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Hi Everyone! My name is Sarah, aged 39, based in Ottawa. Diagnosed Stage 3 OV Cancer in Nov. 2024, extensive spread through peritoneal area. I have two beautiful kids aged 3 and 8! Parenting during this has been an experience! 

I've had 4 rounds of chemo and just finished my total hysterectomy surgery, removal of omentum, and had Hot IntraPeritoneal Chemotherapy (HIPEC) procedure in that same surgery just last week. I spent 7 days in hospital, 3.5 in ICU. 

I'm writing because I don't think HIPEC is super common as so few hospitals in Canada offer it. Ottawa General became only the second hospital in all of Ontario to begin HIPEC and I was the second patient ever to receive it here as it's brand new (and was their first gyne patient ever for it!!!!). The surgery was really successful! I'm back home recovering now. They got all the visible and hopefully microscopic cancer cells too. I still have to go through 3 more rounds of chemo (taxol and carboplatin) and will also have two years of maintenance drugs as I'm BRCA2+. I've responded incredibly well to the treatments and they are already classifying me as in total remission which is SHOCKING given how extensive my cancer was. 

I find it really confusing to be considered in total remission but still undergoing months more of treatment. Not sure if anyone else has that confusion or feeling during this? I am so grateful for the medical care I've received at the general. The team is incredible.  Anyways, just wanted to put this out there because I'm curious if anyone else has gone through HIPEC, particularly as a young person. Surgical menopause is hitting already with intense sleep disturbances. I've been referred to the menopause clinic but haven't gotten in yet. If anyone has questions about the total hysterectomy/ HIPEC or even their own experiences they'd like to share, would love to connect. I'm really not sure what the future will hold for my sex life, menopause etc. I'm grateful to be alive but there's also such a component around quality of life with my husband and kids, I enjoy connecting with those going through similar life experiences. 

Hello @OttawaOvaWarrior to the Teal Sisters group on OVdialogue. My goodness what an experience you have had. I have never heard of HIPEC so I had to google it. Thank you for sharing your story and journey so far. I'm so thrilled that your prognosis is so positive. I'm surprised they are using the term "remission" as I've been repeatedly told that the phraseology for ovarian cancer is "no evidence detected" or NED. Remission however is a very lovely word to hear and if that's what they are saying then that is fantastic. I hope the menopause clinic team will be able to answer any of your questions regarding sex life etc. It sounds like the medical team surrounding you so far has been tremendous which is great to hear.

I am 60 and was diagnosed in Feb last year so was past menopause. I do know however there are quite a few Teal Sisters in here who have experienced surgical menopause so I hope they will be able to provide some counsel. I too am BRCA-2 and I'm 7 months into Lynparza (olaparib). If you have any questions about that I'm happy to share. Talk soon.

Hi @Alwayslearning! Thanks so much for your message and sharing your story too! 

Honestly, I'm so confused by the term remission. I've been told repeatedly this isn't a curable cancer and then I met the gyne-onc surgeon who will perform my surgery and he said he has so many patients living 10+ years 'cancer free' he considers that cured. After my surgery when I was told they got all the surgery I pressed him and specifically asked about whether I'm considered "NED" which is the term I keep seeing online and he looked like he hadn't heard that term before and instead said there are categories of remission and he'd considered me in total remission. However, I still have 3 more chemo sessions ahead and such a journey still. So I'm like "huh?" My primary oncologist/surgeon is much more on the side of "have a goal of making it to 5 years and go a day at a time," The reason I had a different surgeon is because of the HIPEC addition and it being so specialized, they needed someone with expertise in this procedure. It is an INTENSE procedure. The nausea is next level.

My Aunt currently aged 61 also diagnosed (just two months before me), is about to start Lynparza. How did you find the first two months of the drug to be? I will be starting the drug in the summer and the summer was when I was hoping to take a family vacation and be able to do fun things. Is it a manageable drug?  

Hi @OttawaOvaWarrior...goals are good. I think you need to shoot for 10+ years for sure!!! I have no doubt the HIPEC procedure was intense. I'm so glad you are doing well. I was initially supposed to have Cisplatin via IP Port and I read some very serious side effects from that. They tried two ports but my body rejected both so I had Carbo/Pac. If HIPEC is the new wave and comes with amazing results let's hope more surgeons become approved for the procedure, so this is more readily available for others. 

