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 (

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  • Hi suzie,
    Things that you may need are your phone charger, ipad or chromebook with charger, books, sweater, wear comfy clothes. You may want to take some snacks like cheese and crackers,  some water maybe.. Good luck!! 
  • Hi @suzieq I brought my "chemo bag" to each treatment.  I had my phone, charger and water.  I had paper and pen to write down any notes.  I had a "bucket"(lined with a bag) in the car for the first couple of treatments as I did not know how I react with regards to vomiting! Thankfully for me this was not needed.  Good luck and just breathe...... I was way more scared than I needed to be!  
  • @suzieq..welcome to the support site.  Sorry you've had to get a cancer diagnosis.  I too had stage 3 metastatic ov cancer.  I have been out of treatment now for over a year.  Hope your treatment too will kick this to the pack a small shoulder bag or knapsack...have snacks - sandwich cookies, granola...whatever you like to snack on...(we were never served any lunch )..drinks, phone, tablet or laptop...puzzles books, reading material...and power cords for your equipment and earphones.   Depending on the chemo you receive it may take awhile as they have to run some drugs first treatment was 8 hours...but on average 5-6 hours.  I usually slept for the first 2 or 3 hours because of the premedications I would take before each treatment.  I think if you go'll be good.  Good luck.  
  • sorry to hear of the difficulties you have had to endure with your cancer.. like rosebud indicated..I wonder if a conversation about Zejula with your oncology team would be good...they might be hesitant tho because of kidney and liver issues you have...maybe they have a plan for you...stay strong...sending positivity your way.
  • @suzieq very sorry to hear of your diagnosis.  Your story is similar to mine.  I didn't know I had cancer before my surgery.  I knew there was a mass (4 actually - 2 were cancerous...2 were not) but I thought like all the other women in my family, they were fibroids.  but..alas...not so much.  I remember going in for my first treatment, not know a dang thing about what to expect so you have come to the right place.  Like @Bluebird, my treatments were very, very long.  And the last half of my treatments were during covid.  I brought with me... my phone, Tablet, book, Blanket, earbuds, book, adult colouring book, journal, snacks & Lunch, my hand fan (for the hot flashes), water and 2 large cups of coffee in thermal mugs.  Because of covid, at least in my cancer centre, there are no volunteers.  So, I was hesitant to ask the nurses to get me coffee, tea or water so I made sure I had lots with me. 

    I personally had no issues with receiving the treatments except for a little pain at the IV site when the Paxilitaxol was going in.  I told my nurse of this immediately and she slowed down the drip and the pain went away. 

    The first 2 days after, I had no side-effects other than the extra energy from the steroids.  Then the next day, my only side-effects were the neuropathy in my fingers and feet...weird feeling it is...but very manageable (I hope you will be similar or better).  I was pretty good with the nausea.  I started to get a bit nauseous one day so I took 1 pill...and it went away. and never came back.  Don't be afraid to take the drugs if you need to.  It is better to head it off than to fight it after.  I learned this lesson from my uncle who decided to be a big man and not take the drugs.  A decision he later regretted.

    Let yourself have the feelings you need to have.  Don't try to be brave or strong if you feel you can't.  Have your pity-party if you need to.  What ever you need for it.   

    Good Luck tomorrow. I am sending the positives. If you need to ask questions while you are there tomorrow...We are here for you.
  • @KarenBemi

    First off I am sorry to meet you on this site and that you as well are going through this.  Thank you so much for the message all very good advice and it is very helpful and in some way gives me permission to just feel!! I have been trying so hard to be positive and brave and strong for my husband and daughter and sometimes this is hard when I just want to cry and feel sorry for myself.

    Where are you located?
  • Thank you for your comments, I want to keep fighting this awful cancer. I talked to the oncologist today & he said Zejula wouldn’t work for me with my history & weakened state. But he is going to order a hormone pill to try, that’s often given to breast cancer patients. It’s something at least & I’ll have blood work monitored, then a CT scan in a few months again. 
  • @suzieq it sucks that we are now in contact with so many amazing women because of this stupid disease. 

