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 (mfallis@ovariancanada.org).
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 (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Let's get started! Come and introduce yourself
Comments
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Hello @Ro122 - how are you doing? - You can share your story here.... I was going through some of the earlier posts in review.
There have been more topics added to the site since you were on last. Hope you can join us on Tuesday's Live Chat at 7:00 PMCST0 -
Hello, I'm 53 years old from BC. I am married, no children. I am a physically very active person. But, I was diagnosed with stage 3C last Tuesday. The good thing is that I am scheduled to have surgery next week, but I cannot manage and handle my emotions very well right now. I would very appreciate it if anyone can give me any advices. Thank you very much.0
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@SunshineC Welcome to this amazing community. We are here for you. The early days after diagnosis are filled with such emotion. For me it was Oct 16th 2017 and I was angry, terrified to be alone and scares of what was to come. My only advice is take it one day at a time. Looking too far into the future is too scary. And surround yourself with things and people who bring you happiness. Put yourself first right now.
Keep reaching out and asking questions. Do you know what type you have?0 -
@red1976. Thank you so much for your reply. Much appreciated. I've been emotionally up and down for over one month starting from Ultrasound, CT scans until my recent diagnosis. It has been very tough especially for unknown period of time. Then now I was diagnosed, but I couldn't process the fact very well. I felt my anxiety building, but I feel a bit better by your response. I am happy that I was able to find this community. Thank you. I have a few questions; any good books to read to become positive, any specific diet (what to eat or not to eat), any comments for using natural path?0
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@SunshineC I don't follow any special diet to be honest. I just eat as healthy as I can...but truth be told, during chemo, I just eat what I tolerate and what makes me feel good.
I haven't read a book per se but I read books with inspirational quotes. My favorite is ...She stood in the storm, and when the wind did not blow her way, she adjusted her sails.
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Hi @SunshineC. Welcome to OVdialogue. I'm glad you have found this community and hope that you find some comfort, encouragement and hope from the women here. There are a lot of discussions that you may find helpful like Anxiety and Depression, Motivational Quotes and Books and Resources. I encourage you to have a look through the list of discussions - there are several pages of them. Ovarian Cancer Canada also has a guide called "By Your Side" for women diagnosed with ovarian cancer. There is a lot of information about the disease, treatment and how to cope with the diagnosis that you may find helpful. There is also a bibliography in the back with some books that you might like. You can order it here:
http://ovariancanada.org/living-with-ovarian-cancer/support-resources
I'm not sure what you mean by looking for information on the "natural path". Could you clarify this before I make any comment? Hope today is a little better than yesterday!1 -
Hi @Marilyn I am very happy to find this OVdialogue. Thank you. I felt sad and lonely, but I feel much much better by connecting people who have been going though a tough time. I didn't have much knowledge of natural path, but I went to a naturopathic health and cancer care centre a few days ago. I found the centre very helpful and encouraging. Still not sure how their treatments work, but I had a good feeling.0
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Hi @SunshineC I'm glad that you are finding some support and encouragement through the site and that you had a good experience at the clinic. One thing to be aware of regarding naturopathic remedies or supplements is that they can sometimes interfere with chemotherapy and cancer treatment so it is extremely important to tell your oncologist about anything you are taking or doing along these lines. Also that your naturopath is aware of what your oncologist is recommending too. Hope the surgery goes well! Let us know how you are doing.
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Hello, I am Judith from Ottawa, diagnosed in Sept. 2018 after many delays with 3c serous high grade fallopian. Standard course of coadjunctive chemo with interval debulking sugery has been my six month journey, and I am beginning to feel OK since my final cycle 3 weeks ago. ‘Rang the bell to the cheers of fellow patients and am taking a celebratory holiday with my husband in Mexico. I had so much support from my family and friends, and from the Cancer Foundation here in Ottawa. I do fear recurrence, and am waiting on the results of my genetic testing with guarded caution. I am a 64 yr old mother of two, and a registered nurse who needs to learn more about OV through sharing in this site. Cheers0
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Hello @jsullivan33 - welcome to the site and we are cheering for you also as you take that holiday! We hope you find lots of good support and access to resources here. Hope you can join us on Tuesdays at 7:00 PM CST for our live chat if you are available
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Hi All! Im Ali, 32, located in Toronto. Diagnosed with mucinous carcinoma (hoping stage 1 🙏🏼) on Jan 2 following the removal of a tumor that was thought to be benign. I’ve just undergone, earlier this month surgery to remove the rest of the ovary/tube, appendix among other things, but grateful that they felt it ok to leave my other ovary/ uterus. They continue to conduct some exploratory procedures (as itself a hard to find cancer as I understand it), but I am not expecting to undergo chemo at this time.
Very happy to find this discussion thread. Im not sure how it eluded prior searches but happy to have others in Canada to relate to in this crazy journey!0 -
Hello @afab and welcome to the site! We are hoping all goes well for you too. Please take a read around the site as you will see lots of topics (we are at 3 pages now and some have multiple comments in them).
You can also post your story if you wish on your profile page.
Hoping you can connect with your local in person support group as well if you need to.
And if you still the "By your Side" support manual, you can find it on the main site.
