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Hello everyone, I was diagnosed with low grade serous ovarian cancer in April. I have since had all my reproductive organs and omentum removed (debulking) as well as 6 rounds of chemo. CT's show I still have a couple of lesions in my abdomen that were too small to notice first time around, so I need to have the debulking surgery again in Jan. They also found I have a similar calcified lesion on a lymph node by my left side adrenal gland, and several lesions on the fat pad behind my breastbone that we are watching. I'll be having them removed as well, hopefully laproscpoically - it all depends on the biopsy on the one by the adrenal gland. So far none of my other organs seem to be affected. Has anyone out there had to have a second debulking surgery?

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Hi @Sfolk and welcome to OVdialogue. I hope you will find as much benefit from this forum as I have since I joined last year. The Teal Sisters here hold a wealth of support and information. If you haven't already, you can request a copy of the OCC Resource Guide (see link below). 

Thank you as well for sharing your story. While I welcome you, I'm also sorry that you are going through this journey. It sounds like you have a good health team who have a solid plan in place to support you. It's also good news to hear that none of your other organs have been affected. I did not have a second debulking surgery however if there is anyone in this forum who has, I'm sure they will engage. Did your medical team say if they would explore additional chemo or targeted radiation in additional to the additional debulking surgery?

Please continue to keep us informed on your journey and ask lots of questions. We are all here for you. 🩵

https://ovariancanada.org/resources/support-resources

#Introductions

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Thank you @Alwayslearning. I'm happy I've found this group to lean in to. I have already downloaded and read the Resource Guide, thanks. My care team is going with a "removal of everything we can" approach and then hormone inhibitors to hopefully keep it from recurring. If that doesn't work, we will look at alternative methods including more targeted chemo, targeted radiation and trials to see which one would benefit me the most. As my cancer is low grade, and fairly rare, there is even less known about the best way to treat it. Unfortunately I had it for some time before it was discovered, so it's at least a stage 3, and possibly stage 4, we won't know until the next biopsy. At present, all the known lesions I have are still around 1-1.5 cm or less. I'm fortunate to live close enough to Juravinski and have a good health care team there. I also had breast cancer in 2017, fortunately discovered very early, and a lumpectomy, sentineal node removal, radiation and 5 yrs of hormone inhibitors was all I had to endure. Still, in the back of my mind, I'm wondering if the upper body lesions I have are related to that. They have said no, but until I get the biopsy results, I can't seem to let that thought go. I am also awaiting genetic testing results, as there has been a lot of cancer in my family - each person with a different type. I've registered for the Teal Tea next week.

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@Sfolk thank you for sharing more of your journey. My oncologist at PMH did the "remove everything we can" approach too (I'm high grade serous, 3C, BRCA2+) when I had my surgery in Feb '24. I'm always hopeful that with the chemo that followed, that everything has been eliminated. Hope can be a powerful thing. 

Thank you as well for sharing your information about "hormone inhibitors". I was not aware of those or how they are used so I did a google search. As my "alias" says, I'm always learning. I'm glad you have a good health team as well. I've heard good things about Juravinski in Hamilton. I was initially called out to both Juravinski and PMH upon my initial diagnosis but ended up at PMH as they answered first (it was a luck of the draw thing).

You are clearly already a warrior with your battle against breast cancer. I would tend to agree with you that it would be hard to separate in your mind, whether there is a correlation or not to your upper body lesions. Hopefully as you said, the biopsy will provide the information you need. Glad you were able to get the genetic testing done as well. Is your medical team orchestrating that? Mine did when I had my OVC surgery last year.

I'm registered for the upcoming Teal Tea so will meet you there too! Stay strong 🩵

#Treatmentandsideeffects

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Hello, I'm sorry to hear about your diagnosis. I've also got low grade serous ovarian cancer. I had borderline tumours removed in 2011, they did the full hysterectomy. In October 2024, I was diagnosed with low grade and in February I had my second surgery. I still have cancer on top of my liver and sigmoid colon. We aren't doing another surgery or chemo because the risks outweigh the benefits. I'm on maintenance therapy now. Are you? 

Have you heard about the Ramp 301 clinical trial, you may be a candidate? I don't know many others with low grade, so it's nice to connect although it's under crappy circumstances. 

Take care, 

C

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Thanks C, you're right, it's hard to find others with low grade, as well as info on it, thanks for responding. I'm so sorry to hear that more surgery is not an option for you. I hope the maintenance therapy keeps it in check for a long time. After my second, and possibly 3rd (for the lesions in my chest) surgery, I will be going on hormone inhibitors, with the hope it will help prevent recurrence for a while and keep any residuals at bay. The lesion on the lymph node by my adrenal gland has me quite concerned. I'm afraid that it may be in my lymph system.  I have not heard about the Ramp 301 clinical trial. I will definitely look it up after my surgery. I have enough rolling around in my brain and am trying not to get ahead of myself with information overload. 

