Afraid of Recurrence

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

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

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

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?

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

Best, Vita

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 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 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!

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!    

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