Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 Peer Support Volunteer. 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).
Best Of
Re: Teal Tuesdays - Live Online Chat! (Discontinued indefinitely)
reminder to use the @ sign and the user name - like this @djapj - it will help to notify participants under the topics
Re: Diagnosis
djapj! They officially tested the tumor after it was removed and staged it, but they did not do a surgical staging operation when it was removed. For example, they did not remove lymph nodes for testing or go through my total abdominal cavity looking for lesions. When they know they are dealing with a potential cancer, usually a gynecologic oncologist does the surgery and they do a specific type of surgical procedure. Mine was done just by my gynecologist because they thought they were only dealing with a large fibroid. He was surprised when he opened me up! He called an oncologist during my procedure to get some advice, but he didnt do the entire correct procedure. The only thing my gynecologist DID do was the peritoneal wash that came back negative. When I was suffering more from my adhesions they bothered me the most when I had a lot of gas in my bowels or my bladder was full. It was SO painful at times I couldn't even walk. It would come in waves and I recall once at work I was thinking I might have to pee in my garbage can to alleviate the pain if I wasn't able to walk to the bathroom. Good thing the wave subsided and I was able to quickly walk to the bathroom. Once my bowel or bladder was emptied, the pain subsided. I just noticed the pain was worse when my bowels bothered me since the adhesions were there. I used to have one adhesion around my belly button that would pull something awful when I had a bowel pain. I had a surgery and it was released. I had my hysterectomy 7 months ago now so I am waiting to develop new ones. I already have some from my ovary removal 10 years on the right side. I know its likely adhesions because I don't have anything else there besides my appendix and I go through a checklist in my head about appendix pain to make sure that's not what it is. Any pain on the left side is likely just adhesions. Its good to know anatomy and your own body issues to know the difference. Takes time to understand it all!
Re: Diagnosis
Hi! I too was told I had a "mass" and thought it was a fibroid and after the surgery was diagnosed with a large ovarian tumor. Mine was over 10cm in diameter and a stage 1a. Additionally I didn't need any chemo or radiation and feel like I am waiting for the other shoe to drop, so to speak, since I didn't get an "official" surgical staging by an oncologist. Every little pain and twinge I get I think 'is that a recurrence? Should I call my oncologist?' Ugh! I have always struggled with adhesions too since my first ovary was removed 10 years ago now (due to adhesions and stuff causing excruciating pain). So I can totally relate. Some days I don't feel like a survivor but other days I really worry.....a lot.
Re: Teal Tuesdays - Live Online Chat! (Discontinued indefinitely)
Hi @Sheena178 and @djapj, so glad that you have joined the Ov dialogue, welcome.
Re: Teal Tuesdays - Live Online Chat! (Discontinued indefinitely)
Hi @djapj - we try to meet up here - live, on Tuesdays at 7:00 PM CST - if anyone is around to chat ... as always the site is open 24/7 and we hope you will find much support here!
Re: Diagnosis
Welcome @djapj- glad you were able to get the surgery and some physical relief!
Do they have a followup-plan for you? If you use the search bar at the top right, someone in a previous post mentioned about adhesions.
Thank you for sharing your story and joining the chat site. There are lots of good topics and information sharing from this great community - welcome, we are here to support each other!
Do they have a followup-plan for you? If you use the search bar at the top right, someone in a previous post mentioned about adhesions.
Thank you for sharing your story and joining the chat site. There are lots of good topics and information sharing from this great community - welcome, we are here to support each other!
Re: Diagnosis
Hello @djapj. I really identify with your situation, our details and concerns are very similar. (Although pregnancy was definitely not a possibility at my age!) I’ve had pain attributed to adhesions as well, has levelled off, and while never completely gone it’s very tolerable. Do report it at your follow up though, so a real cause for concern can be eliminated. (I had a colonoscopy, and there was a plan to do a CT if it got worse.) I was Stage 1A with a very large tumour as well, (14 months ago) and although I doubt if a doctor would tell us that there isn’t a “possibility” of recurrence, you’ll feel more secure in your return to “normal” as time goes by.
I completely understand your last sentiment. I feel I’ve been so much more fortunate than most of these wonderful ladies. How can I complain, I didn’t even have to go through chemo? Sometimes I see this site described as “for women living with ovarian cancer” but I’m sure that doesn’t mean to exclude those of us who are optimistic it’s behind us, but remain deeply affected by the journey.
I completely understand your last sentiment. I feel I’ve been so much more fortunate than most of these wonderful ladies. How can I complain, I didn’t even have to go through chemo? Sometimes I see this site described as “for women living with ovarian cancer” but I’m sure that doesn’t mean to exclude those of us who are optimistic it’s behind us, but remain deeply affected by the journey.
jan0927
1
Re: Diagnosis
@djapj Hi there I am also an early diagnosis and NED for more than 18 months, no chemo. Regarding belly issues, I can appreciate as I have been dealing with issues since my hysterectomy. Remarkably the area of discomfort is where they found the cancer. Recent ultrasounds don't indicate any issues other than a small amount of fluid in my pelvis. I also suffer from IBS so I can appreciate how difficult it is to determine 'net new' issues from existing. Rest assured that provided you follow up on any concerns, that it may be residual recuperation. Our bodies have gone through a lot and we all heal at different stages. Wishing you all the best. You are a survivor, just like the rest of us early stages. Luck was on our side, but we can't minimize the challenges we have overcome now and in the future.
Re: Teal Tuesdays - Live Online Chat! (Discontinued indefinitely)
Hi! @Linda. Knitting is my therapy. Regardless of other projects I always have a sock on the go. And I take it to every appointment. During high stress and especially during chemo, I had a simple garter stitch project that ended up being a lovely teal triangle shawl. I finished it at the end of treatment and gave it to my friend who most often comes with me when my husband is working.
My husband took up knitting for his anxiety during my first rounds of treatment. He watched me and our girls contentedly knitting away and decided to join us. He doesn’t produce much since he is a perfectionist but it is gorgeous when he gets done!
My husband took up knitting for his anxiety during my first rounds of treatment. He watched me and our girls contentedly knitting away and decided to join us. He doesn’t produce much since he is a perfectionist but it is gorgeous when he gets done!