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 (

Let's get started! Come and introduce yourself



  • Hi @Missy.  Welcome to the site. I'm glad that @midcanada reached out to you who is in a similar situation regarding suboptimal debulking.  Perhaps you can continue to connect and compare notes as time goes on. How are you managing the chemo?  Have you had any side effects or are you tolerating it OK?  Your CA125 has dropped dramatically and hope that continues!  

    We have a guide called By Your Side for women recently diagnosed with ovarian cancer.  Did you receive a copy at your treatment centre?  If not, I would be happy to send you one.  You can private message me through OVdialogue, send me an email at or order it online at

  • @goodday Hi and Welcome to OVdialogue.  I'm glad that you found the site to be able to connect with other women going through similar things as you.  It's hard to play that wait and see game and I suspect some days are better than others.  Glad to hear that you feeling good right now.  Do you have support around you and people you can talk to?  Perhaps you might like to connect with @K_BrancOV @mcbar and @PrincessFiona who all had recurrences in 2016.  You might also like to check out the discussion on recurrence if you haven't already done so.  
  • Hi @Caitsmom.  Welcome to OVdialogue!  Great that you found the site and that you are eager to learn from other women. Are there particular topics or subjects that are of interest to you?   I suspect that you have things to share with others too as you were diagnosed at a young age following a hysterectomy at 33.  Many younger women struggle with their inability to have children.  How have you dealt with that or is that difficult to talk about?  Based on your username perhaps you have a child? I can connect you with other young women if you like or you can see some of that discussion by reading through the previous stories in this particular discussion.  
  • Hi @jojo305!  Welcome to the site!  Sounds like you had quite a journey to get a complete diagnosis but great that is was Stage 1.  And you are coming up to almost 5 years cancer free.  Is that something you think about or not?  

    Thanks for supporting the Ovarian Cancer Canada Walk of Hope!  The fact that you have walked in 5 of them is awesome.  You might want to check out the discussion on the Walk of Hope and post a picture.  There are a few others who have also done 5 walks!
  • Marilyn said:
    Hi @Caitsmom.  Welcome to OVdialogue!  Great that you found the site and that you are eager to learn from other women. Are there particular topics or subjects that are of interest to you?   I suspect that you have things to share with others too as you were diagnosed at a young age following a hysterectomy at 33.  Many younger women struggle with their inability to have children.  How have you dealt with that or is that difficult to talk about?  Based on your username perhaps you have a child? I can connect you with other young women if you like or you can see some of that discussion by reading through the previous stories in this particular discussion.  Hi @Marilyn, yes I am a mom ???? I married when I was 19 so I was fortunate enough to have had a child while I was still young and long before my diagnosis. 
  • Hello 
    My name is Cathy I live in Montreal, I just turned 57 years old.  I was diagnosed with ovarian cancer October 11, 2016.  I had surgery November 2, 2016, the pathology report was in on December 2, 2016. my cancer was stage 3C very aggressive, at this point I was told I should have 6 cycles of chemo, carboplatin and taxol.  I was very concerned about the side effects.  I knew I needed to go with the chemo, therefore I took it on as a challenge, I was determined that I could and would beat this cancer for myself, my husband and my 3 daughters.  Today as I sit here writing this,  my last chemo was April 13, my side effects are mostly gone, my hair is growing back slowly.  I look back at this as a challenge that was sent my way and I was able to win.  Now I am glad to be part of this group and learn about other women and their challenges. 
  • Hi all
    I'm Maureen, 61 years old.I was diagnosed with Stage 1c clear cell ovarian cancer Sept 2015. Had total hysterectomy on Sept 17 and had to have another surgery 2 weeks later on Oct 01 as I had a blockage due to scar tissue. I had 3 rounds of carboplatin and taxol (9 treatments), followed by 25 radiation treatments. Side effects were minimal. Was off work for seven months. Have been doing my follow ups every 3 months for the 1st year and now every 4 months. I am doing great. Lots of love and support from family, friends and colleagues. We can beat this!!????❤️
  • Flowergirl
    hello @Caitsmom @cathy1960 and  @sunshine- welcome and thanks for sharing your stories - hoping you can join us on the live chat on Tuesdays!
  • JaneWest
    Hi @cathy1960 , welcome and glad to meet you. It sounds as though you've done well overall with the surgery and treatment. Your story reminds me of mine, and that I also did well generally with the treatment - even though it was a tough one, and I had to manage many side effects. It really wasn't as bad as it could have been. Luckily the surgery was successful as well. I was surprised by how short your wait was from diagnosis to surgery to treatment. It is so hard to wait when you know what you're dealing with. I finished chemo in Feb, and have had two 3 month check ups, which were good. Wishing you continued health.
  • JaneWest
    Hi @sunshine , glad to meet you and I appreciate your positive spirit! Your timeline with diagnosis, surgeries and treatments also seems short, not too much wait time which is a blessing. It's great that you had few side effects. I've found that there are so many variations in experiences with this cancer for women. Wishing you continued success with this.

