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!
Worries about reocurrance - share your story with me
Recently I was at the cancer clinic for check-up. During the rectal exam the doctor could feel lumps in my bowel. She told me not to go home and worry but that I was to have a CT scan and return for another checkup in a month. I was scheduled for a colonoscopy later that week (due to constipation problems). After the procedure I was diagnosed with a healthy bowel.
Though I tried not to worry, I think subconsciously I was thinking "what if". I think even though I have done really well (1 year 7 months post chemo), a tiny part of me in the back of my brain cannot help but worry about a reoccurance. Especially, when normal health problems crop up. Fortunately everything turned out ok, but I am left with a throbbing headache today after all of that go ahead last week. So, I am just going to take a day for me, drink some tea, do some knitting, and relish in the thought that after all I have been through, I am ok.
Though I tried not to worry, I think subconsciously I was thinking "what if". I think even though I have done really well (1 year 7 months post chemo), a tiny part of me in the back of my brain cannot help but worry about a reoccurance. Especially, when normal health problems crop up. Fortunately everything turned out ok, but I am left with a throbbing headache today after all of that go ahead last week. So, I am just going to take a day for me, drink some tea, do some knitting, and relish in the thought that after all I have been through, I am ok.
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I am going to follow this thread for sure....because I truly don't know how I move on after chemo is done.0
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I moved on full steam ahead! I was so happy to have the chemo done. I am a happy camper and confident in my health but when things like this pop up I can't help but wonder. I guess that is natural. 2
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Hello @sunshine1122 and @red1976... yes, I agree, those are all understandable feelings.
I'm going to review this webinar again:
https://www.youtube.com/watch?v=UFzWtsR0F5Y
I found it very helpful.0 -
I recently went for my final checkup at the cancer centre, I’ve been in remission for five years and now it’s protocol for them to return me to the care of my family doctor. Even though this was an incredibly joyful moment, fear of recurrence remains an extremely difficult issue for me. Sometimes I have a terrible fear of being rediagnosed or ending up back at the Tom Baker Cancer Centre. Every checkup, test, or change in how my body feels still causes anxiety. The positive news is that after so many years I think I’ve become somewhat better at coping with the day-to-day apprehension and uncertainty that comes with being a cancer survivor.
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Hi @SunshineC @red1976 @Flowergirl @Jackie
Fear of recurrence, hypervigilence over all the aches and pains in the body and tests are all very common. There is a great book called "Picking Up the Pieces" by Kathy Scalzo and Sherri Magee. This book addresses how to move forward after cancer and pick up the pieces of your life again in a constructive way. You may find it helpful.
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I worry about recurrence every day, even though my tumour was considered LMP (low malignancy potential) and removed in stage 1. I just remind myself that what will be will be, and accept that cancer will always be a part of my life. I have good days and bad, good moods and down right sh*tty ones, so I try to stay busy and do things that make me happy. Recently it has been letting go of something that has been causing nothing but stress and starting a direct sales business with a company I am really passionate about.2
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I think more than anything the thought of having to go through all the medical stuff again. I have to travel over 2 hours to get to the cancer centre because my local hospital doesn't treat ovarian cancer patients who require chemo. That and all the lovely stuff that goes with chemo
is the thing that gives me dread the most.
Since last post I had a tension headache that lasted 12 days. I went to emergency and they gave me something to break the cycle of pain and sent me for a scan on my brain because of my history. All was clear thank heavens. I also had the cat scan the gyne oncologist ordered. It was clear too. BIG SIGH OF RELIEF.
It's funny though, outwardly I don't worry. I must be doing it subconsciously. At any rate, I am back at the cancer clinic tomorrow for a follow-up appointment. I am hoping I won't have to go back for spell. Wish me luck!
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Hi @sunshine1122. Glad to hear that all those scans were clear! If you are worrying subconsciously, you may want to check out some of the discussions about anxiety and how to cope with the diagnosis. Maybe some of the practices that some of the other women talk about might be helpful for you too. How did your follow up appointment go? Hope you don't have to go back for a while.0
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Hi Marilyn!
