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!
Anyone BRCA positive?
Hi all. I am BRCA1 positive from BC. Meeting with an oncologist soon to discuss ovaries and tubes removal. Would love to talk with anyone in the same boat. Take care.
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Hello @CanaryBird. I am BRCA gene mutation positive. I forgot which 1 or 2. My GP has the documentation. I was 49 when diagnosed so they did a debulking surgery and everything was removed. Ovaries, fallopian tubes, hysterectomy, cervix but not appendix. I have had positive results from it and chemo but did have one recurrence so far. It is common. I am now being monitored and may take a PARP inhibitor at some point. You may want to go with the debulking depending on your age. Preventive in nature. Good luck with the chat.3
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Hi @CanaryBird. Welcome to OVdialogue! Based on what you have said, I assume that you have not been diagnosed with ovarian cancer. Is this correct? It sounds like you have had genetic testing and discovered you are BRCA positive and are now considering risk-reducing preventive surgery by removing your ovaries and fallopian tubes. If so, are you also considering a double mastectomy?
OVdialogue is a new community - only up and running for about 8 weeks and the women in the community have already been diagnosed with the disease. What kind of feedback/conversation were you hoping to have with other women? Perhaps I can help in other ways....
What prompted you to get genetic testing?0 -
@CanaryBird Recurrence means ovarian cancer has come back again1
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Thank you for your comment Marilyn. My genetic testing for BRCA was done because of my 4 young family members were diagnosed with ovarian/breast/uterine and brain cancers. They all passed in their 30s and 40s. I presumably have "endometriosis" diagnosis for about a year. In the light of my BRCA1 status, an exploratory surgery was recommended with likely ovaries/tubes removal. The doctor informed me that there are chances they discover cancer during this surgery, because I am 42 and have symptoms. I was hoping to talk with other members here who are BRCA positive and have had a surgery. I hope this is not a crime. :-) Take care.Marilyn said:Hi @CanaryBird. Welcome to OVdialogue!0 -
Canarybird, You should be able to rec a prescription for lynparza being brca +. I am + but not germline, somatic, but parps may still help in those cases. Best of luck0
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Thank you Courtenay. I thought, Lynparza is recommended for those with an established cancer diagnosis? Also, is it available as a prescription drug in Canada?Courtenay said:Canarybird, You should be able to rec a prescription for lynparza being brca +. I am + but not germline, somatic, but parps may still help in those cases. Best of luck0 -
Hi @CanaryBird,
I am sorry to hear that so many of your family members have passed away at such a young age. That must be very hard to deal with and now learning that you are BRCA positive and at higher risk yourself. You mention that you are having symptoms and your doctor has indicated that they may find cancer during the surgery. I am glad to hear that you are meeting with an oncologist to discuss the surgery. Studies have shown that if ovarian cancer is suspected, that it is important to have a gynecologic oncologist perform any surgery as there are better outcomes.
Regarding Lynparza, you are correct in saying that Lynparza is prescribed for women who have already been diagnosed with ovarian cancer and, in fact, who are dealing with a recurrence. It is also for a specific type of ovarian cancer that is BRCA positive. So, it is available under these circumstances, however, it is not yet pubically funded.
I'm not sure what you meant by I hope this isn't a crime? I do see your smiley face but I hope what I wrote did not make you feel like you didn't belong here! I was simply trying to say that because OVdialogue is a new community, I didn't think there would be anyone else on the site at this point who has dealt with this same issue - not having a diagnosis of ovarian cancer, being BRCA positive and having to make a decision about preventive surgery.
I have met women who were BRCA positive who decided to have preventive surgery and were then told that ovarian cancer was found either in the fallopian tubes and/or ovaries. I will see if there is a way that I can connect you with someone who has been through this.
When is your appointment with the oncologist? How are you doing with all this?
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Hello Marilyn & thank you for your reply. Oh, of course I was sort of kidding, but indeed, I felt myself for a second like I am not in the right place because my cancer is just suspected. But with your kind explanation I am totally comfortable being here. This is in fact, a unique discussion board, and I am not aware of anything similar and Canada-specific.Marilyn said:Hi @CanaryBird,
I'm not sure what you meant by I hope this isn't a crime? I do see your smiley face but I hope what I wrote did not make you feel like you didn't belong here! I was simply trying to say that because OVdialogue is a new community, I didn't think there would be anyone else on the site at this point who has dealt with this same issue - not having a diagnosis of ovarian cancer, being BRCA positive and having to make a decision about preventive surgery.
I have met women who were BRCA positive who decided to have preventive surgery and were then told that ovarian cancer was found either in the fallopian tubes and/or ovaries. I will see if there is a way that I can connect you with someone who has been through this.
When is your appointment with the oncologist? How are you doing with all this?
Yes, I would be more than happy to connect with other ladies in the same boat. Looks like there are not so many of us BRCA folks in British Columbia. At least, I have not heard of any kind of meetup or support groups in BC. Thank you for your offer, I appreciate it so much.