  • Hi Caitsmom, sunshine and cathy1960.  Nice to read success your stories.  
  • zephyr
    Falcons said:
    Hi all.  Yay finally on, am busy in treatment for first recurrence.  Diagnosed fall 2014 / winter 2015.  Stage 3 c high grade serous.  So happy we have this site now and looking forward to meeting others through this.  

  • zephyr
    Hi, I was diagnosed with stage 3c high grade serous, November 2015, surgery 2016, chemo paclitoxol and carboplantin March to June 2016, brought my CA125 of 500, down to 16.  Cancer back December 2016, now I have started since August 2017 paclitoxol and avastin, 3 weeks, one week off..tumors not gone but not growing. Falcons, what are they treating you with? How is it going.
  • Unknown
    edited October 2017

    Hi! Marie-PIer from Montréal, 30 years old. I was diagnosed in April 2017 with stage 1A, found during my 4th laparoscopy to remove a 12 cm cyst that was around my right ovary. Let's just say that the pathology results were absolutely not what my doctor and I were expecting that day! Since my hysterectomy in May 2017, they haven't found anything else and I didn't have to do any chemotherapy. Physically I'm doing a lot better, but sometimes emotionally it's a little harder...  I'm hoping to learn more about the disease since everything went so fast between learning that I had the decease and removing it and meet other women 

