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 (




  • Great - thanks @Quiltmama!  Talk to you on November 15.  For those who may not know, Ovarian Cancer Canada is hosting a webinar called "Ovarian Cancer 101" .  Check it out at and register at:

  • Hi Everyone.  I just has my 3 month CA 125 results come back elevated again.  I have had one recurrence so I am off to the doctor next week for a plan.  I have no idea at this point.  I am surprised because with initial diagnosis and recurrence I had visible symptoms whereas now I feel great.  I have elevated inflammation levels however which I understand do not help and can complicate things. 
  • I already have a recurrence.  I finished  treatment a month ago and was experiencing some new pain during the end treatment, so the doc ordered a CT much earlier than normal.  Mine has metastasized to the retroperitoneal lymph nodes.  I'm a little frustrated as the clinic I go to would only book me with the radiation oncologist that ordered the CT, and not the gyne oncologist who is the person I think I really need to see to find out my options.  I find the waiting for "proper channels" insanely frustrating.
  • Hello Pumpkinpi.  Do you not have a GP. The GP would know which doctor is most appropriate.  If that is not available why do you not call your provincial College of Physicians to ask which doctor would be most suitable.  I have called them during my ordeal with questions.  
  • I forgot to mention that with radiation it seems to indicate localized and that is what is needed for you versus general treatment.
  • Thanks @CurlyHair!  My GP was the one who suggested I call and see if I could get an appointment with the gyne onc, as I just finished 25 rounds of radiation, which as far as we both know, means I can't have anymore.  It wouldn't be so bad, but the cancer centre is 2+ hours away, so it's a full day endeavour.  At least my husband and I get to spend time together!  Although I would love to go on a date that didn't involve the cancer centre!  Lol!  My appointment is tomorrow, so I'll find out what's up.  Hopefully!  
  • Hi all, I was diagonsed 2012, age 42.  I had surgery and front line chemo declare NED. recurrent nine months later, extreme fatigue was my symptom. I was back to work three hours a day and would just crash when I got home from work.  Finally called my GP after a couple of weeks and then it was back on the chemo treadmill.  I have been in treatment every year since and have never reached NED status again.  I believe, that my journey has been easier mentally, beacause I haven’t been on the recurrence roller coaster. I’m living with cancer every day.  I try my best to not let it take over my life.  I spend time making memories with my family.  I’m trying to put together a legacy box for my daughter, but it’s hard to prepare for a life without me in it. I ended up in hospital on Friday, I had a pulmonary embolism, and I realized anything can happen at anytime. My husband and I came to the decision that we are going to no longer wait, but do instead.
  • Hi @Tricia415.  You have been through a lot, haven't you?I can't imagine what it has been like being in some form of treatment for so long.  Your comment "I try my best to not let it (cancer) take over my life" says a lot about you in terms of how you have been dealing with it. Amazing and inspiring.  Talking about making memories with your family and a legacy box for your daughter is quite beautiful.  The difficulty as you say, is trying to prepare for a life without you in it. It sounds like the different things you are doing will help in that process.

    I'm sorry to hear that you landed in the hospital.  When you say that experience led you and your husband to do and no longer wait - what does that mean?  What are you going to do? 
  • @resilient1 Thanks for posting this link!
  • Hi @Marilyn

    I mean that my husband and I have been making travel plans for a year or two down the road.  We have taken many family trips over the last five years, but my husband and I want to take a trip by ourselves. I’m now want to take that trip soon, we are going to do a big family vacation. And I’m planning my First Annual Living Wake for April of next year.  We are also just going to do what we want when we can.  

  • @Tricia415 I'm so sorry that you've been in constant treatment. I've just found out I have platinum resistant cancer, so my mind is spinning, trying to figure out what I can leave behind for my son so that he has something meaningful to hold on to.  Besides all the awesome memories I am determined to keep making.  Do you mind sharing what you are putting in your legacy box for your daughter?  I've read of writing letters for future events.  But I just can't bear to start that, because it's so heartbreaking to imagine not being there.  
  • @Pumpkinpi
    I am writing a journal of our past, with photos.  I have made a baby blanket and hat. I have my earrings and garter belt from my wedding.  I have little notes.  A high school graduation gift and card. I have an app on my phone ‘Record Me Now’ which asks questions and video records your answers. I have requested my family a friends provide stories of me. I bought a box from Michael’s to put it all in.  My husband will give the items to her at the appropriate times. 
  • @Tricia415 I think it is amazing all the things you are doing for your daughter and for you and your husband.  Have you decided where you are going on your trip?  A friend of mine actually did something similar to the idea of a Living Wake too.  It seemed a little strange at first, but it was a beautiful and joyful event.   It  must take great emotional strength to think about these things, plan and create all these memories and gifts.  How do you do it?  Where do get this strength?  I'm sure it would be helpful to @Pumpkinpi and others if you could share about this.  How do handle the darker days?
  • MarilynOCC Moderator
    edited November 2017
    Hi @Pumpkinpi.  I am sorry to learn about your recent news.  Are you still in shock?  Has the doctor suggested other drugs that they would like to try?

