Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
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).
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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Hi I’m Maggie
I am 66 yrs old Mom to 4 girls and a husband with dementia. I finally decided to introduce myself. I started feeling sick about 8 weeks ago. Went to see my GP. I was having bloating , diarrhea, felt full all the time, lost 10 lbs and a lot of pain in belly back and pelvic area. Me and my doc thought I might have diverticulitis. She did a ct scan and when I went back to see her she had a funny look on her. She says you do have a bit of diverticulitis but nothing to worry about. HOWEVER, the scan shows growths on both ovaries and it looks like you have Ovarian Cancer!!! Some series carcinoma.
I was by myself and just thrown for such a loop. I was devastated! So she sent me in a week to see Dr Monique Bertrand at London health care center.. her intern told me I would have a full hysterectomy and then some chemo. She reviewed with me that the cancer may not have started in ovaries but somewhere else!! Then she
Did a complete internal exam was looking for a tennis ball growth!! She couldn’t find it or any growths! So now she’s telling me I may NOT have ovarian cancer but will draw blood markers to see. I was an emotional wreck when I left!
Monday the CA125 marker was 1111 so now they are doing anMRI SEP 8. So that’s my story so far!! So glad to have this great group.. HE
I was by myself and just thrown for such a loop. I was devastated! So she sent me in a week to see Dr Monique Bertrand at London health care center.. her intern told me I would have a full hysterectomy and then some chemo. She reviewed with me that the cancer may not have started in ovaries but somewhere else!! Then she
Did a complete internal exam was looking for a tennis ball growth!! She couldn’t find it or any growths! So now she’s telling me I may NOT have ovarian cancer but will draw blood markers to see. I was an emotional wreck when I left!
Monday the CA125 marker was 1111 so now they are doing anMRI SEP 8. So that’s my story so far!! So glad to have this great group.. HE
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Oh my goodness @maggieb your head must be spinning! But your story is not unusual. Diagnosing OVC can be tricky at the best of times and with the best medical professionals. I had a tumour on my right ovary the size of a huge grapefruit, yet over the years it took to grow, my GP never felt it when examining me nor did I ever feel anything myself. Add to that the CA125 is not a very reliable indicator for us. The results can be very volatile and reactive to all manner of things going on in your system that have nothing to do with cancer. Nor does the score relate, if you do have tumours, to the size of the tumours. My CA 125 was only 900 with a tumour the size of mine, yet in recurrence my CA has been as high as 8000 but my tumours less than a millimeter in size. Go figure, eh? And finally the CT can sometimes be confusing. When I had my cancer surgery they expected me to be riddled with tumours beyond the primary big one and so much that they had me all marked up to have part of my colon removed. Yet when they opened me up there was just the one primary tumour on the right ovary and a very small one of the left ovary. Significantly less than expected.
So what I'm saying is to let the tests play out and paint a more accurate picture of what's going on and from that discuss treatment options with your oncologist. But in the meantime, a few suggestions since it's important to know what questions to ask when you meet with her again after the MRI. If you haven't already go to the Ovarian Cancer Canada website. https://ovariancanada.org It's chock full of information on this disease. And even though you still don't know if you have OVC, order their booklet By Your Side. It is a guide for the newly diagnosed and has a lot of information that might help you build a list of questions to ask. The booklet comes in both hard and soft copy and you can order it at https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
Hope this helps for now...hope, more so, it's not cancer after all. But if it is, I'm glad you found us and I want you to know we are here for you; to share our stories, provide some encouragement, help celebrate the good news, and be a shoulder to lean on when you need one. Please keep us posted and reach out any time you feel the need.
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fearless, It’s good to know you went through similar problems getting diagnosed. Thanks for sharing your story with me. I am so glad I have found this site. It’s a wealth of good information. I did order the book you recommended and can’t wait to get it. Looks like a good resource for me. My thoughts get frazzled and with this book I can keep track of everything. Thanks again for responding to me and I will keep you informed of my journey
Maggie ❤️1 -
@maggieb. Welcome and thank you for introducing yourself. The diagnosing and wait is the hardest part! Once they help you decide on treatment, its straightforward. I was stressed that I would have to make lots of decisions about what we would do next, but it turned the oncologist kept me on the right track. After all, who am I to second guess a trained specialist. Thats not to say I didnt ask lots and lots of question.
I do not have ovarian cancer. My ovaries where just "bulky". My CA124 500. bloating and pain and weight loss. My tumour was in the peritoneal and small, but because of this, it took longer to get a diagnosis.
When I was diagnosed a cancer friend recommend a journal. I wrote all my questions down and the date for reference. Leave space for answers. Also I taped every conversation with the doctors. It's amazing what you hear the second time. I hope that you will join us on thursday for live teal chats. gayle1 -
Hi @gaylestorm Thankyou for responding to me! It is great to hear other stories of how they get diagnosed. A journal is a really good idea and taping doctor. Sometimes you think you absorb all of it and realize when you get home it’s not the same as what my girlfriend heard or my daughter!! I have my MRI on Wednesday so hopefully will give me some answers 😊 Thanks for responding to me. I am so glad I found this forum. I will try to remember the liveTeal chat on Thursday. Take care❤️0
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@maggieb Good luck with the MRI today. Hope it goes smoothly for you. I just had two, one for my lower back and one for my pelvic region to see if a tumor I have that's pressing on the psoas muscle was the cause of some mobility issues I had been having. Not sure if you're claustrophobic...I am actually...but found just closing my eyes, imagining I was on a beach somewhere, and counting down the time in my head helped me through it. In fact over in no time and the worst part was the awful selection of music coming through the headphones they put on me to block out the noise.
