Wednesday, January 22, 2020

Symptoms and Signs of Ovarian Cancer

Backpedaling a little here. I felt that I should share my personal story of symptoms before diagnosis in hopes that I could help someone. 

Ovarian cancer presents so vaguely and there currently are no reliable screening tests. None. This leads to late detection. Five-year survival rates for ovarian cancer found at stage I - 90%, II - 85%, III-39%, IV- 17%. Seventy (70) percent of women are diagnosed at an advanced stage. This is a big problem that I intend to try to improve someway, somehow. I believe through more research and development we will make strides and we have in the recent years, but we have a long way to go.  I have too many precious women in my life that deserve better. 

In the summer of 2018, I had some bloating and noticed my tummy popped out more than usual. I chalked it up to weight gain and my IBS (irritable bowel syndrome). That fall I had slowed my running almost to a halt. I also had irregular menstrual cycles. By November, I had pretty much stopped my morning runs and my energy was low. I blamed that on my stress levels of being a mom to teens and being very busy.  By January of 2019, I began to have some vague abdominal pain but it began to persist daily. My bloating worsened to the point I felt 4-5 months pregnant.

January 21st -I had an appointment with my family doctor. I was having daily pain and I was concerned about an ovarian cyst. I'd had these before but not with the persistent pain.  I explained my vague symptoms and she booked an ultrasound.  

January 27th - I had an ultrasound.

January 29th -   I followed up with my family doctor. The ultrasound found a 6cm cyst with multiple foci cysts.  She referred me urgently to a gynecologist and ordered a CA125 blood test (Ovarian cancer tumour marker). 

Feb 5th - I saw the gynecologist. She explained that she felt like I had endometriosis from my complaints and that the cyst would likely have to be removed. She explained that she was referring me to a gynecology oncologist to be safe.  I had an elevated CA125 but that it could be caused by endometriosis.  My CA125 was 222 (normal 0-30)

I met with the gynecological oncologist a few weeks later.  She gave me 3 options  1 - watch and wait, 2 - have the cyst removed or 3 - total hysterectomy (laparoscopy).  After some quick thoughts and brief discussion, I opted for the total hysterectomy. The safest route.

On March 12, 2019, I was rolled into the OR for my surgery. Unfortunately, the end result was stage 2B or III ovarian cancer - epithelial high-grade serous carcinoma.  They removed a 10cm mass on my right ovary that was firmly attached, cancer had spread to my left ovary and my uterus. Biopsies came back positive for microscopic traces of cancer. Who knows how long this beast was growing in my body?

I was extremely fortunate that I acted on my instincts that something wasn't right. I had a awesome family doctor that listened to me and got things done. I had an amazing surgeon that booked me in quickly and did her magic in the OR. I can't imagine what state I would have been had I shrugged this off for a few more months.

My point of this post isn't to make you worry about every ache and pain but it's to inform you. Listen to your body and ensure you explain your symptoms well to your physician.  I hear too often people put blame on the doctors for not catching things. You are responsible for your health and for advocating for yourself.  The Doctor is there to guide and diagnose. If you are not telling the complete story, how are they supposed to help?

Hopefully, this will help someone.

5 comments:

  1. "You are responsible for your health and for advocating for yourself. The Doctor is there to guide and diagnose. If you are not telling the complete story, how are they supposed to help?"
    You sound like me Christa. I too believe that people must take responsibility for their own health. We need to educate ourselves, eat well, be active, and be aware of things that feel "wrong".
    I had few symptoms of my stage 2 Ovarian Cancer. I had had vaginal bleeding one night, and immediately made an appointment with my gynecologist. He was thorough and ordered an abdominal ultrasound and a vaginal ultrasound. Results showed a "3 cm mass, non-suspicious in nature." He presumed it was an ovarian cyst.
    A full year later, I had dizzy spells when working out. The next workout, I focused on flexibility and became dizzy again. I made an appointment with my gp. She checked me out, and found no concerns. But when I said "there is something not quite right", she took me at my word and ordered more tests. She also treated me for a possible UTI, and I became terribly ill. I had more bloodwork, and it showed that I was having an extreme adverse reaction to the antibiotic norfloxacin.
    It took three weeks for the "urgent CAT SCAN" to be scheduled and when it was, it showed a 9 cm tumour on my left ovary. There was concern that it might have spread to my colon.
    I had a consult with the gynae the next day, and met with the surgeon the following week. I had to wait for a month for my surgery as one of the surgeons was on vacation, and mine was doing her load, plus his, (and they only do Ovarian Cancer surgeries on a Tuesday.) In the interim, it turned out that the Norfloxacin was a bad batch, hence my reaction to it.
    My surgery went well, but I was a diagnostic pathological nightmare. Had my cancer spread to the colon? It adhered to it, but did not seem to have penetrated. It had not spread anywhere else.
    Seven years later, I am healthy and active.
    But, the lesson here is that I had no bloating, no weight gain, no fatigue. My only symptom was dizziness with strength training and flexibility workouts, and the vaginal bleeding from the year previous. I did ask my gynae if, in hindsight, he might have removed the ovarian cyst? He said that he would certainly have brought me back for a second test six months later.

    So, keep yourself healthy and be in the best shape you can, so that you notice if something is "not quite right". If you are healthy to start, you will be a much better surgical candidate.

    Thank you Christa for posting. As a PS, the CA 125 was a good diagnostic test for me. It was 750 when I was diagnosed, and dropped to 2, with surgery. But my gynae told me that many women have readings of 3500 etc when they are diagnosed. Unfortunately, it is a test that can give false high readings with other health issues, so do not be alarmed if you have a high reading, but get it checked out to reassure yourself.

    Johanna

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  2. ❤️❤️ thank you for sharing! You have been such an awesome support and inspiration to me and so many others. Hugs ❤️❤️❤️

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    1. I should add that I forgot two other things that happened: I had a cold in November that went on,and on, and on and I never get colds. And I had a long-existing cyst on my back that became inflamed. So, my immune system was obviously struggling with something.
      Most important in my diagnosis though was having a doctor(s) who listened to me when I said "something is not right."

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  3. Thank you both, for sharing your stories in hopes of protecting others from having one to tell.

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