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).
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Comments
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@flory
My situation was a bit different, but I would think that a referral from your oncologist would do the trick.
My referral was via the PMH trial oncologist - my oncologist was on board and would have done it if I’d asked her to.
Also, if you have an idea of who you would like to see at PMH, you will have to ask for that specific referral. The PMH oncology triage will call you directly to confirm your appointment time and which oncologist your appointment is with. I think they book you in with the first available oncologist. If you have a specific oncologist and the appointment is not for that person, no worries, they will accommodate your request for the first available time for that oncologist.
I just went through this process and am seeing the PMH oncologist tomorrow.
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Thank you for your response. I do not know who I should see at PM. I guess I need to do some research. I don’t see my oncologist until Sept 16 so I have time to figure that out. I feel a bit worried about asking her for the referral. Not sure why? I think I’m just overthinking it. Thanks again :)
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@Hooodith @CrazyCat I have been reading your posts and am very happy that you two will be able to meet up soon and chat further on it all. I wish you the strength and courage to discuss any outcomes with someone new and/or set up an appt with someone new @Hooodith It sounds like you need and would welcome a change in your health care team with gentle encouragement. I would like that for you instead of all the feelings that you experience and don't feel supported anymore. When you are ready to share about it all, I would love to hear what you did and how it all went. Thank you @CrazyCat for all your words of encouragement and for being able to meet up in person. Sometimes those are wonderful visits. To actually physically see someone else and to meet in a location that is mutual to both parties can be very enlightening and uplifting.
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@flory Thank you for reaching out and asking a question that is weighing on you. I don't think there is a wrong answer to it but one that perhaps you are more comfortable with. I, personally, and have asked my Onc for the referrals to other facilities depending on what it is I am after. Meaning a trial or med I am looking to trial. The Onc has always been open and sent along the referral knowing they could not facilitate the request on their own. I know my Palliative Doctor is there for symptom management on a day to day basis so that is not something I would ask them. My Family Doc sits in the background, receiving all info coming in and I know I could go to her if I felt the need.
So, it truly comes down to your comfort level and who you think on your team will be the vehicle to get you to where you want to go. If the Onc is your best bet to make the referral, then have the conversation with them. Sometimes we can be surprised by what input they have and they are more than happy to refer you along to someone who can better assist you. Sometimes their toolbox gets empty and they welcome any suggestions you may have found. So, ask yourself what outcome you would like, why and what you are most comfortable with. I am sure your team will help you to facilitate the referral and wish you the best when you get that far. Only thing you have to do is, have the conversation and be ready for whatever discussion comes from it. I wish you the best! Keep us in the loop and how you make out.
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Hello,
I’m new to this forum and not sure if I posted an introduction yet. I started the process of getting diagnosed in May 2024. I had been experiencing recurring constipation for a couple of years but it was put down to irritable bowel syndrome. I wondered at the time if there was a connection to starting HRT (Premarin and medroxyprogesterone). I was also starting a trial of ADHD medications around the same time. I had a normal colonoscopy. An ultrasound at the time did show an ovarian cyst but described it as benign. An ultrasound in May showed a complex cyst that was about 7cm x5cmx4cm. The Dr that read that suggested a follow up in a month or six, I can’t remember which. By that time I was experiencing consistent vaginal bleeding and a burning tearing pain in my abdomen so my GP sent me to the ER a week later where I was properly diagnosed, sent for MRI and CT scans.
I had a successful debunking surgery in June which only took 2 of the predicted 4 hours which I hope is a positive sign. However it is stage 4 high grade serous cancer. I just completed my 4th cycle of paclitaxel and carboplatin and it’s not fun but I’m tolerating it pretty well.I’m grateful to be here and for all of your posts. It is so helpful to hear your experiences and see answered to questions I didn’t know I had.
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@mcb good morning and welcome! Thank you for sharing your story. I’m sure it will be a familiar one to many of our teal sisters. OC is such a sneaky b!tch. It manifests itself in ways that seem to have nothing to do with our ovaries leaving us to wonder what might have been had we been diagnosed at an earlier stage. I was diagnosed stage 4 high grade serous in August 2023. I had 6 rounds of chemo (paclitaxel and carbo) followed by surgery (removed all the things plus debulking then 2 more rounds of chemo. I am currently stable and am very grateful for all the support and knowledge this site has provided. My mantra from the beginning has been “I may have been given a cactus but that doesn’t mean I have to sit on it!” Enjoy your weekend and thanks again for introducing yourself and sharing your journey.
