Afraid of Recurrence

I was diagnosed with Stage 3c Colorectal Cancer in August 2011. Had surgery to remove about 12" of sigmoid colon and cancer in 5 lymph nodes. I completed six months of Folfox chemo a year ago. So far any follow up tests have shown no sign of any cancer. I am so thankful for that. I have a CT Scan next week. It has been six months since my last one. I try not to be scared but I hear of so many where the cancer comes back. Nobody around me truely understands my fears. They think I'm being negative and tell me I'm going to be fine. I want to be positive but not enough time has gone by. How do I keep from worrying so much?

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Comments

  • PatchAdams
    PatchAdams Member Posts: 271
    Impossible???

    I'm not sure it can be done, Tammy.

    I was Stage IIIB in Jan. 2009 and had 5 out of 17 lymph nodes positive with 'a few microscopic cells'.  I had 18 inches of my colon removed and did 12 tx of FOLFOX.  Three years later, Feb. 2012, they found a tiny liver met during my CT scan.  I had a liver resection in April last year and have a PET scan later this month with tests every four months right now.  I'm terrified every day.  I spend more time worrying about cancer than anything else.  

    Worrying won't chage the outcome and I believe I've wasted an awful lot of time worrying.......  but I can't get past the fear. 

     

     

  • PhillieG
    PhillieG Member Posts: 4,866
    What I Find that Helps

    is to try to keep your mind off the scan then the wait for results by doing something you enjoy. It's not always as easy to but there's absolutely nothing "wrong" or unusual about it. Many here refer to it as Scanxiety.

    I think you're probably correct in saying that no one around you truly understands your fears. I tend to equate it to childbirth in that I will never know what it's like to give birth*. People who don't have to deal with an illness like cancer or most other major diseases will never really know what many of us have gone through. Not to mention that how I experience my cancer is different in how you experience yours and so on...

    Maybe try to explain to someone close to you how they really can't know how it is if they haven't experienced it. I don't think you're being negative. BUT...you have to remain diligent and take your health (even more) seriously and try to keep in mind that just because you've had cancer doesn't mean that it's what you might die from. Every day we get in our cars or travel anywhere we could just as easily die in an accident.
    See, isn't that more cheerful?

    *I only used birth because it came to mind. It's certainly a joyous event unlike cancer

  • AnnLouise
    AnnLouise Member Posts: 276
    I agree....:

    With the previous posts, I don't think it is possible not to worry. I worry every time I have a CEA blood test, ct or pet scan. Just remember we understand your fears and its not negativity, it is the fear of the unknown. Maybe try to stay busy and plan some fun things and hang on to the fact that your last CT was good. Please keep us posted and sending positive thoughts for positive results! ~ Ann

  • KayeKay
    KayeKay Member Posts: 122

    Impossible???

    I'm not sure it can be done, Tammy.

    I was Stage IIIB in Jan. 2009 and had 5 out of 17 lymph nodes positive with 'a few microscopic cells'.  I had 18 inches of my colon removed and did 12 tx of FOLFOX.  Three years later, Feb. 2012, they found a tiny liver met during my CT scan.  I had a liver resection in April last year and have a PET scan later this month with tests every four months right now.  I'm terrified every day.  I spend more time worrying about cancer than anything else.  

    Worrying won't chage the outcome and I believe I've wasted an awful lot of time worrying.......  but I can't get past the fear. 

     

     

    patchadams

    i dont think i couldve said that any better. im at the beginning of a recurrence right now. i spendmore time thinking about cancer and fear and anger and f this and f that than anything else.

  • John23
    John23 Member Posts: 2,122
    Tammyghent-

     

    You’ve just passed the 1.5 year mark, and no signs of anything wrong! Soon, it will be two years, and before you know it…. Five years! You’ll look back and wonder why you worried so much…..

     

    However….. You will still have the same $%^& fear you did in September of 2011. We all have that fear, and it does not matter how long you’ve remained “NED”; it just doesn’t matter.

