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 ([email protected]).
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 ([email protected]).
Brand new to the club
Hi
i have just recently found out by total fluke that I have what is presenting as ovarian cancer. I have a mass on my ovary and nodules throughout the perineteum area. I still have to wait for a CT scan of my chest and a biopsy of the tumour to have it staged and get a treatment plan. I am honestly still in shock. I have had no symptoms ( except urinary frequency-which is in hindsight). I guess I just wanted to introduce myself and touch base with some women who have been where I am.
Do you have any advice? Does anyone have any idea what causes this? What timeline am I looking at for getting these tests and treatment started. I’m freaking out that the cancer is growing and I feel like every second matters. However, I’m terrified of the treatment, chemo sounds brutal and the surgeries seem super intense. How do you handle everything? It’s so overwhelming.
Thanks for reading/listening.
Scared in London, ON
Laura
i have just recently found out by total fluke that I have what is presenting as ovarian cancer. I have a mass on my ovary and nodules throughout the perineteum area. I still have to wait for a CT scan of my chest and a biopsy of the tumour to have it staged and get a treatment plan. I am honestly still in shock. I have had no symptoms ( except urinary frequency-which is in hindsight). I guess I just wanted to introduce myself and touch base with some women who have been where I am.
Do you have any advice? Does anyone have any idea what causes this? What timeline am I looking at for getting these tests and treatment started. I’m freaking out that the cancer is growing and I feel like every second matters. However, I’m terrified of the treatment, chemo sounds brutal and the surgeries seem super intense. How do you handle everything? It’s so overwhelming.
Thanks for reading/listening.
Scared in London, ON
Laura
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Comments
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Hello @laura50 - thank you for sharing your story. We hope you will find much support here on the site. There are lots of women who have shared their treatment stories and tips to coping. You can use the search bar at the top or click back through the topics. The suggestion I can offer at this time is to write out all your questions and then you have a good plan going into the next appointment with the DR team. Yes it can be very overwhelming and it is important to reach out to all the resources at your cancer centre to help you cope with it all.
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Thank you for your response. I’m feeling a bit better mentally today. I think a diagnosis like this really puts you on an emotional roller coaster. I appreciate your suggestions. It’s true when we met with the doctor ( was unsure if anything at that point) it was all a bit surreal. She was very thorough but really between my husband and I I’m not sure what we retained outside of ovarian cancer. I’m trying to not go down the google spiral but it’s hard not too. I did receive the book which I have looked at- small doses... lol.
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Hi @laura50 - my cancer wasn't discovered until the pathologist examined the mass removed as part of hysterectomy. Neither the doctor, and certainly not myself, expected cancer, but there it was. Stage 1C Clear Cell. I had an appointment with the oncologist two weeks after the results of the pathology report. The tumour had breached and there were possible cells floating around in my abdomen. They were ready to begin treatment the next week, but like yourself, I was concerned. Chemo? Scared me half to death! My GP said I needed to be as aggressive as possible with this cancer. I felt so much better after my surgery, and uncertain about treatment side effects, however, I did go ahead with six rounds of chemo. The side effects (though not pleasant) were much less than my vivid imagination figured they would be. The main thing is listen to your doctor and take all prescribed medications. This is no time to be a hero! The drugs will help you through! Be sure and hydrate yourself before treatment and for the three or four days following. I found it helped tremendously. Listen to your body. If it wants rest, then rest.We are here for you!0
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Hi @laura50, I think the hardest part is when you don't know exactly what you are dealing with. I had 2.5 months between being told there was some kind of cancer and surgery, and that time was horrible. Once I had my surgery, got the pathology report, and had the treatment plan I felt a little bit better. I found the surgery (radical hysterectomy) recovery to not be too bad-- I didn't have a lot of pain. I had 6 rounds of Carbo/Taxol after surgery and I found that breaking each chemo cycle down into individual units of time to be helpful. You soon learn what to expect on what day after chemo. It's so easy to be overwhelmed by all the unknowns and what-ifs, I found using mindful techniques to be really beneficial. Hope you get some answers soon.3
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Hi @laura50, I suspect you have some answers soon - but also know that treatment plans and timelines likely vary by local wait times. Depending, you will certainly be recommended for initial surgery to remove ovaries, tubes, hysterectomy, omentum (lining), lymph nodes and staging samples as needed. After that surgery, you will wait for pathology results. After that, depending if they think surgery removed all cancer, they will recommend chemo or not. So, you are faced with a start of treatment that includes uncertainty and waiting. Hugs through this initial hard place. Things get easier, I think we get used to the uncertainty and waiting that cancer may be there still or recur. Meanwhile, enjoy you summer. Make plans. Live an incredible life for yourself. ♥️1
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Hello again @laura50 - hope you are feeling ok and you have had some appointments confirmed now; yes, it is difficult waiting. A call to your cancer centre - navigation coordinator may let you know what and when to expect.0
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Hi
i met with the oncologist yesterday and I have a high grade serous carcinoma which she is treating with chemo, surgery and more chemo. The initial outlook is good but I guess it can also reoccur. I’m trying to just focus on getting well with this treatment. I have developed ascietes ( spelling?) in my abdomen and look like I’m 8 mos pregnant. It is so uncomfortable. The dr said the chemo will help with it. Thank goodness. I am finding myself extremely bitchy! Because I can’t get comfortable and I’m miserable. Also, all the cheeriness from people is a bit hard to take. I get that I need to be positive etc but my whole life has been turned upside down in a few weeks, isn’t it okay to also be angry. A month ago I felt great, had just got a promotion etc and now I am in pain waddling around looking at the prospect of a ton of medical shit. Anyways I don’t be to be such sour grapes but I’m sure others can relate.
Thanks for for letting me vent!
Laura2 -
@laura50 - this is the perfect place to vent! As you said, we can relate. We all go through so many emotions with ovarian cancer and the fact that we feel like a pile of you know what doesn't help either. You are right - focus on getting well. Do you know how soon you will have the surgery?
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