    I am in Whitby, I go to Lakeridge Oshawa - Durham Regional Cancer Centre.

    You definitely have permission to feel the feels.  I do not have children so I don't know how hard it that is to stay strong for them but....I would suggest, if you are ever having a bad day and you don't want to worry your family...kick them out for the day...tell them that it would be a good day for them to go for a long drive or a hike in the woods or something.  It is okay to tell them you just need a day to yourself.  They WILL understand.

    If you do ever need to reach out, we are here.  You can direct message any one of us if you would like, I can only speak to me personally, but I can give you my contact info.  

    Good luck today.  
  • @VernaM Good luck to you.  I do hope they find a treatment that will work for you to help you to continue your fight.

  • Fearless
    @VernaM I read your story with tears in my eyes for all you've been through. I'm so glad you found us and please know we're here to support you through your journey...even if only to be virtual shoulder to lean on.  I wish I could recommend a magic drug or solution but it sounds like most, if not all, current options have been considered.  But that's not say give up hope. Every single day they are coming up with something new....a therapy...a clinical trial. Often it's just timing.  I hope the hormone pill works. Wouldn't that be just wonderful.  And it's becoming more frequent to be exploring the effective of therapies used successful for some other purpose, only to find they are effective for OVC.  

    Your doctor's willingness to try the hormone pill is evidence he\she isn't about to give up.  I was lucky at my first recurrence two years ago that they had just launched a unique trial for Olaparib. That drug was previously approved as a maintenance treatment for survivors with advanced HGS, post recurrence chemo but who were BRCA positive.  Yet they gave me the drug to explore its effective on recurrence before chemo and on a non-BRCA survivor.  They were hoping to stabilize my recurrence and imagine their surprise when the two tumours shrunk by 75% in the first two months...and then remained stable at that level for almost two years.  It didn't cure me, but it buy me two more years without need for chemo or any other intervention and great quality of life during that period.  Right now I'm waiting to hear the final outcome of my trial, which ended in August even though I was able to continue with the drug after that. Will Olaparib be employed for those with my cancer profile in future...who knows.  But for two year it was a miracle for me.  Perhaps there will be a clinical trial out there for you.  Don't ever give up hope and be confident your medical team continue to explore those options on your behalf.  

    Please keep us posted and do reach out anytime we can be of help to you.  
  • Fearless
    @suzieq i"m sorry to hear of your diagnosis but glad you found us. I too was followed by chemo.  It's all pretty scary for sure but looks like you have a solid treatment plan.  I did recur  but several of my friends continue to remain in full remission, now going into their fifth years.  So lots of hope for you and your future.  

    If you haven't already, do go to the Ovarian Cancer Canada website.  There is a wealth of information on our disease; from survivor stories, to informative videos, to the new developments in treatment.  There is also a booklet I suggest you order, By Your Side. It is a very helpful in guiding you through your journey, from diagnosis to end of frontline treatment including chemo.  You can access the site at

    As for your chemo today, good luck.  For me it wasn't nearly as awful as I had expected, not that any of us enjoy it LOL.  The gals have given you good suggestions to prepare. For me, the two most important...bring your own spring water.  Hospital water tastes awful to me and it is important to hydrate as much as you can, before, during and after. And, open and honest communication with the chemo nurses. They are there not just to administer your chemo but to help make the experience as comfortable as possible so ensure you communicate how you're feeling, during and after. If you have any discomfort, they have many ways to ensure that is mitigated for you but they can't act if they don't know.  

    Good luck today.  Please reach out to our community as the need arises and do keep us posted on your progress. You may also want to join our weekly live online chat every Thursday at 1pm EST.  Just sign in and click on the Discussion Topic "Teal Thursday..." to engage. 