     

    I was diagnosed in 2006, and I’m still here being a PITA. And I still react to a hangnail as “it could be cuticle cancer”.

     

    Live life; enjoy it as it is, and continue to make plans for tomorrow.

     

    Better health to you,

     

    John

  • janderson1964
    janderson1964 Member Posts: 2,215
    Yep it never goes away. This

    Yep it never goes away. This is my eigth year of fightin the beast. It never geta easier. You are right that people around you just dont fully understand.

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Thoughts of Recurrence...

    Hi Tammy

    The thoughts of recurrence will always be with you, I'm afraid to say. 

    I'm just about to make my 9th year...I've had cancer 3x now...currently in my longest remissive state at 21-mos....this past scan cycle was 'good' but there was something on there not quite definitive...and it messed me with me for a few days.

    And then I leaned back on my experience and discussed with my doctor and we agreed to wait for another scan cycle to see if the picture becomes clearer, or was just a one-off occurence. 

    But, I still worried about another recurrence from having experienced it several times...when you've fought for awhile, the part of you that dreads going back in the fight is not the hard side of the physical fighting (that comes later again).  No, for me, I just kept thinking, I'm about to climb the hill once again...and just as soon as I try and get to the top, I'm going to get knocked back down the hill again....and have to start over.

    You realize how hard that you will have to work - just to get back to where you find yourself right then.....and then the physical and mental aspects of having to go again would kick in etc.

    For new and old alike, the feelings of IF will always be there I think....at least to some degree.  What I can't answer for you is what it would be like to be clear for many years...that kind of thought process would differ from being in the current fight and maybe just getting clear for a scan cycle or two...and waiting for it to return.

    I'm currently the latter...but would love to feel a different kind of fear from getting a few years clear...

    Recurrence is the hard part of our disease that nobody wants to talk about too much.  All of us geared to fighting it one time and then hoping it is all behind us....in some cases this happens...but in far too many cases, recurrence plays a tremendous role in our fights.  That's what makes the disease so difficult to get ahead of.  Once cancer metastasizes, it becomes more difficult to get under control by the very nature of its definition.

    Still, in my case, I've learned a couple of things...it usually takes more than once or even twice to try and gain a foothold on cancer...I did my 3rd time with it and finally got to my longest clear streak...we just kept banging away at it...

    I'd be lying if I said I didn't expect #4 somewhere along the line...there's an insecurity that is so hard to shake....because I have not gone clear enough to believe that in myself yet.  And if #4 does come, then I will understand cancer at an even greater depth than I enjoy today. 

    As for worry...that's a hard one to turn off, isn't it?

    Easy to sit here and say don't worry....and then I go and worry next week:)

    It's all so new to you...I'd say let yourself go with the flow....experience and feel whatever you want to...give yourself the permission to feel whatever comes into your head.  Your mind is trying to sort it all out anyway....trying to categorize your thoughts and feelings into something rational....that is irrational by nature.

    But, it's all okay...how you think...and how you feel.  It's all real too.....and it's alright to feel this way too.

    Hoping all is behind you...and if things ever were to change anywhere along your journey...you will find it within yourself to do what is necessary.  Survival is the strongest instinct that we possess.

    Best wishes for you!

    -Craig

     

  • Eltina21
    Eltina21 Member Posts: 173

    I was also diagnosed as stage 3 in 2010. I think that idea looms in the back of all of our minds at some time or another.  However, you have so much more living left to do.  I have 3 grand children and two great grand children.  I line dance, play with the grands, take walks, visit friends and just enjoy each day.  I don't sweat the small stuff anymore.  I will turn 60 this year and I am going to Vegas for the first time. Remember to laugh and laugh a lot.Wink

    Peace and Blessings,

        Karen

  • Deena11
    Deena11 Member Posts: 199
    I know how you feel

    I was diagnosed with stage 3 in January 2012.  Finished my 12 Folfox treatments in September 2012.  I get really anxious every time I have blood labs checked.  This Friday I have my first colonoscopy since treatment and I am so afraid too.  I read so many stories on here of people either getting a recurrance or get another cancer.  It seems to happen more than not when I read the stories here.  I'd love to hear more stories of people NOT having recurrances or new cancers and make the 5 year mark NED.  I think, though, some of those people may not come to this forum anymore and get on with their lives.  Maybe that is why we don't hear more positive outcome stories?

