OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
Hello out there!
Hello beautiful women,
What an exclusive club we have here
I, like you, have been diagnosed with ovarian cancer. My name is Tina and my journey started in early may2019. It is stage 4 and low grade serous. Nice to meet you.
The doctors didn’t know it was low grade at first. In fact, the 1st pathology from the plural fluid came back looking like high grade serous tumour cells.
So, I started with 3 rounds of chemo. Carboplatin/ and taxol. And my body responded well. The markers reduced from mid 500s to low 200s and the tumours had visually shrunk.
I then had a full hysterectomy and four inches of colon removed.
Apparently the largest tumour was in my colon. Who knew?! No one/ until they open you up and see what is actually there... Amazing work.
So, the surgery went well and I was recovering, assuming that once recovered I would continue with the last 3 rounds of chemo as planned.
But then everything changed.
All the pathology came back low grade serous, there was no high grade what so ever.
And thing with that, is low grade doesn’t usually respond to chemo.
( ~only 30%)
I was lucky that mine did.
The next thing was how do we continue treatment?
This shift in diagnosis was unusual to all the oncologists as well.
Should I continue chemo?
Should I start hormone blockers?
They don’t know much about this disease.
It was a confusing time. Still is.
I ended up starting letrozole.
An estrogen blocker. But after a few weeks i was feeling sore and stiff in all my joints...
I’m only 45 years old.
Not 80. So..... I’m taking a break for a couple weeks. And I will revisit options with my oncologist.
I know there is still cancer in me.
For now there is some fluid still in the plural layer of my lung and apparently under my diaphragm, in the lining, the surgeons had felt what felt like a couple large grains of sand. Of course is not sand.
To my sisters out there,
Ain’t it a bitch.
Lots of love and hugs.
A hand to hold.
It was nice reading your posts.
It was nice writing mine
Best to all