Hi - New here and waiting for tests/diagnosis

Ro1977

Hi there -- I am 45yo, living in Toronto, and recently having some health issues (for the past 1.5 years I've been dealing with severe night sweats, irregular periods, spotting between periods, random nausea and vomiting as well as menstrual related vomiting (on 2nd day of my period for 6 months straight)). My doctor referred me to a GYN who diagnosed perimenopause (over the phone, due to covid) and prescribed HRT (started HRT in July 2021). Vomiting continued sporadically, night sweats continued and I started to have intense abdominal/pelvic pain in December 2021, which came and went). In late Feb 2022 I attended the ER at Trillium Hospital with intense lower abdominal/pelvic pain.  The hospital did an ultrasound and discovered a 5cm cyst on my right ovary, and the cyst had a  "nodule" along the periphery.  I was referred to GYN (through the hospital) who ordered another ultrasound for 4 weeks later.  The second ultrasound (mid March 2022) revealed a large cyst on my left ovary (not on my right as indicated a month earlier), slightly bigger than 5cm with thickened septations, however, the report stated that the size and appearance of the cyst was so similar to what had been described on the Feb ultrasound that they were unsure if it was the same cyst or not (given one said it was the left ovary and one said the right).  I have now been referred for an MRI which will take place May 16th 2022.  I have some form of pain or discomfort in my abdomen each day but was told at the ER in Feb to not return unless the pain was accompanied with fever and/or vomiting. 

I'm consumed with worry. I can't shake the feeling that something is seriously wrong and that while I sit here and wait, cancer could be spreading through my body.  Am I being crazy? I'm also very curious to know if anyone else has had similar issues with the cyst being described on different ovaries at different times?

While I love Canada and am a very proud Canadian, I am disappointed in our healthcare system.  My mental health is suffering a great toll at the moment, with the fear or the unknown and what seems to be unfair delays.  Does anyone have any advice/tips/tricks/suggestions to pass along to help deal with all of this?  I'm considering going to the United States and paying for an MRI sooner, any thoughts?  It has also been suggested to me to go back to the ER and exaggerate the pain until they do something.  This doesn't feel "right" to me, but I've been told to put that feeling aside when advocating for your own healthcare here in Canada. 

I feel really lost but very grateful to have found this site. 

Fearless_Moderator

@Ro1977 Welcome to our community and so very sorry to hear about the stress you're under.  You're sure not alone. I would say one of the top issues for all of us here is the 'waiting" for everything and that all consuming terror about what might be happening to your body. So, no you're not crazy by any means. Try to be patient and try not to let yourself get into a dark place.  This may not even be cancer, let alone ovarian cancer.  I had cysts many years ago (at least 10 or more before I was diagnosed with OVC) and my experience not unlike yours. First there was an ultrasound that showed a small cyst on my right ovary.  Three months later they did a follow up and there was nothing.  Then a year later one on my left ovary.  Another follow up and now nothing on my left but the one on my right was back.  The two more follow ups and nothing showed up on either side, at which point they stopped following me.  Not sure that that should have been done as I can't help but think that might have been the start of my OVC. But I'll never know I guess.  

But when I was diagnosed with OVC finally my tumor was the size of a grapefruit, on the right ovary but they expect had been incubating well over four or five years. So yes the cancer grows when not being treated. But the aggressiveness is dependant on the type of OVC and your own individual makeup.  While I have high grade serous (type) and it's considered one of the most common but most aggressive of the types, my own cancer (primary and my several recurrences over the past 6 years) has actually progressed very slowly.  

As for speeding up diagnosis, we do find we have to advocate for ourselves a lot, especially now with the further delays caused by Covid.  If it means applying pressure to get the attention you feel is warranted then don't hesitate. And I must admit to have somewhat exaggerated symptoms in past to get things moving a bit faster.  I take it you're not yet attached to a cancer centre and a gynecological oncologist?  The process for that differs from region to region in Ontario but usually requires a preliminary diagnosis from your GP or Gynecologist to get that referral, hence the MRI.  But I do suggest that if it hasn't been done, ask to have blood work done and a  CA125 score.  The CA125 is not the most reliable test but it's all we have to identify the possibility of a cancerous tumour and something worth investigating for that possibility.

I do recommend you get the booklet By Your Side published by Ovarian Cancer Canada.  It should answer most of your questions about our disease.  In the event they do confirm that as your diagnosis you'll be armed with any questions you need to have answered from the get go. You can order it hard or soft copy (or both) from https://ovariancanada.org/living-with-ovarian-cancer/support-resources. And our community here is always ready and able to support you if we can help.  Never hesitate to reach out.  

Good luck. Here's hoping things aren't as dire as you're expecting. 
  

Ro1977

Thank you for your response Fearless!

Thanks to surfing this forum, I was made aware of GNMI imaging clinic (they have various locations in Ontario), which I called last week (shortly after I wrote the original post).  When I reached out to GNMI I was told to get a copy of the MRI requisition (from my gynecologist) and to forward it to GNMI, which I did.  They called the next morning with an appointment for the following day.  I have now had the MRI, and am awaiting the results.  I have an appointment with my gynecologist for tomorrow morning so I'm hoping to receive some answers then.

With respect to the CA 125, I did have that blood test in the ER in Feb. and results were within normal range. 

My anxiety has definitely decreased since I had the MRI -- just knowing that it has been done really helps me feel like the ball is rolling (i.e. no unnecessary delay).  

Thank you again for your response, and a huge thank you to all the brave women on here that share their experiences, you've most certainly helped me feel more in control!  

Fearless_Moderator

@Ro1977 Thanks for sharing that information with our group.  Sometimes one has to go outside the provincial medical system to accelerate processes when needed. I do hope the result helps with a diagnosis.  The fact that your CA was in the normal range is a good sign, although the test is not the most reliable.  Do let us know what your gynecologist has to say, if you're comfortable sharing, and continue to reach out as you have questions or need any support from our community.   Big hugs in the meantime,