New here.. just diagnosed with high grade serous OC. Any Ontario ladies here?

collegal

Hi:

My name is Shannon.  I’m 40 years old.  I’ve just been given the devastating news that I have high grade serous Fallopian tube / ovarian cancer.  

Im waiting for an appointment with a oncologist to stage this, and put a treatment plan in place.  

Im heading to the London cancer center in London, Ontario.  I’d love to connect with any other people that have been treated there.  My doctor will be Dr. Prefontaine. 

Devastated to be part of the “club”, but very happy to have found this site.  

Shannon

Flowergirl

Hello @collegal - sorry you are dealing with this disease and hope you are at least feeling ok today.
If you were not given a copy of By Your Side, it is an excellent resource  and you can order it here free:
https://ovariancanada.org/living-with-ovarian-cancer/support-resources
Will private message you as well.

Linda

Hi @collegal Sorry to hear your news, and hoping you have an appointment soon so that you can have all your questions answered. I live in Winona, Ontario (near Niagara) and I attend Princess Margaret in Toronto (since 2015)  You are not alone, and your Teal Sisters are here to offer support.  Channeling hugs to you ((())) ☀️🦋

collegal

Hi @Linda

 Thank you for your words of support. I actually met with my oncologist in London yesterday, and he’s hopefully optimistic that the two tumors contained in my fallopian tube have not spread yet. We have to do a CAT scan, and a debulking surgery to be sure, but because my initial hysterectomy surgery showed no evidence of cancer in my one ovary and uterus, he said theres a great chance it hasn’t spread beyond the pelvic region. I will have to do a round of chemotherapy to get any rogue cells that might be floating around in there, but I took that is great news! Now I just have to get past The scan and next surgery, and I might have a shot at beating this! I feel like I can breathe for the first time in 2 weeks. 

kastoyles

Hello @collegal and you have found the right place for support.

I was diagnosed with stage 1 clear cell in Jan 2016. The tumour had breached and a course of chemotherapy was recommended to get those rogue cells that may have escaped through the breach. The diagnosis and treatment were scary but I made it through - and you will too! We're all rooting for you!

collegal

Hi @kastoyles, thank you for sharing your story.  I pray mine will turn out just like yours. May I ask .. after your chemo session, did you do any additional follow ups or scans? Do you go annually for a check for recurrence?

Flowergirl

thanks for sharing @collegal and hoping the best for you!

kastoyles

@collegal ; - yes I do have check ups. For the first year I went every three months. Year two - every four months and for the next three years - every six months. I'll be going for my second six month check up in April. So far I'm NED and my CA125 is hovering between 8 and 10.

judek

What does “breached” mean?

kastoyles

@judek ; - breached means there was a "hole"  or passageway from through the tumour to the outside

laura50

Hi Shannon
I live in London, ON and also have been diagnosed with HGOC, not sure what stage as I’m doing chemo first but I know it’s advanced as it has already spread. I just met your doctor this week as my oncologist was on holidays and he covered for her. I think they all seem very caring and knowledgeable. So far, I’ve had 2 chemo treatments. I just finished my second on Wednesday. If you have any questions, please ask. I’m very new to this, so I may not be too much help though...lol

collegal

Hi @laura50. Nice to meet you!  I just had my third chemo this past Monday. Today is a down day for me, but I usually pickup in a day or two.  Are you doing Chemo in London? Will you be having surgery? I’m doing my chemos at the Chatham hospital, which is a satellite office of London. Dr. Welsh is my oncologist, he’s been wonderful so far.  I’d love to chat with you. Feel free to drop me a line anytime.  

laura50

Hi Shannon
That’s great news that your cancer may be contained.  I do live in London so I’m doing my treatments at the Cancer Clinic there. I’m seeing Dr. Bertrand there, she’s been awesome.It’s great that they have satellite sites so that you don’t have to travel. I’m starting with 3 rounds of chemo, 21 days apart, surgery (debulking- sounds great) then 3 more rounds of chemo. My cancer had already spread throughout my peritoneum so I think the plan is to see if chemo helps shrink the tumours before surgery. I had my second chemo a couple of days ago, I’m doing ok with it but this time my taste buds seem to be off, also I get that bone pain, hopefully it goes away fast. Just curious did you have any symptoms? Mine was found while I was having a totally different test so the diagnosis came out of nowhere. I’m still reeling with my new reality! I can’t believe I am so sick, it’s been totally scary. 