  • CountryLiving
    CountryLiving Community Champion
    Hi @jrh78 I too had endometriod cancer, stage 2 grade 2. In December 2019 I had 9 hour debulking surgery followed 6 weeks later with 3 treatments of chemo. I was told I show no evidence of disease from my CT scan after chemo and still at my 9 month post chemo appt i am NED! 
    I had terrible reactions to chemo and am hypersensitive to the drug. The first chemo I had terrible body rashes/hives, my skin peeled like a bad sunburn and I was in horrid pain in my legs. The second chemo I had I became anaphylactic, had trouble breathing, turned red in neck area so nurses stopped immediately. I was given more drugs to conteract the reaction and then continued on slowly with the chemo. The bone and muscle aches still continued. The third time after discussions with my oncologist they cut the drug back by 20% and infused it even slower than other times. That worked for me and I had no allergic reactions that sessions. My sessions started at 8:30 and I would leave around 3:30. The 3rd session was the best session and I had no other reactions. The nurses were aware of my reactions and were marvelous and put me at ease. 
    I had severe pain in both of my legs from chemo and even still have aches to this day. I am in a survivorship/transition group from the cancer hospital and it is helping me get through it and assuring me it can take time to heal my muscles. 
    My leg pain/aches are getting takes time. I do walk as often as I can however I cant seem to push myself like before as my legs just wont work. At first I could not walk the length of my driveway without knee and muscle pain and now I walk around 2 km every other day. I do quiqong and that has helped along with some exercises given to me by the transition team. 
    I wish you the best and hang in there. Chemo did its job and now I need to let my body heal from that. I have been told to give myself a year...I am 9 months out and so much better. Believe me it does get better.
    I am hoping your last chemo session went better. 
  • @jrh78.  I too had endometrioid carcinoma 2B (Oncologist said 3 because of the spread).  I was lucky and didn't have severe reactions to the treatment.  Sorry, you are having the issues.  I wish you Good luck on your treatments.  I hope they find a solution and that it works out well for you. 
  • pheteach20
    Hi. My name is Pat and I am 70 years old. I have been active and healthy my entire life. On December 26, 2020 I started feeling unwell. I lost my appetite, felt bloated, dry heaves, night sweats and some diarrhea. I went to get a COVID test on January 2 which came back negative on January 4. I phoned my family doctor to explain my symptoms and she said to assume I had COVID and had gotten a false negative test which she had experienced with other patients. I continued to feel very unwell and went for another COVID test on January 13 which also came back negative. On January 17 I called 911 to have the ambulance take me to the ER. After blood work, X-rays and CT scans the ER doctor came to tell me the diagnosis. Based on the abdominal/pelvis CT there is a large (13.7 x 10.6 x 9 cm) multiloculated complex cystic mass in the pelvis highly suspicious for malignancy. Probably of ovarian origin. There is diffuse complex free fluid throughout the peritoneal space and omentum suggesting malignant ascites and peritoneal/omental metastasis. This was a lot to take in and digest. The ER doctor did a CA-125 test and the number that came back on that is 273. The ER doctor said they would be referring me to our regional cancer centre. I was sent home. The next day I contacted my family doctor to get her in the loop and make sure I was indeed referred. She contacted the regional cancer centre and was told they needed a definitive diagnosis from a biopsy or fluid draw before I could get an appointment with them. She has put in an urgent request for both of those and forwarded the CA-125 results. It has been 4 weeks since this all began and it is very frustrating to be sitting anxiously awaiting to get these tests done. I feel like I’m a ticking time bomb. I am having difficulty eating but trying to get as much in as possible. I should also mention that my partner is already a patient with the regional cancer centre having had colon cancer surgery this past August. That surgery was very successful but the follow up chemotherapy was a disaster resulting in a 3 week hospital stay in October. Fortunately things have righted themselves. It was very scary. I am thankful to have found this group and be able to learn of other’s experiences and share mine. 
  • Hi Pat, I’m also a Pat and was diagnosed with Ovarian Cancer stage 3C in 2018. I’ve had surgery, then chemo, was in remission for 7 months then had a recurrence and was treated again with a course of chemotherapy. My husband died unexpectedly before the second chemo. This is all by way of saying I truly empathize with your feelings of anxiety and apprehension. It took three years of painful symptoms before I got the correct diagnosis. The wait time to see an oncologist and get the surgery seemed like forever, but I was somewhat reassured when I was told that a month or two wouldn’t make any difference. The cancer agency accepted me after an intravaginal ultrasound confirmed a mass and a CA-125 in the 300s.
    I wonder if contacting the hospital/attending doctor you saw in Emergency might help to speed things up since s/he can probably refer you more quickly for a biopsy. 
    In the meantime, please take good care of yourself. Everyone’s experience with treatment is different.   Some women have few if any side-effects;  with those that do (and I had some severe ones), there are professionals (pharmacologists, nurses, palliative care teams) that step in. 
    I won’t tell you not to worry; it’s normal for you to do that. I will tell you  to stay on this site because you’ll get feedback and information from other women that will help along the way, and you won’t feel so alone. If you haven’t already, request a copy of ‘By Your Side’ from ovarian It offers lots of information. 
    I wish you the very best. You’ll be in my thoughts, and if you’re in the Vancouver area, feel free to contact me personally (info for how is on this site). 
  • pheteach20
    Hi Pat. Thank you for your response. I appreciate hearing of your experience and hope you are doing well now. It is reassuring to know one is not alone. My partner has ordered a copy of ‘By Your Side’. Unfortunately I am in Ontario but thank you for the offer to contact you. 
  • Hi @pheteach20..I'm sorry to hear of your possible diagnosis...waiting is the hardest..I guess I was lucky enough if you want to say, that I got my fluid from my abdomen.drained and sent and a biopsy taken then when I was admitted with symptoms...not that i would skirt the system 😉..and please dont think I am minimizing how you are feeling but if your symptoms are worsening which they sound like,  your abdomen is painful, your feeling really bloated..your not eating,  maybe you need to go back to the ER for symptom management, fluid drainage and biopsy.  It will probably happen alot faster than what your GP is organizing..I get they need a definitive diagnosis but you also need to be comfortable with your symptoms and waiting now for 4 weeks doesnt seem acceptable..i hope things work out for you and you get your diagnosis and treatment you need..thinking of you..
  • Fearless
    Fearless Legacy
    edited January 2021
    @pheteach20 I'm so sorry to hear about your challenges, but so glad you found us. We are a community of over 600 across the country who share a common diagnosis and often common experiences and stories. You are definitely not alone as you navigate through the system and your journey.

