Chrystine’s Story: Stage IIIC Epithelial Ovarian Cancer

Chrystine’s Story: Stage IIIC Epithelial Ovarian Cancer

Something was definitely wrong. In April 1998, I began experiencing recurring bouts of fever, diarrhea, and fatigue. I made repeated calls to my internist to report my symptoms. Each time, I was told I was sick again because I was a teacher and was around a lot of students with germs. New symptoms appeared…bloating in my lower abdomen with continued, worsening fatigue. My distended lower abdomen seemed odd considering I was very fit and slender.

I called my internist again and was told that the bloating was from gas or my period or my age. My internist knew of the breast and ovarian cancer on my father's side but she had previously dismissed this because it wasn't on my mother's side of the family. By the end of June, my symptoms continued and the swelling in my lower abdomen had increased. I called my internist again, on the first day of summer break. This time, I insisted on being seen.

It was a Monday when I finally saw my doctor for a physical exam. Little did I know that I was about to step into a nightmare and my life would be forever changed. A CAT scan was ordered immediately, but it was difficult to image my ovaries due to abdominal ascites. I was then given an ultrasound. I kept asking questions, but the technician was more silent than I would have liked. When the doctor came out to talk to me, it appeared as if she had tears in her eyes.

She took my hand and said, "I believe you have ovarian cancer and I will always be honest with you." Not exactly words of encouragement. I thought I was a goner. My internist then told me that she consulted with my gynecologist and they made an appointment for me to see a Gynecologic Oncologist on Wednesday. Little did I know that this was an important first step.

I was completely stunned. I was so young and strong. I went for annual checkups with both my internist and gynecologist. My periods were regular and lab work for a new life insurance policy had recently come back normal. Lucky for me, I'm locked into a cheap rate forever!

I walked out of the Medical Building like I was a zombie. I have no idea how I drove home in such a daze. My heart was aching and I was in such dread of having to tell my husband and son. We all cried and held each other. I said, "You know how much we love each other now? Well, when this is over, we'll be even closer and love each other even more." And, as it turns out, that's very true.

Tuesday was a blur of telling friends and family the news.

Wednesday arrived and I couldn't wait to meet the oncologist. I was so nervous that I just paced. I couldn't sit down. My oncologist examined me and talked to me. She exuded confidence, calm, compassion, kindness and professionalism. For the first time in two days, I had hope. When I left my internist on Monday, I felt like I had received a death sentence. My oncologist shared all of the ugly things about cancer that were necessary and her answers to my questions assured me that I was in good hands. I thanked her profusely for giving me hope. Hope is so important….It's everything! It helped spur me on emotionally to deal with this whole thing.

On Thursday I canceled the classes I was scheduled to take that summer along with a vacation to Colorado with my husband and son. Friends came over to visit and cried with me all while I was drinking that lousy, "go lightly." That name is a cruel joke. It should be named, "Go like Hell!" That night our lawyer stopped by so that I could sign a living will and health care proxy. Now that was a real thrill! I had gone through this with my father a few years earlier and it seemed like I was too young to need to do this. I was only 45.

On Friday morning, just four days after my diagnosis, I was operated on. Fortunately, the cancer had not spread to any major organs or lymph nodes, although some was found and removed from my diaphragm. It took six hours to perform a complete hysterectomy in addition to thorough abdominal exploratory surgery, requiring multiple blood transfusions. I was diagnosed with Stage IIIC, Grade 3, epithelial cell, ovarian cancer. After surgery, my CA-125 was 222. On the 7th day, still hospitalized, I had my first round of Cisplatin and went home on day 9, feeling "like I was 95 years old."

Three weekly treatments of Cisplatin followed. By the third treatment, my CA-125 dropped to 34 (35 and below is normal). I then had the whole month of August to recuperate. By this time I had lost a great deal of weight and muscle mass. Now I really looked like a cancer patient. Before I used to work out four times a week; now, I couldn't even walk around the block. Major surgery, four chemo treatments and instant menopause, all within one month, had taken its toll on me. The anti-nausea medications available today are much more effective than what I took in 1998.

August was my time to gain some of my strength back and attempt to gain some weight. At the end of August, we brought my son back to college for his senior year at Syracuse. As a mother, I desperately wanted to get him settled in his apartment like I had each previous year. It was great being able to do that normal type of activity together.

The day after we returned, I started my two-day regimen of Taxol and Cisplatin every four weeks for six cycles. Each treatment took 4 or 5 hours. I would look around the treatment room that I shared with many older women and longed to live to see my son get married and be a grandmother myself one day. I had severe nausea and vomiting, barely contained by drugs, and I used acupuncture to help cope.

