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  • @jiselle16 - I understand what you are saying about the life stages so well! My now husband and I were just dating when I was diagnosed, so we didn't even have the opportunity to start seriously talking through the starting a family part of the plan before it was all thrown askew. 
  • MarilynMarilyn ✭✭ ✭✭
    Hi @jemgirljeri and @JaneWest  !  Welcome to both of you and so great that you are both in Winnipeg and will be able to connect in person at the Walk!  @Flowergirl Tam is also from Winnipeg and will be handing out flyers for OVdialogue!  Will look forward to hearing all about it!
  • MarilynMarilyn ✭✭ ✭✭
    @jiselle16 and @Sunflower Hi and Welcome! Great to have you on the site and I think you will find other younger women who share some of the same experiences that you are going through.  You might want to connect with @BrittMK @AmandaRoseRebs and/or read their introductions.  Sunflower, great to hear that you have connected with Elly Mayday and Young Adult Cancer Canada.  For those who don't know Elly Mayday, she is a well known Canadian plus size model diagnosed with ovarian cancer at age 25 and has just gone through a recurrence.  She is a supporter of Ovarian Cancer Canada and recently was presented with the Ovarian Cancer Canada Virginia Greene Award at the Love Her in Vancouver.  See http://ovariancanada.org/stories-and-media/feature-stories/2017/model-elly-mayday-recognized-for-raising-awareness

    It must be tough to deal with  menopause at such a young age.  And a difficult juxtaposition to your friends having babies!  How do you handle that?  Do you have any tips for each other?  Do you have any stock phrases you have come up with if asked about having children?

  • Honestly @Marilyn I still struggle sometimes with how to answer that question... I used to get really awkward about it, but I've learned since to accept that it is what it is. I usually deflect now with the fact that I have a ton of 'kids' through my involvement with our local marching band (one even calls me her adopted mother) which changes the subject with someone new that may not know. I don't want them to feel bad if they honestly didn't know but at the same time it is my reality and I don't need to apologize for that. 
  • Hi everyone, I haven't had time to read all the comments, but I'm really excited about getting to chat with everyone. It's been 5 years since my diagnosis this month, so I feel like I have had some time to digest the whole experience and offer some advice for newbies - but I'm still learning too :)
  • MarilynMarilyn ✭✭ ✭✭
    Hi @resilient1 Welcome to the community!  A recurrence after 9 years must have been a shock!  I can understand how being involved in advocacy can help when dealing with this disease.  I hear from a lot of women who get involved with this cause that they don't want the same thing to happen to someone else - I'm not sure if you feel this way too? How do you find your involvement empowering? Thanks for what you are doing and connecting with other women through OVdialogue.
  • MarilynMarilyn ✭✭ ✭✭
    Hi @Amanda  Welcome!  5 years this month since your diagnosis - Is this a milestone for you?  I'm sure you will have some great insights to share with other women as well as receiving some support for yourself!  Good to have you on board!
  • 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.  
  • Hi everyone. I am another Pegger (Winnipeg). Is there something in the water here?  I was diagnosed with Stage III, high-grade serous cancer in November, 2015. Had surgery - hysterectomy, appendectomy, and partial removal of omentum, followed by 18 weeks of dose-dense chemo. I requested that my CA125 levels be monitored during follow-up and found it to be rising in 2017. A CT scan and subsequent PET scan revealed a recurrence, which was isolated in one spot and last night I was released from hospital after my secondary debulking surgery. I was told that the tumor was completely removed. I will now undergo more chemo, but I am more hopeful about my future. I am getting some nice TLC from my hubby and am recovering from the surgery.
  • FlowergirlFlowergirl Mod Vol Mod Vol
    Hello Everyone, You can call me Tam. I am so thankful we have this resource available to us

  • FlowergirlFlowergirl Mod Vol Mod Vol
    welcome to the site and thank you for sharing @Sunflower, @resilient1, @Amanda, @Falcons and @deebus52
  • FlowergirlFlowergirl Mod Vol Mod Vol
  • Tricia415 said:
    Hello all, my name is Tricia, I live in Victoria, BC. I was first diagnosed with Fallopian Tube stage 2b high grade serous carcinoma September 11, 2012 age 43.  Five year anniversary on Monday.   I have been in treatment basically the whole time. I have just started my 7th chemotherapy protocol.  I will be at our walk in Victoria on Sunday, and have gathered a very large group to walk with me.