Welcome to our group!0 -
Hello All!
I am a 27 year survivor - stage 3a at the age of 22.
Although some days it may not seem possible - there is hope for recovery and renewal.
Sending Blessings and strength to all my sista's out there!3 -
Hello @JoJo - welcome to the site and thank you for joining us.... I like that recovery and renewal line!0
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Hi Everyone...I am 38 years old diagnosed of stage111c granulosa cell tumor of ovarian cancer. I had my surgery last March 9. Before my surgery all my blood works, tumor marker and CA125, CA 19-9 was normal but my doctors told me that the right ovarian mass that I have might be cancer. Difficult to beleive because all the test was normal but as they explain to me now...no way to describe my cancer before surgery. Surgery is the only way so that they will know what it is. I had an appointment to medical oncologist but didnt decide yet what treatment I need to undergo because it is a rare type of cancer. Hormonal therapy is not an option because it will have bad side effect in the long run.
I will going to have may CT Scan, March 19 and hoping they able to took out everything during surgery.
Looking for someone have a same diagnosis I had.2 -
Hi @JoJo Welcome to OVdialogue! What an amazing story to be a 27 year survivor! I'm so glad you found our community. I'm sure you will bring hope to many other women! Have you been connected to us before?0
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Hi @emsneil. Welcome to OVdialogue! It sounds like your diagnosis was quite a shock since all your tests were normal! Yes, granulosa cell ovarian cancer is more rare but there are a couple of other women in the community who have this similar diagnosis. Perhaps they may have some things to say that will be helpful for you. @terrylee @K_BrancOV ?1
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@Flowergirl: how can i join in live chat?0
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we are on right now!
Check out the Teal Tuesdays topic!0 -
Hi my name is Joanne Gabrielle and I was diagnosed with high serous stage 2c ovarian cancer on September 8 2017. I finished my treatments on February 22, 2018 and my CT scan came clear on March 14. I have read the By My Side book and I have found it very useful. The one section I noticed in the book on after care and follow up of this disease indicates that for the first year a person should be followed up basically every three or four months. . My Gynaecologist-oncologist operated me in October and then left a message on my answering machine telling me I was BRcA 2 positive and sent me a letter with my CT scan results and booked me an appointment for September/2019 for a pelvic examination. She believes being tested with various tests such as CA 125 and follow up CT scans just creates more anxiety and that I should go live my life.
I feel that not being tested more especially the first few years of this kind of cancer creates anxieties as well especially when I basically had no symptoms when I was initially diagnosed. A Ca 125 test picked up my cancer. I know every specialist has there on way of doing things. I would like to know from you all how you are monitored by your specialists? I am new to this and i would also like to know if there is a standard protocol on ovarian cancer testing? ThankYou!
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I meant a standard on followup care!1
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Hello @Gabrielle
Welcome to the site. You will find some good support here. That is good news on your CT!
Looking for some confirmation on the above- interesting regarding the way they informed you about BRCA status.
Did you have genetic counselling and testing or was it your tumor that had the status, or both?
And is that the date, nothing until 2019?0 -
I had no genetic counseling. When I went for my prepop appointment on September 28/17 I informed the specialist of my family history. 2 of my cousins tested positive for BRCA 2.One of them died from breast cancer. I was operated on October 19/2017.I was sent for a blood test to see if I carried the mutation On my phone message, I was told that this information would be forwarded to my family doctor and that I would get a letter indicating that I was BRCA positive and that I should inform my siblings. I photocopied that letter and gave it my sisters. My next appointment is September/2019. I cannot tell you if my tumor was sent for analysis but I was sent for blood work. I did see my specialist before my first chemo which took place in Edmonton.0
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I understand that as of now my CT Scan came clear and I probably do not need to see my specialist. But I feel with respect to mybBRCA 2 status, I should be further discussing this with someone. I assumed that the specialist would put me in contact directly with a genetic counsellor
Thank You for welcoming me and your input!
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Yes, given the status, it would be nice for you to have genetic counselling access.
I suppose it depends on your DR and your province in regards to monitoring - I'll private message you some more details.
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@Gabrielle. I'm very sorry to read of your experiences this far with your medical team. I'm glad you're informing yourself so that you will know what to ask of them for yourself. All provinces can have different protocols, I'd like to share how it's been for me in Manitoba. May 2016 I was diagnosed stage 3C ovarian high grade serous. Did three chemo treatments, then debulking surgery, followed by 18 weekly dose dense chemo treatments. Completed Feb 2017. I was just diagnosed with recurrence, so about 13 months NED no evidence of disease. I'll finally be starting treatment for it in the next few weeks.
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@Gabrielle . After initial treatments were over in Feb 2017, I was scheduled every three months to see one of the gyne oncologists on our team. They do a physical bimanual exam only. No blood work, no CT scans. If concerns arise at any point, they could then order tests to investigate further. I didn't like this idea at first, but grew to understand their thinking around it. Ca125 unreliable, test/scan anxiety, unnecessary testing. I adapted and became ok with the 3 month physical exams (this is the plan for our first 2-3 years). Still and always will have pre exam and/or pre test/scan anxiety.0