After each chemo treatment, I gave myself one week in bed; and then, I began my routine. I made myself get up every morning even though I was still nauseous, shower, and turn on Fit TV. I made a conscious effort to do something physical every day. At first I could only "walk through" the 20-minute workout, but at least I did something.

I couldn't wait for my hair to grow back again. The wig was hot and uncomfortable and I am not a "hat person," so I often went bald at home. I used to refer to myself as the 'Start Trek' mom.

My last round of chemo was on January 13th, 1999, followed three weeks later with "second look" laparoscopic surgery. The results took a week to come back. That week was extremely stressful and felt like a year. When my doctor gave me the results, she immediately announced that everything was great when she entered the room. She hugged me and I burst into tears then, and every time I shared my wonderful news with family and friends that day.

A few years after my diagnosis, I went to a lecture by a doctor doing research on monoclonal antibodies at a nearby university. I went up to him after he spoke and told him my story. He told me that the current clinical trials were recruiting for women directly after completing their chemo. I pressed him further and he said there would be a phase 2 trial in about a year that I'd be eligible for, so I continued to call the researcher until I got the dates and hospitals conducting the trial. I traveled to Pittsburgh from Buffalo 6 times to get the treatment. I was willing to do anything I could to prevent a recurrence even if it was just for the placebo effect!

Cancer has changed my life. I must say that my life is better now after cancer. I have my priorities straight and I feel love and emotions on a deeper level. Complaining about the weather seems silly to me now. I am just glad to be here to see the weather! I never would have guessed that I would resign from my job (that I loved) as a high school teacher. I now pursue volunteering through SHARE'S National Ovarian Cancer Helpline and do outreach work for ovarian cancer awareness.

I am so very grateful to have lived long enough to see my son graduate from Syracuse University, marry a wonderful woman and become "Mimi" to my 2 beautiful grandchildren. I love my life: babysitting my grandchildren a couple days a week, substitute teaching, tutoring and enjoying my incredible husband. I hope to be a blessing to others as I have been so richly blessed.

Author

chrystine_ovarian_cancer_survivor

Chrystine


  • Chrystine

    Barbara…Thanks for your kind words. I truly feel it is incumbent upon me to do what I can to spread the word about ovarian cancer signs and symptoms. I need to do this for the women who are still fighting or have lost their fight with this deadly disease.
    Chrystine

  • Sheran

    I have just been told I most likely have ovarian cancer. (from reports from the CT scan and the pelvic ultrasound) I meet with a specialist in gynecology/oncology in two weeks. Are there a list of questions I should have ready? I am searching other websites also. Thanks for your help and especially for this website.

  • Chrystine

    Kathy…I am so very sorry to hear about your recurrence but hope and pray that you are currently on a regimen that will work for you. You are not alone in your journey as, unfortunately, many women diagnosed with ovarian cancer do recur. If you have never called SHARE's Ovarian Cancer Helpline, please consider calling as we have many volunteers who have experienced a recurrence. I am very, very grateful to be in a long remission since my diagnosis and feel it is incumbent upon me to do the outreach activities I do to spread the word about the signs and symptoms of ovarian cancer. I am sending you my very best wishes and a big hug.

  • Kathy

    Chrystine, It was because of the abdominal bloating that I finally went to the doctor, and kept going back until I had a CT scan and was diagnosed with ovarian cancer. That was in July 2008. I never dreamed the symptoms I had would have anyhing to do with my ovaries. I had 2 rounds of chemo and was on Taxol and carbaplatin when I found a lump under my arm in May 2010.. The cancer has spread through my lymph system into my breast. Now I'm on taxatere and herceptin. I have hope that the herceptin is what I need to block the estrogen and kill the cancer. I pray cancer never comes back for you. Each time is harder, except for losing my hair. The third time isn't bad for that. Thank you for sharing your story to inform other women and make their life easier.

  • Chrystine

    Ruth…I am sorry to hear of your diagnosis and remember what that felt like. It is my honor and pleasure to be able to connect with other women, through SHARE, who have been diagnosed with ovarian cancer. It makes my day to have provided you with encouragement at this difficult time in your life. God bless.

  • Ruth

    Hi Christine – I was diagnosed with Stage IIIC ovarian cancer on May 10. I am awaiting the start of a clinical trial of Avastin and chemotherapy on June 30. I am only 50 years old and have a 15 year old, 17 year old and 20 year old. I want to see them get married and have kids of their own. Your story has encouraged me.
    Thank you.

  • Barbara Krauser

    Chrystine, Your story of your diagnosis is frightening, but necessary to tell. It is an encouragement to anyone with symptoms to trust her own body and insist on being seen and appropriately diagnosed.

