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My name is Colleen and I am newly diagnosed with ovarian cancer.   I had my fallopian tubes/ ovaries removed in late October and the initial pathology during surgery came back clear.    Unfortunately, I have since learned that the full pathology report has shown I do have cancer.  I will now need to undergo a full hysterectomy, most likely end of December or first week of January.      I was so happy to find this site where I can learn from others, ask questions and be vulnerable.   Thank you

Hello @ColleenNK and welcome to OVdialogue. I'm sorry to hear of your confirmed cancer diagnosis. You have however found a great resource in the Teal Warriors on this site. They have a wealth of knowledge and information to share so please ask away. Questions are always welcome. You can also search for past posts using the search bar at the top e.g., hysterectomy. I know I started there when I first joined the site and it helped me gain a lot of information from reading the experiences and advise that had come before me. You are of course always welcome to just ask a question. There are a lot of people who have gone through surgery similar to yours who could I'm sure answer questions you may have.

From the pathology report, did they tell you the kind of ovarian cancer and stage? For instance I'm high grade serous carcinoma, Stage 3C. Did them mention whether you would require any chemotherapy post surgery? Perhaps they are waiting for the surgery first to determine any next steps, if any are needed.

Please let us know how we can help you as you start your journey. We are a good group of listeners and sharers. 

#Supportandencouragement 

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Hi   Thanks for responding and your compassion.   I have not seen the report but do have a doctors appt next week and am hoping to learn more.   If I am remembering correctly they will determine stage and type after my next surgery.   I am sure you can imagine it was hard to process the original diagnosis over the phone.

I will definitely look at some of the posts and will reach out.   

Thanks again

@ColleenNK ... I hope the appointment provides you with some clarity this week. Yes any diagnosis is hard to process however I can only imagine what it was like receiving the news over the phone. You are likely going to get a lot of information over the coming timeframe. Try to take notes and if possible, have someone with you as you may not "hear" everything. That second set of ears can be helpful. We are all here for you. 🩵

#Supportandencouragement

Welcome to this platform @ColleenNK

I'm unsure where you're located, but even if you're not in Alberta, I use an app at all of my appointments and you can download for free.  it's called MyCareConversations and you just ask the person you're with if it's OK to record (I've never had any oncologist or nurse say no) and then you can record the conversation so you can go back to listen to it.

I found this super helpful because at my post-surgery follow-up I saw 2 doctors, a chemo nurse and then the cancer centre pharmacist....so I recorded all 4 of those conversations and went back to listen to them after because I found it so overwhelming with all the information they were telling me.  It goes very quickly once you're diagnosed with a treatment plan etc.
I was diagnosed with Clear Cell Ovarian Cancer (a rare one) Stage 3A.
I hope you join some of the Teal Tea's as well - they can be helpful and very informative.  They are under the Events tab.
Take Care

@DiamondGoddessYYC ... that is a very cool APP to know about. Thank you for sharing. I've made a note for future reference.

#Supportandencouragement

Thanks so much, I have downloaded the app.   I have found out I am diagnosed with (unstaged) endometrioid grade 3 MMR proficient left ovarian cancer.   My doctor is optimistic it was caught early.   Fingers crossed.

@ColleenNK ... yes fingers are crossed it was caught early. You are now on the way to getting more information which is great as it is all helpful as your treatment plan unfoldsd. Do you have a date for your surgery? Please keep us posted on how you progress over the coming weeks.

#Supportandencouragement

@brendalee I was diagnosed Feb 2024 HGSC stage 3C BRCA 2 positive. I've been on Lynparza since Aug 2024. My full story is in my Bio for full details. 
Hang in there!!!

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@ColleenNK welcome to the site.  You will find great support here.  Hopefully things were found early for you, and your surgery is successful.  Keep us updated on your progress.🩵👊

Thank you.

Hello Colleen,

With you in spirit as my (adoptive) mother also had ovarian cancer. 

Just wondering if you have any tips, re: how to find an oncology gynecologist in Canada? Are you happy with yours? 

Have you read the Cancer Conqueror? Mom and I really found the book inspirational. Feel free to reach out…

sending hugs, 

Jennifer 

Hi @JJS I'm not sure if this is your first post in the forum however if it is, welcome. You've found a great source of inspiration and knowledge in the Teal Warriors in this site. If they've experienced something, they are willing to share. If they haven't, they are willing to learn from others. Thank you for the suggested read in "Cancer Conqueror". I've captured that in my resources list for future reference.

You asked about finding an oncology gynecologist in Canada. I was referred to mine via my family doctor. I'm not an expert on how it works in other provinces (I'm in Ontario), however my understanding is that because they are specialists, you need a referral from your GP or another specialist. Would you be comfortable sharing what province you are in? That may help others in this forum in guiding you with a response.

#Introductions 

Thanks so much for your message. 

I am in BC, but currently moving back to Ontario as our home is in Toronto and I would like to go home for treatments.

To this end any doctor recommendations in Ontario would be greatly appreciated. Thanks in advance. 

The last post was my very first post! I have recently been diagnosed with endometrial cancer, or pre-endometrial cancer. 

My gynecologist can't seem to confirm if it is concurrent cancer, or just pre-cancer (?).

I asked her for a hysterescopy and / or D&C to have a larger tissue sample, and my gynecologist just avoids the topic.

