Linda: Clear Cell Ovarian Cancer

Hello! I was diagnosed with clear cell ovarian cancer on March 31, 1993 at the age of 45.

My story actually begins about 3 months prior to my diagnosis. I had my regular appointment with my gynecologist for my yearly physical exam. I had no physical complaints and I was feeling well. The exam went well, my pap test was normal, the doctor wrote "well woman visit" on my paperwork and said: "See you in a year."

Just about a month or 6 weeks later, I began to notice a mild discomfort in my lower abdomen that would seem to come and go. I didn't think anything of it since I had just seen the doctor and everything was fine. Then I began to notice a few other symptoms such as my belly looked almost pregnant from a side view, but I attributed it to poor posture or just plain aging. I also noticed I needed to use the rest room more frequently after just a couple cups of coffee whereas before I could drink a whole pot of it.

By now, we were into March with the real doldrums of winter where everyone was anxious for spring to arrive. I thought I was dealing with depression as my father had also died in March several years prior and I always felt down that time of year. I just thought the depression was taking the form of physical symptoms this time. I decided to call my gynecologist to have him check me again. I fully expected him to say nothing had changed and he would write me out a prescription for a mild antidepressant to get me over this slump. I had never taken anything like that, but I thought there is a first time for everything.

I was able to get an appointment right away and to my surprise, he said: "There's definitely something there that wasn't there 3 months ago." He had blood work drawn right there (CA-125) and sent me for an ultrasound. Something was obviously found on the ultrasound and the doctor wasn't sure what it was other than being large and needing surgery. He explained that it could be just a cyst, in which case he would just take it and the ovary and fallopian tube on that side. If there was any cancer, he would do a full hysterectomy, but of course, I would not know until after the surgery.

As I was being wheeled into surgery, the last thing my gynecologist said to me was: "At least you don't have to worry about ovarian cancer as your CA-125 is only 35, which is normal." Imagine my shock when he told me in recovery that I did, indeed, have ovarian cancer!

At my post-op check-up, he referred me to a gyn/oncologist. I never knew there was such a specialist! When I saw her, she explained that clear cell ovarian cancer is considered very aggressive, is non-differentiated, and is a grade 3 cell. Because a gynecologist had done my surgery, I did not have any lymph glands removed so I wasn't staged. The gyn/oncologist said usually that matters, but with clear cell it wouldn't matter since it would need to be treated aggressively in any stage. She said that I was probably a stage 1-C or III-C because the tumor had adhered itself and had to be broken to be removed, so obviously some cells had spilled out.

I had 6 doses of monthly chemo that really knocked my white cells down and after the third dose, I ended up in the hospital with an infection. To finish my final 3 doses of chemo, I had to have 14 doses of Neupogen a month to raise my white cell count.

After I finished chemo, I had a CT scan that was clear and I opted for a second-look surgery. I really wanted the lymph nodes biopsied to see where we stood. I also had another surgeon remove my gallbladder and appendix at the same time so I wouldn't have to worry about those later on.

I did have testing for the BRCA 1 & 2 genes and was negative for both.

During all of this, I was a very active wife and mother of 3 in 3 different schools. My youngest child, who was 11 when I was diagnosed, was diagnosed herself with end-stage kidney disease within a week of my diagnosis. In fact, they did a bone marrow biopsy, thinking she may have leukemia (she was very anemic) and I was wondering how on earth I would care for a child going through chemo at the same time I was going through it! As it turns out, she had to start dialysis and my husband donated his kidney to our daughter 5 weeks to the day prior to my second-look surgery.

I've had several scares over the years, including a very painful lymphocele that looked "very suspicious" according to my gyn/oncologist, but proved to be benign when I had it removed. I also had a total bowel obstruction just a couple years ago, but that was due to adhesions and no sign of cancer.

I am so grateful for my life and never take one second of one minute of one hour of one day for granted. I saw a blurb in the Rochester newspaper asking for ovarian cancer survivors who would like to speak with those who call the SHARE Helpline and of course, I volunteered and have been doing it for many years now. I also am one of the panelists of Survivors Teaching Students where we tell our stories to upcoming physicians, nurses, nurse practitioners and physician assistants. I never knew my maternal grandmother actually died of ovarian cancer until I got her death certificate and read that! I was always told she had some form of "female cancer," but none of the doctors I had ever seen over the years said that it may have been ovarian, so I do impress this upon the students in the Survivors Teaching Students program.

