Hi,

I just thought I would introduce myself here, so here it goes.  I am a 52 yr old mom (53 tomorrow) to an 18 yr old with ASD, he is my world and I am his.  I have been a nurse for 31 yrs most of my time working in critical care.  I live in BC. As of Feb 17th, I am now an ovarian cancer fighter.

Last Feb 2024 I went to my GP with new symptoms of small spotting and small urine incontinence.  Thinking it was probably perimenopause given my age no investigations were done at that point.  Gradually, over the past year the incontinence became worse, started having episodes days a month of extreme fatigue, nausea, loss of appetite and pelvic pains around ovulation time but I continued to think menopause would happen at some point and everyone's body reacts differently and this was how mine was reacting to the changes.  Well, fast forward to this past January when I got back to see my GP where we discussed my ongoing symptoms and weight loss. Did a pelvic exam and felt a large mass, hoping it was just a fibroid I was sent for lab work and an ultrasound.  The ultrasound wouldn't be booked for a month.  I got my lab work done and I was severely anemic, started iron pills, and my CA125 was 675.  Mid February, i got my first CTabd/pelvis which showed the large mass 15cmx 12cm,15cm sitting above my uterus.  There was also peritoneal malignancy seen, with large ascites. Since then, I had a ct chest to rule out lung Mets, luckily just some nodules seen but didn't look cancerous at this time.  I went for a biopsy of the mass but it didn't show any ovarian cell's just uterine and endometrial benign cells,so really undiagnostic. Currently, i am up 10lbs in fluid from the ascites and have lots of swelling/edema to my lower body to my feet.  Most of my discomfort comes from the swelling that there seems to be no relief from. Now, i am waiting for my first visit with the cancer agency to be assessed on March 20th.
Well, thank you for being here as i start this journey.  Any tips or tricks are welcome.  Trying to stay positive for myself, my healing and for my family. 
Thanks for reading.

Welcome@Meinvan I am also in BC.  I live on Vancouver Island (Duncan).  The waiting for an assessment and having a treatment plan put in place is hard.  Once you have a treatment plan the Teal sisters will definitely have some tips for you.  There is a ton of information on this site if you click on the categories tab at the top.  Prior to your appointment write down any questions you have, take someone with you to your appointment as sometimes we are overwhelmed with information and emotions.  Stay positive.  

@lbarr72 those are indeed very inspiring words!  Thank you for sharing them! 🫶

I think we are all warriors!  I do read lots of inspiring quotes too.

❤️

I agree @lbarr72 that art is helpful for the healing journey.  I do several Wellspring classes and on Wednesday nights Im in a Meditative Art class.  Wellspring is fantastic - SO many great classes to choose from.  I do most of them online.

Hello @Meinvan and welcome to the group. Thank you so much for sharing your journey. It still amazes me how different all our "origin stories" are in terms of what led us here. There really is no straight path to an ovarian cancer diagnosis. As @JoanEG said, the waiting for a formal assessment/diagnosis and then resulting treatment plan can be some of the hardest time. Of course you are also dealing with pain which I know can make it worse. 

The Teal Sisters in this forum are such a wealth of information and knowledge, and pretty darn good at providing support when needed. Do you have support around you? I found that was very helpful to have friends and family to lean on. I would also suggest looking at the resources in this site, particularly the Patient Resource Guide (you can download it online or request a free copy be mailed to you). Try to stay away from Google. There are scary stats out there and I think a lot of misinformation. The OCC site is a safe source for information.

Please keep us updated following your March 20th appointment. We will be here for you.

Oh and Happy Birthday @Meinvan

Thank you ladies!  I'm sure I will be asking lots of questions in the coming weeks and months.  I agree, Google is a rabbit hole with lots of scary information.

HAPPY BIRTHDAY @Meinvan! 

Welcome, @Meinvan@Meinvan!

My experience was very similar to yours.  I was 49 when I was diagnosed.  My symptoms were subtle and I, too, figured I was in perimenopause.  The cancer diagnosis was a shock, as I'm sure it often is.  March 29 will mark two years since my diagnosis. 

