Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 ([email protected]).

Let's get started! Come and introduce yourself



  • @Gabrielle . I had four good news checkups, still NED after one year. About a month later I started having many physical symptoms, which were the recurrence I'm now facing. Go ask for what you need! All the best.
  • @Gabrielle . I also wanted to tell you that I had the genetic testing done here in Manitoba, while in treatment. I was told our province has ONE person who analyzes and reports the results. They have cut waiting times for results down frm a year to about six months now. When my results were ready, I was called in for an appt to speak  with a genetic counselor. My sister was welcome to attend as the information could be important for her life as well. I was given a copy of the results. 
  • Thank You so much with your information on how you are followed up on. It is a good thing that your specialist follows up with you every 3 months. I would definitely prefer that. I totally understand their thinking about test/anxiety. My doctor only wants to see me every 6 months. I wish you all the best with your upcoming treatments. You are now on my list of people that I pray for Jane The list is getting long. Ha!  Thinking of you and good luck!  Thank You Again!
  • Hello everyone. My story begins in July 2016.  I wasn't feeling well. I thought I had irritable bowel - sometimes diarrhea, sometimes constipation, and a heavy feeling. I had an ultrasound in August and they found large ovarian cysts. My family doctor said we'd find out after surgery if it was cancer.  So I kept telling myself it wasn't cancer, as there's not been a lot of cancer in the family. I had surgery in Nov. 2016.  They said maybe they'd just remove the cysts, or maybe if they found cancer, it would be a hysterectomy.  However, the morning of surgery, they told me it would be a 5 hour surgery, so I think they already knew I had cancer.  So that evening, the surgeon came to see me in recovery and told me they'd found ovarian cancer and done the hysterectomy. The larger cyst was a 17cm long oval thing.  I was in hospital for 4 nights.  
         I had to wait 4 weeks for the pathology report, though.  I'd had stage 2 ovarian cancer. I had 6 chemo sessions, 3 weeks apart.  I had 25 radiation treatments. 
          I started going back to the gym in July, 2017.  I love going to zumba classes. I had leg swelling on the Left in September and saw my oncologist who referred me to a lymphedema therapist. I found out my lymphedema is in both legs.  I have custom made compression pantyhose.  I hate them.  They're so hard to put on!  But, my legs are less swollen.  I had a bit of tendinitis or something in my Left arm back in Sept., but it's much worse now, I think due to all the pulling and struggling with the pantyhose. My lymphedema therapist has given me exercises for my arm. 
       My blood tests are showing No Evidence of Disease. 
  • Hello @Elsie13 - welcome to the chat and thank you for sharing your story - you have been through alot and I am glad to hear you were able to go back to Zumba. That is good you have a plan for the lymphedema!
    And very good news about the NED!
    We hope you will find some great support here on the site.
    Please join us on Tuesdays for the live chat if you are around 7:00 PM CST 
  • Hi @JoJo  What an amazing story to be a 27 year survivor!  I'm so glad you found our community.  I'm sure you will bring hope to many other women!   
  • Hi @Gabrielle.  Welcome to OVdialogue.  I see that you have already received some good feedback on your situation.  It is great news that your CT scan was clear, but it is understandable that you are uncomfortable not seeing your specialist for 18 months.  You can always call and book an appointment with them to discuss your concerns.  You can also ask for a referral to a genetics counsellor to discuss your results in more detail or ask the the specialist to do that with you.  Sometimes there can be a long wait to see a genetics counsellor in person.  Yes, you will want to know more about other risks for yourself relating to breast cancer and the implications for your sisters regarding their risk for both ovarian and breast cancer.  There are options for all of you to reduce your risk and these are things that a genetics counsellor can help with.  

    You could also see your family doctor and ask them for a referral to a genetics counsellor or call a genetic clinic yourself and ask for an appointment.  Since you have already received a positive test result, they may agree to see you without a referral - I am not sure about this.  Here is a website to look up a clinic near you:

    There is an organization (actually located in Edmonton) that deals specifically with hereditary breast and ovarian cancer.  Their website is very good.

    Perhaps you can also see your family doctor more regularly than the specialist to know that you have some ongoing medical follow up.  

    You can always be connected with other women right here in OVdialogue as you continue to navigate this new part of your journey.  Good to have you with us!

  • Thank You! Marilyn for your good advice. I made a mistake.  My oncologist wants to see me this coming September. Not September/2019. However, I have spoken to my family doctor about setting up genetic counseling for my daughter and myself. As you have mentioned, it takes a long time to see someone. Your support on this website is very valuable. I have also registered for a conference that is taking place in Edmonton AB on May 26/18. I will gain I am sure much needed additional information and contact with many women with ovarian cancer. 
  • Thank You as well Jane West for the information you provided me and your concern. I am sorry to hear about your recurrence. Please take care!
  • Welcome @Tara and @battleoflife12018 - you are also welcome to share your story here under this topic tab.
    You can also add to your profile page as well.
    We hope you find good resources here and if you are available to join us - we try to chat live on Tuesdays at 7:00 PM CST 
  • Thank You for the chai tea Flowergirl.  What a thoughtful gesture. 
  • You are most welcome @Gabrielle - I hope you had a great time at the conference
  • Welcome again @trixielee - you can share your story here as well as on your profile page if you like.
    Also, if you are available on Tuesdays at 7:00 PM CST - join us in the live chat topic.
  • It was a great conference. I was so impressed with the organization and how special we were made to feel. What a strong bunch of women!  There were very sad moments as well especially  When you listen to the women and what they have had to go through and how some have little support. It breaks your heart!  Your little gesture of tea was the icing on the cake. Thank You Again!
  • You're most welcome.

