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 (

Let's get started! Come and introduce yourself



  • Hi @Dee I hope by now you have recovered from your reaction to the chemo.  That is never fun and good that if it had to happen it was at the last treatment.  Good to have you back on the site!  
  • Hi @Shelley417, Welcome to the site.  A cancer diagnosis is a scary thing, particularly when so unexpected!  It is not surprising that you are second guessing everything and wondering if everything has been done that could be done.  There are lots of good discussions on the site that deal with Anxiety and worry that you may find helpful.  Time may also help and hearing from other women like @Nancy1 and @terrylee .  When you mentioned the subtype of the cancer, did you mean endometrioid ovarian cancer?  
  • Flowergirl
    Hello @Shelley417- welcome to the chat group. Sorry for all you have gone through and glad to have you on the site. There are a fewladies on the chat site that had surgery only as well so we are hoping you will find much support here. You may want to read back through this topic (wow- we are at over 10 pages now) as well as some of the previous posts to see how others have coped.  
    We also try to meet live on Tuesdays at 7:00 CST if you are able to join us.
  • Hi @Marilyn!  Yes, I did mean endometriod subtype ovarian cancer.  I just got my wording a bit wrong.  Primary type was epithelial (which appears to be the most common).  I have done quite a bit of research and it looks like my gyn onc followed the NCCN guidelines for treatment so that makes me feel better but we all know everyone experiences treatment and cancer differently so I always think in the back of my mind if I should have gone through with the surgical staging.  I was just too chicken because of the pain involved and the further recovery.  I have suffered from anxiety for years and this just upped the quotient for me......
  • Flowergirl
    Thanks @Marilyn
  • Dee
    Hi @Marilyn.  I am doing good and slowly getting my energy back as well as deal with my stronger menopause thanks to much needed full hysterectomy.
  • Hi everyone.  My name is Laurie, I am 62 and just been diagnosed with Ovarian Cancer.  A 7x5x3.5 cm solid and cystic mass was found and CA-125 is 68. We are just waiting for my CT scan results and a total abdominal hysterectomy with Salphingo-Oophorectomy is schedule in two weeks. It is 6:00 am and I've been up for 3 hours, sleeping is becoming more and more difficult.  I am happy to have found this site.  I need to be able to really talk about my fears, etc. and not put more stress on my family. I look forward to the support and in time hoping to be able to "Pay it forward". :) 
  • Hi Laurie! You have come to the right place for additional support!  At this point your stress and fear is at its highest and your mind is all over the place. You worry about your family. You feel like and emotional roller coaster. I can personally tell you it will get better with time. Take it one step at a time. Get some fresh air, take a walk and do not be afraid to reach out to your family and friends for help and that emotional support you need especially at this time. Take Care!
  • Flowergirl
    Hello @LaurieG - yes, welcome to the chat site. We hope you will find much support here. 
    Wishing you well with the upcoming surgery. There are several topics on this site that may offer you some support and coping tips; you are welcome to read back through the topics as you may find there are several pages on each one.
    Hope you are feeling well today and perhaps you are able to join us on Tuesdays at 7:00 PM CST for the live chats. 
  • Hi @LaurieG Welcome to the site.. Yes we all understand the stress you are feeling. This is a very helpful site to relieve some of that stress. It is always easier to talk to people that have been through it.. Family and friends help a lot but  until you walk down this road you don't totally understand.  It will get better .. I had the same surgery almost six years ago....You take one day at a time Laurie.
  • Hi, I’m from Ontario, just East of Toronto. I just turned 46. I have 3 wonderful children. I was diagnosed with BRCA 1 & 2 in 2014. My doctors recommended immediate hysterectomy and future mastectomy. I had full hysterectomy in 2014 and double mastectomy in 2016, both preventative. In April 2018 I was hospitalized with what I thought was a hernia but turned out to be severe Ascites caused by Stage 3 ovarian cancer; my CA125 was 38,000. I started chemo (Paclitaxel and Carboplatin) in May (4 cycles), debunking surgery in August and now IP chemo with same drugs. Unfortunately, because of my rare genes and unusually high CA125 they really aren’t sure what to do with me. The 9 weeks I was off chemo for the surgery my CA125 jumped from 500 (the lowest it’s been) back up to 5000. My oncologist says she is extremely concerned that I won’t go into remission and has advised me to take the trips and spend as much time as I can with my children as they can’t give me any more chemo. I asked about trials and was told she doesn’t think I will qualify for any as they are mostly for one BRCA or the other, my having both will exclude me. I am devastated and panicked as I will receive my last IP chemo in 2 days and I feel like they are just going to send me home to die. I’ve handled my chemo treatments very well...levels are good, kidney function still excellent but my CA125 doesn’t seem to want to go down or stay down. 
  • @Melodie i am sending you so much love. I don't know all the protocols but it seems some ladies here have had years of chemos to keep things at bay. Is it possible to get more opinions from other oncologists?
    Whatever comes we are here to support you <3
  • Melodie, I completely agree with red1976. I would definitely seek the opinion of other oncologists and I would also consult with my personal physician and I would also seek out any integrative oncologists in your area. Integrative oncologists can be a valuable source of information. In the Toronto area there must me many of these specialists. We are here to listen, support you and be available at any time. You are in my thoughts and prayers!❤️
  • Flowergirl
    Welcome @Melodie to the chat site. Sorry you are dealing with these issues and know we are here to support you.
    Hoping you are comfortable as you finish the IP sessions.
    Yes,  please ask about all the possibilities for clinical trials and chemo options.
  • @Melodie Hello I am not sure if this suggestion will help but I would like to suggest that you call the Princess Margaret Hospital in Toronto and speak with someone in their Gynecological Oncology Clinic to see if you can consult with them about your situation.  I understand you live elsewhere but it might be of help.  They would probably need a consult but can your GP be a referral if they accept?  I am thinking along the lines of a second opinion.  The number for the clinic is 416-946-2220.  

