Better diagnosing of ovarian and peritoneal cancer

gaylestorm

I am an active 65 years old, mother, grandmother and wife.  My parents and grandparents all lived long long lives.  Cancer took me completely my surprise.  Last year 2019 I went to my Dr about loosing too much weight and a change of bowel habits while on a diet.  I am an old nurse and while the weight loss did surprise me, who complains about losing weight.  Being healthy and very active cycling, swimming as well taking care of my grandchildren a couple of times a week, why would I suspect anything was wrong.  However this year 2020, I developed abdominal pain. Covid made testing just about impossible and long waits for imaging.  I was a good advocate for myself.  I phoned my GP regularly updating on my declining condition to her.  On my last call to her, I told her everyday my prognosis was getting worse.  I ask if there was any blood tests for cancer  When my CA125 came back elevated, I connected all the dots and knew that all my symptoms were ovarian cancer.  My Gp sent me to the local ER for imaging with the results being ascites and bulky ovaries for my age.  The ER Dr read the report to the gynecologist.  I never warranted a visit or examine from the gynecologist.  It was determined that these results were  normal and that i was fine with no ovarian tumour or anything "sinister" happening.  After a lengthy discussion / argument with the Dr about my symptoms and what I thought was happening, she consulted a gynaecologist who recommend that I have another CA125 and scan done, in six weeks.  After 3 weeks, with increased symptoms I appealed to my Gp who once again did more blood work.  This time my CA125 had quadrupled and with that, I got called to see the gynaecologist. For the first time I had a complete physical and a tumor was palpated. I asked to be refered to a gynecologies oncologist but was told I needed a diagnosis before being referred. I later learned from my oncologist that a CA125 count of over 500 is almost always stage 3 ovarian cancer.    One week later after a laparotomy, I was diagnosed with stage 3b ovarian cancer which turned out to be primary peritoneal cancer 3C. 
Not being treated by originally by the oncology gynecologist put me in a worse condition.  First, I was subject to two surgeries in four months, Second, having surgery before chemo is not standard practice, usually you have 3 chemo sessions to shrink tumours before surgery and then complete the last 3 sessions.  Third,  the gynecologist who did the surgery did not remove my uterus and in doing so,made it impossible to remove the uterus and when on my second major surgery, I had my omentum removed and debulking.  Furthermore when removing my fallopian tube and ovaries and tumour, the cancer seeded at the laparotomy port site, which is why it is recommended to have the surgery done by a oncologist gynecologist.
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I am extremely angry with my original treatment at my local hospital.  Not believing me and not putting all the pieces together,  elevated CA125, ascites, and bulking ovaries and pain and declining physical condition. The treatment that I had original wanted and later received at the cancer clinic was fantastic.  I was listened to and every step explained.   
I think I am a strong advocate for myself and yet even with good understanding of medicine I was not heard.  If a woman with an elevated CA125, bulky ovaries, and ascites as well as other symptoms is not diagnosed, how does anyone get diagnosed?
I can not wonder how my outcome would have been if I had seen different Doctors and had been treated by oncologist gynecology.  While this cancer is a chronic disease, I think I would have been a better place had I received the correct care and treatment.
My advice to others, do not worry about being a nuisance to your Dr.  Weight loss and change in bowel habits are two of the first symptoms of ovarian cancer.  Go to a different hospital if necessary. Keep a binder of reports and information, which you, the patient are allowed access and then ask questions accordingly. 
Do not  give up, ever.

kastoyles

@gaylestorm - I'm so sorry to hear what you endured before your diagnosis and treatment. As with any cancer, early detection and treatment is the key, it only makes sense. Ovarian Cancer disguises itself as so many other issues and there has to be a better way. I have IBS and at first that's what my doctor and I thought it was. We soon learned otherwise.

Yes, we do have to be our own advocates, and I'm fortunate to have a GP who listened to me and sent me for a pelvic & internal ultrasound and then an MRI after the mass was discovered. After my hysterectomy the pathology showed Stage 1C Clear Cell. I was referred to a gynecological oncologist and subsequently had six rounds of chemo. I'll be coming up to my fifth anniversary of finishing treatment in July. I echo your advise. Be a pest! If your doctor doesn't listen to you, find one who will.