Thanks for checking in on my! I am taking steps to deal with the anxiety and the stuff I think I buried in the back of my mind. I am going to see a therapist and hopefully process the ordeal.
My follow-up appointment went well and I don't have to go back for another four months. THank heavens! Now that all of that is over I feel much better. 1 -
Hello all, I haven't been on this site for awhile. I finished my chemo on Oct 18th/17 and had a great winter got some travelling in to the Dominican Republic & Florida, but unfortunately on March 10th I started bloating, got drained 5 litres & had a ct scan on March 23, small bowel blockage ( this was the same symptom that led me to my diagnosis). So I am already in recurrence, not saying this to frighten anyone just to let you know that even if it happens there are still options. I will be starting chemo again, but this time a low dose of Taxol once a week for 12 weeks. It will be an annoyance but I was glad to hear treatment was an option.2
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Hello @Jack - thank you for sharing your update - sorry to hear you are going through that again.0
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I have been in remission for over 3 years from stage 4a ovarian cancer - and in the last few weeks have been feeling mildly nauseous and burping a lot. I have a scheduled appointment with my oncologist on May 29 and I wonder if I should call or just wait for my appointment. These symptoms are similar to the ones before diagnosis, until they were overshadowed by pleural effusion and vaginal bleeding.
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I would definitely call and talk to someone. If they think it's urgent they will want to see you. That's what I would do
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Yes, for sure @tigerlily - if this is new for you, the symptoms, if you can call and explain, perhaps they will move up your appointment.0
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thanks @Flowergirl and @sunshine1122 - I did call and we agreed to wait until the set appointment, but with the reassurance that if things got worse, to call again and see what they can do. I am always afraid of overreacting, and it's only a couple weeks.
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Glad you were able to do what you are comfortable with - sending positive vibes to you @tigerlily0
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your experience sounds similar to mine @Jack . Debulking surgery, followed by chemo which ended Feb 2017. I spent the next year working on my physical body and mind, regaining strength and mobility. Did some travelling. Then in March 2018, I had almost every symptom on the OC watch list. It was a shock, and caused a lot of emotional upheaval. But I sorted it out; I worked hard and I now have a very clear focus and vision for what I need to do and think moving forward. For myself and my two teenage sons. I spent 8 days in the hospital in April for bowel obstruction; am doing better now. I'm due to start Lynparza next week!!! I'm excited to get going with it.
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Thank you @JaneWest I’m filled with gratitude for making it five years and I see the world in a different way than I did before my cancer journey. My thoughts are with you and I can empathize with what it’s like to have a bowel obstruction. In 2012 while I was going through chemo I had an obstruction that was caused by scarring and adhesion of my bowel. I spent seven weeks in the hospital and it ultimately required some surgery.
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Hello everyone - Starting July 6 - for those of you on the site not currently dealing with recurrence, there is an upcoming online webinar if you need support and coping techniques to deal with the fear of recurrence:
https://cancerchat.desouzainstitute.com/calendar
I attended this session a while ago and it was very helpful to cope with stress, address emotions and promote recovery.0 -
I worry about recurrence everyday. Did anyone else have a bad rash on their belly prior to diagnosis? I had one that went away after surgery and during chemo but has come
back. I can’t stomach the thought of stepping back in the cancer centre again already. 😢 (just finished chemo May 7:18)0 -
Hello @mother42275 and welcome to the chat. Perhaps a call to your DR, nurse practitioner or medical team to assist you or ease your concerns. Wishing you a good outcome and yes, we are here to support you.0
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I’m frustrated, worried, and I don’t know where to turn. I was diagnosed with stage 1a Ovarian cancer In March of this year and after two major surgeries, I’m now in remission. However, during the removal, my tumour broke open and spilled into my abdomen. My cancer team suggested no chemo as they didn’t want me to go through chemo unless it was absolutely necessary. For 2 years before being diagnosed, I lost weight in spurts and was extremely exhausted. I made many doctors visits and was told it was due to stress. I felt like no one was listening to me. After being diagnosed, the prior weight loss made sense. However, I’m continuing to lose weight quickly and am concerned as I’ve always had a problem losing weight. I am 5’9” and am now weighing 147lbs. I increased my eating habits and even added in ensure smoothies between meals and snacks to boost my intake.....and I still continue to lose weight and feel exhausted. The doctors still continue to be deaf to my concerns and haven’t even run blood tests or any test for that matter. I guess I’m just wondering if anyone else has had a weight loss problem after their surgeries (it’s not due to chemo as I haven’t received it). Is this a normal thing?!0
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@canadianwarrior Even though I have not had a weight loss problem I think you are doing ok with the weight you are at. I have attached a link to a webpage showing weight ranges by height and you seem to be in the normal range.