    I am including the link to their website for reference.  

    Please give it a try.  Good luck
  • @Melodie I forgot to provide the link for the list of drugs that are out there for ovarian cancer.  I have provided the link from the National Cancer Institute.
  • Hi everyone
    I am new to the site and new to this life event called "Ovarian cancer". I had surgery in July 2018 for what I was told a 20cm cyst. They removed by left ovary and the cyst. Specialists in Canada couldn't diagnose the cyst, so they sent my ovary and cyst to a medical lab in Boston. There, they diagnosed it as a Yolk sac tumour. This was then confirmed again in Canada. I started chemo just the other day, and so far so good. Looking for anyone in Canada with the yolk sac tumor of the ovary. This is a very rare form of cancer, and as such, I have found it difficult to find anyone with it.
    Thanks everyone!
    P.S. I received the "By Your Side" book in the mail the other day, and its so fantastic! I cant believe this resource is free. Thank you for sending!
  • Flowergirl
    Hello @bsblover4evercanada - welcome to the site and sorry you are dealing with this disease. Sounds like your DR team is really looking after you and hope the chemo is going ok for you.
    Yes, the resource book is excellent to help you through these challenges.
    We hope you can join us on Tuesdays at 7:00 PM CST for our live chats
  • Hi folks, just diagnosed one week ago after many months of vague symptoms. Ct scan saw ovarian tumours, ascites, lymph node and omental  spread and partial blockage of my colon. CA 125 skyhigh.. I am waiting for a gyn oncology referral and a CT guided biopsy....i am scared and do not have any idea how long I have to wait. The wait times in N S are scary! After a eeek no notification. I am 61 and very medically knowledgeable but I am afraid of slipping through the cracks and feel very alone in this.
  • Flowergirl
    Hello @JanCan - so sorry you are dealing with this and glad you have found this site.
    This is the place for much support and we hope you feel less alone.
    Yes, for sure - keep on that medical team/system. Our experiences here have focused us that we must advocate for ourselves. Please keep in contact with your Cancer Navigator system to get that appointment and perhaps your family DR can assist with that as well so you don't fall through the cracks. 
    Again, please do not hesitate to go to your ER department if you are in pain. 