    I can only imagine how you are feeling and the fear and sadness you are feeling as it relates to your son.  @Tricia415 has some wonderful ideas about what she is creating for her daughter.  Maybe when you feel a little stronger, after a little more time to adjust to this latest news, you will be able to think about what you can do for your son.  How old is he?  Is there someone close to you that you could talk to about this and maybe ask for some help?
  • I have not finished my treatment yet but am already worrying about recurrence! Has anyone seen a naturopath oncologist or done other alternative treatments after their frontline treatment?
  • Was anyone stage 1c that had a recurrence? 
  • Flowergirl
    Hi @Claudia and @KarenMari53 - and everyone - if you have not viewed them already - there are some good recorded webinars on the OCC site. You can access them from the main page:
    Click on "events and support" tab - then select "go online for support" , then click on Webinar series... all of the pre recorded sessions are there. I found them helpful and hopeful!
  • Flowergirl
    How are you feeling @Tricia415 and @Pumpkinpi
  • @Flowergirl, I’m tired all the time. Doing a second round of etoposide. Lost my hair again, but my c125 & c15 both came down. Hoping to make it through another summer.
  • It’s good to read all the positive comments about recurrence. I was diagnosed with stage 3 and have had chemo and debulking surgery followed by more chemo. I’m fine now but because of my age (71) I think I might have a recurrence. I just left a comment on another page asking about recurrence before I found this one, so sorry about repeating myself.
  • Flowergirl
    That is ok @Kitty - there is bound to be lots of overlap. 
    How are you feeling today @Tricia415 and @Claudia and @Pumpkinpi ?

    I am wondering and curious, for those who have experienced or are currently dealing with a recurrence, are you able to compare what it is like - physically and/or emotionally - or share what you are comfortable with - to how it was when you were first diagnosed - thanks in advance.
  • Jeannie
    It’s really difficult to hear that the Cancer is back. I’ve gone through it twice. Both times I had a feeling but to actually hear it from the Dr was so hard! I’ve also been told twice that the chemo isn’t working which is super difficult to hear, as well. I cried in the oncologist’s office which is tough to admit but I think it’s ok to be sad when you hear news like that!  I was down for a while but I have hope again and I’m determined to beat this! 
  • Flowergirl
    Hello Jeannie and thank you very much for sharing. Yes, this is all difficult and yes, it is ok to be sad because we are human and have feelings (as my support help has been saying this). And yes, it took a long time for me to recognize that we need to have hope.
    I went back through the previous chats? Are you still in Saudi Arabia and are you still in treatment at this time?
  • JaneWest
    It's hard to wrap my mind around, but it looks like I'm facing a recurrence. I've been NED for over a year since debulking surgery in Sept 2016. Chemo treatments (3 pre and 18 post) ended just over a year ago, in Feb 2017. I've put a lot of effort into recovery since then - doing yoga, pilates, fitness, counselling, art therapy. I took a great trip in Feb 2018 to celebrate one year of NED. Two weeks after I returned, I started having noticeable symptoms and they continued for the whole month of March - frequent and urgent need to pee; shooting pains in my pelvis; bloating (my pants were tighter); feeling full quicker. I saw my regular doctor last week and she felt something hard in my abdomen. I'm having trouble with bowel movements, and last weekend started having back pain.
    I learned today that my blood test showed that the CA125 is at 1,500. My gyne onc ordered a CT scan a week ago, but I have yet to hear anything - unfortunate delays esp due to the easter weekend closures. They say they are rushing things. It's hard to find much comfort in that because this is scary. My mind went to the worst case scenario today when I heard the CA125 number, just like it had two years ago.
    Yet somehow, later this afternoon, I was able to feel some lightness and the worry lessened. Perhaps I was able to alter my thoughts a little, and made a decision that it is what it is, and I will just fight like I did the first time. I'm back in warrior mode. How do we find the strength, right? But somehow, we do. Reading your stories here tonight has really helped me begin to prepare for what is coming. It's such a hard journey, but you are doing it. You are inspiring to me, and I hope to beat this again.
  • @JaneWest I am sorry to hear that the cancer may have returned.  I am dealing with my second recurrence and the treatment has been working yet again.  Hard to figure.  I feel ok.  My CA125 is still too high but coming down.  I seem to have the problem with ascites and thickening versus hard tumours.  I just try to stay positive and keep going.  I do what I can do and what stick to what I can control.  Try to trust my doctors for what they can do and keep on plugging.  I have positive thoughts for you.  Good luck.  
  • Flowergirl
    Hello @JaneWest and @CurlyHair - thank you again for sharing your recent stories....we are thankful for this inspiring supportive network here - wishing you all some comfort for the next few days.
  • JaneWest
    Recurrence was in fact confirmed last week. I ended up going to emergency where they did a CT scan. The very next day, the letter arrived with the scheduled date of CT scan my oncologist had ordered "expedited". The date was set for April 19. Unbelievable. I would have been in agony by then. They've already got me back on hydromorphone for pain, which is working. I see my gyne oncologist tomorrow and they will already have a plan ready. I have no idea what to expect, but imagine it would likely be chemo. My friend just told me of a woman she knows of who has had 12 recurrences of ovarian cancer. Really?!!! wow.
  • JaneWest
    Would anyone care to share the specific type of ovarian cancer you were diagnosed with? I have learned that there are different rates of recurrence and treatment possibilities, depending on which type of OC.
  • @JaneWest FYI I have the most common form of ovarian cancer.  Epithelial and have had two recurrences in 3 years.  I am being treated with chemotherapy right now for it.  It seems to be helping and the ascites that had been continually built up has almost gone.  I may be getting olaparib at some point if I can survive.  The ascites is the big problem for me.  Would not wish it on anyone.  Good luck with your treatments.