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!
Metastasis - Ovarian Cancer - Genetic testing
Hi everyone, I'm hoping to gather some info on Genetic or Genome Testing. Here is my updated situation. I was diagnosed Stage 3C - High Grade Serous ovarian cancer - involving both ovaries. The first 3 roundsof Carbo/Paclatax did nothing, the surgery was postponed, then put on Doxil./Carbo for three rounds, which resulting in the cancer is now stable but also found out it now involves my liver and lungs. Now decision for three more rounds, then CT to see if the Doxil has started to reduce the size of the turmors/cancer. I have an appoint with BC Cancer Agency for Hereditary Cancer assessment. I have a lot of cancer in my family so I assume it is a hereditary issue. I am confused about the difference between Genetic and Genome testing. If my cancer is a result of mutated cell (whether familial Brca 1 or Braca2) is there somewhere I can get testing done so I can hopefully be provided the specific mutation and also hopefully get Targeted treatment. I live in British Columbia and have no problem providing fund for private testing if necessary.
Sorry if I come across a little confused but to be honest I am (Chemo yesterday and notified of lung and liver involvement 2 days ago)
I look forward to any thoughts you ladies might have.
Sorry if I come across a little confused but to be honest I am (Chemo yesterday and notified of lung and liver involvement 2 days ago)
I look forward to any thoughts you ladies might have. 0
Comments
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Hi @LaurieG - welcome to the site - thank you for sharing where you are at.
I hope you have been managing well with the treatments.
The comment I can share on this topic is about the POG study in BC.
http://www.bccancer.bc.ca/about/news-stories/stories/personalized-onco-genomics-(pog)-q-a
I watched the documentary on it and it was very interesting.
There are many topics here on the site and perhaps you may find some more info on the BRCA status details and more by entering the topic on the search bar at the top right.
I'll also private message you.0 -
Hi stage 4 Ovarian cancer patient not genetic but my daughter was diagnosed with stage 4 Ovarian cancer in April. Very strange no explanation for this occurrence. We are both doing very good. Should we be retested.
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Hi @Pj2021 Welcome to OVdialogue and our community. I am so sorry to hear of your diagnosis this past April and now that of your daughter, although wonderful that you're both doing well.
It is likely just coincidental that both of you contracted the same disease, but suggest you or she revert to your respective oncologists about further genetic testing. The "coincidence' certainly warrants that discussion.
If you and/or your daughter are registered for the virtual Symposium starting tonite, there is a session on genetics at around 1pm EST tomorrow that might be helpful. And if you haven't registered, I believe there is still time to do so and receive the sign in link. As both of you being new to this disease there are several sessions that you might find extremely helpful as you navigate your journeys. Go to ovariancanada.org/fallsymposium to view the full agenda and register.
Finally, if there is anything more we can do to support the two of you please do reach out. Our community is 900 strong from all across the country and all with their own stories and experiences to share. You are not alone.
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I just got a call from the Ottawa Hospital that my gynecologist/surgeon had put my name in for genetic testing. Taken by surprise, I declined. I'm getting ready for surgery just before Christmas after 3 chemo treatments and have my plate full.
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@Patd - I asked my oncologist for genetic testing. My mother has breast cancer and we suspect my grandmother had colon cancer - though at 93 she was never tested or treated. The tests showed I don't carry the genes for colon, breast, or ovarian cancer. Mine was a fluke - some fluke. Once I had the results, my anxiety level decreased immensely. The test was done four months after I finished my last treatment. I agree, you have enough on your plate right now but you might reconsider once things settle down.
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@Patd - At the cancer center where I am being treated, genetic testing is standard of care. The oncologist will rely on the results of the genetic testing for making decisions on best treatment options going forward after frontline treatment is finished. Depending on the results of the test, there may be maintenance treatment option available that could offer prolonged remission. The testing includes an analysis for about 20 different genetic mutations. Once a patient has provided permission, a sample of tissue taken during the debulking surgery will be sent for analysis. Other than permission, there isn't any action required of the patient, the cancer center looks after the logistics.
If a person was interested in a more extensive analysis, private facilities will test for up to 400 genomic mutations. A report is generated that co-relates the genomic results with currently available effective treatment options and open drug trials. This testing procedure is something done by a patient outside of the cancer center. Foundation One located in Mississauga Ontario offers this service.0 -
@PatD I can appreciate how overwhelmed you must feel right now, what with diagnosis, chemo and surgery up coming. I do encourage you to go ahead with the genetic testing if that's the only reason you have declined. There are some treatments and drugs that are predicated on certain genetics...particularly BRCA1 and 2 and knowing your status on that front will help to inform the best approach to treating your cancer. However, I do appreciate some prefer not to know; the implications to other family members being a major consideration.
Testing is quite simple. Either a portion of the tissue taken during surgery is sent off for analysis or you provide a quick blood sample for assessment. The former seems to be the approach taken these days. I do urge you to discuss this with your cancer care team before you dismiss the opportunity.
Wishing you a very successful surgery.
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Thank you all for taking the time to reply. I contacted the genetic lab and the original request was cancelled, so asked the oncology team to send another.
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