https://www.rush.edu/health-wellness/quick-guides/what-is-a-healthy-weight
It says between 128-168 for 5'9". I am told to get protein into me. I have a large appetite, possibly from steroids but I try to get protein into me. Depending on which province you are in there are free services with a dietitian. I have provided the link.
https://www.dietitians.ca/Your-Health/Find-A-Dietitian/Search-for-a-Dietitian.aspx
Forget doctors with diets as they are not trained to deal with it. I do not bother my doctor with food issues.
Good luck.
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Welcome again @canadianwarrior - sorry you are having trouble communicating with the doctors. As many of us have expressed on the site, you may need to educate the doctors or find someone who listen to your concerns - perhaps asking to speak / meet with another health care provider or Nurse practitioner. Many have found another support is their family DR, outside your oncology team. Note that some provinces have collaboration between the two for care and follow-up. The Oncology team should be monitoring your weight at appointments (that is done here on the prairies) and explaining to you your health conditions / progress / course of action and symptoms to look out for. It is helpful to keep a list of concerns in between appointments so you are prepared.
If you are continuing to lose weight quickly, still feel exhausted and feel you are not having improvements in your health post surgery, push for an appointment to address your concerns.
And yes, as @CurlyHair mentioned, it is possible to access free services with a dietitian through your cancer centre.
You can also find some good resources on past webinars at this link below:
http://ovariancanada.org/Events-Support/Go-Online-for-Support
Click on the webinar series and scroll down to review.
Hope you are having a good day today and we look forward to connecting with you around the chat site.
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@CurlyHair yes I agree my weight is within normal range, the thing that’s bothering me is that I’m losing it very quickly with no reasoning behind it. I don’t exercise and I eat much more than i should and still the weight seems to be melting off of me. I’m not so much worried about the weight loss as I am the reason why I have weight loss. Thank you for the suggestions, I will look into it as well as what @Flowergirl mentioned, pushing for an appointment date sooner than October. 😊0
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@canadianwarrior my situation is similar to yours. Found in Stage 1 and removed through surgeries, nothing further required. I have been tracking health issues in MyChart (electronic medical records) since my last surgery. When meeting with my oncologist on my Year 1 followup he noted that all was good after doing a quick abdominal check . Before my surgeries I weighed about 110. Now it is a struggle to keep my weight around 103. When I brought up the symptoms I was tracking, my oncologist stated that these were related to the surgeries I had and would take some time to improve. I am now going to talk to my GP about my issues next Tuesday. He knows me really well and should have a good sense of what my 'normal' looks like. I have been experiencing bowel issues as well, do you have the same issue?0
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@Ingrid_Canon No I don’t have any issues other than exhaustion, rapid weight loss, and nausea from time to time. The weight loss must be due to the surgeries as my doctor doesn’t seem to think that it is a concern. I don’t have any other issues other than those.0
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Sorry to hear you are not doing the best @canadianwarrior. I never experienced weight loss even during chemo.
I recently had a checkup and all is well. I have graduated to appointments every six months. So far so good for me. I am in good health and taking care of my mind body and soul.1