That said, the MRI was more extensive than the usual CT so I was tense waiting on results, either that the existing tumors I had progressed more than we expected or they found new growth that hadn't shown up in the CTs. But, actually got the opposite news...one tumor was still totally stable and the other was continuing to shrink even though I've been out of chemo almost two months now...and nothing new to report. Along with that was the assumption the one tumor was not likely the cause of the mobility issue since it's stable and so tiny..so guess my problem is just good old, old age creeping in!
Yes we'd love to have you join us tomorrow on our regular Teal Thursday. We start at 1pm EST and just chat about anything and everything. Just sign in to OVdialogue as usual and click on the Teal Thursday discussion thread to enter the chat.
Here's to a good outcome from today's procedure!
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Hi Cath, thankyou for remembering my MRI. It went well other than the noise! They gave me headphones but no music on them! I’m not claustrophobic but boy oh boy you could easily become so if you spent much time in there! So happy to hear you got good news from yours. 🎉 Now I just have to wait for my news. It’s awful waiting!! I will really try and join chat tomorrow. Take care, Maggie1
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I forgot to say I got the By You Side book today. From what I’ve seen so far it’s a wonderful resource!! Thanks to ovarian Canada.org!!!1
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Hi everybody. Just thought that I’d update you as to what’s been going on in my world. Had my MRI on Sept 8 and have been waiting since to hear from onc/surgeon. She finally called today after 2 cancellations. I’m happy to say I have a much higher opinion of her now! She was calm, slow, took her time, even tho I kept interrupting her🤣 she say we’ll get to that. Unfortunately the MRI does confirm that I do have ovarian cancer. 2 largishtumours one on each and cysts on my uterus and some fluid. She is also worried about my colon. SO in 2 weeks I see her in London and then have colonoscopy and have surgery on pelvic area etc end of this month!! So I know a lot more than last time I spoke to you all! Hope everyone is doing as well as can be expected 🙏 Maggie0 -
Thankyou @kastoyles yes the more I think about it the more I’m like wow that was a lot to digest!!0
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@maggieb I'm so glad you thought to update us. So sorry it took so long again to get the read out from your scans but wonderful your oncologist made up for it with time and detail and patience. It sounds like you''ve found a good match with her and now there's a treatment plan in place....all I can say about that is how relieved I was once I knew there was a plan.
I do hope the colonoscopy doesn't show any involvement of the colon. It would be much easier to have less to contend with. But it's not unusual that that is the case. At least with the colonoscopy they'll know pretty well what they'll have to deal with when it comes time for you surgery. I didn't have the benefit of a colonoscopy. My CT seemed to indicate the presence of the cancer in my colon or on my colon so when they prepped me for surgery they even marked the area where the ostomy bag would attach temporarily. But surprise, when they got in there there was far less cancer than the CT indicated and nothing on my colon after all ! So nothing with this disease ever seems a given. I'll just hope you're pleasantly surprised, as many of us have been.
Please do continue to keep us posted. Keep that By Your Side handy. (PS: nice picture. Love to put faces to names when we can)
In the meantime you're in our thoughts........
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Thanks Kath for your response! Sorry my picture is so big. Didn’t know what I was doing 😂 I now have a date for my colonoscopy Oct 25 so things are really moving quickly now! Thankyou all for your support! When my head is spinning late at night I come on here and read all the stories. It really helps. Good luck to everyone with your journey. Love Maggie ❤️1
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Thankyou so much Cath. I just got a call this morning that my colonoscopy has been moved to next Tuesday! So things sure are moving! How is pain in your back?0
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Hello everyone! Well a lot has happened since I last updated you all! I had my surgery Nov19 and it was intense. Surgeon told me there was a lot more there than she thought. She told me it was Stage 3 but would discuss later when she got pathology report. So I saw her yesterday. It’s stage3c serous ovarian cancer. It has spread to peritoneal area. She said she wants to do a CTScan of my lungs. I start chemo asap. Carbo/ paxel combo 1 a week for 6 weeks. To say I’m terrified is an understatement but it is what it is. It sure helps to read your stories and know how you have made it through much worse than me. It’s just very overwhelming 😞 but I have great support, a husband , 4 grownup daughters and a best friend. I know I will be fine. Thanks for reading ❤️0
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Hi @maggieb. Am just reading your update. My path to initial diagnosis was similar in that they thought it might be diverticulitis. Ultimately, diagnosed stage 4, high grade serous carcinoma (HGSC). The book By You Side is so helpful! It’s interesting how we are brought here and treatments can be same, or different! I have been through many rounds of the paclitaxol/carboplatin , but once/3 week schedule… surgery.. more treatments.. whoosh! Still on chemo, but on different cocktail now! Oh, and I go the “the spa” every 2 weeks (as I call it because can watch movies uninterrupted with my feet up). I think we are pretty lucky in southern Ontario to have so many options within proximity. I am going to Hamilton. (Live in Guelph). I absolutely understand feeling overwhelmed. Keep asking questions. Writing things down etc. process what you can, and leave the rest for another day if it can wait. Many of us continue to get treatments over Christmas, so please know there is alot of support here for you too and it’s good to connect with each other😀. Someone else can do the dishes!1
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@maggieb thanks for keeping us posted. I take it there was no involvement of the colon. I know you were concerned on that front. As for finding more than they expected, that's quite normal. So is finding less, which was the case with me. But at the end, I too was diagnosed high grade serous stage 3C and with peritoneal involvement. That was in 2017 and now in my 5th year of treatment and still kicking gal. There is so much new out there we are living longer and better in many cases. Two friends, also diagnosed with the same type and stage are still completely cancer free since their surgeries and post surgery chemo. So the journey is not the same for everyone. But even with my recurrent condition it's been manageable. My life is not the same as I'd envisioned but for everything I can't do anymore there are lots of new things I've discovered.