  • Hi @zephyr.  Welcome to the community!   A lot of women often have questions about treatment particularly when dealing with recurrence.  It is great that you are reaching out to @Falcons to see what her experience is. (You do need to add the @ symbol before the name so the person is alerted to your question).  Have you checked out the discussion about recurrence?  You might find some interesting information there too.  Several women have indicated that they have had a recurrence or dealing with it now.  For example, @deebus52 @CurlyHair @Nanakaw @mcbar @Quiltmama and @PrincessFiona .  Have you received a copy of Still By Your Side?  This is a guide we have available for women dealing with recurrence.  I can send it to you or you can order it on our website.  
  • Hi @MarieRocks.  Welcome to the OVdialogue!  I'm glad to hear that you are now doing well physically but it sounds like it has all been quite a shock which is understandable, particularly because of your age!  Sometimes the emotional impact of an ovarian cancer diagnosis can be as difficult to deal with as the physical side of things.  There are other younger women in the community that you might want to connect with @BrittMK @AmandaRoseRebs @K_BrancOV @Sunflower and @jiselle16.  We also have a guide for women recently diagnosed called By Your Side.  Have you received a copy.  There is information about disease and lots of other topics that you may find helpful.  It is free of charge and I can send you one or you can order it on our website.  Have you been able to find support in your local community?  Have you friends and family been helpful or is it difficult to talk to them about it?
  • Hi!  I'm from Petawawa, ON and am 45, married with a 7 year old.  It was a long, winding road to get my diagnosis.  In January, 2017 I finally learned that I had concurrent stage III ovarian and stage I endometrial cancers.  I'm currently waiting for genetic testing for Lynch syndrome.  I've had 6 rounds of carbo/taxol and am almost finished 25 rounds of radiation.
    I am so grateful that there is finally a Canadian chat site for all of us.
  • Hello Pumpkinpi!  Welcome to OVdialogue.  Are there particular topics of interest to you?  Can you tell us more about Lynch syndrome because I know very little about it.  Glad you're here!
  • KGrover
    edited October 2017
    Hi @Pumpkinpi and welcome to the community. I am glad you found us. There are many others who also have young children and who have to juggle childcare and treatment. How have you managed it?
  • Hello Pumpkinpi.  Nice to hear from you.  
  • Hi my name is Claudia. I moved to Canada 8 years ago and live in Toronto with my husband and two teenage daughters. I was diagnosed with stage 3 ovarian cancer at the end of August, after I had originally been misdiagnosed with having a fibroid when I first noticed symptoms (abdominal pain and swollen abdomen) at the beginning of July. I had surgery 10 days ago and will start chemotherapy at the end of October - which I am dreading. I was quite interested to read about the benefits of medical marijuana, and I am also keen on getting as much information as possible about nutrition, which I think is one of the cornerstones of combatting cancer (next to mental health and exercise). I am glad to have found a community of women facing the same issues, as I don't really know anyone who has ovarian cancer. I am glad that a lot of the comments are quite positive.
  • Hi @Claudia and welcome to the community. Unfortunately like you, so many women are misdiagnosed before their proper diagnosis. Chemotherapy can be very intimidating - wondering how you will react and how to prepare. Perhaps @janewest or @cathy1960 could provide some advice on what to expect and how to prepare.
  • Hello Claudia I was able to handle my chemo fairly well with anti-nausea medication. Make sure you receive that.  Keep track of your symptoms to tell the doctor at follow ups to be able to make adjustments if necessary.  
  • @tigerlily, Lynch Syndrome is a hereditary genetic mutation where the genes that are responsible for repairing DNA just don't work.  This increases the risk for all cancers in a lifetime, but the 3 most common cancers for people who have this are colon, ovarian and endometrial (uterine).  There is a 50% chance of passing this to your children.  I had both ovarian and endometrial and my mother died at age 42 of colon cancer.  I won't be surprised if my genetic testing comes back positive.  
    @KGrover, I think my first overwhelming concern was for my child.  But kids are way more resilient than most adults.  We were honest with him about what was going on, and prepared him for each of the different procedures I underwent.  He was free to ask any questions.  We kept his routine as stable as possible, and recruited family, friends and neighbours to help when I was away for treatments.  I also reassured him I was not going to die from this.  I also practiced telling him in front of the mirror so that I could tell him calmly and projected confidence in the treatments and procedures that I needed to do to get healthy.  We kept him in the loop for everything and didn't worry him needlessly over things until they were going to happen.  
  • @pumpinkpi Your communication with your son is wonderful. I am sure there are many others who could learn from your approach!
  • Flowergirl
    Hello and welcome @Pumpkinpi and @Claudia - thank you for sharing your stories and I hope you are doing well this week.
  • Flowergirl
    thanks @KGrover for joining us this week!
  • Hi @Claudia!  It's great to have you here on the site.  I had the same feelings of dread before I started chemo... but I was lucky to have a great chemo nurse, and good communication with my oncologist.   I found that by the time I got to the third round or so of treatment I could predict when I would start feeling the worst side effects - for me it was two days after chemo, I would get intense muscle pain - for about two or three days and then it would slowly diminish.  It got so I could  plan for it.- which made it easier to handle. Wishing you the best!
  • I am from Nova Scotia. In Feb. 2015 I was diagnosed and in 4 days had my hysterectomy and afterwards started chemo. Went back to the 'norm' after treatment, and in June 2016 it returned in my left lung and so I had Thoraxic surgery and more chemo. In June 2017 the bugger came back. There is a 'shadow' in my lower right abdomen and in my liver. Tomorrow I finish round #3 if my blood counts bounce back. And then we wait to find out if I can do Lynparza (olaparib).  
    So far I am liking this forum. Good info. :O)
  • Hello @StellaMaris.  Welcome.  I read your comment on appetite.  Thank you.  Good luck with your treatment.  The chemo works to keep it down and sometimes get rid of it.  Recurrence is an issue many a time.  Me as well.  One so far.  I am using Weight Watchers to try to lose some of the appetite I had during the last chemo treatment.  Stress eating as well.