    @Teddybear @sharon - and those new to the chat -  you are welcome to post your stories here or under your profile  section - click under my story.

    We hope you find much support here on the site and please feel free to scroll through all the pages and topics as there are several. 

  • Hello @emsneil - how are you tonight?

  • and hello @trixielee - hope you are doing well tonight
  • Hi.  I'm in rural Alberta.  Currently no evidence of disease at age 50.  2016 began and i had been ill for months; had heavy bleeding, pain in my lower back, bloating.  Doctors kept telling me to lose weight, my stomach was getting bigger and bigger.  My pants waist started to roll down, had to get underwear several sizes bigger.  Shirts seemed to be getting too short and didn't cover my belly.  I was seeing a chiropractor with limited success in being pain-free.  I ended up in emergency with kidney stones; had a prescription.  the severe pain returned and i went for an ultrasound which detected masses on my right ovary.  This was at the end of April.  A visit to a gynecologist was short; she told me she was referring me to a gyn-onc at the cancer clinic because the mass on my ovary was solid as well as fluid.  I left work, preferring to quit trying to work through the persistent pain. The gyn-onc didn't know yet if the tumour was cancerous.  She thought that my pain would be relieved immediately by removing fluid.  I went to ultrasound and they told me there was no fluid.  I felt like crying in disappointment as i had thought my pain would be gone that day.  I had surgery in July 2016, staged at 2B High Grade Serous.  Followed by 6 cycles of Carbo-Taxol. 
    Chemo was hell.  Have neuropathy in fingers and feet.  Gained weight as a result of the steroids during cancer treatment -- yes it affected taste but i still would angrily eat food that i could tolerate.  Returned to work part time last year and have not been able to continue due to PTSD that was triggered by the stress of fighting for my life in cancer plus family troubles.  My formerly straight hair is now fine and wavy.  I recently began having issues with incontinence.  Hate it, but grateful to be alive.  Next checkup is in a couple weeks.
  • Hi Cree 1. Welcome to the ovidialogue community. I am also from rural Northern Alberta. You will find much support here as well as many good resources and info. Wishing you much luck in your upcoming appointment. 
  • Hello @cree1 - welcome to the chat site and yes, we hope you will find much support here. There are many pages of topics so you are welcome to read through all the previous posts.
    We try to meet together live on Tuesdays at 7:00 PM CST if you are available. I'll also private message you. 
  • Hi there everyone! I was diagnosed with Ovarian high grade serous adenocarcinoma back in March 2017. Two rounds of Chemo, debulking, and 4 more rounds of Chemo left me tired, but no evidence of disease!! YAY!
    May of this year - I noticed some spatial awareness issues on my right side. Clumsy, awkward and always hitting to door frame when walking through a door. Went for an MRI and they found a tumour in my brain, that they believe is related to the OV. They suspect a single cancer cell escaped into my spinal fluid and up into my brain while I was waiting to diagnosed last year. Chemo doesn't work on the brain? 2% chance of this apparently. I just hope it's not a new primary. I had 5 rounds of radiation on my head 😳 and now we wait for another MRI at the end of June to see what left of the little guy. Fingers crossed. Now off to do more research!
  • Hello @chiusa - welcome to the chat. Thank you for sharing all that has happened to you. Yes, fingers crossed for you too! 

    We hope you will find some great support here on the site and if you are around on Tuesdays, we try to chat live at 7:00 PMCST 
  • Welcome to you also @smm70 - you are welcome to post your story here as well as on your bio page. 
    Thank you for sharing your story - hope that you can get some relief for the neuropathy.
    If you can join us Tuesdays, we try to chat live at 7:00 PMCST 
  • Welcome to the chat site @lesley1955 - you can also post your story here and on your bio page if you wish.
    We hope you can join us to live chat on Tuesdays at 7:00 PMCST if you are around then; otherwise we will catch you around the site 24/7!
  • Hi everyone; my name is Diane and I was diagnosed with stage 3 serous in April of 2013 at age 64. It could have been found in 2012 but a botched mesh job in 2000 finally revealed a mess that took a year to fix.before the doctors found the cancer. So a surgery to debulk left me with a colostomy to deal with throughout my chemotherapy journey. The colostomy was reversed 3 months after my last chemo, but I have. the utmost respect for anyone who has one permanently. I am now 5 years cancer free and living with neuropathy but the key word is   LIVING  .    😋
  • Hello @Dihabibi, Diane. Glad you have found OVDialogue.  What an awful thing, wondering if the cancer was found a year earlier, what differences would there have been? Still I totally agree, "the key word is LIVING." If you scroll through the DISCUSSIONS, you'll
      see all kinds of interesting topics, like Neuropathy, Chemotherapy, Maintenance treatments, etc.  
  • Yes, you have been through alot, welcome @Dihabibi.
    Thank you for sharing your story and we are glad you have found the site.
    Hope you can join us on Tuesdays at 7:00 PM CST for the live chat if you are around at that time.
  • Hi everyone! Melissa from Antigonish county, Nova Scotia here. I’m not even really sure where to start. I was diagnosed with ovarian cancer in March of this year after my first surgery, at stage 1. I had my second surgery the first of May and am told that I am now cancer free. However, during my first surgery my tumour broke open during the removal and now I’m being told that I am at risk of possibily having cancer cells inside my body. My cancer team suggested no chemo as I’m currently in remission and we were unsure of just how much had spilled over into my abdomen. So I’m currently being checked every 4 months and am hopeful. 
  • Hello @canadianwarrior - Melissa. Welcome to the chat site and we are glad you found it. Thank you for sharing your story; you will find much support here. Please join us on Tuesdays as we try to live chat at 7:00 PM CST (it will be late your time). I'll also private message you.