I continue to be very active and go to water aerobics two nights a week and a gym three other days a week. There is a bulletin board at the gym I attend and I always am sure that there is a SHARE symptom card posted there. If someone takes it, I replace it the next time I am there. In closing, if I can offer hope or at the very least, a kind, listening ear, I feel I have done my job.

Want more information on clear cell ovarian cancer? Check out our ovarian cancer resource links.

Author

Linda

Linda is a SHARE Helpline volunteer.

 


  • Maricela

    I was recently diagnosed with Clear cell Ovarian Cancer on February 28, 2013. Thank you for sharing your story.

  • Penny Vineyard

    Thank you so much for sharing your story. One of my sisters' was diagnosed with clear cell cancer in Jan. She had chemo before surgery and after as well. Now she has been told that there is a spot in her abdoman that is cancer and can not be removed. She is 51. The older of my brothers was diagnosed with colon cancer the same week in Jan. He is 49. My youngest sister, who is 43, was diagnosed in May with breast cancer. Both sisters have always had regular exams and mammograms. No one is exempt at any age and the more people share, the more aware people will be. Cancer is ugly, but it is not a dirty word to be wispered. It demands shouts and tears, along with prayers and HOPE. My siblings say that they have learned that instead of asking "Why me?" to instead say "Why not me? Am I so special that I should not have to go through this? Who should have to? Who would I give it to that is more deserving?" They say that this trial is now their testamony about the Grace of God.
    Blessings to you and your family.

  • Anonymous

    I sleep all the time and my joints hurt so bad. I feel dead already. I just finished 6 months periteneal and additional 12 more. Is this going to work?

  • None

    I am a 37 year ovarian cancer survivor. I had a hysterectomy in1948 when I was 48 years of age.The surgeon dropped the tumor into my pelvic area and it showed carcinoma cells. The radiation Dr. Came to see me and in no time I had 21 radiation treatments.At that time they didn't know what the side effects would be but the radiation equipment gave a spread and it caused a lot of damage to my insides.I went several months doing pretty good but then one morning I woke up and my feet were tingling. This went on for a few month until,I asked my radiation oncologists, who was my next door neighbor, what's going on with my feet?He prescribed several test and called me over one evening and said I had a mass and needed chemo.I got all my I records and went to the U. Of Chicago Hospital. He repeated the tests I already had taken and assured me I had ovarian cancer and would start chemo. Back them you aspent the night in the hospital hooked up to IV's all night first have the drugs put in and then a dose of lasix to check the kidneys so all night I would throw up and then to the bathroom to pee. It was a nightmare. This happened on a Fri. Afternoon eand Sat morning they undid the IV and prescribed a pill I was to take every day and sent me home. I would do this for a year. When I'd got home I stayed in bed and I felt like my nerves were jumping out of my nad body and by Sunday I felt calm. This went on for a year. At the end of the year I had an exploratory surgery to see if all was ok and it was but I was checked every 3 months with a ct bscan. I have had many problems since and the radiation doesn't stop giving me problems. I have neuropathy from my toe to my waiste. My bladder and bowel are ruined. I've had 8 hip surgeries and my drop foot has now frozen so it doesn't.t move in any direction. I'm full of scare tissue so a colonoscopy can't be completed, I 'be lost all balance and it just doesn't seem to stop. My life has come pretty much to a standstill and I have always been one who enjoys doing thing and being in control. I now need help for most every thing except I can still pretty much care for my personal things with the help of a grabber to get dressed. I have been very thankful to"God for the blessing of years he has given me. I saw my daughters graduate college, get married and make me a grandma. I am now 85 and my body is getting tired but I will be around till it is my time to get a new body and be with Jesus. It has been a struggle but 37 years ago there wasn't much hope so I was pretty lucky. I thank God for that. My dr. said I was a miracle.