  • Hi Everyone,  My name is Marilyn and I just recently moved to BC and am staying in Victoria while we wait for our condo in Sidney to be finished.  I was diagnosed with Stage 3 high serous in November 2013.  After surgery, I had regular chemo interspersed with Peritoneal chemo which I could only handle for 3 rounds.  My second and third reoccurrences were both treated with chemo.....the last finished in May this year.  It seems my remissions are getting shorter and shorter because I already "feel" that things aren't quite right.  I was so happy to take part in the Walk of Hope yesterday accompanied by my family and friends.
    There  is a certain comfort in seeing the other survivors out for the Walk too.  You don't feel so alone because even though I have a very supportive partner, family and friends, no one except another survivor knows how you really feel.  So here's to fighting the fight!????????
  • @jiselle16 I was in the same boat as you (only at 42) as I was trying to get pregnant when I was diagnosed as well as a close cousin was pregnant at the same time which was really hard on me. Avoided her and all the showers which not all family members understood why but did to save my sanity.   Menopause hasn't been fun, with the hot flashes and my face has totally broken out which is hard on the self-esteem.

    @Jackie  I had uterine and ovarian cancer as well, before the hysterectomy, I knew about the uterine cancer due to a previous surgery.  I was mentally prepared for that treatment as I had researched it so when they told me about the ovarian cancer it was a big shock. 

    @kastoyles I am finding the hysterectomy a cursing and a blessing, but my husband always says that he'd rather have me healthy than not.  I've also always had trouble sleeping and more since menopause has started.
  • Hi ladies. My name is Terry, I'm from rural Manitoba and my journey began June 2016 when I started noticing a persistent bloating and firmness in my lower abdomen. I had my annual physical coming up the next month so I decided to address it then. My NP sent me for an ultrasound within the week which found a 14 x 10 cm "cyst" on one of my ovaries. I was referred to a gynecologist but a week before my appointment I started having severe pain and ended up on an OR table a few days later. Fast forward 3 weeks later I was diagnosed with a granulosa cell tumour and was referred to cancer care. They did a endometrial biopsy which came back clear so no chemo or radiation was needed. I'm coming up on my 1 year anniversary but I have an ultrasound in a few weeks just to be sure nothing has changed.

    I'm so glad I found this community. I have been looking for a place to talk with people who understand. Living outside of Winnipeg, there aren't that many resources available to me.
  • FlowergirlFlowergirl Mod Vol Mod Vol
    Welcome and thank you for sharing your stories @Tricia415 @Adnamarama @mcbar @terrylee and @KarenL - glad you have found your way to the site!
  • Hi everyone. I'm Alison from Dorchester Ontario. I was diagnosed with stage 4 in 2012 (surgery chemo yada yada yada). I had bilateral mastectomies in 2014 after learning I was BRCA1 positive. I had a recurrence in 2016 requiring brutal surgery (ugh). I'm now 52, working full time and feeing like a million bucks. Life is good. 
  • Hi! My name is Susan and I live in Kitchener, Ont.  I was diagnosed in Feb 2016 with Stage 4 ovarian cancer with plural effusions. I had debulking chemo for 9 weeks then surgery then another 9 weeks of chemo. At Christmas I was in remission. Sadly my cancer came back in May and I'm almost finished my treatment for this 1st recurrence. I feel pretty confident that I've beat this back again!! I have not met one other woman at my cancer center that has ovarian cancer. It can be lonely dealing with this dreadful disease on your own. Looking forward to connecting with other women going through the same thing. 
  • I'm glad you found this community @Quiltmama , you need to find others who have been in similar circumstances. I like how you are feeling confident at this point!! way to go!
  • Hi, I am new to this.  I was reading the stories  and I hope we can all help each other get better day by day.