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@mcb welcome to OV Dialogue. I hope that you find this forum helpful. Since my diagnosis last year, I found this group to be a lifeline in so many ways. @Strongwoman reached out to me immediately and helped me feel prepared for surgery. It helps to talk to other people who are going through the same thing. I use it seek answers to the many questions that have cropped up since my diagnosis. Like you, I was experiencing occasional constipation, abdominal discomfort and also frequent urination for a period of time. An ultrasound (and then a 2nd transvaginal ultrasound) at the emergency department revealed a 12cm tumour. I had debulking surgery last year, and began chemotherapy a month later. Glad to hear that you are tolerating the carboplatin/paclitaxel reasonably well. For me, losing my hair was upsetting, but I bought a couple of fun wigs. How many treatments are you getting? How are you feeling about it all? It’s a lot to process both mentally, emotionally and physically. Do you have a good support system?
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Hi Teal sisters
I think our collaborative book should be called “The Sneaky Bitch” Thanks, Joan, I love it!
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Hi everyone I would like some support with my diagnosis I am currently 20 years old. In early July I had a large 20+ cm cyst on my left ovary. At the time the doctors thought it was as benign. But the pathology came back as Mucinous Ovarian Cancer. I had another surgery last week to remove my left ovary, appendix and omentum. During the surgery my lymph nodes were enlarged and they took them out as well just in case. Just waiting on the pathology right now and I’m just super stressed. I would love any advice :)
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@itzwhatever good to meet you. You have found a wonderful supportive group here. My journey is very different than yours, i can confirm we all feel stressed while waiting for results. I wish you the absolute best outcome. I ordered a book from this site, it is called "understanding Ovarian Cancer" this may be a good tool for you to ask for also. This group has many supportive tips and no shortage of support and comfort. So glad you have found us.
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@mcb Welcome to the forum. This is a good place to get support and just share how you are feeling. That's great that there you were treated very quickly from the time of diagnosis, and also that the surgery was successful. I also had carboplatin and paclitaxel the first time doing chemo. I'm glad you are tolerating it fairly well, and the side effects will wear off once you are done. I was diagnosed three years ago with stage 3 high grade serous ovarian cancer. I had the big surgery, then chemo (carboplatin and paclitaxel), then a recurrence and chemo, and now a second recurrence. I'm in the middle of my third time doing chemo. Cancer certainly changes you as a person, but it's still possible to live a deeply meaningful life and value the blessings of each day. You are stronger than you think. All the best with your treatment.
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@itzwhatever Hello and welcome to the Teal Sisters. I am the Moderator for the site.
I am saddened to hear of your recent diagnosis at a young age. No matter what our age is, hearing we have Ovarian Cancer is a shock and brings with it all kinds of emotions including anxiety. How could it not? What you are experiencing is normal and most of us have a lot of anxiety as we await results. Know you are not alone in this. Your findings will determine what course of action will be recommended and your journey will continue. All I can stress is to stay off of Dr. Google until you have more definitive information. It will only take you down dark rabbit holes that lead nowhere.
When you do obtain more info, you can come back to this forum and type in key search words to see/find what others have had either experience or info on the subject to help you make an informed decision.
In the meantime, be kind to yourself and find ways to let yourself heal from your surgeries and get your strength back. If there is question that is really plaguing you, go ahead and ask. We may be able to help ease your mind with an answer if we can. Your journey is just beginning and for now is full of unknowns for you. That can be so wearing on oneself in so many ways. As your questions about your journey and where it is headed are answered, your mind will slowly ease. You will still have questions but they will become more focused to your specific case and diagnosis. Know we are all here for you now and in the future.
Let us know how we can help you now to ease your mind a little.
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@itzwhatever Sorry to hear about your diagnosis, and you are so young. That's a big surgery and it takes time to recover from that first. Will you be getting chemo or radiation? It is scary while waiting for the pathology results. I was diagnosed three years ago with stage 3 high grade serous ovarian cancer. I had the a total abdominal hysterectomy, then 6 rounds of chemo, then a recurrence and 6 more rounds of chemo, and now a second recurrence. I'm in the middle of my third time doing chemo.