    I'm glad to hear your Partner has acquired By Your Side. You'll find it very informative and a helpful guide from diagnosis to end of first-line treatment.  The Ovarian Cancer Canada website also holds a wealth of information on our disease, current treatments, survivor stories and much more. I encourage you to use it to inform yourself and your partner.  Over the past four years that I have been challenged with OVC myself, I've found knowledge to be one of my best defences and support.  

    As mentioned I am a survivor, going into my fifth year since original diagnosis of high grade serous OVC stage 3C. And we share a health system, given my initial diagnosis and treatment came from PMH in Toronto and now KGH in Kingston.  In both cases I have experienced exceptional care, knowledge, and skill.  

    Like you I went through and extended period of time with symptoms that were not immediately accepted as pointing to OVC. But it was a CT and a CA125 of close to 9000 that brought me to referral to PMH and a gynecological oncologist.  Surgery and then six rounds of chemo later I thought I had beaten the disease. However, a year and half later it returned.  At that point, knowing my body much better than in past, this recurrence was caught earlier and timing was such that I became a candidate for a clinical trial of oral medication that shrunk the cancer and maintained it in a stable state for almost two years....much longer the the trial coordinators had expected.  My cancer began growing again in November though and so right now I am back into a chemotherapy program and so far, so good again.  

    Yes, living with OVC for four years now is a bummer. But I can tell you that, assuming this is your diagnosis, there is so much hope for us now.  Only in recent years has there been so much progress in treatment.  More are being cured, more are living longer and better lives even with the cancer.