    Hello everyone, I am 48 years old and I live in Toronto, with my husband, and my cat. My emotions for the last couple of months have been up and down. I have stage 4 endometriosis and was seeing a naturopath about doing a colonic. It was suggested that I get an ultrasound which was done on July 11, 2017. I then received a call from my family doctor and wanted to see both is and it was shocking to hear that there was a mass with blood flow and the doctor referred me to Princess Margaret Hospital and they also did a CA-125 test. The CA-125 test came back with a low number and the Doctor who saw the CT scan said he was 90% sure it was not cancer. Well, I had the surgery on September 6, 2017 and it was a very long surgery and they did find cancer. He said it was deep inside the mass on my right ovary and I had a total hysterectomy and they also removed lymph nodes. I was overnight in hospital and now back home trying to recover - I also have scoliosis and it makes getting in and out of bed or chairs more difficult. I am to see the doctor on September 28, 2017 to get the results but he believes that I am a true stage 1. I am trying to take it day by day but I cannot stop thinking about chemo. I don't want to throw up and feel sick for weeks. I am scared. My husband did play the webinar video of Ovarian Cancer 101 with Dr Altman that had lots of information but I guess I will have to wait for the followup visit with the Doctor on September 28, 2017 to see what the plan will be.
  • MarilynMarilyn ✭✭ ✭✭
    @PrincessFiona Hi and Welcome to OVdialogue!  Wow, saying that you feel like a million bucks, life is good and working full time after a stage 4 diagnosis, double mastectomy and recurrence is pretty amazing!!! Congratulations and so glad to hear it.  Great to have you participate in this new community.  I think you will have a lot to share with everyone.  How did you hear about it?  By the way - love your username smile:
  • MarilynMarilyn ✭✭ ✭✭
    @PrincessFiona You might want to connect with @birdee who also indicated that she is BRCA positive
  • MarilynMarilyn ✭✭ ✭✭
    Hi @kittycat.  Welcome to OVdialogue.  I have read your story and see that you have just been through surgery and waiting for your results.  What a shock all this must be!  Not to mention your added difficulty because of the scoliosis and not sure if you are going to have chemo.  I'm sorry to hear about all this.  You connected into the right place as you are not alone and there are women here who have been in your shoes and ready to offer their insights and help. Reaction to chemo is different for each woman so if you have to have chemo, you may find that you tolerate it quite well.  It is hard to predict but it may not be as bad as you are imagining it might be.

    Regarding how to navigate in OVdialogue, if you have questions about anxiety you can post a comment in that discussion and ask your question there. Since there is no specific discussion about chemo, you could start a new discussion if you like.  

    Ovarian Cancer Canada has resources for you like a guide called By Your Side.  This is a book for women recently diagnosed with ovarian cancer that will provide information about a lot of different issues related to your diagnosis.  I am happy to send one to you free of charge if you send me your mailing address.  We also have other resources that you may be interested in.  I am happy to talk to you on the telephone and answer any other questions you might have. 

    I am so glad that you found OVdialogue and have joined the community.  There are a few other women who were diagnosed at stage 1 so once you know what is happening with you, they may be people you would like to connect with.  @KarenL @kastoyles  @jemgirljeri  @jiselle16
  • Thank you @Marilyn for the connection. I would love to talk with you @kittycat if interested. We have many similar experiences in our journeys (and differences as well). But I also was stage 4 endo and stage 1C ovarian cancer on my right ovary and Fallopian tube. The cyst burst inside of me during surgery which is what makes it a "C".

    Please feel free to private message me if you'd like to talk.
  • Hi,
    I am another Marilyn.  I am a little different here at the OVdialogue.  I am not newly diagnosed but have joined for a couple of reasons.  I was diagnosed at the age of 11 in 1976.  That makes me a 41 year survivor. At that time, the Doctors told my parents that I was the only one under age 21 in Canada.  They consulted with Doctors in New York to develop my treatment plan. I had surgery, 6 weeks of radiation and 2 years of chemotherapy.  Luckily treatments have improved but survival rates have not.  I became involved with the Walk of Hope 4 years ago in Peterborough and have been the Chair for 2 years.  As a survivor of Childhood Cancer I am always trying to find out more about long term effects because I think it is important to be aware of all of the things to be looking for.  I also am exploring genetic screening.  Although I have had a full hysterectomy about 10 years ago, it might be good to know if I have the genetic markers because of other cancers such as breast cancer.  I have two cousins who have had Ovarian Cancer and my sister had Uterine Cancer.  It also might be good information to pass on to my niece and her daughters.  As the Walk Chair, I also would like to hear ideas about the best ways that I can support women in my community who are faced with the disease right now.  I am interested in resources and we are considering an area face to face support group.  So, I am here to explore many things.
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