This is what I would suggest: accept your diagnosis and condition - the sooner you do that the easier it becomes to then make positive choices to help yourself on this journey. Get some information on ovarian cancer, but don't do it via Dr. Google. Your hospital might have a resource library. I found these books particularly helpful (in this order in my journey):
"By your side" (the free book from Ovarian Cancer Canada)
"100 questions and answers about ovarian cancer"
"Picking up the pieces"
"Hope for the best, plan for the rest" (for anyone with a life changing diagnosis) - this book is great because it shows you how to stay both hopeful but realistic, and how to communicate with your doctor and advocate for yourself
Write down questions that you have for your doctor, and take notes on the answers. Keep all your medical documents, papers etc. in one folder or place to stay organized. This forum is a good place to get support and share how you are feeling. Do you have a support group around you? There are support groups online and informative online webinars e.g. Ovarian Cancer Canada, Wellspring, maybe other cancer support groups in your area. Also groups like Wellspring have programs on things like mindfulness, exercise, eating for cancer, creative groups etc. For me, participating in some of these was a way to empower myself to get info and do things to help myself, because with cancer you lose so much control of your life, especially once you are on the medical treatment treadmill. I love the exercise program that I'm in. Staying active and doing exercise while respecting my fatigue limits gives me more energy and helps me to stay positive. These are suggestions from my experience; other people will have a lot more to add. It is possible to live a very meaningful life while having cancer. I found that taking it one day at a time, and focusing on whatever I was doing at the time (e.g. chemo, or recovering from chemo or surgery, or accepting a new diagnosis) instead of jumping ahead to the future helped me by making it less overwhelming. I hope the pathology results are better than anticipated, but even if they are not, you are stronger than you think, and people are here to support you.
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Hello @mcb and welcome. Saddened to hear of your recent diagnosis and journey. Sounds like you may be more than half way through your chemo round. How have you been feeling with the chemo?
HGSC is the more common type and quite a few of the ladies share the same diagnosis. There is a wealth of info on this site from them all so it doesn't surprise me that so many of your questions may have been answered already. Even ones you didn't think you had. But if there is anything you are wondering or want to discuss, go ahead and ask. I am positive it will be well received and answered by those that can.
I am the Moderator for the site. If you have been following threads on here, it is a place to ask the questions and be open about how you are feeling. A place where one doesn't have to put on a face for family or friends and can be open about how one truly is feeling physically, mentally and emotionally. A community of others that have walked your walk and get it. So go ahead ask for what you need.
In the meantime, I hope you see the community in this forum and that we are all here for you. Good days and bad. Thank you for reaching out and sharing your story with us. I hope to see more posts from you in the near future.
Remember to take care of you!
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@Hooodith It warmed my heart to hear what a wonderful and fullfilling time you had at your grandson's wedding, Hooodith. It is so important that we live our lives to the fullest and build happy memories for ourselves and others. I hope your chemo goes well tomorrow and you don't suffer badly with side effects. I think you said you will be having carboplatin? If so, I found it, on it's own, to be not too hard on me, much better than the first time through with carbo and paclitaxol. Your timing to get together works well for me, as I have a friend coming from Saskatchewan for a few days. She arrives this Tuesday and stays until the following Monday, the 16th. I have some appointments that week but I'm sure we can work around them. Let's try to connect by next weekend to make a plan for the following week. Take care!
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@itzwhatever welcome to the group. You have come to the right place for support and information. Hoping that you get the pathology results soon, and that your stress level decreases once you get some answers. From what I’ve learned from the book “Understanding Ovarian Cancer” published by Ovarian Cancer Canada, “about 5% of epithelial ovarian cancer cases are mucinous tumours which are large masses that are typically diagnosed at an early stage. Removal of these tumours is associated with a good prognosis”. Hoping that this information may help ease some of your anxiety. The physical stress of undergoing surgery plus the emotional upset of finding out you have cancer is very overwhelming. I think that we can all relate to how you feel. Just know, that you are not alone.
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hi everyone.
