OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Let's get started! Come and introduce yourself
Comments
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Thanks for reaching out. Unfortunately I experienced complications following surgery, ended up in ICU, and almost died. Grateful to be alive. I’m home now and the healing has begun. I’m struggling with my bowels, but understand that this is normal. I’m still finding it difficult to be up and about, spending most of my time in bed.1
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I have the kindest, most loving and supportive husband taking care of me. He didn’t leave my side the entire time I was in the hospital, hand feeding me and helping the ICU team every step, all of which I’m incredibly grateful.2
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Hi @Sandi6 I am so sorry to hear that. It must have been a very difficult time for all and possibly times you don't recall at all or barely. What is going on with the bowels? I have been given a low residue diet (low fibre) to follow including when to do which phase of it. If you think it would be of any interest or use to you, I will be more than happy to share it with you. Let me know. It may help those bowels and let them rest. The recovery phase is hard and full of small walks and rest. You will get there. Lots of healing vibes being sent your way.
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Thanks Strongwoman! I would appreciate having a look at your low fiber diet. I’m open to anything that might help.0
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@Sandi6 I have attached below the handout I was given. I will do my best to explain so that it makes it easier to follow. As I was in a crisis when I went in, meaning blockage in 2 areas, I remained on the fluid portion for a week. I will start introducing the minimal one in the coming wks and go from there. If I feel after eating/drinking anything that it isn't sitting well, then wait and see. If still bothersome, go back to fluids and see if it resolves itself. Then if doing well and tolerating minimal diet well after a month and feeling well with no symptoms, then I can do the low fibre one. She said I will constantly fluctuate between all of them. It is up to me to monitor my own body. Making sure nothing is more than 2 grams of fibre is key even when I feel my best. My GI system is sluggish so it makes it more difficult for me. She said, some will be fine and can maintain the low fibre one for a long time and others just can't. The biggest thing to remember is this with blockages, if you are unable to pass gas, very bloated and uncomfortable for more than 24 hrs, you MUST go to the hospital for assistance. I know this and why I went straight to hospital this last time. I had too many partial blockages in a short period of time and knew this past one felt different. That is me and my body. I am hoping this helps and I can get back to eating some things. I may look into a juicer down the road but until I can get to the next stage and feel better, I am not up to it
I hope this helps and if you have any questions, let me know. I asked a lot when the Dietician was with me along with the surgeon (yes, I was that close in my crisis) as well as hubby asking questions. Ask away anytime!
Take care 1 -
I was diagnosed with endometroid ovarian cancer stage 2a N0M0 high grade with a p-53 mutation. Before surgery (December 4 2023), I developed a pulmonary embolism and then pleural effusions and was in the hospital for one month pre-surgery. I had a total hysterectomy with bilateral saplingo-oopherectomy and removal of omentum and appendix. I am now due to start chemo with carboplatin and paclitaxel next week. I have been offered 6 chemo cycles or 3 chemo cycles + radiation. I live in B.C. The radiation oncologist told me that a lot of jurisdictions just offer chemo X 6 which is the gold standard. I am not sure why I am being offered radiation and the radiation oncologist wasn't too convincing. Does anyone else have experience using chemo+radiation for their primary treatment? Prior to diagnosis, I was a fit, healthy 62 year old. Thanks.0
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@MOVE23 Welcome to the group. I am saddened to hear all that you have been through. It sounds like it has been a tough journey thus far. You have good questions and some of the ladies may respond a bit later. Please feel free to join in our Teal Thursday chat today at 1pm ET. There may some ladies online then that can assist you.
Do you know why they are offering radiation plus standard of treatment (6 rounds of chemo)? Was that explained to you? How do you feel about it? I would like to say you are hesitant due to your line of questions and that you are not so convinced that the +radiation is the way to go. Is that fair to say or off base? It is so hard, isn't it especially when we look back and see ourselves prior to diagnosis and the state of our health then. So hard to accept what a new norm is. How have you been feeling since having the surgery? It is a big road to recovery and hope you are walking daily (not far) and able to manage okay.
What was that the Radiologist said that made you feel that they were not 'so convincing'? From what I know from other ladies, the chemo effects will be felt quite soon after treatment and radiation treatments take about 2-3 wks before those side effects kick in. I have had the standard 6 chemo treatments but radiation was off the table for myself.
Hoping this helps a little bit and glad you have found us.