collegal

I’m glad you like your Dr, London has some great ones for sure.   The only symptom I had was pain on my one side from what they thought was an ovarian cyst. I was having a hysterectomy due to prolapse issues, and my doctor thought we’d remove the cyst on the ovary while he was in there. Coming out of surgery everything looked great, there was no indication of cancer. Then the pathology report came back that said inside of my fallopian tube were two tumors, high-grade. I was completely shocked! Who would think of ovarian cancer at 41.   I was sent to London at this point, and scheduled for my second surgery where Dr. PreFontaine went back and took my other ovary and my omentum. I am stage 1C, because the tumor was protruding out the end of the fallopian tube and he believes could have spread Cells throughout the entire area. Six rounds of chemo was also ordered because it was high-grade serious. Have you had genetic testing done? I was told as soon as your high-grade serious, you qualify. I’ve had mine done in London but I’m waiting on the results.   I was having some pain last week and had an ultrasound done which showed something suspicious where my left ovary should be. I’m now waiting on an MRI. Fingers crossed it’s nothing serious, but with this wild ride who knows. I hope your chemo shrinks everything down so that your surgery is a great success. Do you have a date scheduled already? 

laura50

I believe my doctor mentioned genetic testing but I’m not sure if it has been done yet.  Is it just a blood test? I will not be seeing my own doctor until later in August. I have to see another doctor later this month before my next chemo, so I really haven’t been able to ask a lot of questions. I guess that’s why I’m reaching out through chat rooms.  My dr hasn’t scheduled me for surgery yet because she wants to do the 3 chemos and then recheck my scans. This second round of chemo has been a bit harder. I have a lot of abdominal pain with the chemo, I hope it is all the cancer cells dying! My ascites is slowly going down so that is encouraging-I only look 6 mos pregnant not 9! Let me know what you find out from your tests. I’ll keep my fingers crossed that it ends up being nothing. 

collegal

The oncologist can refer you for genetic testing.  It’s done in London too. You’ll meet with a genetic counselor and go through you’re entire families cancer history, and do a blood test. They will also give you options on how many genes you want tested.  (There are three levels you can choose).   I would ask for sure at your next appointment.  If you’re BRCA positive, there are implications for treatments, and they will offer you options for breast cancer screenings or prophalatic mastectomy and it also let’s your family become eligible for testing to see if they carry any if the mutations too. Some ovarian cancers are linked to colon too.. so I think it’s great information for you to know.  

I just has had my third chemo, and I’m getting a lot of abdominal pain too.  This one was my toughest so far. Lots of body and feet pain, but I’m getting through it.  

I hope your chemo is kicking all those cells too!! And then you can have an optimal surgery! 

laura50

Thanks for the information. I definitely have not had genetic testing done then but I will mention it to whatever oncologist I am seeing at the end of the month. I hope you start feeling better from your chemo soon. I’m already dreading round 3:) it really does suck! It’s quite the experience that’s for sure. 

I have  no idea if you’d be interested but I went to an ovarian cancer support group yesterday. It is held once a month in London through Wellspring at the downtown YMCA. It was a really great group of women, all at different stages dealing with this disease. It was a very positive experience and I got some great advice right away. One lady drives from Windsor every month, so I thought I’d pass along the info. 

I hope your abdominal pain means it’s killing all your cancer cells too! Stay cool it’s supposed to be ridiculously hot over the next few days. 

collegal

Really? I would love to go to that! I wonder if the Windsor lady might want to carpool.  Is there any chance you might be able to put us in touch? I’d love to meet you too! 

Flowergirl

Hello @collegal and @laura50.. good to hear you have some supports.

You can also private connect with each other by clicking on the person (user name) you want to message.
Then those comments won't show on the public site and you can exchange more details. 

Yes, it is good to have various options for support, online and in person as I found what you need in terms of support changes over time. 

There are also webinars on the main site on genetics - good to check them out - also be sure you have access to genetic counselling as well.
The link is below and be sure to scroll down the page to see all the pre-recorded webinars
https://ovariancanada.org/events-support/go-online-for-support/webinar-series

laura50

Thank you Flowergirl! I hadn’t realized that. And also thank you for all the webinar links. I’ll check them out during this heat wave that London is having!

laura50

Hi 
I sent you a private message with info on the support group.