Fear of occurence has turned into immobility

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Rebecca75
Rebecca75 Member Posts: 5
in Uterine/Endometrial Cancer #1

I am a three-year survivor (oh, how I hate that term) of stage 3 uterine cancer.  I was having every three-month check-ups. Then it was every 4 months and quickly became "make an appointment for 6 months."  I was always compliant, but that 6 months ended in March, and here it is the end of June, and I can't bring myself to make another appointment.  It's like I can't stand the whole cancer thing any more. 

Anyone ever delinquent like this???

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  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,371 Member
    #2
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    Rebecca, as scary as the thought of recurrence is, I always find my visits as a kind of safety net or warm blanket.  I know someone I have been working with to save me was going to take the time to spend time with me.  I could ask questions, and that conversation was so important to me.  For me it is kind of the opposite.  I found when they stepped me down in scheduling to appointments further apart like I was being thrown off a bridge.  I said that once to the oncologist in the gyn oncs office and she told me I could come anytime I wanted.  I think I just needed to hear that.  

    Three years is terrific!  I sometimes let my mind wander about "what if" they didn't catch it....that is a scarier thought to me.  Rebecca - look at what you have done!  I don't think anyone, unless they have gone through it, has the right to celebrate like us.  Sending you good thoughts and hugs dear one.  Keep kickin' it!

  • StrongerthanIthought
    StrongerthanIthought Member Posts: 55
    #3
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    I agree

    When I was switched from every 3 months to 6 months - I panicked.  I would go every month if they would let me. I felt relief, comfort, safe when I was checked an OK. Going for a spell with no assurance that I'm still OK, is the hard part.  Hurray for being 3 years NED!

  • Soup52
    Soup52 Member Posts: 908 Member
    edited June 2017 #4
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    Congrats for 3 years! I'm

    Congrats for 3 years! I'm afraid we all will have the fear of reoccurrence. I have a 4 month gap this time after one year and it still makes me anxious. I wish for another Ct even though I'm not sure my oncologist will schedule one. He likes to rely on symptoms and CA125 Which is difficult because it's what symptoms?... nevertheless I Cary on and enjoy life. I hope you will, too:)

  • Carpit
    Carpit Member Posts: 19
    #5
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    CONGRATULATIONS LADIES- stay

    CONGRATULATIONS LADIES- stay pro-active and vigilant. Never let your guards down. I am so happy for you all. Get checked out for the smallest of symptons. I had a complete hysterectomy on Feb 2017 of stage 1b uterine sarcoma. Refused chemo because improvemenrt odds were mimimal. However, I decided to be watched every 2 months. Had a pet scan on 03-31-2017 with no NED. Had a pap done and more blood test on 05-31-2017. All good.  ( no CT scan) . On June 18th went to emergency room of unrelated hospital from being overheated. They were trying to determine what caused me to briefly pass out and the test included a CT Scan. My cancer had returned to my abdomin and pelvis. Now in the process  of determining my next move. There were no warning signs. May NED remain in your lives forever. 

     

  • Kathy G.
    Kathy G. Member Posts: 244 Member
    #6
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    Hi Rebecca!

    Hi Rebecca!

    I am in the same boat as you in terms of putting off my check-ups.

    I was diagnosed at stage & grade 1 with only 11% invasion into uterine wall. Only required the hysterectomy and follow-up appointments. I faithfully did my 3-month check ups, then my 6 months up until last year...my 4th year out. I did not go for my 4th year appointment this past December 2016 as the anxiety just overwhelms me. It didn't help that the doctor told me at my last appointment mine was caught so early I could go a year without concern as the follow-up guidelines had changed since my diagnosis.

    I had planned to force myself to go this summer, but I became very ill this past March. I am seeing several doctors for treatment for a condition unrelated to cancer. I am still gaining my strength back and have used that as an excuse to not go in as planned. The voice in my head tells me it is okay because I have enough on my plate for now.

    But still, I know I need to get it done and often feel like such a coward because the majority of the women here have had to go thru far worse than regular exams.

    So my unsolicited advice would be to 'do as I say & not what I've done'...lol...schedule and get it done!

    Best of luck!

    Kathy

  • christine8822
    christine8822 Member Posts: 40 Member
    #7
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    Was also Stage III and understand completely

    Hi Rebecca: wow, what a coincidence, and thanks for posting about anxiety and appointments. Today is my 2-year mark since I was initially treated for endometrial cancer (type 1) with hysterectomy, which turned into a 6 month odyssey of chemo/radiation due to pelvic lymph node spread making me IIIC. I have been NED since -- but still get very anxious every time I have to have a dr.'s appointment or scan. My 4-month appointment is next week and yes, I find that I start secretly brooding about it non-stop about 3 weeks ahead. I can't tell others, because everyone thinks my cancer is "in the past", ha ha. I think the feeling we all get is kind of like PTSD. The trigger for it can be seeing the building, or walking into the office (yikes, it creeps me out just to think about it!), or seeing the doc, or laying on that damn CT scan table or getting blood drawn, or worrying about the upcoming appointment. We also get anxiety if we DON"T see the oncologist often enough, if he spreads out the appointments too far...like, what if they miss something? Sigh.

