Share your experience to help improve care and access to treatment.

Fearless

Teal Sisters, 

Ovarian Cancer Canada aims to ensure that everyone affected by ovarian cancer in Canada receives the best possible care, regardless of where they live, from time of diagnosis through their entire cancer experience. To assist them in advocating for improvements to access of care, they would like to hear from you. 

Have you had challenges accessing a gynaecological oncologist in your area? Have you had to travel to access treatment and what impact has that had on you and your loved ones? What other challenges have you experienced as you navigated the health care system to get the support and treatment you needed.  

Add your voice to the conversation and share your experience. Please share your experience here on OVdialogue, or contact Cailey Crawford, Vice President of Programs and Policy at ccrawford@ovariancanada.org. 

Thank you for your input.

Sylviequebecbc

Good morning Teal sisters! I live in a small town in southeastern BC and our nearest hospital is in Cranbrook, not too far away. There are no oncologists locally, everyone diagnosed has to go either to Kelowna ( 5-6 hour drive) or Calgary (5 hour drive). My gynaecologist referred me to a wonderful team of oncologists in Calgary, so i have to travel and stay overnight most times. The drive goes through the Canadian Rockies, it is beautiful, but can be tricky in winter. My chemo can be done locally (thanks heaven) so that helps.

Also, I cannot have a PET scan locally so i have to drive to Calgary for that too. I am lucky that my work benefits reimburses part of my travels, but i hear of people who cannot afford to travel and stay in Kelowna or Calgary for treatment. It can be hard. 

The other challenge that i have is because my oncologist is in another province, orders and prescription and test orders/results can be lost or not-accessible by my team, so i have to make sure everyone gets the information they need, by tracking down results and bringing copies to calgary for example. I am a nurse by training, so I may have had an advantage on that score, i am sure some things get lost for some people. 

Being this far from my oncology team make me feel isolated and alone sometimes. When i go to Calgary, i see posters of support groups that meet once a week at the Cancer Centre, of course, i cannot attend. I really appreciate OCC, but i would like to meet some women in person from time to time to share and offer support. 

I have been living with this cancer since 2015, i am on my 3rd recurrence, if we can call it that. Making the most of it most of the time!

So this is my story,
Cheers!

jmbarrhaven

I am lucky in that I live in Ottawa, so have access to a large cancer center.  However, I have not had much consistency of contact with an oncologist.  It is a constant revolving door.  I do not feel I have someone actively looking after my interests.  If I have a problem, I call a general number at the Cancer Center and someone calls me back, usually a day later, sometimes 2 days later.  Always someone different.

I have had a very hard time getting timely information.  When I started chemo I was told I was Stage 2 and that chemo would be a cure for me.  Somewhere along the line the results of the pathologists analysis of surgery biopsies came in, but no one thought to tell me I was now Stage 3.  I stubbled on the information in my online chart.  When I asked the next oncologist I talked to about it, she confirmed the new staging but didn't want to discuss it any further.  I had to wait a month and a half for an in person discussion with her.  This oncologist was a poor communicator and I didn't learn a whole lot more.  It was very upsetting having to come to my own dawning realization that becoming Stage 3 meant that I would no longer be cured, but was in fact now terminal.  I thought this was really crappy. 

Along similar lines, at the start of chemo there was a lot of hype about "Your Symptoms Matter".  I was given a web link to track my symptoms after each treatment.  However, the link didn't work.  It said I had not been registered.  When I reported it, no one provided me with any further assistance.  So I just gave up on it.  This also contributed to my not finding out until after my 3rd treatment that my dose was too high.  In my constant rotation of oncologist I happened to get a good one.  He asked a lot of questions about my symptoms and said they were too extreme.  He reduced the does by 25%.  Huge difference.  Night and day.  I had no point of comparison, so I didn't know enough.  This still makes me very angry, every time I think of it.

Linking up with Ovarian Cancer Canada has been the bright light in my cancer journey.  Thank you.