  • PatchAdams
    PatchAdams Member Posts: 271
    Deena11 said:

    I know how you feel

    I was diagnosed with stage 3 in January 2012.  Finished my 12 Folfox treatments in September 2012.  I get really anxious every time I have blood labs checked.  This Friday I have my first colonoscopy since treatment and I am so afraid too.  I read so many stories on here of people either getting a recurrance or get another cancer.  It seems to happen more than not when I read the stories here.  I'd love to hear more stories of people NOT having recurrances or new cancers and make the 5 year mark NED.  I think, though, some of those people may not come to this forum anymore and get on with their lives.  Maybe that is why we don't hear more positive outcome stories?

    Deena

    There are a bunch of survivors who left the board after a fuss.......  and most of them were Stage IV LONG term survivors.  It was always good to see those posts. 

     

  • YoVita
    YoVita Member Posts: 590
    I too was afraid of recurrence

    and then I had a recurrence - but I'm still here - loving life and enjoying each day.  

    Best, Vita

     

  • Deena11
    Deena11 Member Posts: 199

    Deena

    There are a bunch of survivors who left the board after a fuss.......  and most of them were Stage IV LONG term survivors.  It was always good to see those posts. 

     

    Thanks Patch

    Patch-

    That is good to know.  I think a lot of new people on this forum feel a bit discouraged and frightened when those success stories aren't shared.  I'd love to see more of those stories.  I won't ask what the fuss was about because I don't want to stir up a lot of bad feeling.  I know I would be thrilled to see stories of survivors that had no recurrences and did not develop new cancers.  I read the other stories and appreciate their content and realize those things may happen to me so those stories are vital.  This forum has provided a lot of support and comfort.  I'm glad I found it.

  • marbleotis
    marbleotis Member Posts: 720 Member
    Yup, but

    I was dx'ed stage 3b with 3 of 17 nodes.  rt hemicolon and 12 rounds chemo.  Since my 1 yr NED I have had 2 CT's both ok, colonoscopy found small polyp that was removed and CEA levels are and remain very low.  Yet each time I have to go for something.........Yikes.

    I was really good for all my CT's but waiting for the results of the polyp - I convinced myself it had come back so I blocked thinking about it until Dr called me.  I was at work and went into a conference room for privacy.  When he said all was ok, I nearly passed out in the chair.

     I thought WOW, I need to really handle this better.  I got myself together and thought that this "anxiety" will kep me on my toes and not take this gift I have been given for granted.  It will keep me exercising and keep me on my great and healthy diet.  It makes me focus on what and who I love and not the regular stupidity that life can throw at you.

    Try to find a system that works for you.  I treat it now like going to the dentist or gyn.  Just gotta do it!

  • DSBC
    DSBC Member Posts: 2

    Yup, but

    I was dx'ed stage 3b with 3 of 17 nodes.  rt hemicolon and 12 rounds chemo.  Since my 1 yr NED I have had 2 CT's both ok, colonoscopy found small polyp that was removed and CEA levels are and remain very low.  Yet each time I have to go for something.........Yikes.

    I was really good for all my CT's but waiting for the results of the polyp - I convinced myself it had come back so I blocked thinking about it until Dr called me.  I was at work and went into a conference room for privacy.  When he said all was ok, I nearly passed out in the chair.

     I thought WOW, I need to really handle this better.  I got myself together and thought that this "anxiety" will kep me on my toes and not take this gift I have been given for granted.  It will keep me exercising and keep me on my great and healthy diet.  It makes me focus on what and who I love and not the regular stupidity that life can throw at you.