    I found the rest of your story hopeful and heartwarming. It is hard to believe, but true, that for some, going through the terrible experience of being diagnosed and treated for a life-threatening disease can enrich our lives.

    Thank you for warming my heart.

  • Bonnie

    I am really concerned about something. I have had breast cancer twice. Once in each breast. I had them both removed. The first time the tests were all negative and I had chemo. The second time I was estrogen positive. No chemo, I just take Arimidex for 5 years. I am concerned because I did see a geneticist and took the BRACA test to see if I had and abnormal gene. I didn't. However, she told me that I might have a predisposition to cancer. I am wondering, could it come back in my ovaries? My oncologist just poo poo-ed it all. He said the Arimidex would take care of it. However, my second cancer came 6 years after my first one. I take Arimidex for 5 years. I am wondering, should I be concerned that cancer could come back after 6 years? Maybe I am being too over concious about this.

  • Chrystine

    Susan…so sorry you've had to deal with cancer as well as your mother having had it. Your doctor may want to test you for the BRCA mutation, even though your mother tested negative, IF she tested prior to 2006 as Myriad (the testing company) now has the BART test in addition to the regular BRCA test. You can read this link for further explanation: http://investor.myriad.com/releasedetail.cfm?ReleaseID=325803
    Going to a genetic counselor is very helpful in sorting out your risk for ovarian or a 2nd breast cancer.

    If you are not comfortable, call your doctor back with your concerns about your symptoms and ask the reason why a CA125 blood test is not needed. There might be a reasonable explanation. Concerning your ovarian cyst, complex cysts are more likely to be cancer and you do not have that type. It's always good to write down your questions to ask the doctor and write down his/her answers. That's what I do.

    Once you've had cancer, it's easy to get anxious about new symptoms. I wish you the very best in resolving these issues.

  • Susan Ravn

    Hi Chystine and others. I am new to this site. I had br ca in 2005 at the age o f 42. I had a lumpectomy, followed by chemo and radiation. Since then I have been on estrogen blocking medicines. Anyway, because my mother also had br ca at the age of 46, she was genetic tested. It was negative 2 times. Geneticist at a prominent center in North Fl told me I didn't need to take the BRCA testing because my mom's was negative and my father didn't have it on his side. So… I did not, but I did worry about the ovarian relation to the breast ca. I would have ovarian ultrasounds done about once yearly just to check it. I lost my period in 2005 due to the chemo. Anyway, I have been feeling extremely fatigued and very gassy lately. I went to the gynocologist to have another vaginal ultrasound done (last one was at least a yr ago) and the dr. saw 2 what he called "functional" cysts. It does feel like I could be ovulating on my right side it is the similar feeling, but it is prob unlikely due to my age, no period, etc. I have def. decided to go and get the genetic testing done, and am wondering if I should see if someone would give me the CA125 bl test even though I am terrified. Do I wait and see if the cysts go away in 3 months also. Seems like a long time. Seems like it is hard to get drs to do bloodwork these days for some reason. Like I am asking too much. Any suggestions. Sometimes I think I should have the ovaries chemically removed but now I guess that way I wouldn't know if they were normal cysts or not for sure. Suggestions, Chrystine or anyone please. I am also a teacher who works part time now.
    Susan

  • Ayesha

    Hi ,my name is Ayesha ,I am 44 years old and going through ovarian cancer stage 3c treatment ,I have a 5 years old boy and I am very positive that I will be cancer free soon ,please pray for me

  • Anonymous

    Hi Gabrielle… first, I am so sorry to hear of all the cancer in your family and that you are also facing the same thing. I'm glad that your family is very supportive; it means so much when facing cancer. I would suggest you write down your questions about the rising CA125 (and any other concerns) to ask your doctor. If possible, bring someone with you to your appointments and have them write down the answers to your questions (or you can do it). I found that to be very helpful.

    I wish you the very best.
    Chrystine

  • Gabrielle

    Dear Chrystine,
    I was diagnosised last year with stage III OC. I have been on a rollercoster ever since. My grandmother, mother and aunt died from this same horrible thing. My family has been very supportive of me. I went thru 5.5 rounds of chemo and my CA125 was 8.0. Now it's on the rise again and I'm loosing my mind. Any suggestions?

  • Chrystine

    Bonnie…So sorry for what you have been through. First, you can not be "too conscious" about cancer. If I were you, I would write down a list of questions for your geneticist and doctor. It sounds like you need clarification about being told you "might have a predispostion to cancer" and "the Arimidex would take care of it" in regards to your concern about ovarian cancer. Maybe you should ask your doctor what you should do to monitor for ovarian cancer and how often you should do it. If possible, bring someone with you when you go for a visit. I wish you the very best.

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