years ago

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