Please note that my gynecologist is not an oncology gynecologist, but is an expert in obstetrics.

Despite this, she wants to do a complete hysterectomy! And yet she cannot even ascertain whether it is precancerous or endometrium cancer (?).

Just feeling overwhelmed as I am a new PR to Canada, and not very familiar with how to navigate the medical system. 

My current GP in BC says that BC Cancer is a "Black hole," and that we will

never hear back from

them

(which is pretty scary), so am

reaching out here for help in this community for doctor oncology gynecologist recommendations? 

Thank you in advance for everyone's help! 

Apparently a precancerous (?) diagnosis in endometrial cancer indicates a concurrent underlying endometrial cancer in 30% to 50% of cases (or something like this), so there is a lot of ambiguity.

Appreciate everyone's help,

Jennifer 

Hi @JJS I am sorry to hear of your diagnosis and the challenges you are having with your medical team. While I not an expert in this area, I did a quick google search and it sounds like your GP and/or your specialist can make a referral on your behalf to a specialist in another province. There are a number of places you could request a referral to however the two that come to mind are Princess Margaret Hospital (PMH) and Juravinski Cancer Centre (Hamilton). If you google both you will find sections that detail the process your doctor would take for a referral. When my GP did my referral I was assigned to a member of the PMH gynecological oncology team. I didn't choose/request a specific doctor however I don't know whether that is an option. I just wanted you to know the process I went through. There may be other places for referral however those are two I'm most familiar with. Some others in this forum may have other referral suggestions.

I do know there are a few individuals in this forum who live in BC and have experience with the oncology/gynecology system there. Perhaps they can lend some advise and counsel to you in terms of their experience navigating the system. @Meinvan @LeslieA if you have anything to share please feel free.

I'm also tagging @BrendaSan who I believe is an endometrial cancer Teal Warrior who may be a good source of information for you (I hope you don't mind the tag @BrendaSan).

If you haven't already, go to the Ovarian Cancer Canada (OCC) website and request a copy of the Resource Guide which is an excellent source of information. I've put the link below. In addition you may benefit from participation in an upcoming Teal Tea where you can share and learn from other Teal Sisters in a Zoom environment. Their are two upcoming (Dec 16th and 17th). The information is on the front page of the OVdialogue site but let me know if you can't find it and I'll send you the link.  

Understanding ovarian cancer - Ovarian Cancer Canada

I hope some of this information will help Jennifer. Please continue to post and ask questions. The Teal Warriors in this site are such an amazing support group and hold a lot of knowledge that they willingly share. We hope we can be of support to you.

#Introductions #Supportandencouragement 

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Hi @JJS (and thanks for the tag @Alwayslearning). My path to getting a  gynecological oncologist was by referral. I went to my GP, who did an ultrasound, and then sent me to my gynecologist, who referred me to my gynecological oncologist after an endometrial biopsy showed hyperplasia (pre-cancer) and well-differentiated cancer.  It is not unusual to see both, as pre-cancerous cells can develop into cancer. 

I would ask for a referral to a gynecological oncologist before you make decisions about surgery. If you know for certain there is cancer before surgery, it will influence how the procedure is done and what steps are taken to prevent spread during surgery. 

If you are being treated in Toronto, the Princess Margaret is one of the best hospitals in the country, and I might start by asking for a referral there. 

The somewhat anxiety-reducing news about endometrial cancer is that if it is endometrioid adenocarcinoma, it is often very slow growing, so waiting a few weeks is not likely to change the status of your condition. 

I don't have direct experience with BC Cancer, but I can tell you that BC Cancer teams are conducting some of the most interesting research in endometrial cancer, so from a diagnosis perspective, you should be in good hands. 

Feel free to ask questions. I was diagnosed in 2023, have had surgery, chemo, and radiation, and am now NED since Nov 2024. 

Hi JJS, I found trying to navigate the medical system daunting in the beginning. Once I was diagnosed with OC by an internist my GP referred me to BCCA and although it did take a few weeks they requested my medical files. Then I received a call from the gynecological surgeons office with a lists of tests to have, blood typing, full CBC, Disease Markers, X-rays, an anesthesiologist meeting etc. It took about 6 weeks. Once they performed the surgery and had the biopsy and stage I was referred to a gynecological oncologist to review treatment options. That was 3.5 years ago and I have been given excellent care throughout my journey. The most important thing that I have learned is self advocacy. Wishing you all the best as you embark on your health journey.

Lauren xx

Hi @ColleenNK just checking in to see how you are doing? Not sure if you have been having appointments and gathering information. Please know that you have a team of supporters behind you. If you have any questions are/or need a place to seek strength, please let us know. We are here for you. 🩵🩵

#Supportandencouragement

Hi 

Thanks so very much for reaching out.   This has all been a bit overwhelming even though it appears I may have been caught early (thankfully).   I will need to have my next surgery before they can do any staging.   I am cautiously optimistic as they did not find anything new in my last CT but am keeping in mind it was not found on my first CT.   (what a roller coaster)

I was thinking that I had joined this amazing resource too early without really knowing my road ahead.   However, I do keep getting pulled back by words of encouragement and support.

I so, so appreciate you reaching out.

@ColleenNK I will pray that they did indeed catch it early. 🙏 When you need us, we will be here.🩵

#Supportandencouragement