  • Geri

    My husband found this page after I had confronted him about some fear that arose today after reading an email from a research site regarding clear cell ovarian cancer… the same cancer I was diagnosed with in December of 2014. It's been a year already… but a long one at that. Here is my story… My son was 8 months when I was changing his diaper one day and he kicked, and I felt discomfort. I expressed concern to my husband and decided to get it checked out by my women's health doctor. He said that if it made me feel better, we could do an ultrasound, I said it would. And well… there it was, something we both didn't expect to see. He ran blood tests, they came back negative so we decided to do the surgery there in my local hospital since we were sure it was not cancerous, or at least that is what I was told. But unfortunately, the biopsy came back showing ovarian cancer. We got the call and my husband and I went in to hear the bad news face to face. I was in shock, then I cried, and cried, and cried. The whole afternoon was shot with my tears of sadness and fear. Two months earlier I had married this wonderful man, the father of my beautiful son, and now this. We started trips to a city four hours away to get further tests done and to check and make sure it hadn't spread. It hadn't spread, but it was highly recommended we get chemo as a preventative measure. January to April 2015, chemo every three weeks. I'm done with it now, and have had two 3 month interval check ups since and still going strong. As I type this, I hear my little one (now 20 months old) giggling in the other room. I have much to live for and can't give up and give in. I am a child of the most high God, and I am here to serve Him. And I feel that my number one reason for surviving all I put myself through in life was so that I could be a mother to this child and to supervise his life so that he may grow up into a fine young man one day, and I'll be right there beside him loving him all the way. This is why I can't give up and give in to worries that try to take me down daily. This is why I need to constantly remind myself that it is possible that any day they could find a cure to all cancers, including aggressive ones. God is great and one day I'll be with Him again, but not any time soon… I've got a son to raise. And to all of those still scared, still worried and afraid… all I've gotta say is use your feelings and your thoughts to guide you to the light of life. Don't get dragged down by the darkness, even if it comes on strongly, find ways to see good through it all. Think about and act on what keeps you content in life. Live your best life now! Yes, it may sound like I'm super woman, but I wrote this post not only for you to read, but to release my at-the-moment fears and to give it to God, as well. Because we all need outlets, nothing negative should be bottled up inside, especially our thoughts. God Bless each and every one of you. Much Love and Kindness, Geri

  • Anonymous

    Hi Linda
    I am very happy that you are still cancer free after 20 years. I also have been diagnosed with clear cell ovarian cancer about 10 months ago. I have undergone chemo (platinum based) a CT scan showed some.lymph nodes had grown, I.then did 37treatments of radiation about a month ago. The CT scan has indicated that the lymph nodes has shrunk but not completely gone. My question is; can you share your chemo treatment, what medication was used & did.you have radiation also? I have 2 dr,s with different treatments being suggested & do not know which will be the best option.

    I wish you continued good.health.
    P Mc

  • Pauline Fetterman

    I have called share a few times since my diagnosis and each time the people I speak to are extremely helpful and caring. If they don't know the answer they go out of their way to find the correct answer and person who has more experience with my type of ovarian cancer. I cannot thank you enough for being there and being so kind and caring.

  • Loes

    Wow!!
    I was diagnosed with clear cell carcinoma in May of 1997 after a simple bi-annual OB-GYN visit, where the right ovary was larger than the other and painful with the exam. CA 125 was elevated, ultrasound showed enlarged ovaries, no abdominal mass. On June 23 1997 I went for surgery after a long conversation with the surgeon regarding post-op treatment with different types of cancer. The worst would be clear cell, a fast growing but less occurring type.
    Post surgery he came to my room and told me that it was indeed cancer and it was clear cell. The left ovary was cancerousand the right with abnormal cells but not cancerous. Intestines were checked "cm. fo cm.", no lymph nodes were affected, neither the omentum, which was removed and free. I asked what my chances without chemo were and with chemo. Both were 2 months, 2years or none at all. I opted out of the chemo after I had to wait with starting the chemo because the nurses were on strike. I had started Essiac tea and felt better within 2 weeks, looked better and continued this for 3 years, 1 year 3xday, 2nd year 2x a day and 3rd year 1x a day. In September of this year 2014, 18 years later the CA 125 was 606, a repeat test shows 665.
    I am being tested to see why this is so high. No specific symptoms, except diarrhea and loose stools for 3 years. Colonoscopy did not show anything.
    Is it possible that clear cell cancer can re-occur after so many years?

  • Evelyn

    I was diagnosed with clear cell ovarian cancer in Jan 2013. After reading much literature, I am afraid I only have 2 more years before it comes back. Clear cell is extremely aggressive. If anyone can give me some comfort, I would be most appreciative! I'm scared. I just turned 66.