All the best, S

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Good luck in your surgery, S. When is it scheduled? Let us know how it goes and when you're ready, we can chat about the trial. You're right, there is a lot going on at the moment! 
Take care, 

C

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Thanks, Jan 9, so close and yet so far away. You too!

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@Sfolk, just wanted to say welcome, glad you found this group, the woman are a great support and wealth of information. Best of luck with your upcoming surgery.👊🩵

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@Meinvan thank you!

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@Alwayslearning have we recently heard from @GloHo? @GloHo-how are you doing?

Hi@Tanja I tagged Gloho on a recent post regarding pleural effusions and she lent her voice/experience to that thread. 
You are always welcome to reach out to her or anyone on this site directly. If you haven't done this before, if you hover over their "username" in a post, it should give you the option to send a private message. See attached photo. I always appreciate Teal Sisters thinking of each other ❤️
#Supportandencouragement

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@Tanja

Hi!! Still here 🤣. Thanks for asking about me.

The last three months have been pretty crazy for me. Started a new drug so have had dosing adjustments and had to have a blood transfusion. In the middle of all of that, I had two infections (Pleur-X and chest port)…one landed me in the hospital for three days 😵‍💫. I now have a PICC line for infusions…a home nurse comes once a week to change dressing and flush it.

I am currently on Gemcitibine…the second last standard of care drug available.

I'm waiting for my CT results. Once my results are available and reviewed, my case will go to the tumour board for discussion. I may have the results by next week. In the meantime, my treatment will continue. I'm hoping to get a full cycle in without interruption.

If there is progression, the Dr will want to stop this treatment. There is one more drug (Topotecan) that she says is "brutal." I have not spoken to her about what that means exactly…don't want to think about it until I have to. So I'm having the quality vs quantity of life debate with myself. I won't really know which way I'm going until I actually have to make the decision. I'm trying not to dwell on it and just be grateful that I am getting some treatment right now. 

Now…regardless of the CT scan…and if I can get through an entire cycle, I am going to bring up the Cisplatin/Gemcitibine combo option. I've read that they work well together. It will be a tough discussion because she will probably dig her heels in to not do it (outside of the norm😵‍💫)…or maybe she'll surprise me. If I do go this route and find the combined side effects are too much, then I can always stop. I really would like to give it a try but things have to come together to allow me to advocate for it.

I'm also having mobility issues. My legs are weak and tired. I'm ok for short distances but not for the long game. Bought a portable mobility scooter that offers me some freedom and independence. I can zoom up to our mall at the end of the street, can get out to other shopping sites and get to my Dr appointments. I have also modified the way I do things in the kitchen…sit at counter to prep and bake 🤣. Fortunately, my husband does all of the daily meals so it's really only for things I want to do for myself. 

That's me in a nutshell. Nothing is easy about this disease. 

Wishing you an abundance of good health, happiness and lots of memories in 2026! 

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@GloHo Happy New Year 2026 and Hang in there girl! Thank you for the detailed update. I must say, I am admiring you with how little complaint you take things and just make the best of it. I agree with this attitude - life is too precious to dwell on what you can not do or what you can not have. But it is not easy to live it.
I am happy to hear that you keep yourself mobile. I hope you are not in pain and enjoy many more special moments this year.
I know that you are FRalpha positive and I know that you were denied Elahere as you had 3+ treatment cycles. However, and you may have done this already, is there a way to argue for trying it as compassionate use? I have clear cell and for me there is not maintenance treatment to keep cancer from recurring. After my 1st recurrence I argued with everybody at PMH that I want to start bevacizumab. However, the Canadian guidelines argued against use in recurrence setting and Canadian articles weighing cost against efficacy argued for not funding the drug outside the first chemo cycle. However, I read a lot and saw case reports that showed better outcome in those patients with clear cell OC that were on bevacizumab. I had tolerated it well - no side effects- so, I wanted to be on it. Better something than nothing. My insurance company did not pay it, but I get it on compassionate use. Now there is data coming out showing an advantageous effect of added bevacizumab to chemo also in recurrent setting, even to PARPinh. Sorry, I don’t want to dwell on it, but could compassionate use application for Elahere be a way forward as it is now Health Canada approved? It just really bothered me that you couldn’t get your treatment trial. I hope your CT scan is not too bad and that some of the tumor has responded.

Hi @Sfolk ... I know Jan 9th is creeping up. Wishing you luck with the surgery. Good luck with any prep as well. You got this!!!

#Supportandencouragement

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Thank you @Alwayslearning, sorry I've been so quiet lately. December and the holidays were a blur with things going on and my just needing to take some quiet time for body and mind whenever I could. I did agree to participate in the Strive before surgery study, and been doing prehab excercises weekly for the last 3 weeks. They are studying whether exercising (cardio, strength and stretching, along with breathing exercises and protein drinks) prior to surgery will have an effect on post surgery recovery. Lots of pre-op stuff going on this week, but good news is ...... no bowel prep!!! Gotta count the little wins, lol! Going to try coming home after surgery, even though I live alone. Luckily I have a close group of a few friends and a son not too far away to assist. Will update the group once I get home and settled, as I prefer using my laptop over my phone. 