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Strongwoman thank you so much for sharing this information with me. I really appreciate it. I made the mistake of waiting 7 days before dealing with the blockage. I’ll get to the hospital for help much sooner in the future, if needed. Between the pain, bowel issues and vomiting, recovery is much more difficult than I expected. One day at a time! Grateful for you and this group.1
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@MOVE23 sorry about your new diagnosis, but welcome to the group! Like some have already mentioned the gold standard seems to be 6 cycles of Carboplatin & taxol either 3 cycles then surgery, or surgery first then 6 cycles. I have heard of 3 cycles for stage 1 but that's about it. I've heard of 6 cycles then radiation but not 3.
Considering the radiation oncologist left you feeling unconvinced I would ask for clarification. Especially considering you mentioned it is high grade. If you haven't done so already, perhaps ask why you can't have 6 rounds plus radiation. A multimodal treatment approach doesn't hurt, but I would be concerned about only 3 rounds of chemo. That's just me, best to seek out a second opinion if need be0 -
@Sandi6 Your welcome. Here is what the surgeon and dietician both told me. If you are having even the liquid diet and are NOT passing gas or having bowel movements within 48 hours, go right to EMERG! If you are passing gas and things are moving then you may be able to manage at home with liquids. I have a SRK (Symptom Response Kit) at home that we use if I call my nurses and they come to put in subcutaneous ports for nausea and pain. They also state that if things don't change within 24 hrs of them doing that, that I am to go to EMERG. Hope that helps and yes, definitely don't wait that long again. I am finding it is taking me longer to recover from these episodes especially having them so close together.1
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Thank you @Strongwoman. I have signed up for the Teal Tea for next Tuesday (B.C.) Both medical and radiation oncologist offered the chemo+radiation but I was not convinced. Neither really explained their rationale behind the recommendation. I am feeling better now after recovering from surgery and then my first ever covid infection. I do walk daily and plan to until that.
@JoanEG Thanks for that info. I wonder if I was offered radiation because my tumour was high grade. Will pursue that line of questioning.
@melissa I will definitely pursue further questioning with the radiation oncologist.1 -
@MOVE23 Your welcome and glad you are getting connected. Your comment to @JoanEG I, personally, don't think it is because of soley being high grade that they may have suggested it. My thinking steers me to location of tumour and possibility of shrinking it faster that way in a targeted area. Or some other rationale warranting radiation vs chemo. Definitely ask questions and obtain answers. My Palliative doctor told me this "if you are fence sitting on a decision you either aren't ready or already know the answer is NO for right now. When you feel it's right you will definite in your answer amd will not fence sit. If not, the answer is NO" I swear by it when making decisions now and if I feel I am sitting on the fence I say no. Hope that helps you too.1
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Good afternoon everyone, I hope this message finds you well.
Our team at Ovarian Cancer Canada has been in touch with a woman experiencing mucinous ovarian cancer who would like to chat with someone facing this specific diagnosis. If you happen to have been diagnosed with this and would be willing to chat, could you please send me a private message and I can get you connected.
Thanks so much, Marianne0 -
My surgeon informed me yesterday that I have carcino sarcoma according to the results from the biopsy. The team is meeting to decide what kind of chemotherapy is best. I gather that the sarcoma is more complicated and rare, so chemotherapy may need to be different than what they usually use.Does anyone know anything about this diagnosis? It’s all new to me, and I’m very curious.0
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@Sandi6 How are you doing with this news? Yes, you are correct that a carcinosarcoma is rarer than the norm and does require some differing treatments. It will be interesting to see what your team comes back with and what they feel the best approach to treat you is. There are a few things that can be done but to do so, it would be speculation and I may possibly get your anxiety up over it all. Be rest assured, the team and who they discuss your case with, will come back with the best possible answers for you and you alone. Once you know what they will be doing, let us know and then other Teal Sisters that have had some similar treatment can weigh in so that you are aware of some of the side effects and/or positives of such treatment.
For me, I will say that since joining the group, this is the first time I am hearing or reading about this but that does not mean that it has not occurred before. From what I read, I would be prepared for the possibility of radiation being thrown out there in treatment protocols but could be wrong. I will be curious to see what they feel the protocol for you will be. Please know we are all here for you and the waiting is the toughest part. Reach out anytime especially if you start to get in your head more than you should. We have all done it and why this group is important.
I will be thinking of you and hope you let us know when you find out more news so we can support you on your journey.