    Try to find a system that works for you.  I treat it now like going to the dentist or gyn.  Just gotta do it!

    Stay the course.

    DXed May 2009, stage 2A tumor at the curve from the ascending to transverse colon, 18" section removed.

    High risk factor (perineural invasion) prompted me to take 12 cycles FOLFOX.

    Approaching 4 year mark since DX now.

    A way that I've been able to stay positive is to proactively do things that are believed to ward off recurrences and cancer in general.  Regular exercise, primarily plant-based diet with fish and chicken added, emphasis on antioxidants in diet, keeping up with Vitamin D and other beneficial supplements.

    I lost about 10lbs preparing for surgery, then 10 more following surgery.  I've kept that weight off since and feel great.

    No guarantees, of course, but at least I feel like I'm doing something about it.

  • sharpy102
    sharpy102 Member Posts: 368
    DSBC said:

    Stay the course.

    DXed May 2009, stage 2A tumor at the curve from the ascending to transverse colon, 18" section removed.

    High risk factor (perineural invasion) prompted me to take 12 cycles FOLFOX.

    Approaching 4 year mark since DX now.

    A way that I've been able to stay positive is to proactively do things that are believed to ward off recurrences and cancer in general.  Regular exercise, primarily plant-based diet with fish and chicken added, emphasis on antioxidants in diet, keeping up with Vitamin D and other beneficial supplements.

    I lost about 10lbs preparing for surgery, then 10 more following surgery.  I've kept that weight off since and feel great.

    No guarantees, of course, but at least I feel like I'm doing something about it.

    While I understand all of you

    While I understand all of you saying that it is impossible not to worry, maybe this could work: don't worry because:

    1. you make any possible cancer be happy. They want us to worry!

    2. worry, stress makes us more prone for weakening our immune system, get sick, and even develop cancer

    3. until there's no proof or reoccurence, try to enjoy life! If you worry every single day then if reoccurence comes you'll realize that you wasted all your precious time to just "wait" for this guy be back and make you miserable. Try to find something you like to do, and don't ever think about reoccurence! Take every minute and fill it with fun, joy and love! Cancer here or there, either way, we live only once! Not worth to worry about it. It is not in our control...but our worry makes our lives miserable, and plus helps us to stress our body and hence increase the chances of having cancer back.

     

    Please, do not worry. I know, easier said than done, but really. Now, go and enjoy life! Don't think about it! Enjoy every minute of it...don't think about cancer coming back...don't think about getting hit by a car tomorrow....doesn't matter right now. What matters right now is your LIFE! All of us have ONE life...all of us...enjoy it!!! Try not to worry!!! All the best!

  • KayeKay
    KayeKay Member Posts: 122
    sharpy102 said:

    While I understand all of you

    While I understand all of you saying that it is impossible not to worry, maybe this could work: don't worry because:

    1. you make any possible cancer be happy. They want us to worry!

    2. worry, stress makes us more prone for weakening our immune system, get sick, and even develop cancer

    3. until there's no proof or reoccurence, try to enjoy life! If you worry every single day then if reoccurence comes you'll realize that you wasted all your precious time to just "wait" for this guy be back and make you miserable. Try to find something you like to do, and don't ever think about reoccurence! Take every minute and fill it with fun, joy and love! Cancer here or there, either way, we live only once! Not worth to worry about it. It is not in our control...but our worry makes our lives miserable, and plus helps us to stress our body and hence increase the chances of having cancer back.

     

    Please, do not worry. I know, easier said than done, but really. Now, go and enjoy life! Don't think about it! Enjoy every minute of it...don't think about cancer coming back...don't think about getting hit by a car tomorrow....doesn't matter right now. What matters right now is your LIFE! All of us have ONE life...all of us...enjoy it!!! Try not to worry!!! All the best!

    Sharpy

    Well said. They do say stress, which worrying plays a major part in, makes the cancer spread and even develop faster. I know worry is a big problem for all of us and Cancer Sucks!