Are you able to get your ascites drained? I was drained in the ER the day that I was diagnosed, but when the fluid built up again, I couldn't find anyone in the ER who would drain me, and the radiologist who did my biopsy said that there wasn't enough fluid to be drained.  I eventually found a doctor in the ER who wasn't comfortable doing the draining ("tap") himself, but he made arrangements for a radiologist to do.  Good thing, as I had 4 liters drained out of me!

I could offer all kinds of advice, but for now, I'll recommend two things.  1) Be prepared for people who have no idea what you're going through tell you what to do.  The advice is well-intentioned, but usually annoying.

2) It's good to be positive, but also give yourself permission to have bad days.  It's okay not to be okay.  It's okay to feel what you're feeling.  You have permission to have meltdowns when needed.

I wish you all the best! I'm sending positive thoughts about your appointment on the 20th.

@FrogProf

thanks for sharing, I am hoping when the clinic assesses they will tell me what the plan for the ascites is,I'm told the chemo should help and once the tumor shrinks so will the ascites and everything else.  Otherwise it will need to be drained at some point.  Of course I have bad days and that's ok but I have to keep pushing thru .

@Meinvan I hope things weren't too overwhelming at your appointment yesterday.  I agree with what's been said here - get the resource guide book from here - it's free and it's really nice to go through and read the sections you want to and highlight things.  I would also encourage you to register with Wellspring as they have many free supportive courses - in-person and online.  During one of my Meditative Art classes online - I was feeling angry about having a recurrence, so used that class to express those feelings and it was SO helpful!  Not sure if you're into art or meditation, but Wellspring has all kinds of classes and they have a Community page as well that you can start a "club" if you're looking for others in your area.  I would also encourage you to join some of the Teal Tea's online here at OCC.  It's nice to be in a group with others having similar experiences.

Thank you all for your kind words and info.  Didn't learn much from my appt yet.  Doctor seems to think the primary source maybe coming from my uterus or endometrium and then grew this large ovarian mass.  She tried to do an endometrial biopsy in her office but wasn't able to so I am booked for Monday to have it done with sedation this time.  I was sent for an abd. Tap on Friday to check the cytology of my peritoneal fluid.  We thought they were going to drain the fluid to give me some relief from the ascites, but no such luck they only took 50cc.  She has put in everything as urgent so we will get results back in 1-2 days which is good, and then she said we will most likely start chemo first.  My hemoglobin is back down to 79 again so I'm pretty tired these says.  Might get some blood on Monday for biopsy if needed. I find I can barely walk  right now, my legs are so swollen and hurt like heck!  

@Meinvan I hope you get some relief today and with the 'urgent' request for test results by the doctor, that answers will start to become clearer. We all understand how unnerving the waiting can be. I also hope you they figure out how to help boost your hemoglobin to relieve your leg pain. Hang in there. Thinking of you.

@FrogProf @Meinvan  All good advice. Read it and use what you can when you need it. It is definitely okay to not be okay some days. Meltdowns included. Some people will offer advice but truly have no idea what you are really going through and that is okay.  You will find a way to cope and make your way through it. The surgery will be over and done with it before you know it and you will be well on your way to recovery before you know it. We all find out we have cancer and are shocked at the time when we do.  The information comes quickly and it takes us longer to process it than it does to accept it. You will get through it, it will just take some time and some healing to do so.  Hang in there and take care of you!

Hello @meinvan and welcome. This forum is a wealth of information and support. Thank you for sharing your story. It sounds a little bit like mine. I went to my GP in January 2024 with worsening incontinence and some pelvic pain as well as bloating and increasingly heavy periods.  Blood tests showed I was anemic and B12 deficient so started supplements and got a referral to the pelvic floor clinic for the incontinence.  Everything else was considered perimenopausal and felt kind of "normal" as I compared notes with friends of a similar age and stage.  I was diagnosed in July 2024 (at age 54) after ending up in emergency with a pleural effusion covering 93% of my right lung (thought I had pneumonia).  I was having to go to the hospital every 3 to 4 days to have the fluid drained from my lung, so they started chemo right away.  The chemo started having an effect right away and cleared it up to the point I didn't have to have any more drains after 2 rounds.  Hopefully it has the same effect on the ascites!