I'm so sorry to hear about your Aunt. What are the chances of that?? I hope she is doing well. As for Lynparza, I kept pretty detailed notes on my side effects. Mine were nausea and fatigue. By Day 25 the drug had started to settled into my system and both started to dissipate rapidly. I was able to manage the nausea with Ginger Gravol plus ensuring I ate before taking my dosages (twice daily - 300mg). I have also experienced quite a bit of lower abdominal pain (like strong period cramps), but with a total hysterectomy we know that's not possible (ha ha). My last CT scan in early Feb was all clear but we continue to monitor. I read online that about 45% of users experience abdominal pain so it just may be what I'll have to live with. I do know there are others in this forum who take Lynparza and have had almost no side effects. From my experience, it is a manageable drug and hopefully you will have minimal to no side effects too.

Hi Sarah,

My name is Katie Lark I am an in Ottawa as well and I am a BRCA 1 Previvor. 

I was diagnosed with knowing about the BRCA 1 mutation when I was 25 years old. My aunt had been diagnosed with Ovarian Cancer at the time which is why my dad younger sister and I got tested(my dad came back positive my sister came back negative). At 27 I had a double mastectomy as I was tired of having panic attacks after every MRI. 

In 2019 I found out that I had developed endometriosis and decided to have a salopingoopherectophy and a total hysterectomy in January of 2020 at the age of 30.

I have been attending a local support group here in Ottawa for BRCA mutation carriers for 10 years now. I am now one of the facilitators of the group.

We meet the 3rd Thursday of every month at the Ottawa Cancer Center's Community Hub at 1500 Alta Vista dr. I Know its is short notice but we are meeting tonight at 7pm if you would like to join us.

Feel free to email me at hboc.ottawa@gmail.com and I will include you in our email list for any future meetings and events.

Thank you for sharing your story!

Katie

Thank you so much for introducing yourself Katie and sharing your story! We are similarly in my family discovering who is BRCA 2 positive and it's more than we realized. I'd love to attend one of the sessions but I can't currently drive or do much post-surgery. It will likely be May before I can join but I do intend to. Thank you!

Hi OttawaOvaWarrior - Thanks for sharing your story about HIPEC.  I am in Ottawa too, and was diagnosed in 2019.  At the time, I had been reading about HIPEC and asked whether it might be useful for my case, but my question was pretty much dismissed, possibly because unbeknownst to me, they weren't doing it at the General yet.  

I also wanted to let you know that there's a peer support group for women in the Ottawa area with gynecological cancers.  We meet on zoom every second Thursday evening.  In case it's of interest to you, here's a link: https://gynecancerottawa.wordpress.com/

Jody

Hi @jobo! Thanks for introducing yourself! Yes, HIPEC literally just started at the General. I was the first gene patient but even though I qualified for the procedure, it wasn't something they ever offered to let me have done in Toronto. 

I'm hoping to join the next virtual Ottawa support group. Looking forward to meeting! 

Hello, @OttawaOvaWarrior

Thank you so much for sharing your story.  I'd never heard of HIPEC, so I appreciated learning about it.

I'm not sure if this is an answer to your question about why you're undergoing chemo even though you're in remission, but here goes.  After my surgery, I went through two more (of six) rounds of chemo, even though the doctors got all the cancer that they could see.  The last two rounds were to get any cancer that they couldn't see.  My gyne-oncologist once told me that it takes one cell to make cancer but a billion cells to be visible in a scan.  Perhaps that's why you're still receiving treatment -- to kill any potential cancer that's not detectable?

I also had the experience of surgical menopause.  Fortunately, I've had no menopausal symptoms.  (Some women don't.) That may be a function of anti-depressants and, later, gabapentin (for the lingering neuropathy in my feet.) I'd highly recommend the book The Menopause Manifesto by Dr. Jen Gunther.  I made sure to finish reading it before my surgery.  It's informative and funny.  I still use it as a reference sometimes.

Wishing you to stay cured!

Thanks for sharing @FrogProf. I have never heard that about one cell making cancer and a billion to show up on a CT. Fascinating! 

I've skimmed through Dr. Gunter's book actually. I thought I had early perimenopause all last year......turns out it was ovarian cancer wreaking havoc on my hormones. I love Jen Gunter and how to the point she is! Cuts through the BS!