    But I think you should still keep going through year 5. Suck up your courage. It will be ok.

    My question is sort of related....as time goes on, I'm going into the 3d year cancer free, and it appears that maybe, perhaps, OK,  I will go on living...what now? I already cleaned my house, got my affairs in order, went on trips, have seen my family, repaired relationships, found peace, came to terms with possible death, retired from my stressful job and am loving it... but now what???? I'm only 61. My time horizon was shortened when cancer came...now, I find myself wondering if I have the right to plan years ahead or should keep my timeline short. What is your advice?

     

     

  • MAbound
    MAbound Member Posts: 1,168 Member
    #8
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    What's next?

    I'm not as far along as you (every 3 month check-up phase), but boy do I hear you about the anxiety and not being able to talk to friends or family members about it because they so want us to be past tense as regards the cancer.

    I'm a professional worrier and I cope by trying to be prepared for the "what ifs" ahead of time so that I can either head them off or have a plan to deal with them should they occur. Usually my family is good with that and actually rely on me being this way, but not for this! They don't want the "R" word ever mentioned and do their best to shut me up if I need to discuss something that I want to be prepared for. I'm still doing what I do, but I can't share any of it and it kind of puts me in a lonely place now that I'm done with treatment and am in the wait and watch phase to see if I stay NED. I really sympathize with anybody else dealing with it which it seems to be pretty darn common. It's too bad, but I remind myself that my diagnosis and treatment were just as shocking and traumatic for my family, too, and they are just coping in ways that work for them and I have to accept that.

    As for the "now what?" I'd say, yeah, go ahead and make plans for the future as if you never had the cancer. You've earned that. What's the point of letting the beast have any more of your time than it's already taken? You sound like a very goal oriented person that needs to make and have plans to be happy, so have at it! The possibilities are endless, so start making your lists to figure out what it is you want to do next. Being busy won't get rid of your anxiety when the next check-up looms, but hopefully it will reduce the amount of time you spend focused on it.

  • christine8822
    christine8822 Member Posts: 40 Member
    #9
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    MAbound said:

    What's next?

    I'm not as far along as you (every 3 month check-up phase), but boy do I hear you about the anxiety and not being able to talk to friends or family members about it because they so want us to be past tense as regards the cancer.

    I'm a professional worrier and I cope by trying to be prepared for the "what ifs" ahead of time so that I can either head them off or have a plan to deal with them should they occur. Usually my family is good with that and actually rely on me being this way, but not for this! They don't want the "R" word ever mentioned and do their best to shut me up if I need to discuss something that I want to be prepared for. I'm still doing what I do, but I can't share any of it and it kind of puts me in a lonely place now that I'm done with treatment and am in the wait and watch phase to see if I stay NED. I really sympathize with anybody else dealing with it which it seems to be pretty darn common. It's too bad, but I remind myself that my diagnosis and treatment were just as shocking and traumatic for my family, too, and they are just coping in ways that work for them and I have to accept that.

    As for the "now what?" I'd say, yeah, go ahead and make plans for the future as if you never had the cancer. You've earned that. What's the point of letting the beast have any more of your time than it's already taken? You sound like a very goal oriented person that needs to make and have plans to be happy, so have at it! The possibilities are endless, so start making your lists to figure out what it is you want to do next. Being busy won't get rid of your anxiety when the next check-up looms, but hopefully it will reduce the amount of time you spend focused on it.

    thanks

    Thank you, MAbound, for your uplifting words. This board is a great place to talk about things that our family and friends can no longer bring themselves to talk about. All the best in your march forward in life.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,371 Member
    #10
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    MAbound I am going to give

    MAbound I am going to give you a great, big, ole "AMEN!"

  • ConnieSW
    ConnieSW Member Posts: 1,679 Member
    #11
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    Double amen

    i wish we had the response icons like the Inspire site has. 

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #12
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    I did ok for 3 years going

    I did ok for 3 years going every 3 months, 4th and 5th years going every 4 or 6 months.  Once I hit the 5 year mark my dr said 1 year it tottaly freaked me out.  Not getting the you're doing ok, no exam, no blood work kinda scary.  I will go to the dr in aug for a yearly check up and while I feel fine, it is there in the back of my head going what if.  I have not had a CT scan in 3 years so that freaks me out too.  Cannot tell whats going on inside the body if you can not see inside the body.  

    I hate playing the head games iwth myself but it happens.  I feel like it happense with all people who have gone through the C journey, what if it comes back, what will I do, what will my family do, it is a feeling only we face because we have gone through that journey of knowing that Cancer can taake you away from your life.   It is a one day at a time.  I remember that one of the ladies that has passed saying that she was going to life her life everyday while she battled the cancer, she did not let it control her.  She went my the name of RO10 and always signed off...In peace and caring.  I miss her.  Her husband and her moved back and furth between IL and FL.  She went on cruses and trips and lived her life.    So what next is get well, make the appointments, and live your life to the fulliest. Trish

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