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@Sfolk no apologies needed. We all leverage this forum in the way that makes sense for us. The Strive study sounds interesting. I've always been told that being 'fit' prior to surgery is very helpful for recovery so good for you! Also, YEAH on no bowel prep. 🙌

Glad you have support around you. Don't be shy in taking any support the medical folks may provide e.g., an in home nurse to check on you daily. 

We will be waiting for you when you are ready. 🌞

#Supportandencouragement

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@Sfolk I know your surgery was Jan 9th. Just wanted to say I know we are all hoping it went well. You are no doubt still in recovery mode but we are all thinking of you and wishing you well as you gain back your strength post surgery. 🩵 There is NO pressure to post a reply. This is just a 'thinking of you' post. We will hear from you when we do. Taking care of yourself if priority number one.

#Healthandwellness

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Hi @cmcc and thank you for sharing your story for @Sfolk. It is nice to find someone who has a diagnosis similar to your own.

You mentioned you were on maintenance therapy. Would you be willing to share what the therapy is for you. How are you feeling on that therapy?

#Treatmentandsideeffects

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Hello, thanks for asking. I'm currently taking exemestane. I am experiencing joint pain and skin inflammation. It's only been two months. Prior to that, I was on Letrozole for three months, but my joint pain was terrible. They replaced Letrozole with Exemestane. I'm hopeful it will keep my cancer stable. 

C

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@cmcc thank you for sharing. I did a search on "hormone inhibitors for ovarian cancer" just to learn more. I hadn't seen Exemestane on the list but it's Dr. Google so I always take him/her with a grain of salt 😁. I'm sorry the drug caused such terrible joint pain. It is so frustrating I know from my experience with Lynparza (parb inhibitor) that you are taking something that you hope will help stave off your cancer however the side effects can be overwhelming. I hope the switch to Letrozole will be more suitable for your body with less side effects and of course will help to stabilize your cancer. Again, thank you for being so open and sharing your journey. We appreciate your voice in this forum.

#Treatmentandsideeffects #Supportandencouragement

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Sorry to hear the Lynparza isn't what you expected. Sorry I wasn't clear, I'm on Exemestane now. I agree, in my mind I think it's going to be the golden ticket.

I'm trying to get access to meds in the states for low grade, but it's not approved in Canada yet. It may have serious side effects too. Here's the information about for anyone interested- https://investor.verastem.com/news-releases/news-release-details/fda-approves-avmapkitm-fakzynjatm-combination-therapy-first-ever. 
or follow me @myfriendwithcancer on instagram. 

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@cmcc my apologies you were clear. I just mixed the two drugs up in my response. Lynparza is working for me thankfully (I'm 16 months in) however I do suffer from some of the side effects that are listed and some that aren't however if it's keeping my cancer away then I will persevere!

Thanks for sharing the information on the meds you are exploring via the U.S. This is a great place for sharing. Much appreciated.

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@cmcc I'm  so sorry to hear that you are having such reactions to these meds. As far as I know, I will be put on Letrozole as well. I was on Anastrozol for 5 years and had little to no side effects, so I hope I will be able to tolerate the Letrozole as well. I  also hope the Exemestane keeps your cancer stable. 

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Thanks, I hope so too! More scans in a month and I'm being monitored every three months. I'll check out if I can try the med you were in. All the best to you!! 

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Thank you @Alwayslearning. Yes still in recovery mode. this surgery was a little more invasive than I had originally thought, and my midline incision now goes up to just under my rib cage. That extension is causing me much more discomfort and pain as well as affecting my ability to eat very much at one time or breathe deeply. It's slowly getting better now.  I also have a blood clot in my lung, so have to be on blood thinners for 3 months for that. Drs removed 8 specimens for biopsy, the 4 we knew about, and 4 others. Of the 8, the lymph node adjacent to my left adrenal gland, and one that was discovered during surgery in my right paracolic gutter were positive for LGSOC. The other 6, I cannot find much info on, and will have to wait until my follow up  appointment Feb 19 for a more clear explanation. 2 look like they might be similar to post-opertive scar tissue type remnants from my first surgery, and 4 did not show signs of the cancer, but had rare psommoma bodies. There's not a lot of info on those online, so not sure what they all indicate in my particular case. Just trying to get as much rest and nourishment as I can and keep my mind and body calm.

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Thank you Tanja.❤️

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@Sfolk Sounds like you've been through so much. I wish that you have better days ahead. I'm always here if you need to talk.  I also had that surgery one year ago with the large incision. One day at a time. Sounds simpler than it is.  take good care teal sister,  c

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Thank you @cmcc, much appreciated. ❤️

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