Take care
Tammy 3 -
Thanks Tammy! I really appreciate your response. I’m meeting with my surgeon next Tuesday, so I’ll definitely share the plan. I’m sad 😢 but am very accepting of this information. It is what it is and I will do whatever it takes to be well again. I think you’re a remarkable woman and love how supportive you are. You’re always quick to respond and as we’re all dealing with a difficult situation, that dedication is incredible. I’m grateful for you 😙4
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@Sandi6 Sounds good and we will be waiting to hear from you when you are ready to share. You will have a lot thrown at you, so take your time in digesting it. We will be here when you are ready.
Thank you for your kind words. I am thankful that they help you along your journey. 1 -
@Sandi6 I’ve been following your story, and can appreciate how you are feeling about it all. After a debulking surgery and six rounds of chemotherapy, I was ready to pull out my non-existent hair with frustration as the months dragged on. @Strongwoman is correct about not getting in your head too much. That was a challenge for me! I too, have found Tammy to be both a good listener and a calming influence. Know that you are not alone in your journey, and that we care about you.1
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Thank you so much for sharing. I had my first chemotherapy session on Monday February 5, and it went smoothly. Today I’m feeling better than I have in a year! Feeling grateful 🥲2
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@Sandi6 That is amazing. How wonderful that you feel so great after chemo! It's amazing. You go girl!2
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Hello ladies. It has been some time since I posted here. I was diagnosed Feb 2020. I received 6 rounds of chemo and surgery . I finished treatment on July 23 2020. This put me in NED status, July 8 2024 I had surgery to repair a hernia from my hysterectomy. 3 weeks later I had pain and was sent to the ER . My CT end of May was clear. CT done at the ER found a 3cm growth in my omentum and very elevated CA125. Not sure where it goes from here until I see my Gyne Oncologist for my regularly scheduled appt on Friday. I have so many fears and anxiety over this.
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NovaScotiaGirl, please don’t get worked up. Until you know, it’s all just speculation. Just breathe in … breathe out … relax. I’m about 6 months behind you and on a similar trajectory. All I can do is breathe & relax. You’ve got this. -W
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@NovaScotiagirl your anxiety is normal I’m sure every single one of us can relate to how you feel. Friday is not far off and you will have answers then. In the meantime you picked the right place to air your fears. In the meantime do as @WEMK suggests and just breathe. I have a sticky note on my mirror that says “Chin up, shoulders back and breathe…. You’ve got this”. Strength and positive energy coming your way.
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@NovaScotiagirl sorry to hear of your possible reoccurrence. Hang in there and stay strong. Sending prayers 🙏🙏
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It is scary when you get those results and your anxiety is understandable. So much of life is out of our control. Two months ago I found out about my second recurrence. My CA125 markers climbed very high, very quickly and my cancer is now advanced. I'm starting chemo this Friday and I am nervous about the side effects. This will be my third time doing chemo. I'm taking one day at a time and doing enjoyable things while I can, and yes, breathing and mindfulness helps. You are stronger than you think. Sending you best wishes.
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I woke this morning to see that we have a member who is struggling right now and found this fitting for herself, myself and many others I imagine. @NovaScotiagirl Know this, you are not alone and that is evident from the posts that appeared following your post. @WEMK and @Hobnob seem to be right alongside you in a similar journey. None of it makes your news less impactful for yourself but can let you know you walk beside others as you do so.
To be scared, and have the fears and anxiety are all normal especially as you had been enjoying a journey that included NED status. When we are in that state, initially it can feel false and unbelievable but then as time goes on, we begin to believe it is true and start to feel and do things that go along with that. Our attitude towards our outlooks change and we may even begin to make plans for the future. Ones that we may not have looked at otherwise. If there is nothing I have learned about living with this disease no matter the state one is in is this, it rules and we are the ones that must learn to adapt to what is happening to our bodies. We can do this with acceptance of what is or we can do this fighting everything that appears and become angry at it all. When a reoccurrence happens it is like ripping a bandaid off and it hurts. For whatever reason (not known to you yet) your body presented with something that required medical attention and in doing so, they found the nodule on your omentum and subsequent elevated CA 125 level. Not what you or anyone else was expecting to find to say the least but is the usual for us living with this disease. We feel good, something triggers us to get something checked out and we find out that we either have cancer, it has reoccurred or that it is in an advanced stage. I am hopeful that yours has been located and is early as far as growth and where your CA 125 levels may be sitting. The other news is that they should have some tools in their toolbox to come up with an action plan to start treating what was found. It will then be up to you to decide if that will align with where you are at with quality over quantity and how you want your journey to continue. Weighing out continuing with treatment, doing nothing or asking about any alternatives are all within your power of choice and outcomes. None of this lessens the emotions that come with it all until you receive some answers. As we sit in the "unknown" our minds can take us down many rabbit holes. Dr. Google is NOT our friend and we can feel fairly powerless and sometimes even defeated before we receive our answers and what our new journey may look like.