I attended my first walk of hope yesterday and was recommended to check out this group to connect with some others. I’m 32 years old and I am fighting stage 4 mucinous ovarian cancer. I first had cancer 2018, stage 1a, didn’t have to go through any treatment as after my debulking surgery everything was negative. I was getting frequent check ups of my remaining ovary and everything always came back negative. Spring 2023 I started to have this cough..had it checked out and did a CT and I had spots all over my lungs and turned out to be my cancer came back or was slowly growing this entire time and no one knew cause my ultrasounds of my pelvic and abdomen were always clear and still are! I’ve been doing chemo since January…11th one coming up this week and everything so far is stable - nothing is growing or spreading so I’m so thankful for that. I think I just want to talk to other people who understand how I’m feeling and get it. I have the absolute best support system but I just feel alone cause no one gets it?1 -
@mazupardo sorry to hear that you’re going through this. Can I ask what combination of chemotherapy drugs you are on? You’re right, many people try to be supportive but they simply don’t get it. One thing I learned from a six week Zoom group that I was in was that you gain some friends and lose others. It takes a very emotional and physical toll on the body. I was pleasantly surprised by the people that did step up for me, and also rather disappointed in the behaviour of others. Surround yourself with people who love and support you. This is a good group to talk about how you are feeling.
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@HorseGirl I’m currently doing carbo and taxol! I go every 3 or so weeks for it. It is difficult for sure, everyone around me has been great but then I also feel like I can’t talk about my feelings out loud, my fears and what I’m battling with mentally because I know no one else will get it and of course sometimes they get mad at me because I shouldn’t be talking negatively but it’s the reality of the situation right. In all fairness, I do also think it’s my own fault because I tend to avoid thinking about my cancer and it’s probably bad but it’s like if I don’t think about it, I can pretend it’s not happening lol
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@mazupardo welcome to this group. You have come to a great place to find support and people who “get it”. While our journeys may vary we share so many questions, hopes and fears in common that there is always some one here who will say “yes, I get it!” I have been part of the group for a year and amount of the information and support I have received has been amazing.
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@mazupardo Oh please ignore the people who get mad at you for talking negatively. You have every right to be negative. You have cancer!! Yes, there will be positives along the path of your journey, but they cannot be manufactured. Express your anger, your sadness, your despair, your confusion, your bitterness, your fears, to those who can sit with you and listen. Write about them here, we have all been there and we get it. Avoiding thinking about it is called denial, and is a protective mechanism our minds use to give us time to absorb this new reality. Allow yourself to deny reality, your mind will know when to gradually let the little bits of truth in, soon enough. I will be thinking of you, and my hand reaches out to you.
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@mazupardo if people get mad at you for talking about your cancer, then talk to us. It’s cancer, for crying out loud, and it’s no walk in the park! When I first found out last summer, I had a total meltdown…I cried a lot and was ready to sell my horses too. I even looked into medically assisted dying! My friends said that I was talking like my life was over. It wasn’t real, cancer was something that other people got, it couldn’t possibly be me. And now I know that my life isn’t over, it’s just different. You will adapt, because the human spirit is resilient. There have been changes for all of us. I don’t have the energy and stamina that I once did. My hair is now short and gray, not long and brown with blonde highlights (it was dyed haha). Chemotherapy was very debilitating and scary at first for me. I had carboplatin/paclitaxel too, and it kicked my butt! Losing my hair was weird, so I bought a couple of wigs. Got some great makeup, and managed to look okay. Used a walker to get back and forth to the barn, huffing and puffing because I felt so weak. I’m amazed that you are on round 11!! Wow! I was toast by round 6. There’s nothing wrong or bad about not thinking that you have cancer. I do that too! As @Hooodith said, it’s your mind’s way of protecting you. OV Dialogue is a place to speak about whatever is on your mind. This is a safe space to talk about not only your fears but also your triumphs. You are in my thoughts.
P.S. This time last year I was 6 weeks post-debulking surgery and had just started chemotherapy. I was a MESS.
Today I drove a mini pony and rode my horse. Was it like it used to be? No! But I did it anyhow. F U cancer!!