    I can only imagine your anxiety to get moving forward on diagnosis and treatment.  For me it was just a matter of sharing my scan to get the referral to PMH, so given your scan and CA results I'm actually surprised your local cancer center would be asking for more before agreeing to at least a consult.  That said, my own experience talking to women on this site, is that there is little consistency in processes from center to center even within our own province. But the key is getting to a gynecological oncologist and if that means, in your local cancer center, a biopsy or fluid assessment is necessary and working through your GP is not effective then do get proactive and not wait on the system. Advocating for yourself is often a means to ensure the right level of urgency is being applied to your situation.  The recommendations you've received about circling back through your emergency care is makes sense since they had committed to arranging for your referral.  With all due respect to your family doctor,  most are very unfamiliar with our disease and despite the best of intentions, may not have the where with all or contacts in order to accelerate the process for you.   

    Good luck with getting your referral  expedited and please keep us informed.  We are here for share experiences or just a "virtual" shoulder to lean on.  We do have a live chat every Thursday afternoon at 1pm EST and love to have you join us.  You need only to sign in to OVdialogue and click on the discussion topic Teal Thursday.... to enter the chat.  You might find some real time responses to your questions and concerns helpful.

     And PS, we share one other husband is also a colon cancer survivor....11 years now, thankfully.
  • @pheteach20 I'm so sorry for what you are going through. I can't believe how hard it seems to be for the cancer center to take on your case. I was found to have a mass in my abdomen,  just a bit bigger than yours, and was sent the same day to a bigger city for a CT scan, and then referred right away to a gynecological oncologist at the cancer center here in Calgary,  as soon as the ovary was showing to be attached to my right ovary.  It sounds like your family doctor is on your side and doing what she can to help. 

    Just wondering,  have they removed the mass? If not,  how's your pain level? Goodness. I was on a regimen of Tylenol and advil around the clock just to function before my surgery, the pain was so bad. I really hope it's not the same for you. 

    I really wish I had some good words of wisdom.  But, I don't. Just keep advocating for yourself.  Call the doctors until you get what you need!

    I met a man yesterday at the hospital while we both waited for CT scans. We had both discussed our new diagnoses.. well, he was still waiting for answers on his illness. Anyways,  as he was going in to have his CT scan done, he stopped and told me his mother in law had gotten cancer at 85 years old, and she beat it, so to not give up hope. It really meant a lot to me, that this stranger offered such words of encouragement.  I really hope you and your husband are successful at overcoming this terrible disease. ❤
  • jiselle16
    jiselle16 Community Champion
    @pheteach20 I am so sorry to hear what you are going through...I am hoping you can get a definitive diagnosis soon.  Both @Fearless - Vol Mod and @jrh78 have mentioned some great resources and advice. So glad you found this group and we will support you! I definitely will be sending you some positive vibes your way.  <3
  • CountryLiving
    CountryLiving Community Champion
    @pheteach20 I too am sorry for what you are dealing with. We ladies have all gone through similar stories. May I ask what centre you were referred to? I too live in Ontario. I was referred to a cancer centre when my CA125 was 250 and above normal like yours. I did not have any biopsy prior to going to the cancer centre and seeing an gyn oncologist surgeon. I had a ultrasound and then a CT scan that said similar reportings as yours.. a complex cyst highly suspicious for cancer. That report plus the highCA125 should be enough to be referred to a gyn oncologist. My family doctor referred me to my gyn urgently and within 2 weeks I saw her and she had already sent the referral to the cancer clinic. It was 2 weeks later I had my first appt at the cancer clinic with a gyn oncologist surgeon. I never had a biopsy as my oncologist surgeon would make that determination during surgery.  
    I agree with @Fearless - Vol Mod that family doctors may not be the best to expedite the process. Do you have a gyn that could refer you? Please keep advocating following up with the referral...I understood there was a protocol that once referral was received by cancer centre you should be seen within 2 weeks. Not sure if that is still in effect with covid. 
  • Hello ladies!   What a roller coaster ride this past year has been with a stage 3c ovarian cancer diagnosis the end of February 2020.  I've gone through eight rounds of chemo, a hysterectomy and debulking with positive results.  I'm having the regular three month follow ups and finding my anxiety level is difficult to deal with.  I received my Ca125 test results yesterday and welled up even though it was very good.  The foreboding is horrible.  Any advice on how to deal with this?  
  • Hi there,
    I was Also stage 3C ovarian cancer ( diagnosed Aug 9,2019) . I did the same basically, 4 rounds of treatment, hysterectomy ( debulking) then 2 more rounds and really successful results. I was back at work Feb 2020( then started to work from home because of Covid)  I’ve had 4 bloodwork follow ups and 2 CT scans and still all is good.  And I’m still think about it coming back ALL the time. So I have started to look at reaching out and joining chat groups and getting more support.  I think talking about it is a Good thing.  And I’m still really positive and that’s all I can do 

