Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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 (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. 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 (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
New here. Waiting and worrying
Hello from Ontario
I found myself at urgent care due to right-side flank pain that persisted for months. Figuring I had a pulled muscle that wouldn't heal I felt better to get some advice. Being I do not have a family dr. I had no choice but to go to urgent care. Dr agreed it could be a pulled muscle but sent me for a CT scan to rule out kidney stones. Results came back all clear on the right-side, however there was something on my left ovary. Off I went for an ultrasound included was a tranvaginal ultrasound. Well, ends up I have a 17x15 cm cyst on my left ovary. They believe my right side pain is caused by the cyst. Dr referred me to a gynecologist. Bloodwork was drawn and I was sent home. After 7 days waiting I called the gynecologist and I had still not been triaged. I requested my medical file from the hospital visit and found out my CA 125 was elevated at 104. 7 days later I called the gynecologist office again and was told the Dr was away for a few days. 3 weeks passed from my initial urgent care visit and still no call. I went back to urgent care. My emotional wellbeing wasn't doing good, I had to have someone help me figure out what this all meant. This new Dr called to have me referred to a gynecology oncologist as she felt that is where I needed to be, they took my referral right on the phone. The next day oncology called with an appointment for the 3rd week of April. She asked a few questions and then decided to put me on the cancelation list. Now I am freaking out even more. I am 50 yrs old, have had symptoms in my lower abdomen for months but figured it was all due to menopause coming on. I have no medical issues however my Mother had ovarian cancer at the young age of 26, I have 2 maternal Aunts with breast cancer, another maternal aunt die from colon cancer, and to add another kick my father died from colon cancer. I apologize for this being so long winded.
I love that there is a place to come for conversation, advice, and information. Sitting, waiting and wondering is so hard
I found myself at urgent care due to right-side flank pain that persisted for months. Figuring I had a pulled muscle that wouldn't heal I felt better to get some advice. Being I do not have a family dr. I had no choice but to go to urgent care. Dr agreed it could be a pulled muscle but sent me for a CT scan to rule out kidney stones. Results came back all clear on the right-side, however there was something on my left ovary. Off I went for an ultrasound included was a tranvaginal ultrasound. Well, ends up I have a 17x15 cm cyst on my left ovary. They believe my right side pain is caused by the cyst. Dr referred me to a gynecologist. Bloodwork was drawn and I was sent home. After 7 days waiting I called the gynecologist and I had still not been triaged. I requested my medical file from the hospital visit and found out my CA 125 was elevated at 104. 7 days later I called the gynecologist office again and was told the Dr was away for a few days. 3 weeks passed from my initial urgent care visit and still no call. I went back to urgent care. My emotional wellbeing wasn't doing good, I had to have someone help me figure out what this all meant. This new Dr called to have me referred to a gynecology oncologist as she felt that is where I needed to be, they took my referral right on the phone. The next day oncology called with an appointment for the 3rd week of April. She asked a few questions and then decided to put me on the cancelation list. Now I am freaking out even more. I am 50 yrs old, have had symptoms in my lower abdomen for months but figured it was all due to menopause coming on. I have no medical issues however my Mother had ovarian cancer at the young age of 26, I have 2 maternal Aunts with breast cancer, another maternal aunt die from colon cancer, and to add another kick my father died from colon cancer. I apologize for this being so long winded.
I love that there is a place to come for conversation, advice, and information. Sitting, waiting and wondering is so hard
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Hello @wwomanpower, I just wanted to say that I really feel for you in having to wait like you are. Being in limbo - not knowing how to feel because you don't know whether there's something to worry about or not - and not being able to take action because you don't know what you're dealing with - it's an awful situation to be in.
I commend you on your empowered stance and encourage you to continue advocating for yourself. Our overburdened health care system makes that a necessity, unfortunately. I hope you do get seen by the gyne oncologist in April, and that the work up goes swiftly after that.
In case it is of help for you, my timeline to diagnosis was about 3 months from first medical contact. Abnormal findings on an unrelated abdominal CT (in my case peritoneal nodules), pelvic ultrasound about a month later, CT guided biopsy about a month after that, and diagnosis 2 weeks later. I live in Manitoba, so wait times may be different than in Ontario.
Fingers crossed that you get answers soon, hang in there.
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@Petra Thank you for your reply. It helps to talk with people who understand and have been where I am. I'm not upset with my original urgent care visit. I know the dr did everything he could and the referral went out before my blood tests came back. If I hadn't requested my records I would have still been waiting. I didn't even know what a CA 125 test was. Our Healthcare providers are amazing and do the best they can with their valuable time.
I find it hard not knowing for just a month, I couldn't imagine dealing with the unknown for 3 months.
Good thing is I have the imaging and bloodwork done already unless they request an MRI. I try not counting down the days till my oncology appointment, I'm so scared to find out but on the other hand I wish the appointment would be tomorrow so I can deal with the outcome sooner. Does that even make sense?
Again, thank you so much0 -
@wwomanpower
Wishing the appointment could happen already makes total sense to me. I felt the same way, because the waiting and not knowing felt harder than having the information and being able to deal with it.
I one hundred percent agree with you about how hard working and amazing our health care providers are. I know that everyone in the system is doing the best they can, and I'm grateful every day for being able to access free, high quality medical care. We are very lucky, as Canadians. That being said, wait times are long, and it's difficult to be in a queue when in a situation such as yours. I'm feeling for you/with you as you wait and I hope things get sorted out as quickly as possible.
I hope your long weekend is going well
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@wwomanpower
Welcome to the group and glad to see you have both found us and found some comfort in @Petra responses.
For sure the waiting and wondering is so difficult as is the self advocating. All I can see is keep track of time, symptoms and keep pushing things along and finding out where you are in the queue. Should anything worsen there is always the ER (hoping you don't need that).
Looking back for myself, I had symptoms that I pushed off as pre-menopausal symptoms and having gyno issues since the start of my menses (period), I really thought nothing of it. It was a GI bleed that got me to Emerg and even then I had no idea that's what I was experiencing. From there on out it went fairly quick for me thankfully.
While you are waiting, enjoy the good days and try to fill it with things you enjoy. You can check out Wellspring.ca to see if there are any programs or anything you can hook up with while waiting. They are a tremendous resource. You are always welcome to join in on our Teal Thursday chats at 1pm if you would like. Although you are not diagnosed as of yet, you are welcome to join and/or follow along.
I am sure this is quite tough on you.
Know we are here to walk beside you along your journey.
Hoping you have a wonderful weekend with family/friends around you.0