Yes, it's been a whirlwind for you but your doctor has a plan. If you have questions about the chemo please reach out to us here. LOL, if there's anything we have lots of experience with it's chemo. And as ToughAsTeal mentioned, do make sure you have the By Your Side book that Ovarian Cancer Canada publishes. It's incredibly helpful guiding you through this phase of treatment. You can order it soft or hard copy (or both) at https://ovariancanada.org/living-with-ovarian-cancer/newly-diagnosed/by-your-side
Continue to keep us posted. Our thoughts are with you for a successful treatment but in the meantime best wishes for a happy holiday season and for health and much joy in 2022.
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Thankyou tough as teal and fearless for responding! It is so great to hear from women with the exact same diagnosis! The 3c high serous scared me but it’s great you two are still doing great! I’ll let you know how my chemo goes. One question I have is I have always had lower back problems but since surgery my back is twice as sore!! Do you gals have that problem?0
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Oh and yes my colon was clear 😍0
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It feels like so long ago! My surgery was Sept 2020. What I recall was muscle pain/joint paint especially in my hips. I started with my gyne-oncolgist who was also my surgeon. I suppose the CT scans ruled out that anything else was going on in my hips. Ultimately I ended up at physio (didn’t last long - didn’t connect with the therapist - his focus was on people with “real injuries” - yes those were his words).After chemo, we get a Harvey’s cheeseburger for the drive home. It not be a healthy choice, but it sure is a happy one!Keep moving forward😀2
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@maggieb I had lower back pain off and on for years. Generally it was more prevalent when I stopped exercising and my core got weak. That added strain to the lower back. As soon as I spent some time rebuilding my core muscles, the back improved. Then after surgery it flared up again and continues to this day, especially if I stand in one position too long. I get a wave of pain across the lower area and have to sit down to relieve it. But I put that off to a weak core since surgery impacts muscle tone and I have literally done nothing to improve my state.
The only other time I've experienced low back pain is when I've had to take meds to improve my white cell count during chemo when it's dropped too low. Those meds can cause joint and muscle pain and for me it's my lower back and hips that react.
All of that said, any pain or discomfort you experience that is prolonged should always be raised with your oncologist.
Great news about the colon. I know when I was being prepped for surgery they told me there was a very high chance they would have to remove a portion of my colon and even marked me with an X where the ostomy was to be placed. I was so relieved to wake up and find that the involvement of the cancer in my colon turned out to be some kind of shadow on the CT.
Stay well gal, stay positive, and stay in touch.0 -
Hi Fearless! Thanks for your response. I have been on Percocets for years for my back and it is on my list of meds which I’m sure my gyno/oncologist would have read that. Unfortunately when I had my surgery my pain was not controlled adequately because I was used to taking 6-8 percs a day and they were giving me 2!!! I too can only stand a few minutes and have to sit down. I’m in terrible shape physically overweight etc no core so hope to do something about that as soon as I can. Do you think my cancer team will let me continue to take Percocets thru chemo? I haven’t heard anyone else mention Percocets. Thanks so much!🥰1
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@maggieb I wouldn't begin to advise or suggest anything to do with pain meds. That's left to the specialists to determine and your needs and as they relate to treatment. What I might suggest is asking for a referral the pain management team in your cancer centre. They are sometimes a subset of the palliative care unit or just a unit on their own. But they are well equipped to understand your history and make recommendations to support your recovery.
I hope that helps.
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Thanks so much Fearless! I will ask to be put in touch with the pain management team!😍1
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@maggieb. Welcome to our exclusive club! I think everyone has covered just about everything. I just wanted to add that if you have any problems with chemo, dont hesitate to phone the cancer help line. My first cycle I couldn't eat, and nauseous and lost 10 pounds. I thought this was normal. It wasnt and I was given new drugs for the next cycle that made chemo seem like a walk in the park! Keep us updated on how you are doing.1
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Thankyou @gaylestorm I will really remember that ❤️0