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Hi @mazupardo … I've been reading through everyone's comments including yours of course. You are COMPLETELY entitled to your feelings. You are allowed to be sad, mad, glad, enraged, frustrated, negative, happy, annoyed etc. You are the one with cancer. You get to be whatever you want to be. I'm thrilled you are surrounded by so much support (I may be the one at the same walk site on Sunday, who mentioned this forum). I saw the team around you. While they boost you up, they cannot truly relate to what you are going through. The individuals in this forum I believe, will provide that additional support.
Since joining this forum I have been supported and learned so much from this group, a group that completely gets it!!! I have high grade serous, stage 3C. I had 13 tumours in my abdomen. I had major debulking surgery in February ('24) and completed my six rounds of chemo (pac/carbo like you) in July. I'm BRCA2 positive so am now on Lynparza maintenance drug. My journey is NOT the same as yours however I have highs. I have lows. Some mornings I awake and totally forget I have cancer. Then I walk by the mirror and see my reflection with no eyebrows and a scrub of hair. Reality sets back in. As @Hooodith said so well, "…allow yourself to deny reality…". Be and feel what you need, when YOU want/need. Just know that in this forum you are surrounded by many arms boosting you up. So feel free to lean in as often as needed.
Sending a hug your way.
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Hi @mcb. Thank you for sharing your story. I have stage 3 high grade serous. I had 13 tumors removed through debulking surgery in February. The oncologist felt the surgery went very well. I started six rounds of pac/carbo chemo in March and completed them in July. Had some white blood cell issues so had to inject Lapelga for my final three infusions to boost the cells. I'm BRCA2 positive so am now on the Lynparza maintenance drug. It brings it's own side effects which I'm managing.
How many rounds of chem will you be taking? I agree, it's definitely not a fun process. Have you experienced any peripheral neuropathy? If yes, there is a wealth of information on this site on how people have dealt with that.
I love your comment on, "…hear your experiences and see answers to questions I didn’t know I had." That is a perfect synopsis of what this forum can be. I spent time looking through the various discussion topics/threads and was amazed at what I learned from other's posts. We are glad to be able to provide support through your journey.
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Hi @mcb … I just realized you had said in a separate thread that you did ice therapy which was offered at your oncology centre. I'm so glad that your nursing team were so supportive on this and thrilled you had minimal symptoms.
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@mazupardo. Thank you for sharing your story. Quite dramatic. I am 54y, was diagnosed with clear cell OC in Feb 2023 stage 4. Carbo_Paclitacel +Beva after surgery, recurrence in spleen in Feb 2024, repeated surgery in June and now on my 2nd round of teh same carbo+paclitacel and Beva (on compassionate use as CCOC usually don't respond well to the standard chemo). I am pretty tough. I need to survive for my still young children (late bloomer) as long as possible. I work during chemo. I now started to bike to work again as well - new study: exercise lessens the chemo side effects. As I said, I am tough. But I break once in a while . Cancer and cancer survival is always on my mind. I do enjoy the days and focus on the things I am doing, but cancer always comes back in my mind every day. Sometimes just to say good night, and sometimes to keep me sleepless and worried. Yesterday, I broke down in despair as my chemo cycle was delayed by 2 weeks because my last sensitivity reaction to carbo was neither documented nor reported to my oncologist, and now I need to wait until I get desensitized (instead of already doing it 3 weeks ago, when it happened). I worry about delays, worry about responding even more severe to the carbo, but the main reason why I broke down, was that all my plans for the next week (mainly commitments for work) have been destroyed. The control over my life, that I am fighting so hard to keep, was yet, another time destroyed. I left the Oncology office, sat in the hallway and just cried.
I pull myself up , motivate me again, do it all over - but cancer f sucks.
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thank you all for your words and advice. i know all of our journeys are different and everyone deals with things differently, but in a weird and i dont want to make it sound bad but its comforting to know and have other people who can relate to my feelings…and also just being able to talk about how i feel! a huge part of the whole "denial" aspect is that i also feel like i need to show people around me that im strong when in reality, im really scared but i dont want them to know that.
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@mazupardo There is a great difference between acting as if you are not sick, to others, and denying your illness to yourself. Sounds like you are acting healthy for the sake of others’ feelings. This is one of those choices we make, for instance, to spare our children scary knowledge, or to protect an important relationship. Hard choices, only you can make…
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thank you everyone for the advice and resources I’m so glad I found this community ❤️
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