  • CountryLiving
    CountryLiving Community Champion
    Hi @Annie1950 and @jazzyjamie! I finished my treatments 11 months ago and have had the 3 month, 6 month, and 9 month followup with my year one coming up in March. I too am anxious before the appt worrying about the CA125 blood results. So far the results are good!! I understand it is totally normal and many ladies feel the same way. I do hear it gets better as time goes on. As for support groups I joined a womans support group and an ovarian support group and find them very helpful and supportive. The ladies are reassuring and someone always has great advice. I also try to go for a walk and have joined a tai chi class which I am really enjoying for strength, stretching and breathing control. I too am trying my best to stay positive. Sounds like you are both doing the best you can do. Try joining the dialogue on Thursday afternoon. Usually a few ladies so that makes it nice. Hang in there!!
  • Thank you so much! 
  • Hi @Annie1950 and @jazzyjamie...I too had stage 3c..diagnosed in may 2018...I had a total of 6 rounds of chemo and surgery a a year of Bevicizumab which finished Nov. 2019.  I have a checkup every 6 months now.  No CTs with my check ups...only if I become symptomatic again...I'm ok with that...I get nervous and scared with each checkup and still each time I get a new pain all I think of is that my cancer is back.  I think it's normal for people with cancer to think that way...its forever looming in the back of your mind.  I think it's important for us cancer survivors to have that support in whichever means is comfortable ....I utilized all the resources available to me to help me deal with my diagnosis, treatment and now as a chronic condition that I must live with. For me  I use a psychologist that's provided through my cancer centre, I joined group therapy also through the psychology centre, I participate with my local OV support group and joined Wellspring which is a non clinical centre for adult cancer patients that provides support and art and music therapy...and of course I stayed connected with friends and family..stayed open and honest...I couldn't have had better support...also I have had wonderful support from my oncology team...So for sure as @CountryLiving indicated lots of great suggestions for support...and we not only share similar cancer stories we share the same fears...
  • Thanks CountryLiving for your kind reassuring words.
  • Hi Bluebird, I've got to see what's available at PMH during Covid.  I'm sure they'll have some sort of support to minimize my scanxiety.  It's worse than the treatments!  You mentioned that you took Bevicizumab/Avastin for a year, was this prescribed in Canada?  I was told by my oncologist that Avastin wasn't suitable/available to me unless I was stage four.  Thanks for you support:)
  • @Annie1950, where are you receiving treatment?  Where is PMH? I'm in Edmonton and most of everything now is virtual including my psychologist, Wellspring and even our monthly support group which now is a western Canada Zoom support group. By all the comments from OV Dialogue, each province and centers within have approved different treatments.  I did receive 15 doses of the Bevacizumab after my chemo was completed.  I did have side effects from the drug but they subsided within a couple of months once my treatments were complete.  I am not sure why all treatments arent available to us everywhere in Canada but I believe it's a provincial thing.  It's too bad.  I think they should.  I hope you can find that  connection  for the support you need for your anxiety and wellness..the teal  sisters  here always have great ears, experiences and support that we can share as well and perhaps someone reading can connect you to those supports in your community...
  • Good morning Bluebird:)  I'm in the Greater Toronto Area and receiving treatment at Princess Margaret.  I'm four months away from my last chemo and doing well except for the anxiety.  I will check online to see what different cancer centres advise regarding avastin.  If it's available elsewhere and advisable I'll be going.  I'm finding this website to be a great resource even though it's only be a day since I've joined.