  • @JanCan I agree with Flowergirl.  Stay on top of your healthcare team.  Ask questions about what drugs are available for your situation.  Make sure you ask questions as you go. 
  • Hi again! I now have an oncologist and a surgery date Nov 19. I am not sure how I am going to manage until then with the discomfort I am having, I can only eat liquid food like shakes or soup due to partial bowel obstruction. My CT scan report is very scary, carcinomatosis, omental caking, huge lesions, ascites. I am trying to be normal. I know too much as I work in health care data with stats and terminology and am aware of all the bad... 
  • Also not aware of cancer navigator... what is that?
  • Also with a big surgery how long is the hospital stay, usually?
  • jsullivan33
    Hello @jancan, so glad to see that you have some dates and can get on with the next vital step in your care. Your story is familiar to myself and many of the women on this site - you’re never alone here. As sugested above, I think it’s worthwhile to bring your family physician on board for advocacy. I did this, and it was helpful in getting the system to respond quickly. (Because my GP took a very long time to get to a diagnosis, she saw advocacy  as a concrete opportunity to really help me). Your oncology team will brief you on the length of stay and several other important aspects of your surgery, including how to manage the problems you are currently experiencing between now and surgery. Lean on your family, come to this site, and try to save your energy. Thinking of you from here in Ottawa.
  • Flowergirl
    Hi @JanCan - hope you are felling well tonight 
    The Cancer Navigator for your hospital/region will help you to access the services if you are not getting answers from the DR Team
    You can try here: Patient Navigation
  • VSC
    Hello - I am VSC
    I was diagnosed in September of 2017 with Ovarian Cancer. Went on weekly chemo from October - April and had a hysterectomy and debulking in the middle of it all. The chemo did what it was supposed to and shrunk the tumours and I was able to have the surgery, then continue with the chemo. I also had a serious Pulmonary Embolism and DVT complication before the surgery, which put things on a later schedule. The surgery was successful, the doctors told me they were very sure they got everything that was visible.

    I had scans and blood tests done about 6 weeks ago and although my CA-125 jumped from 6.3 to 60 from my last scan, there are no changes on the scans. I have some enlargement of nodes in the pelvic area, but the doctors say this could be reactive and they are keeping an eye on those things. They are the same size as the first scan and one has shrunk ever so slightly. I am due for another scan in December.
    And here I am.
  • Flowergirl
    Welcome @VSC - Welcome to the site. Thank you for sharing all you have been through. 
    So you are done chemo for now? How are you feeling? 
    It is good they are looking after you and we hope for the best possible outcome for you. 
    Hope you find much support here. You are welcome to join us on the live chats for Tuesdays at 7:00 PM CST
  • Hello everyone! I'm grace, 39 years old, married with one 7 years old lovely daughter  I was diagnose with germ cell tumors (choriocarcinoma & yolk sac) clinically diagnose as stage 1A. I was lucky enough to caught it early when I had operation on February 2018  to remove that was thought to be just a cyst outside of my left ovary and turned out to be tumours. It was weird that when I had an operation to remover my left ovary & tube, it came out as benign. But I still went for 4 cycles of adjuvant chemotherapy. (1 cycle = Monday to Friday, then Monday and Monday). 
    I am here to meet & help others and to share my stories. Because my story just started with a positive pregnancy test. 
    Thank you all and I hope I will be able to start helping others. 
  • VSC
    I finished chemo April 10th - Taxol/Carboplatin.
    I am feeling tired and sweaty. I started having rolling hot and cold flashes and the doctors want to see me on Wednesday because of that and some nausea I have been having. I am just hoping these symptoms are not a reoccurrence so soon since my hair just started growing back.