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Worries about reocurrance - share your story with me

  • 1.  Worries about reocurrance - share your story with me

    Posted 02-26-2018 13:01
    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.  :)




  • 2.  RE: Worries about reocurrance - share your story with me

    Posted 02-26-2018 16:46
    I am going to follow this thread for sure....because I truly don't know how I move on after chemo is done.


  • 3.  RE: Worries about reocurrance - share your story with me

    Posted 02-27-2018 13:04
    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. :)


  • 4.  RE: Worries about reocurrance - share your story with me

    Posted 03-07-2018 02:07
    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. 


  • 5.  RE: Worries about reocurrance - share your story with me

    Posted 03-09-2018 19:15

    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.



  • 6.  RE: Worries about reocurrance - share your story with me

    Posted 03-14-2018 19:10
    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.

     


  • 7.  RE: Worries about reocurrance - share your story with me

    Posted 03-18-2018 21:15
    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.


  • 8.  RE: Worries about reocurrance - share your story with me

    Posted 03-19-2018 23:52
    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  :s 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!





  • 9.  RE: Worries about reocurrance - share your story with me

    Posted 03-27-2018 19:17
    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.


  • 10.  RE: Worries about reocurrance - share your story with me

    Posted 03-27-2018 22:38
    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.  :)


  • 11.  RE: Worries about reocurrance - share your story with me

    Posted 03-31-2018 23:51
    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. 


  • 12.  RE: Worries about reocurrance - share your story with me

    Posted 04-04-2018 00:00
    Hello @Jack - thank you for sharing your update - sorry to hear you are going through that again.


  • 13.  RE: Worries about reocurrance - share your story with me

    Posted 05-06-2018 18:44
    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. 


  • 14.  RE: Worries about reocurrance - share your story with me

    Posted 05-07-2018 00:11
    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 :)



  • 15.  RE: Worries about reocurrance - share your story with me

    Posted 05-07-2018 19:04
    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.


  • 16.  RE: Worries about reocurrance - share your story with me

    Posted 05-08-2018 14:56
    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.  


  • 17.  RE: Worries about reocurrance - share your story with me

    Posted 05-09-2018 00:02
    Glad you were able to do what you are comfortable with - sending positive vibes to you @tigerlily


  • 18.  RE: Worries about reocurrance - share your story with me

    Posted 05-11-2018 12:54
    congratulations @Jackie , you made it to 5 years!!! Live life and enjoy it all!


  • 19.  RE: Worries about reocurrance - share your story with me

    Posted 05-11-2018 13:02
    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. 



  • 20.  RE: Worries about reocurrance - share your story with me

    Posted 05-11-2018 16:17

    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. 



  • 21.  RE: Worries about reocurrance - share your story with me

    Posted 05-19-2018 00:30
    I have experienced two bowel obstructions. Not fun!
    @Jackie and @JaneWest Both of you know what i am talking about!  Glad things worked out. Keep up the positive attitude! :)


  • 22.  RE: Worries about reocurrance - share your story with me

    Posted 06-12-2018 23:57
    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.


  • 23.  RE: Worries about reocurrance - share your story with me

    Posted 07-11-2018 03:53
    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)


  • 24.  RE: Worries about reocurrance - share your story with me

    Posted 07-11-2018 18:39
    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.


  • 25.  RE: Worries about reocurrance - share your story with me

    Posted 07-19-2018 10:06
    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?! 


  • 26.  RE: Worries about reocurrance - share your story with me

    Posted 07-19-2018 12:46
    @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.















































  • 27.  RE: Worries about reocurrance - share your story with me

    Posted 07-19-2018 13:43
    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 f
    ree 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. 



  • 28.  RE: Worries about reocurrance - share your story with me

    Posted 07-19-2018 15:04
    @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. ??


  • 29.  RE: Worries about reocurrance - share your story with me

    Posted 07-21-2018 12:34
    @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?


  • 30.  RE: Worries about reocurrance - share your story with me

    Posted 07-21-2018 17:25
    @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. 


  • 31.  RE: Worries about reocurrance - share your story with me

    Posted 07-23-2018 21:41
    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.


  • 32.  RE: Worries about reocurrance - share your story with me

    Posted 07-31-2018 23:51
    Hi All, I haven't been on this site for awhile spend most of my time on cancerconnection.ca 
    although not many members on that site with ovarian cancer, but a lot of members & very busy. I am currently in the midst of a reoccurrence. Following treatment I felt great and actually did some travelling & got back to a  slower version of my old self. I wasn't really focusing or worrying about reoccurrence but it came back in just 5 mos ! Now back in chemo taking Taxol, 3 weeks on 1 week off for 6 months - this is considered "maintenance chemo"
    my body is responding positively to treatment, CA125 counts going down. Side effects not nearly as bad as the combo drugs I was on 1st round. Have a plurex in again to help with the
    build up of ascites fluid. Hopefully this will last longer.
    jack



  • 33.  RE: Worries about reocurrance - share your story with me

    Posted 08-01-2018 00:05
    Hello @Jack - sorry to hear of your recurrence and it is good to hear your body is responding to the chemo again. 



  • 34.  RE: Worries about reocurrance - share your story with me

    Posted 09-05-2018 12:34
    @canadianwarrior I hope this finds you well.  I met up with my GP and as it turns out everything is good.  Pretty well all of my health issues are explainable.  For example the back pain is nerve issue related to the way I was holding my body after the surgeries.  The weight loss is due to all the walking I did during recuperation.  The brain is an amazing tool that can 'trick' you into thinking something that is not true.  Where I have physically recovered, I am still healing mentally.  One step at a time.


  • 35.  RE: Worries about reocurrance - share your story with me

    Posted 09-05-2018 18:40
    Hello @Ingrid_Canon - thank you for posting - was thinking about you and the issues. That is good to hear it is all resolved and yes, the emotional healing is a challenge as well... wishing you the best with that as you move forward. 


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