If I can offer this, based on my experience.  At the beginning of my journey I knew this would be as much of a mental challenge as a physical one.  Probably even more so.  Asking other people for help was not something I ever did.   So I stepped out of my comfort zone and asked for every mental health support I could get my hands on.  I had to advocate for myself and ask more than once and do some of my own research, but I "tried on" everything I could (seriously I was a little obsessed).  A lot of things didn't fit and that's okay.  But I feel like I set myself up to handle the rollercoaster a little bit better. The 2 things that I found in the beginning that helped me the most:

1. I ended up with a wonderful psychologist through the psychosocial oncology department here in Calgary.  It took me 2 months to get in on a cancellation.  Not sure what the waiting list is like in BC so I'd say ask now if you are thinking about it.
2. Wellspring also has one on one peer support specifically for Ovarian cancer.  I found it immensely helpful to talk to someone who "gets it".

Best of luck with your appointment tomorrow.  Sending the positive vibes your way.

Hi Meinvan,

Im sorry you had to join us here, but Im glad you found this group.

I dont understand what is taking so long in your case and others. I was seen in the ER in small town Ont last May. Over the next 2 weeks I had ultrasound, CT, 2x MRI and met with the surgeon. Surgery was a month from the ER visit and chemo started 3 weeks later. Your symptoms are even more indicative than mine were. 

I hope your assessment has given you a clear path forward and relieved some anxiety.

Well busy past few days here.  Thursday did the Paracentesis but the radiologist only took 50cc of fluid for diagnostic, so no relief from ascites and edema. Monday morning went for An endometrial biopsy with sedation, much more comfortable then doing that in the office.  Yesterday oncologist called to say that peritoneal fluid was negative and endometrial biopsy was negative so we still don't have the confirmation of the ovarian cancer yet or any type for that matter to start chemo.  She decided to do an mri now and if we still can't find it with the mri , she suggested we may just go straight to surgery to remove the tumor first.  So now I wait again to hear about the mri date.  Next appt with cancer agency is April 7, so hopefully mri is done before then so we can get our plan in place and get the show on the road.

@Meinvan  Welcome to the group. April 7th is approaching fast and hopefully any anxiety as well.  Sounds like you have some plans on the go depending on findings.  Going straight to surgery may not be a bad thing and may be the answer you are looking for.  Hoping you get answers at your next appt as you wait and are writing your questiions down for them. Hoping that MRI gets booked and done sooner rather than later.  Sounds like you are ready to go no matter what the outcome. That is a good attitude to have. We are all here for you as you wait.  Perhaps you want to join our Teal Thursday chats to ease your mind.  I will be doing a check in to see where everyone is at and how they are doing.  It would be lovely to have you join us.  Look forward to your updates.  Take care of you!

Change of plans yet again.  I did my MRI yesterday, This morning the gene oncologist called to tell me that my uterus is fine just fibroids, that cancer is still pointing to ovarian with peritoneal deposits, but of course without a positive biopsy the oncologist will not start chemo until we have an official diagnosis, stage,grade etc…So she gave us 2 options for next steps: 1) do IR guided biopsy again and hope to get ovarian cells. Or 2) go back to OR for a laparotomy to look around, do more biopsy's and drain the ascites. She said while in OR she will get pathology to look at samples before ending surgery so we will know if we have cancer cells in samples.

obviously I'm going with option 2.  She said she has never had anyone that has taken so long to diagnose.  This will be the 4th attempt at biopsy.  Surgery will be in April 11th, after this we should have an idea of what's next.  Chemo if we can confirm the type and surgery if she still can't determine the cancer.  My appt with Cancer agency was bumped till April 14th from the 7th I guess cause we don't have anything confirmed yet.

thanks for being here and supporting me thru this.

@Meinvan I can't believe the journey you have been through. I am thankful you now have a plan forward however can only imagine how frustrating all of this has been. April 11th will feel like an eternity away and then it will be fast approaching and upon you. Stay tough and strong. You've managed this so far. You've got this!!!