  • irishhopeful
    irishhopeful Member Posts: 11
    Hi Tammy....I'm a 'newbe' to

    Hi Tammy....I'm a 'newbe' to all this and ....if honest, have my 'scary' thoughts aswell.  Perhaps the only advice I can give you is to grasp onto the positives from your earlier good results....don't dwell on any non-confirmed negatives....because, like procrastination...that only steals time from you....try enjoy time with your friends/relations...and, remember...worrying will not help you...but being positive may.  The posters on this site will be with you all the way I'm sure...luck and best to you!    

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    sharpy102 said:

    While I understand all of you

    While I understand all of you saying that it is impossible not to worry, maybe this could work: don't worry because:

    1. you make any possible cancer be happy. They want us to worry!

    2. worry, stress makes us more prone for weakening our immune system, get sick, and even develop cancer

    3. until there's no proof or reoccurence, try to enjoy life! If you worry every single day then if reoccurence comes you'll realize that you wasted all your precious time to just "wait" for this guy be back and make you miserable. Try to find something you like to do, and don't ever think about reoccurence! Take every minute and fill it with fun, joy and love! Cancer here or there, either way, we live only once! Not worth to worry about it. It is not in our control...but our worry makes our lives miserable, and plus helps us to stress our body and hence increase the chances of having cancer back.

     

    Please, do not worry. I know, easier said than done, but really. Now, go and enjoy life! Don't think about it! Enjoy every minute of it...don't think about cancer coming back...don't think about getting hit by a car tomorrow....doesn't matter right now. What matters right now is your LIFE! All of us have ONE life...all of us...enjoy it!!! Try not to worry!!! All the best!

    Thank you!

    I worry about reoccurance and I'm still going through the chemo. 

    I will copy and past your list to my cancer file, and read it now and again to remind me, don't worry, be happy. 

    I find my wrst time of worry is when I first go to bed. I have a selection of relaxing music which I play, that calms me, but its still hard at night. When its dark my thoughts grow dark. 

    Worry is a normal, but it still needs for us to get ourselves in control. 

    Good luck with everthing. You have come to the right place for help and support, and even love. 

     

  • thxmiker
    thxmiker Member Posts: 1,278
    We all are afraid of the

    We all are afraid of the unknown.  It seems simple but it is not.   We also have to uderstand that life is fragile and we have many more factors then cancer in our future.

     

    Last night a friend of mine and his son went out to dinner.  After dinner on the drive home a driver crossed the boulevard and hit them head on.   His son was in the ICU until a couple of hours ago.  Just a couple of broken ribs, and no internal bleeding. Just surface massive bruising. My friend just had a badly bruised nose.  WOW, I am worried about cancer when there are to many things that can cut our life short. 

     

    I have cancer, and the pains that go with it. Unfortunately, that is my new normal.   I will do my best to live as normal as I can for as long as I can. I will be upbeat and positive. Others have life worse then me, and some have it better.  We all can have life taken from us from some out side source no matter what we do. Cherish what you have!  Live life with few if not zero regrets. Tell those that you care about how much you appreciate them.   These are the things that truely matter.  (A little perspective.)

     

    Best Always,  mike 

  • BusterBrown
    BusterBrown Member Posts: 221
    Compartmentalize...

    Hi,

    This seasoned pro knows all to well what you are talking about.  I've received test results at least 20x, and it's never easy. I always feel like im in that russian roulette scene in the movie Deer Hunter. In my case my doctor doddles around for a good hour and comes in and gives me the news, again, it's never easy.  What I learned to do is compartmentalize my illness, I'll pull it off the shelf and address it when I have to, and the minute I'm done, I put it back on the shelf and live my life. I learned early on that cancer can be  all conusming and I just wasn't going to let it beat me mentally.  I was dx's at age 42 w/ stage iv crc, today at age 51 I'm in remission for the 3rd time.

    Buster...