You have found the right place to come for support. The women on OVDialogue are awesome and have been exactly where you are now. Feel free to come here to vent, ask questions and participate in discussions. We're glad to have you as a part of OVDialogue.

Fearless

@gaylestorm

I hear your frustration, I shared your anger..... 

What I've learned in the past five years of living with this disease is that outside of the practice of gynecological oncology, there is little-to-no expertise in the subject within the general medical community and that includes gynecologists themselves.  Yes, they study about it. But expertise comes from practice. While it may seem there are a lot of cases out there, compared to other cancers (breast a great example) there are very few. Most GP's and gynecologists have never even had a patient with the disease in their practice.  So even armed with symptoms, CA's, scans most are at a loss about next steps and the ball gets fumbled a lot.  Given the vagueness of our symptoms, we end up bouncing between doctors and tests while they explore every option other than OVC.  I often refer to it on the pecking order as the disease of last, not first consideration.  I swear if I heard, one more time, it was aging, maybe IBS, I wasn't getting enough exercise, I should be more careful with my eating habits I was going to scream.  I carried my symptoms....on again/off again bloating, constipation and diarrhea, low back pain for at least three years even though I had a history of ovarian and uterine cysts and I had been on HRD to control menopausal symptoms for long past the recommended timeline.  I actually had to fake pain in order to get my GP to book a scan.  She suggested it was likely and inflamed bowel.....surprise! 

Of course the biggest issue is the lack of a reliable diagnostic tool.  Breast cancer has the mammogram and self examination, prostate cancer has a blood test. There's the PAP for cervical cancer and both a colonoscopy as well as new stool tests for colon cancer to name just a few.  All we have is the CA125 which is not at all reliable, and just a tumor marker at best. Definitive diagnosis comes from scans, the expertise of a trained oncologist, and pathology either from biopsy or surgery. 

Furthermore the provincial medical systems operate very differently. You were told, where you are, a diagnosis must accompany a referral to a gynecological oncologist.  Where I am, it is reliant on the gynecological oncologist to be that diagnostician so referrals are quite easy to obtain.  I can understand why most are concerned about delays associated with getting to treatment, in some places much longer than I experienced.  But it's really the delay in getting to diagnosis that is most problematic to our survival.  We are living longer and better lives but our mortality rate is not changing.  So yes, I agree we need to be much better advocates for ourselves and our needs, both physical and emotional.  That's only going to come when we improve awareness of this disease. It never once occurred to me that I might have OVC....so I fell for all the other excuses, until I finally realized there was something terribly wrong and the only way to find out what it was was to force some kind of investigation.  

As for treatment plans once diagnosed they all differ.  Yes, they do surgery before chemo when appropriate. That's the approach my gyne-onc took.  Open me up and if what he saw on the scan resembled the reality, remove all visible cancer and then a course of chemo. Chemo before and after surgery is not necessarily the only approach.  

We can't change what's past for us. We can only deal with what lies ahead and now armed with far more information that we had at the outset.  Don't hold onto that anger.  Try to channel that energy into raising awareness of the disease and advocating for improvements in treatment so that one day, no one has to follow our path.  
  

gaylestorm

@Fearless - Vol Mod
Very well said.  We are not alone.

Sylviequebecbc

@gaylestorm so sorry you had to go through all that! I have been living with ovarian CA for 5 years, still being watched....scans are really the only way to see clearly what is going on,  but too many scans can create its own problems, so I am in a pattern : scan, wait for the cancer to grow, surgery, chemo, repeat...it can be frustrating, but I try and focus on the in-between times, when I feel my best, and enjoy life.  Stay strong! 

Fearless

@Sylviequebecbc We're both in the same cycle. I know what you mean and agree...focus on those in between times and enjoy them to the fullest. I"m coming out of treatment shortly....so looking forward to being able to enjoy the summer, and maybe even the fall. Strange, but for me, the cancer was originally detected around year end 2016 and each of my two  recurrences has also occurred in the same timeframe.  

Sylviequebecbc

@Fearless - Vol Mod I am sorry you are in the same situation, but at the same time, it is always good to hear I am not alone. I hope the rest of your treatment will go well, and yes! Enjoy your summer!!! 

gaylestorm

@Fearless - Vol Mod. I have taken your advice and am starting to channel my energy into ovarian awareness.  I have entered a team for the walk of hope, Team, Gaylestorm.
The symposium today was great.