Within your power is finding ways to fill your days so that your mind and body are occupied and not hyper-focusing on outcomes. Going into treatment again may not have been on your radar especially this early and coming to terms with that will be a hurdle to overcome. I think now how fortunate you are that they did find this and that it didn't sit there unnoticed growing until it got to an advanced stage like it does for so many of us. Perhaps a standard of care treatment will be in order, side effects minimal and you will be on the other end of this before you know it. Up until Friday, find some things to enjoy for yourself and with your family/friends. The results will present themselves on Friday, a discussion will take place and you will come up with an action plan together. A reset will have to happen in your life as you navigate this new development and your family and friends will rally around you once again. The emotional/mental part that will go with it is inevitable and that is what we your OV Dialogue family is for. Vent here and get out all that is in there good or bad. Thank you for sharing and being open about yourself and what was found instead of keeping it inside and trying to deal with this alone. For we are all in this together!💕
@WEMK You mentioned you are on a similar trajectory. Do you mind sharing what is going on and where you are at with your own journey? Did something get found and you are now in treatment? Or are you monitoring something that was found and waiting when it may be time to start a treatment protocol? How have you been feeling in the meantime? Where are you in your treatment protocol (like how far into it) and how are you managing side effects etc? What is the projected outcome once treatment is completed and how do you feel about it? Have you had to change anything major like stop working etc due to the latest development? What keeps you going day to day during this period of time especially the days that are hard when one isn't feeling well? I am thinking of you and will be here for you if you want to share more about your current journey and state of mind that goes along with this all. 💕
@Hobnob I am sorry to hear of your latest reoccurence. It sounds like action has been taken fairly quickly and you will begin treatment this Friday. Is this a standard of care treatment or a trial that you will be doing? What are they saying about this latest reoccurence and outcomes for you? How are you doing with it all? Shocking of course when we find out initially, then the emotional garbage and "what ifs" that go through our heads and then finally acceptance of what is and where we go from here. How did it go with telling family/friends about it and were you in any NED status when you found out or in a monitoring stage? You are nervous about side effects from chemo, is that from past experience and have you discussed with your team ways to navigate them as they appear? One good thing from having had chemo before, you do know what is normal responses and what aren't, can prepare at home better for when one doesn't feel well and speak with your team quickly to hopefully head off the worst of the side effects the best you can. Thankfully treatment is an option and not off the table for you. That in and of itself is difficult to wrap one head's around too. I will be thinking of you this Friday as you begin your new journey and wishing you minimal side effects as you continue on your journey. 💕
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Thank you. All of you for your words of encouragement. With my first diagnosis I turned to my creative side and started sewing quilts. 4 years later it is still my passion, it take me out of my anxiety while I am doodling a new pattern or dreaming about which fabrics I will use. While I was NED I dreaded this day , knowing with OC the free cells could raise their ugly little head at any time. My worst fears have come true and I am very emotional with the unknown. Friday is not far off abd I am being kept busy by my wonderful friends however it doesn't stop the terror that keeps me awake at night. Fingers crossed , I tell myself it's going to be ok, you have been through this before and you will get through it again. Many thanks to this group of brave, fierce warriors.
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@NovaScotiagirl I’m so sorry you’re struggling. Completely understandable and valid. Not sure what your plans are for after your appt on Friday but practice self care and compassion for yourself regardless of what happens. Your teal sisters here are here to support you and many “get it”. I was diagnosed 10 years ago with stage 3C primary peritoneal and did chemo and surgery for a year but had growth a few years later. I turned down chemo for it since. Trying to live my best life without going through that again.
My name is Nadia and I live in Dartmouth, NS if you ever want to talk or meetup. Sharlene, our regional director for OCC has been amazing supporting us and helping organizing small get togethers with teal sisters. We are having a very small gathering at my house this Saturday if you would like to join us. Please reach out hilliernadia@hotmail.com. Having those that can relate to what you’re going through helps so much. Take care
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