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).
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!

Do you have a question for an expert?

MarilynOCC
MarilynOCC
edited March 2020 in Just want to talk
Hi everyone,
With so much going on in our world and so much uncertainty, you may have a lot of unanswered questions and/or concerns right now about your health, your treatment and anxiety about all that is happening around us.  In an effort to respond to this, we are setting up an "Ask the Expert" opportunity.  If you have a question, please post it here and then we will get the answer for you from the appropriate expert.  We will be publishing the answers online and through social media.

Comments

  • Flowergirl
    Flowergirl Legacy
    Thank you again @Marilyn - great plan.
    This may help ease some of the anxieties and reassure us as we try to navigate the next few months. Great to get some answers from a reliable source.

    As someone still undergoing treatment, at this time, I feel terrified to actually go in to the treatment centre.
    So my question is to those working in the cancer treatment centres. The answer I suppose may be vary depending on the province, treatment center location and this may well be an ever evolving situation, with many changes to processes/protocols.

    What specific safety steps, additional safety procedures are being taken during the actual chemotherapy treatment?
    Cleaning / disinfecting processes, number of patients ratio vs nurses, etc., changes to physical set up of treatment stations, extra cleaning in washrooms.

    So for now, and to ease my worries, my plan is to contact my treatment centre and the medical team to ask all of these concerns a couple of days before the next treatment. 
  • beachgirl
    beachgirl
    Hello@flowergirl - by reading the above, it might be the way i am reading this - have you experienced a re occurrence? hoping to hear the response as a no!  I wish everyone the best and Stay Strong ....  
  • Flowergirl
    Flowergirl Legacy
    Hello @beachgirl... I have been off and on various treatment since late 2018. They all just seem to blend together.
    I am managing ok.
    In regards to my previous post, I have come to realize that the treatment centre is probably the safest place we could be going now. I have had a couple of discussions with those on the inside and those who have gone for chemo already, so I am feeling slightly reassured for now. As this is an ever changing situation, we will see what transpires next week.
    I will keep notes and update you all about my experience so perhaps I can share some details to help anyone else as well.
  • beachgirl
    beachgirl
    Hello@flowergirl ... I am sorry to hear that you are experience the on and off again. May I ask? were you diagnosed with  Serous Carcinoma ? low grade or high grade? I am high grade and just passed my 3 year mark in January but very concerned that it may return.  I am also Lynch Syndrome Genetic mutation. 

    Stay well and remember - I will always be saying my prayers for all of us!  <3
  • Flowergirl
    Flowergirl Legacy
    Hi everyone - be sure to check out the main website - www.OvarianCanada.org  - follow along on the Twitter/Facebook posts as they have been highlighting some short videos from this Ask an Expert series 
  • CDNGirl
    CDNGirl
    Good Morning!  I was recently diagnosed with a complex cyst or solid mass.  (38 year old female- mom of twin 11 year olds).  The ultrasound findings say it is an avascular isoechoic focus.  There is peripheral vascularity.  Does anyone know what this actually means?

    An MRI is the next step- along with a referral to the OBGYN.  However, given the Covid situation we are unsure how long this will take.  The ultrasound was essentially inconclusive.

    Thank you!
  • Flowergirl
    Flowergirl Legacy
    Hello @CDNGirl - sorry you are dealing with this recent diagnosis of sorts. Welcome to the chat site and we hope you find much support here.
    Are you able to call back to your DR office or discuss these recent findings to gain a better understanding of your situation? Perhaps a call to a nurse practitioner if you have access to one as part of your team, may be a place to start if you can't get back to the "diagnosing" doctor.  It is good they are proceeding with the MRI as it should show a clearer "picture" of the situation and will help your provider to guide the diagnosis/treatment.
    Yes, this COVID situation is making everything so complex- and of course it varies by province. Which province are you located in?
    Do not let them push you aside and keep asking lots of questions. There are so many variables and considerations... Your medical team may and should be able to guide you with the process. 
    Here is hoping you get the answers and the support you need at this time. Hope that helps you a little bit and you find comfort in knowing we are here as much as we can be across the miles at this challenging time.
  • CDNGirl
    CDNGirl
    Thank you!  I did phone in to my dr and will be chatting with him at 2:00.  My MRI is scheduled for May 25, so we need to decide if we pay out of pocket (approximately $1000).  My OBGYN appointment has been received, but is currently being triaged.  

    I really appreciate the advice and support.  Much appreciated!  Thank you
  • Flowergirl
    Flowergirl Legacy
    You are welcome @CDNGirl - I hope you were able to get the answers you were looking for.
    Each province/case is different.... I am uncertain your reference to out of pocket costs related to your diagnosis/treatment
  • Luci22
    Luci22
    Hi, I have a question about the recent approval for two ovarian cancer drugs.  Zejula and Lynparza have been approved for maintenance for women following first-line treatment.  There are many women who completed first line treatment quite a while ago.  Will they miss out on this option to take these maintenance drugs?  What is available to women who are not newly diagnosed, may not have recurred,  and don't have any maintenance offered to them?
  • MarilynOCC
    MarilynOCC
    Great questions.  Let me clarify some things for you.
    1. Lynparza and Zejula have NOT be approved for funding as maintenance treatment for women after first line treatment. We are waiting for news about Lynparza, which would be available for women with a BRCA mutation.  The manufacturers of Zejula have not yet applied for funding for this drug after first line treatment.  Even if approved, treatment with these maintenance drugs have to start within a certain time frame after treatment ends, so women who had first line treatment a while ago would not be eligible.

    2. Lynparza has been approved and is funded as a maintenance treatment after recurrence for women with a BRCA mutation.  Zejula is not yet approved for funding for this purpose.  We are waiting for news about this. Treatment with Zejula will not be not dependent on BRCA status.

    I hope this helps to answer your questions.


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