@lbarr72 I love your comment that we are, "...obviously not statistics, as many sisters have proved them wrong!". You are absolutely correct considering the many survivors and warriors in this forum. Thank you for the reminder. My son's fiancee is a PhD student in molecular science and her field of study is Ovarian Cancer. She likes to remind me that the online statistics are not to be taken as the gospel. They are often comprised of information on a more 'global' basis and can be very misleading. I prefer instead to read the amazing stories of survival and endurance from our Teal Sisters. That is where the truth exists.

"Not statistics". My cousin was diagnosed with stage 4 HGSC 9 years ago.  After chemo and surgery she was part of a trial for Olaparib and has now been cancer free for 8 years!

💗

Morning ladies!  Well finally yesterday went and had my laparoscopy done, dr. Was able to remove 9 litres of ascites fluid off of me.  And was finally able to get the positive pathology we have been looking for after the 4th biopsy, so she was able to confirm the ovarian cancer, told my hubby it was the most common type to have but he didn't know any more then that.  After that finding she was able to speak with the cancer clinic where I will be going and they rescheduled my appt for initial consult Tuesday instead of after the Easter weekend, so moving forward finally!  I'm guessing an ivad will be next?  Home recovering now, a little painful to move and bend still today hoping that gets better by tomorrow,  peeing burns a little hoping that will be gone soon too.  Dr gave me 2 weeks on apixaban as well to prevent dvt's due to the high platelet counts.  Now onto Tuesday and next steps for starting chemo!  I'll keep you posted.  Thanks for being here and reading my journey.

Hello @Meinvan

Glad you finally have a diagnosis and fluid removal!  So your consult is tomorrow - April 15?  Sending you good, positive vibes for your appointment!

Thank you !  Yes tomorrow is my day for my consult finally to find out my plan.  Anxiously awaiting…..

Hi @Meinvan. I'm so glad you finally have some clarity although I honestly hate to welcome you to the club. I can say however that the Teal Sisters here are amazing for support, advice and strength. I can't imagine 9L of liquid! Glad they could reduce that significantly. If you have the most common OV cancer it is likely High Grade Serous however they will give you all that information today at your appointment and should hopefully be able to tell you stage as well. I'm thrilled they got you in for today. The waiting is the worst part. Having a plan is so helpful and I'm sure you will have a path forward after your meeting today. I hope your post procedure recovery is improving each day. Please keep us posted on the next steps in your journey. Sending you positive thoughts.

Thank you for the support 

Here's the update:  met yesterday with the oncologist going to look at doing 3 to 4 rounds of chemo every three weeks and then we will rescan my abdomen to see if the tumour shrinking and then she will decide if we're gonna continue with chemo for a bit longer or if we're gonna go to surgery at that point and then more chemo obviously afterwards. I had my lab work today. Haemoglobin is still like 82 so I'll probably get a transfusion tomorrow. She wants my haemoglobin over 90. We also sent off for genetic testing so that they can monitor things in the future if there's anything that comes up. @ Always learning you were corrected as a high grade serous cancer, with lots of peritoneal deposits apparently. she said that when they did the lap on Friday, it looked like it was my left ovary where it started, but also said my right was looking abnormal. Going to be starting chemo tomorrow.  Hubby has a bit of a cold this week so I hope he doesn't give it to me. I feel like I'm fighting a little bit of something in my throat.  Anyways hopefully I don't wake up sick tomorrow and I can start the chemo and it goes well. Not gonna lie I'm scared about starting chemo, but I don't seem to have any other choice to deal with this.

Hello Meinvan,

   I am also new here and I already feel tremendous support by this wonderful group of women. Some of the cancer symptoms you describe sound similar to mine, as well as your treatment plan: chemo for a few rounds (I did 5), surgery to remove what remains, and then a bit more chemo to clean up lingering cancer cells. I understand your nervousness about chemo, as I was feeling the same, but I want to tell you some encouraging thoughts about it and ways I found to lower discomfort. The medications we take just before chemo are extremely helpful in reducing, even eliminating nausea and sickness. It is not like the old days of vomiting anymore, in fact, these medicines will make a huge difference to your comfort level. During chemo treatments, I made sure to drink lots of water and some apple juice because the drugs are dehydrating.  I also drank a lot of water once I was home again to flush the chemo through my system as quickly as possible. I also tried to walk every day even it was up the street or around the block because that also helps reduce symptoms. I ate nutritious food with lots of snacks and lay down for a rest everyday. 

