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!
What is next? Radiation? Chemo? The agonizing wait?
Hello everyone,
I am hoping this crowd can help me.
I had a radical hysterectomy on Aug 23, 2019 after I was diagnosed with atypical hyperplasia. Didn't sound like cancer. I had the surgery and excelled at my recovery. There was hardly any pain, and they took everything, except my ovaries which looked apparently good at the time. I was feeling so good that I even asked my doc to allow me to work part time, just to get back to normalcy!
Then my whole world changed yesterday... again.
I was napping and woke up to my cell ringing. When I answered it, it was the receptionist from the Oncology department making an appointment for me. What!!!! No one told me that I was being referred and no one told me to expect such a call! I thought since I had my hysterectomy and everything went "great", that I was cancer free. I was sadly mistaken. Of course the office can not give me any information. I called my surgeon and family doctor's office, but of course they were not available. This began the most agonizing 16 hour waiting period! What was going on.
Yesterday morning I got a call from my gynecologist, apologizing that she was not the first person to inform me about my cancer diagnosis and referral to the cancer clinic. In my opinion, this was a grave oversight! My gynecologist proceeded to tell me I did have endometrial cancer and it was Stage 1A. However, they also found cancer in my the lymphotic membrane - LVSI what I have come to learn is lymphovascular space invasion. This sounds really bad! I believe I zoned out a little in this conversation... completely in shock at this information.
I, of course, traveled down the rabbit hole of Dr. Google immediately (which I know you shouldn't do). But in the absence of information, you seek to fill in your own blanks. The more I searched the worse it got. I finally had to close my browser and cry... a lot.
Today, I mustered the courage to review some of the notes I had written from the conversation with my gynecologist; I could make out words like "radiation", "chemotherapy", "second opinion" and "Dr. McGee." I have to wait 2 weeks before my appointment at the Cancer clinic and I am hoping for some insight. What has your experience been with radiation and / or chemo and what should I expect. Are you a patient of Dr. McGee in London and what is he like?
Searching for any kind of information as I feel like I am living in an alternate universe!
Thank you for listening.
SLM
I am hoping this crowd can help me.
I had a radical hysterectomy on Aug 23, 2019 after I was diagnosed with atypical hyperplasia. Didn't sound like cancer. I had the surgery and excelled at my recovery. There was hardly any pain, and they took everything, except my ovaries which looked apparently good at the time. I was feeling so good that I even asked my doc to allow me to work part time, just to get back to normalcy!
Then my whole world changed yesterday... again.
I was napping and woke up to my cell ringing. When I answered it, it was the receptionist from the Oncology department making an appointment for me. What!!!! No one told me that I was being referred and no one told me to expect such a call! I thought since I had my hysterectomy and everything went "great", that I was cancer free. I was sadly mistaken. Of course the office can not give me any information. I called my surgeon and family doctor's office, but of course they were not available. This began the most agonizing 16 hour waiting period! What was going on.
Yesterday morning I got a call from my gynecologist, apologizing that she was not the first person to inform me about my cancer diagnosis and referral to the cancer clinic. In my opinion, this was a grave oversight! My gynecologist proceeded to tell me I did have endometrial cancer and it was Stage 1A. However, they also found cancer in my the lymphotic membrane - LVSI what I have come to learn is lymphovascular space invasion. This sounds really bad! I believe I zoned out a little in this conversation... completely in shock at this information.
I, of course, traveled down the rabbit hole of Dr. Google immediately (which I know you shouldn't do). But in the absence of information, you seek to fill in your own blanks. The more I searched the worse it got. I finally had to close my browser and cry... a lot.
Today, I mustered the courage to review some of the notes I had written from the conversation with my gynecologist; I could make out words like "radiation", "chemotherapy", "second opinion" and "Dr. McGee." I have to wait 2 weeks before my appointment at the Cancer clinic and I am hoping for some insight. What has your experience been with radiation and / or chemo and what should I expect. Are you a patient of Dr. McGee in London and what is he like?
Searching for any kind of information as I feel like I am living in an alternate universe!
Thank you for listening.
SLM
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Comments
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Hello @SLM - I am so very sorry that you had to go through finding out your situation that way.
I do hope you can find some support in person and around this site.
Can you access the patient advocate or navigation coordinator at your cancer centre? (depending on where you are located that may have a different position/name/title)
And I agree, the waiting and not knowing is just the worst.
I have found it helpful and hopeful if I wrote out all my questions or fears to be ready for that appointment.
For support, you can also search chemotherapy and radiation in the search bar at the top right above the new discussion tab.
Do you have a copy of the By Your Side resource as well?0