  • Liz Arbogast

    I was diagnosed in April of 2014 with clear cell carcinoma, stage IIIC. I had my first surgery in April , 2014, to remove a 2 lb mass, my second 8 weeks later to remove lymph nodes and a debulking surgery. It's crazy but I set myself goals. First was not to be afraid to put trust in God and my surgeon who is also my oncologist. I am a CHP officer, I set a goal to be back to work full duty after my chemotherapy. I had 14 rounds of chemo including IP chemo in 18 weeks. I went back to work full duty 8 months after my diagnosis. I finished chemo Nov. 2014 and was full duty in January 2015. I used rubber bands, the kind at the gym to work my arms during the chemo. I walked as much as I could, even when I didn't want too. I forced myself. As far as treatment, I felt very comfortable, I asked my doc if she was me what would she do? It worked, I'm confident, I have complete trust in my doc. I believe, it is very important to trust the Dr. whom literally holds your life in there hands. If you don't find another, if your Dr. Doesn't spend time with you, find another. Thanks for your stories, god bless everyone.

  • Martina

    Thank you all for your posts. I was diagnosed with stage 1c, possible 2c clear cell ovarian cancer in June 2013. I had MAJOR surgery – the ballroom is now empty- including all "lady parts" as well as the fat layer around the stomach and 34 lymph nodes. I was a WRECK after surgery. My tumor grade was 3, I guess all clear cells are, and the tumor had doubled in about 3 weeks. I then had 6 cycles of carbo/taxol 3 weeks apart except when they had to be pushed out because of my white cells tanking. I also had to have the dose lowered bc of neuropathy. So, I am now 2 years out of chemo and NED but am a wreck bc I know this is an aggressive type of OC. When will it come back if it is likely to come back? Is there any point that you're relatively "safe"? I have lingering problems, especially GI wise and so am always thinking it's coming back and also had to have 2 knee surgeries as I developed severe knee pain during the chemo. What is the chance of clear cell OC staying away?????

  • Stephanie

    I would like to know can people survive from clear cell cancer

  • Windy Dougherty

    I should start by saying I have been cancer free for 3 years now. they removed my right ovary 3 years ago due a cyst which contained a mucinous cystadenoma carcinoma tumor. had the staging done and appendix removed which they found a carcinoid tumor on… Just found out today they found a clear cell tumor on my ovary in a cyst that they removed on the 26th. Oncologist scheduled me immediately in tomorrow… I'm reading a lot and getting very nervous… does this type of tumor always require radiation/chemo treatment? Any help, guidance or answers are much much appreciated!!!!

  • Linda Gilmore

    In June of 2009, I had surgery for Ovarian cancer which was a clear cell stage 1 1a. My only symptom was a feeling of fullness in my stomach. I had 6 monthly treatments of Carboplatium and Taxol no radiation. I did have lymph nodes removed as well but showed no cancer. I had just celebrated my 66th birthday last month and continue seeing my gynecologic oncologist yearly. My most recent Ca125 in September 2015 was a 9. Yes, life is good, I take one day at a time, take NOTHING for granted, and try really hard NOT to worry about "wonder if". Blessings to all who walk this path.

  • Mary C.

    2.2 years NED, clear cell stage 1a. Did the chemo described above. I feel great, every day is a gift, give it all to GOD. He will take it for you. Exercise daily, give thanks everyday, GOD BLESS

  • Jamie

    I was diagnosed Nov 2014 with Stage 3C grade 3 clear cell ovarian cancer. Had surgery Nov 2014 with removal of what was left post hysterectomy 20 years prior, so left and right ovaries, omentum, peritoneal tissues, lymph nodes etc and basically 3 main tumors. Largest was left ovary which was double grapefruit sized, plus ascites fluid, appendix etc. My PA/gym thought it was appendicitis and my gastrointestinal Dr thought it was IBS. 6 months chemo and now doing what will be about 1 1/2 years Avastin only treatment via IV now in my hands post chemo. So far so good, we always stress at each CA 125 test and CT scan but so far okay. Had half thyroid removed Dec 2015 non cancerous and now on Synthroid. I am still here in remission so life is good. CT scan coming up March 28th 2016 with hopefully good results March 30 2016. May 11 2016 will be 1 year post hemo. Fingers crossed!

  • Pat Murphy

    What a moving testimony, Linda..a true test of strength and spirit!
    Thank you for sharing your challenge with others.
    Your words offer hope to so many…

  • Ella

    Last April 2016, my mom had hysterectomy and removing of tumors that can be seen by her oncologist. But her oncologist wasnt able to remove everything because some tumors were attached to her intestines that might cause bleeding. Results show that my mom has Clear Cell Adenocarcinoma, Stage 3C. This July 7 she will be receiving her second round of paclitaxel and carboplatin. She has asticites that need to be removed before her 2nd chemo. But she is coughing right now. It is possible that the cancer may have metastasize to her lungs. Please send us prayers. We are financially challenged because our country doesnt have a good health support. More prayers for us please.

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