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!
Surgical Induced Menopause
Hi
I had Debulking Surgery in May 2021 including a Full Hysterectomy for Stage 3C High Grade Serous Ovarian Cancer - I am 38. I am now in menopause and struggling with symptoms- especially Night Sweats. And concerned about long term health issues (bone and heart problems) with entering menopause early. I am looking for any information that can help me navigate this and options. I am also currently on Zejula. Thanks!
I had Debulking Surgery in May 2021 including a Full Hysterectomy for Stage 3C High Grade Serous Ovarian Cancer - I am 38. I am now in menopause and struggling with symptoms- especially Night Sweats. And concerned about long term health issues (bone and heart problems) with entering menopause early. I am looking for any information that can help me navigate this and options. I am also currently on Zejula. Thanks!
0
Comments
-
Hi @beckj I am so sorry to hear of your diagnosis and at such a young age. Once this disease was thought of as one that hit women my age but we're seeing more and more young survivors like yourself and that makes all the harder to accept. I too am high grade 3C, although much older than you. I can remember all the emotions I went through when first told I had cancer; from terror to denial to overwhelmed. And it wasn't much different after treatment. OVd didn't exist then and I can't tell you what a difference it and this community has meant to me over the past six years.
We are over 1000 strong, across the country, and reflecting all ages and all types and stages of OVC. I am hoping you already have a strong support network and that we will become an extension of that. Regardless, no one walks alone in this community and we're here for you, whatever the need.
Your first resource to assist with the current questions you have is your cancer care team. They should either help you themselves or refer you back to a gynecologist for management of your issues. That said, we now have a fairly active group of young survivors who, I"m sure, will have many stories and lots of advice to help you. You can also use the search function, found at the top right of your screen, to type in key words relative to an issue or question. It will pull up any historical discussions that might prove helpful.
I am flagging @jiselle16, a young survivor herself and who is part of my team of navigators to help introduce you to other members of that group. That being said, most of them participate in a monthly Zoom session called Teal Teas that OCC runs. One of the three each month is dedicated to Young Survivors and you will likely find that very helpful with matters that are related to the changes you are experiencing that are unique to your age group. The schedule is usually the last Tuesday, Wednesday and Thursday of each month (one devoted to Young Survivors) but I"ve just been informed it's being moved up a week this month to allow for a special speaker session at month end. I will be posting the schedules and links to register to participate as soon as I have more detail. But you will also find many issues that are common across the entire community so please keep participating here.
If you haven't already, I urge you to scan through the OCC website https://ovariancanada.org. There is an enormous body of information there. Everything from survivor stories, to videos on current topics of interest, to resources, to the latest news on research. They also offer the booklet By Your Side that might have some information of use to you even though you have completed primary treatment.
As for OVdialogue I welcome your participation at any time. We are here to share our stories, offer advice, provide encouragement and, when needs, a "shoulder to lean on" from a group who are objective and non-judgemental. I sure know there have been times when I just wanted to scream at the world and this was the best way to release my emotions and rebalance myself.
Finally, Zejula is a great maintenance drug and ;proven successful for many survivors. That said, none of us lose that fear of recurrence. I can tell you that never before has there been so much advancement in treatment such that we are living longer and better lives now. I am one of the less fortunate, My cancer that was treated in early 2017 has recurred three times now. I no longer think of being cured but focus on on learning to live with this disease as part of my life. While my prognosis back in '17 was 3 years +/- I am now in my sixth year and still going strong. That said, many of our members and more and more, are truly surviving even with out benefit of PARP inhibitors like Zejula.
Please keep us posted on your progress. Do reach out any time we can help. Know you're with friends. And wishing you a 2022 of health, joy and infinite possibility.
0 -
Hi @beckj! I think we have already been in touch, and sorry I haven't set up a chat earlier! I've been using bio-identical hormones through a naturopath to help with menopause symptoms, and also to help prevent any future issues (bone and heart health). It's basically 2 topical creams that I apply at night. I've started with a new naturopath and I'm starting a new routine and she's recommending I do some testing (called a DUTCH test) 6 weeks after to test my levels. You can also get HRT through your oncologist or family doctor, but I decided that I wanted to do a natural form of hormones. A good site that has lots of info about surgical menopause is https://www.thesurmenoconnection.com/. Would love to see you join us for the next young survivor "Teal Tea" on January 19 so we can chat more! It's a small group, but lots of good advice and support at this Teal Tea. Here is the link to register: https://ovariancanada.org/Events/Find-Local-Events/2022/January/Teal-Tea-January-19-2022
2 -
Hi @beckj
I too was diagnosed with Stage 3 High Grade Serous ovarian cancer in Feb 2020 I was 40 at the time. I had debulking surgery in July 2020 and went into full blown menopause.My Dr prescribed a low dose of Venlafaxine to help with hot flashes and mood swings. I also take 1000UI a day of Vitamin D for my bones. HRT was not an option for me.2