I figured out my typical recovery pattern (which might be different for everyone), but mine was feeling okay for about 3 days and then a dip down for about 5 or so days with fatigue, some discomfort, sleep issues, etc. and then I climbed up feeling quite well again for the remainder of the 3 week cycle. Tylenol was my buddy. I tended to get constipated the first couple of days after chemo, so learned to take a stool softener (2 at a time) to head that issue off. It usually worked fine. 

I was lucky that a friend of mine came to the treatments and we would have lunch and chat. It was a wonderful distraction. Some people read, listen to music, or sleep. I needed someone to interact with. 

The cancer care nurses were the most compassionate, skilled and caring group of people. You will be in good hands. And you are right, the chemo is one of your tickets back to health. That stuff really works! I felt so much better after doing 2 cycles and had excellent results after 5.

Let us know how it goes!  

Hi @Meinvan. You may be in your chemo session as I'm typing this. I think @LeslieA provided some wonderful, sage and recent experience advice. The first infusion is tough mentally as you have no idea what to prepare for however, if you keep notes of how you feel/side effects etc. each day following, you will build a story of what you may expect going forward. It was a wonderful piece of advice I gleaned somewhere along my journey. I was told that how your body reacts to your infusion is typically how it will react for additional ones. There can of course be minor differences but overall, the advice held true for me. It was very helpful as I knew for infusions 2-6 the pattern of what my body would typically go through e.g., when my face flushed on day 2 & 3 it didn't freak me out when it happened during times 2-6. 

I agree with @LeslieA that the cancer care nurses are amazing. They have seen it all and know how to react. You will be in good hands. Thinking of you. Please let us know how you are doing.

Morning ladies,

'well had my first dose off chemo on Thursday,  went fairly well ,except I did have the severe reaction to starting the Pax, was not a fun feeling to experience that, thought I was going to be hearing a Code Blue called before passing out.  But I came thru it ok, I'm told about 50% of us experience the side effect with that one.  No nausea at the present time. Friday was a beautiful day in BC, I went to get my group and screen done for my blood transfusion I am getting today.  Was able to come home and sit out in the sunshine for a bit and managed a nice walk around my complex.  Shortly after that the day went down hill, my hubby and son are both sick since Monday of course so trying to keep clear of them the best I can, son has a fever and sore throat.  Well shortly after my walk my son is texting me telling me he smells smoke, I thought it was maybe someone cooking or bbq ing outside.  Then a little while later my hubby texts me that he can smell smoke too so I went inside the house and there is smoke coming in thru the ceiling in my basement laundry room, could see any flames or charring, fuse box looked ok, the wall goes up to the kitchen and front door.  Told hubby to call 911.  FD arrived and checked the whole house for a hot spot couldn't find anything in house then walked outside found increased heat by the front door on the outside.  So they axed around my stucco and front door area and found some wood frame smothering, opened up inside wall and ceiling by front door as well, looked clear there. They weren't able to find anything electrical burning in the area, the only thing there was the doorbell wire which I think they cut when they opened the wall, so they capped that off just in case.  In the end they couldn't determine the cause of the fire, called it a 'fluck'.  Now dealing with insurance and restoration stuff on top of my chemo.  When it rains it pours!  Off to blood transfusion today.  This is how we roll over here, nothing ever goes smoothly and if we do things we do them well!

Hi@Meinvan. Holy doodle did you have a Friday. That must have been so scary. And all while managing post chemo and a house full of sickies. You poor thing. 

I'm glad you got through the chemo even with the reaction. I had it too. For Tx 2-6, I was amped up the night before and the day of with so many steroids and antihistamines, and then the slow drip of Pac, that it took 6-7 hours for my total infusion. But each infusion got better and better so my body adjusted. The nurses are so used to reactions, it's amazing how calmly and well they react. 
I hope you finally get a few good days of rest. You deserve it. 

