English Community

 View Only

Log in or create an account to engage on OVdialogue. 

Expand all | Collapse all

New here

  • 1.  New here

    Posted 03-15-2025 22:08

    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.



  • 2.  RE: New here

    Posted 03-16-2025 09:25
      |   view attached

    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.  




  • 3.  RE: New here

    Posted 03-17-2025 13:10
    I love inspiring words and I am collecting them in a watercolour journal. Painting is one of my escapes, especially with a group at a local arts centre in Ailsa Craig, ON. 
    Two favourites : 
    "You never know how strong you are until being STRONG, is your only choice"
    " I am not a victim of my life. What I went through pulled a warrior out of me and it is my greatest honour to be her "
    We are warriors,  even when fear is part of the journey. We fight on !
    Thank you for sharing your lives.
    Hugs




    Sent from my Galaxy






  • 4.  RE: New here

    Posted 03-17-2025 15:26

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




  • 5.  RE: New here

    Posted 03-17-2025 17:42

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




  • 6.  RE: New here

    Posted 03-17-2025 21:00

    ❤️




  • 7.  RE: New here

    Posted 28 days ago

    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.




  • 8.  RE: New here

    Posted 03-16-2025 12:14

    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.




  • 9.  RE: New here

    Posted 03-16-2025 12:31

    Oh and Happy Birthday @Meinvan




  • 10.  RE: New here

    Posted 03-16-2025 12:40

    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.




  • 11.  RE: New here

    Posted 28 days ago

    HAPPY BIRTHDAY @Meinvan




  • 12.  RE: New here

    Posted 03-16-2025 19:49

    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.




  • 13.  RE: New here

    Posted 03-17-2025 17:41

    @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 .




  • 14.  RE: New here

    Posted 28 days ago

    @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.




  • 15.  RE: New here

    Posted 27 days ago

    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!  




  • 16.  RE: New here

    Posted 25 days ago

    @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.




  • 17.  RE: New here

    Posted 10 days ago

    @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!




  • 18.  RE: New here

    Posted 30 days ago

    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.




  • 19.  RE: New here

    Posted 24 days ago

    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.




  • 20.  RE: New here

    Posted 23 days ago

    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.




  • 21.  RE: New here

    Posted 17 days ago

    @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!




  • 22.  RE: New here

    Posted 14 days ago

    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.




  • 23.  RE: New here

    Posted 13 days ago

    @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!!!




  • 24.  RE: New here

    Posted 13 days ago
    How frustrating it us to find out the diagnosis! When I first met my gyny oncologist surgeon, he said that he was 99% sure I had OC, but that couldn't be confirmed until biopsy was done. I had 2 options  a) come back and do external biopsy or b) full debulking surgery with port inserted to abdomen, then 6 rounds of chemo to follow. I chose b) because I was so sick and in pain that I knew I needed action. CT had confirmed masses and a cloud of cells in my peritoneal already. As scary as it all sounded, I wanted action that was a strong fight. Staying nourished, especially with protein ahead of surgery was a challenge with little appetite, nausea and weight loss. However, you get into battle mode and do whatever you can.
    I am glad you are taking action. Once recovered from surgery ( 2 weeks in hospital plus another week, 6 days later due to blood clots) I felt sooo much better. Fortunately,  chemo wasn't too hard on me, although one was adjusted to lesson the neuropathy in my feet. Hair loss of course. My scalp did hurt prior to the big loss. I shaved most of it off to avoid dropping hair everywhere. Missed my eyelashes and nose hair filters though !! Who knew it was so needed !!
    Sending you lots of positive energy to apply to your battles ...everyone !
    CT coming up May 1st. We are obviously not statistics, as many sisters have proved them wrong !
    Bravo �� 



    Sent from my Galaxy






  • 25.  RE: New here

    Posted 13 days ago

    @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.




  • 26.  RE: New here

    Posted 13 days ago

    "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!




  • 27.  RE: New here

    Posted 13 days ago

    💗




  • 28.  RE: New here

    Posted 6 days ago

    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.




  • 29.  RE: New here

    Posted 4 days ago

    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!




  • 30.  RE: New here

    Posted 4 days ago

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




  • 31.  RE: New here

    Posted 3 days ago

    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.




  • 32.  RE: New here

    Posted 3 days ago

    Thank you for the support 




  • 33.  RE: New here

    Posted 2 days ago

    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.




  • 34.  RE: New here

    Posted 2 days ago

    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!  




  • 35.  RE: New here

    Posted yesterday

    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.




Log in or create an account to engage on OVdialogue.