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!
Recurrence - next steps
Hi All
I've recently had a recurrence - I was Dx in March 2019 with Stage III HGSC after my hysterectomy. I received weekly chemo regime and completed it in Sept 2019, followed by avastin as well. A couple of weeks ago I started having lower pelvic pain, bloating etc. Had a CT which shows one retroperitoneal node 1cm and 'some small nodules' on my colon. Oncologist says cancer is back and chemo is the plan, spoke to my onc gyn (surgeon) her radiologist says not as concerned about colon spots small but no option for surgery at this point. THis leaves me concerned - not sure what to do. We live in a small province and OC isn't likely commonly seen. We are hoping to have a consult with Sunny Brook to get clarification. Anyone else go through some gray areas of recurrence and not sure on next steps, ow long to wait to start treatment?
My thoughts are get chemo started asap as I want it over, but maybe I should wait longer? Maybe there will be a surgery option.
Sorry I'm just a loss, thought the recurrence would be a bit more clear!
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Comments
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@ChristinaW welcome to our group and my apologies for the delay in replying to your post.
First of all I am so sorry to hear of your recurrence. Your experience mirrors my own somewhat so I'm sure you're feeling much of what I felt at the time; everything from disappointment to anger to fear to confusion and more. Try to take a deep breath. I know that's not easy but as a member of our community now you are surrounded by women who share your experience, who can offer stories, advice, information, and who are here to support you through all phases of your journey.
LIke you I was diagnosed with HGSC stage 3C in January 2017 followed by the standard treatment process of surgery and chemo. Wow, when I look back at my Facebook posts I really thought I'd licked it. But a year and half later I also started experiencing some symptoms. I was fortunate to be a patient in Ontario and at a regional cancer center where we are assigned an oncologist who stays with your treatment throughout the course or until there is some reason to be transfered to the care of another of the staff. In my case my gyne-oncologist followed my treatment but transfered me to the the care of a medical oncologist once we had determined my recurrence qualified for a clinical trial that as under her supervision. But that continuity, even in the hand off of one to the other made everything easier for sure and the fact that my cancer centre is very experienced and equipped to manage those with OVC was another bonus.
I'm not sure where you're located but if the best they can offer is a "revolving" door of doctors and limited experience with OVC, then I would agree at least a consultation with a larger centre with the expertise in our disease should be the cards for you. Sunnybrook is excellent as is Princess Margaret. I urge you to press for that referral.
In the meantime, begin equipping yourself with information on recurrence so that you can prepare for any consultation with the questions you should be asking. Still By Your Side, if you haven't already got it, is an excellent guide produced by OCC that covers those in recurrence. It's the follow up to By Your Side, the guide they produce for those in primary treatment. You can order them in hard or soft copy and they are free. This link will take you to the page in the OCC website where you can order the booklets https://ovariancanada.org/living-with-ovarian-cancer/support-resources And I urge you to canvass the OCC website. It houses a wealth of information on our disease.
You may also want to join in our weekly live online chats every Thursday at 1PM ET where you can get more immediate feedback to any questions you might have and get to know some of our members in a real-time environment. You can join in whenever the mood suits you. Just sign in to OVdialogue and then click on the Discussion Topic: Teal Thursday.....to enter the chat.
Monthly Teal Teas is another great opportunity to connect with others in our community. They are held on the Zoom platform with three sessions, one for Young Survivors, one for our general community and one for Survivors of 10 years+ once a month. You can get more information on these and register to participate on the OCC website under Local Events.
Finally, recurrence is scary. Use our community to express your concerns and feelings any time. We are all here for you whenever you need us, if only as a 'shoulder to lean on". And as for recurrence being the end of the world....I was diagnosed in early 2017, recurred the first time in 2019 and have recurred two more times since then. My cancer is not curable but it can be managed and one can learn to live with it. I'm now in my sixth year of survival having only been given a prognosis of three years. And I'm doing great. Yes, the constant need for treatment is a real drain sometimes. Yes, my life is different than the one I had expected to have. But yes, I'm alive and kicking and loving every minute of every day I have along with looking forward to many more. And I'm not the only one. Some have recurrence an after treatment the second time around never recur again. Some are like me and can attest to the benefit of not listening to the statistics and just focusing on yourself and your recovery, what ever form that might take.
Do keep us posted on your progress. Do reach out and let us know when we can help or what you need. In the meantime you will be in our thoughts.
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Hi! I'm just seeing this response now many many months later :-) I have been engulfed in surgery and treatments since this post so just getting my head above water now.Thank you so much for your kind reply and information I truly appreciate it.To follow up on my update. We ended up getting a quick referral to Halifax and a lovely surgeon there said I was a great candidate for surgery (unlike my NB surgeon) I had surgery to remove lymph node in April and began carbo/taxol in May and I just finished chemo a couple of weeks ago. It was a long process with many bumps but I'm done. Will meet with my oncologist in a couple of weeks to see what next steps are but I am planning to start a parp soon and am hopeful I handle it.This time around was more difficult than ever for me, my body didn't handle the drugs well and I was quite ill. Will take time to heal and get back to normal but happy to have it behind me.0
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@ChristinaW
Thank you for your update and it sounds like you experienced a lot in that time frame. From my understanding, every time we have chemo our body "remembers" and it hits us a little harder each time due to this. It sucks for sure and is definitely awful when you go through it. I see you have "put it behind you" and are now on a new road (whatever that looks like). Our journeys are difficult emotionally, mentally and physically as we navigate through our own unique treatments and how our bodies respond to them.
I wish you the best as you start going forward and healing from the journey your body, spirit and mind have been through.
Stay connected and maybe join one of our Teal Thursdays to chat.
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@ChristinaW so happyy to hear from you and the success in getting that surgical intervention afterall. It sounds like you've found the right doctor now. Wishing you much success in your recovery and please do stay in touch or reach if we can be of any other support to you.
Cheers for now 0
