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Afraid of Recurrence

tammyghent
Posts: 7
Joined: Mar 2013

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?

PatchAdams
Posts: 272
Joined: Nov 2011

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. 

 

 

KayeKay's picture
KayeKay
Posts: 122
Joined: Jan 2013

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.

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

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's picture
AnnLouise
Posts: 276
Joined: Mar 2013

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

John23
Posts: 1832
Joined: Jan 2007

 

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

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

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

janderson1964's picture
janderson1964
Posts: 1562
Joined: Oct 2011

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's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

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

 

Deena11
Posts: 193
Joined: Nov 2012

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
Posts: 272
Joined: Nov 2011

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. 

 

Deena11
Posts: 193
Joined: Nov 2012

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.

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

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

Best, Vita

 

marbleotis's picture
marbleotis
Posts: 482
Joined: Mar 2012

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
Posts: 2
Joined: Apr 2013

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's picture
sharpy102
Posts: 338
Joined: Apr 2009

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's picture
KayeKay
Posts: 122
Joined: Jan 2013

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!

Trubrit's picture
Trubrit
Posts: 1396
Joined: Jan 2013

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. 

 

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Your words caught up with me this morning:

"When its dark my thoughts grow dark."

"Dr." Sundance actually has a 'cure' for this condition...'bout the only one I still got left in my medicine bag - and it's all yours:)

I hope this helps you - after reading, you'll know what to do:)

All my hopes and wishes to you!  Now sleep a little bit better...me & Big Billy got you:)

Love/Craig

"The Story of the Man They Call Big Billy"

 Copyright © 2013 [Craig Harrison]. All Rights Reserved.

 It was late winter of 2010 and the nights were long and dark.  I had tied one on at the Infusion Center Lounge that day with yet another Folfiri Bender – which was one of the most popular chemo cocktails that they serve at the local waterin’ hole I imbibed at. 

I was sicker than the proverbial dog and all hopped on The Dex, and the 5fu pump was hanging off the headboard whirring and clicking and systematically filling me full of poison with each audible turn of that annoying sound the motor makes each time it cycles and delivers you the juice. 

 

I laid there in bed motionless hour after hour, listening to the wall clock mock me from the other side of the house with its relentless chiming that marked each passage of time – a haunting melody that became the subtle and audible reminder of yet another sleepless sixty-minute span of time that I would never get back. 

 

It must have been somewhere between 3am and 4am in the early morning – that thin layer of time that separates the night from the dawn – a time whether it is neither night nor day – a time where things can come unhinged either physically, mentally, or emotionally for those cancer combat infantry personnel who find themselves marching on in the cancer battlefields of our minds. 

 

It is affectionately known as The Witching Hour for so many a cancer patient, who find themselves in the throes of treatment – it’s a very special time when we find ourselves totally alone with nothing but our thoughts to keep us company. 

 

It can be a time of deep despair and haunted visions – or it can be a time of enlightenment where certain truths finally align themselves in the perfect order, thus providing you the clarity and understanding of that, which you’ve been searching for those many long, soul searching nights.

 

It can be a time when we’re ready to put a stamp on it and mail it in with talk about quitting – or it can be a time where we pick ourselves back up and vow to keep moving forward. 

 

The beauty of this hour of time is that it’s all ours.  The Witching Hour is where the seeds of Personal Growth are planted that will one day come to fruition and be harvested. 

 

And, it’s from this process that we grow from within from what we allow ourselves to feel and experience during this window of opportunity each evening when the house grows dark and silent and we are left with only our thoughts for company. 

 

Each night, we never know what is going to run through our heads and what we will feel and learn when we lay our heads down on the pillow each night.  That’s the beautiful aspect of this part of the journey.  There are no rules and we’re free to live out whatever random thoughts and feelings that comes into our heads. 

 

It is many things to many people – but, in its simplest form, it is a time of Reflection.   It is a special time that allows us the permission to feel, think and explore the intricacies of the disease all that comes with it. 

 

This is our unique opportunity to confront the demons that are calling out to us.  It’s a time to ask questions – and it’s also a time where we may find some answers to some of the mystery that is perplexing us. 

 

One particular night for me before the early dawn, there was a stillness and a calmness in the air that was so eerily quiet, that I could hear my thoughts rattling around in my skull, like a ping-pong game gone mad on steroids. 

 

I was tired – I felt defeated – and at that moment in time, I had finally lost my way.  And in the process of doing so, I also discovered that I had lost my inspiration as well.  By the time I realized what had happened, it was already too late. 

 

By then, Hope had already packed a suitcase and was headed out the door to join the others.  It was a complete jail break and left me laying there feeling emotionally bankrupt and destitute.   

 

I was nearly a beaten man; swaying back and forth and grasping at those imaginary ropes in the fight ring that I thought were holding me upright – sort of like the image of a latter-day Rocky Balboa, just trying to go the distance in a title-fight against such a formidable adversary such as cancer. 

 

I lay there contemplating why I was fighting so hard and for what anymore.  I was trying to justify if feeling this sick every day was worth the price to be paid anymore.  What was the point anymore if this was all there was ever going to be?

 

Then, all of a sudden, I felt this silent lucidity come into play, where I began to question whether or not that I had the toughness or the right stuff anymore to do what it takes to get back to the final round of a title-defense that I had fought and won twice prior in my fight against cancer.  

 

I thought about the line that Apollo Creed used in the movie Rocky…”Ain’t gonna’ be no re-match…”

 

My thoughts drifted to thinking that all great fighters have to lay down the gloves someday and ‘retire.’  Maybe it was time for Cancer to retire me.  Over and over I could hear the words of boxer, Roberto Duran…”No mas.”