@Meinvan Holy cow that is crazy!  You are amazing to be taking it all in stride like that.

The reaction to the carbo IS very common.  I reacted the first time as well and it was scary.  The nurses tried to prep me and said if you have a reaction, don't panic.  Well!  I panicked.  My second round I also had a reaction, but I knew what was happening so didn't panic as much. It was also a worse reaction than the first one, so they gave me Ativan to calm everything down.  I don't remember anything else about that treatment... not even the car ride home.  It was great!  Because I reacted to it twice though, they switched me to Paclitaxel NAB (abraxane) and I had no issues with that one.

Thanks for sharing your experiences with me.  I'm currently on day 6 post chemo, having vag bleeding increased  in the last couple of days, feeling bloated and increased discomfort.  I'm hoping that will stop soon.  So unsure what should be "normal" and not normal.  Just scary when you have all these weird feelings going on.   Still tired, didn't eat for 3 days starting to slowly eat today , trying my best. finding it hard at home getting laundry done and tidying up even a little bit.  My son has ocd related to his ASD so not doing things the way we usually do is hard on him too.  My poor husband is overwhelmed trying to work then comes  home and needs to do all the stuff here too.  We don't have family to help us around here, I'm relying on my senior neighbour when I can…have to learn to ask for help which is something I'm never used to doing.  I was always the one taking care of everybody, doing everything for everybody.  I hope I start to feel back to normal soon.   When did you start feeling better  after a cycle?  Is the 2nd cycle easier or harder?

did I mention we had a small house fire on good Friday  too?  Now dealing with restoration and insurance company on top of the rest of it.  

@Meinvan

I am so sorry you are having to deal with all of this on top of chemo.  It must be so overwhelming. As far as "normal" goes?  Everyone is different. For me, if you count chemo day as Day 1, my days 4 – 7 were the worst and then I started to feel better on day 8 and by the end of the 21 days I was feeling pretty good.

If you haven't already, I would encourage you to discuss your side effects with your care team.  They can adjust medications and give you tips and tricks to help you through.  Especially if you aren't able to eat.  Here in Calgary they have a "triage" line that you call specifically for chemo side effects.  I think I called them almost every day during the first 10 days of my first round.  As far as I was concerned, they gave me the number so I was going to use it!

Round 2 will be less scary because you'll know what to expect.  Sending my thoughts your way.

Yes we have a nurses line to I called Monday after the bleeding started, another nurse called again today to check in I told her the bleeding was more, like a period bleeding she said to continue to hold my apixaban and if dr had anything else to add she would call me back.  No word yet so for now I'll just keep watching it. Kind of feels like ascites discomfort again.

@Meinvan I too am sorry you are dealing with so much in addition to your infusion and recovery. As @BennieTBear said, use your 'helpline'. I had one too, with oncology nurses available 24/7 and I called A LOT! Especially following my first two infusions. They are there for you. Do not hesitate to call. No question is too small or simple. I do like that a nurse called you to check in. That's a positive sign on the support you have available to you however, If you are still worried, called them again. I remember calling once at 2am. Got a wonderful male oncology nurse who spent about 15 min on the phone with me. He listened to understand and he really helped to calm my fears. This is your experience and if you are worried, you pick up that phone!!!

I'm thinking of you and hoping each day will get better.

@Meinvan  Sounds like you are navigating the system to get the answers you are looking for. Good for you. You have had multiple challenges on top of your journey as well. It can be overwhelming at times for sure. Make sure to ask for help when you need it. Like many of us, we have usually been the caregivers and are not used to doing this so it can seem foreign to us. It is so important to ask for what you need along your journey.  We and our family learns to adapt along the way. This forum is another way to express how one is feeling and to get some answers. Being patient can go a long way.  Take every day as it is and you will get through it. At the time it seems overwhelming and with time it will calm down.  You are doing well with alll that is on your plate. Be patient and take care of you first or you will be unable to help anyone.  Wishing you the best in the days to come with both your home stuff/family stuff and your recovery.  Take care of you!