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!
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.
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.