 

For a moment or two, I seriously contemplated taking my hands off the wheel…

 

And then ‘he’ came to me.  The idea of Big Billy and the ideology of what he stood for and represented to me – and what he might represent for other cancer fighters, who found themselves at a juncture in their own fights, where they felt their strength waning and their own mental resolve beginning to weaken. 

 

So, I created this persona of a character that would carry the markings of one tough cancer fighting dude – a guy that from the looks of him would be the antithesis of what I looked like, but on the inside he still carried the same ideals and values that I shared.

 

It developed into this symbiotic relationship, where each one of us could stand on his own merit, independent of one another.  In combination, we could become this unstoppable force in the cancer universe and transform ourselves into the Dynamic Duo. 

 

Just like that, the idea for Team Sundance was formed. 

 

Who is Big Billy?

 

Simply stated, he’s the muscle behind my hustle…

 

Big Billy became my alter-ego in the cancer world.  He was born a figment of my fertile imagination on a cold, winter night in 2010 and crystallized himself into the embodiment of an image that I wanted to represent.  More importantly, he became what I wanted to feel like once more.

 

And that was one of the baddest cancer fighters there ever was – one of the best to ever play the game. 

 

I think that what I was able to do was harness this image of our inner fighting nature that we all carry with us into our battles and then was able to manifest that persona into something that was tangible and readily identifiable that could represent us all. 

 

In essence, Big Billy represents “The Fighting Side of Us…”

 

Big Billy has always been that intangible element that we can feel – but never see.

 

Until now…

 

Big Billy does live – he lives in me – and he lives in you too! 

 

Keep fighting, you can do it!

 

irishhopeful
Posts: 11
Joined: Apr 2013

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!    

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

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's picture
BusterBrown
Posts: 221
Joined: Mar 2005

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...

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

I was stage 3c six of thirteen nodes cancerous. I have been clear now for over fifteen years. I won't tell you not to worry but I will tell you to live your life . Time can pass you by very quickly.it really isn't about how much time we have ,it's how we choose to use it. Enjoy it,Ron.

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

I was stage 3c six of thirteen nodes cancerous. I have been clear now for over fifteen years. I won't tell you not to worry but I will tell you to live your life . Time can pass you by very quickly.it really isn't about how much time we have ,it's how we choose to use it. Enjoy it,Ron.

Luckygirl2
Posts: 308
Joined: Mar 2012

You and I are almost on the same timeline.  I was dx'd June 2011, right colon is history, 4 lymph nodes, 3B.  Good news is don't have to worry about apendicitis!  I have check ups every three months, due for cat scan and colonoscopy in June and my 3 month is here on the 30th - I think I worry the entire month ...  I try not too but it just creeps in and sets up house.  Every ache...good news is, I don't think about my cancer every day now..I do actually skip a few,,,which is really nice.  when you are in the oncology office every three months hard not to think about it but I wouldn't want to not be... Dr. Koch is my security blanket I think...  if its there he'll find it...  one day, you'll be doing something and it will dawn on you that the word "cancer" has not been in your thoughts for a few days and you will smile.

 

Oh, you are not negative, you are  normal, we are normal.  Or at least it is my new normal.  Best results for your scan, be sure and let us know.  Good news is wonderful to see!

 

Debbie

thingy45's picture
thingy45
Posts: 571
Joined: Apr 2011

I also have my yearly ct scan planned for next week. Anxiety galore ofcourse, however, if we did not have the scan we are sticking our head in the sand. IF it reoccurres, I like to know as soon as possible to kick the brute in the head as fast as possible.

I still try every day to think and live positive. Today my daughter has her brain surgery........ nervous is not even the word, I am a wreck. Thinking possitive, ofcourse, BUT, there is always that little devils voice inside my head that says... what if....!!!

Life changes after a cancer diagnosis, your thinking changes, you loose friends and find new friends.Cancer  or cancer related topics pop up in your mind every few minutes, there is no getting away from it. every little pain or twitch you start to think... this is it...is it back? It is not the knowing that we fear, it is the "what if"! I rather be told you will die that  day then keep on guessing when?. I am a doer and a planner, not being very patient either. If it returns... then I can plan en do and go forward.

So YES, every scan is a stress test by itself, I think for all of us.

 

 

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

I was deathly afraid of a recurrence.  Then something magical happened.  I got a new dx - sacral cancer, very advanced, put your affiars in order and go to sloan kind of news.  I thought I was going to die any second.  Turned out to not even be cancer - just a huge and severe chronic infection.  Here it is two years later and i never think about cancer.  It could take me a tany time.  It could take anyone.  Why worry about that when I have things to think about like dealing with an ostomy blowout at work (like today). Or my daughter and son-in-law taking my grandkids to Africa (last time they were there my grandson malachi got malaria).  In fact the experience of the mis-dx caused me to put all thoughts of cancer out of my mind and until/unless it come up again it will stay that way. It has been ages (1 year in fact) since I have seen a doctor.  I am overdue, I know, but I am not anxious any more.  What good did it do me?  None. I am not foolish, I am going to schedule an appointment, it was supposed to be last July.  But it does not drive me crazy like it used to.  

I hope you don't have to go through something like that to put things in perspective, it was truly frightening.  But, almost anything can help gain some perspective on your cancer journey.  I hope it takes something much less than have the witts scared out of you.

best wishes

rick

 

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