My appointment is in 3 weeks, and I already have been waiting for a month for now. I try to be optimistic and focus on my family & work. Take care & all my best.1 -
Hello Canary, a BRCA support group in B.C. is a great idea!0
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Being. BRCA 1 or 2 positive brings good and not so good tidings. Good because BRCAs with Ovarian Ca respond very well to Parp Inhibitors, More than half of such women treated benefit through delayed recurrence. Not so good because the lifetime risk for breast cancer goes way up there - 50 to 85%. So, if you’re unlucky enough to get OvCa through genetic germline mutation that has already taken a few of your siblings and relatives, you can also be at a very high risk for experiencing another cancer later. I am getting my mind around this now, because my own BRCA results were confirmed this week. Does anybody know if the carbo-platinum / taxol treatment we’ve all done for OvCa actually works on any breast cancer lurking around the body ? Anybody have any experience with having both cancers? My genetic counsellor mentioned that I may be recommended for preventive breast surgery - but I only recovered from OvCa interval surgery and Chemo 8 weeks ago. More treatment is unthinkable.
best,
Judith
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Hi @jsullivan33 - I hope you are feeling ok today.
Yes, recurrence, more treatment and surgery decisions are tough. I'm glad you are able to discuss your options with the medical teams. Perhaps you can find a connection with someone that has gone through the same decision/procedure and consult with your cancer centre to see if they offer peer support access.
Some good news here - just out
https://www.newswire.ca/news-releases/lynparza-olaparib-tablets-receive-approval-as-maintenance-therapy-treatment-for-ovarian-cancer-regardless-of-brca-status-682039621.html
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Hello @Flowergirl, Thank you for your kind thoughts. I had a good opportunity to discuss my BRCA results and risks with my family and will do so with my gyne-oncologist in a week. I have been enrolled in a randomized clinical trial for a new Parp Inhibitor. So, this will be my focus for next while. Excellent news about the HC approval of Olaparib for all OvCa women - might the next victory be the routine maintenance treatment with these Parp Ihibitors before rather than after first recurrence?
cheers, jsullivan332 -
Hi @jsullivan33. I am glad that you are seeing a genetics counsellor to help you and your family navigate this new information. Yes, the chemo that you had for the ovarian cancer can also impact any breast cancer cells that may have been present so that is a good thing. Since you have just finished your treatment, thinking about further surgery to reduce your breast cancer is probably too much right now - totally understandable. Once you are more recovered, it may be something you want to discuss further with the counsellor, your doctor and your family. You don't mention any other family members who may be impacted by this information but there are options for family members which is good for them to know. Glad to have you as part of the community!0
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Hi Marlyn. I was diagnosed with a Breast Cancer in 2009/10 and in 2016 diagnosed with Ovarion Cancer/Peritoneal, had a debalking, I have been through all my treatments and now I’m on Lynparza as maintenance, I’m doing good on it, did have a few hiccups in the beginning my hemoglobin was dropping to low so my Oncologist reduced my meds by half, all is good now please god. In 2016 I also had a double mastectomy.
Tesla01
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Hi @Tesla01. I assume from your posts that you tested positive at some point for BRCA? Was it after your ovarian cancer diagnosis? You have been through a lot! Glad to hear that your reaction to Lynparza has stablized and that you are doing better. Good to have in the community!0
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Hi Marilyn, I was diagnosed with the BRCA1 positive gene after I found out I had Ovarion Cancer.
Tesla010 -
The above link refers to the 7 July event for OvCa in the Ottawa Valley, mistakenly posted in this topic ( have just re-posted it to the Teale discussion page).🌺
@jsullivan330 -
and the last of the genetics series is posted now for viewing if you have missed it
http://ovariancanada.org/events-support/go-online-for-support/webinar-series
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Hi Flowergirl, I found out that I am BRCA2 positive later last year. My mother was diagnosed with varying cancel between 2 to 3 years ago and it was only found after she decided to have a preventative procedure done after finding out that she was positive. Since then she has gone through one round of treatment and has been in remission for two years. She is in the early stages of potentially having a reoccurrence. Based on my mother's genetic history and experiences, Both my sister and I decided to get tested for the gene mutation. I was the only one that came back positive. It' seems like it seems like this is all happened so fast though I am very hopeful for the future and I'm glad to have caught this earlier on so I cannot be more we're moving forward. I am turning 23 this July, and I just met with my oncologist a couple of weeks ago. She was very reassuring that there is not much of a concern for ovarian cancer right now, though more of a concern for breast cancer. I will be having annual breast examinations then when I am 30 will be having mammograms additionally.0
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Welcome to the site @vnstevens. I hope your mom is able to get the support and care she needs if she is in fact dealing with recurrence. There is a support guide for that if she needs to order it - Still by Your Side
http://ovariancanada.org/living-with-ovarian-cancer/support-resources
Thank you for sharing your story about the genetic testing and your proactive testing. Wishing you all the best and hope you also find support.0 -
Hi All
So my story is that I was diagnosed with BRCA 2. It seems that I had the mutated gene, which would never have been discovered if I had not gotten sick with Pneumonia resulting in a collapsed lung and fluid being removed and tested.
There is history of breast cancer in my family, both maternal and paternal, and as my mother passed away from breast cancer when I was 12 years old, there was not much documentation back then and likely an unknown that genes could or had mutated. So, I am thankful that this was found and I have an older sister, who has a daughter who has three awesome girls and a nephew who I have asked to all be tested.
My concern are my niece and great nieces. But after discussion with my Gene Councillor I was told if my sister is tested and she DOES NOT have the gene, then it stops there! So here is hoping!1
