• The fear of recurrence

    Asked by nancyjac on Sunday, November 25, 2012

    The fear of recurrence

    After a year of being active on this site, I've seen and responded to many questions concerning the fear of recurrence. IMO, it's bad enough that your life is ruled by cancer for the months, or sometimes years, that you are in active treatment, but what really saddens me are people who then spend the rest of their lives dominated in what to me is an irrational fear of recurrence. What I don't understand is that most people don't live their lives in fear of cancer before they are originally diagnosed, so why live in fear of recurrence after attaining a NED status? Just as many people who have never had cancer before are diagnosed every year as there are people who are diagnosed with a recurrence. Odds are, if you live long enough, everybody will get cancer at some point. Being prudent about taking care of your health (whether cancer or anything else) is one thing, but letting an irrational fear of cancer recurrence run you life is quite another. What's your take on this?

    35 Answers from the Community

    35 answers
    • Nancebeth's Avatar
      Nancebeth

      I agree with you. Although I am only a few months out from my NED status, I am living as if I never had cancer. I had what I hope will be my last surgery on my breasts earlier this month and as soon as I am cleared to return to the gym (hopefully this week), I will do so and continue living a healthy lifestyle. If it comes back, so be it. I will handle it then like I handled it the first time.

      about 5 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      I don't think it's abnormal for someone, post diagnosis and in remission, to fear recurrence. It's a natural human response. I do wonder though if the fear is geared toward cancer or the treatment of cancer? I felt just fine before receiving chemo. I can't feel my feet now thanks to Cisplatin. There is nothing wrong with "worry" from time to time but I agree that you can't be irrational about it. You can't let is consume your daily lives. I fear recurrence from time to time but it doesn't take over my life. It's not something I constantly think about. I shared my concern of recurrence or another form cancer with my Oncologist at the completion of chemo and his response was, and I'm quoting him here, "Look, this is why we did your dosing the way we did. You're more likely to die of a cold than you are of cancer". You have some valid points but I think it's normal to fear cancer.

      about 5 years ago
    • karen1956's Avatar
      karen1956

      Not sure if it is fear or just the knowledge that I can develop mets, is always in the back of my mind....but it is not preventing me from living my life the best I can....actually, it may be fueling living life....living life for today and not putting things of tomorrow....if I want to do something, I do it....I still take care for my family as I did before BC, and now I've added the responsibility of caring for my aging parents.....But before BC, honestly, I never gave any thoughts to getting BC (or any other type of cancer) or I would have taken out cancer insurance...but now that I've had cancer, I am at a higher risk for recurrence than I was before BC of getting cancer.....1 in 7 women in Colorado will be diagnosed in their life time.....I'm at about a 35% (give or take) of a life time recurrence.....Again, I don't let this immobilize me, but it is always in the back of my mind, especially when I know someone who has lost their fight (not just cyber friends, but I have 3 or 4 friends/acquaintances here in town, who lost the battle) in recent years.....Fear does not rule (or ruin) my life, but maybe makes me go for the gusto!!! I travel more than I did before BC and if something is important, I don't put it off....hope this makes sense :)

      about 5 years ago
    • nancyjac's Avatar
      nancyjac

      That's exactly the way I see it Nancebeth. I'm eager to start doing some PT (mostly self guided) too. Waiting for my medicare advantage plan to kick in (should be 1 Dec or 1 Jan) which pays for my gym membership.

      Good point about the cancer/cancer treatment, TC. Maybe it more the fear of treatment, since that is the one difference between original diagnosis and recurrence. That might also explain the difference between people feeling "it won't happen to me" pre 1st diagnosis vs. "I'm constantly in fear" after that diagnosis.

      about 5 years ago
    • nancyjac's Avatar
      nancyjac

      That's the problem with statistics Karen, they are so readily manipulated or misinterpreted. If 1 in 7 women (14%) are diagnosed in their life time then it seems your 35% odds of a recurrence put you way ahead of the game. You are already the 1 in 7, so 35% of 14% is 5% of the women in Colorado. So statistically you should have been 3 time more afraid of getting cancer in the first place as you should be of a recurrence.

      about 5 years ago
    • Harry's Avatar
      Harry

      I don't think the fear is irrational. After all, a patient has just been smacked over the head with it and probably ought to be wary of a second time. Some of the treatments themselves cause cancer down the road so one might fear that. And some cancers never really go away. So, while the never diagnosed may be living in blissful ignorance, the once burned twice shy among us have received a powerful lessen in. "Yes, it can happen to me."

      That said, what is counterproductive is allowing the fear to take over. You beat it once. It may come back and you'll just have to fight it again. Until then, appreciate the joys of living as much as possible.

      Even if one is still fighting it, try to live life as normally as possible. We never know our alloted time. No one gets out of life alive. It may be cancer, it may be something else, we don't know when we will go. Enjoying the now and not sweating what we can't avoid is the only way to deal. Those who are Christian might consider what Jesus said about the lilies of the field and the birds of the air.

      about 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      After my first diagnoses 24 years ago, I ran out of that place and never looked back. I spent 18 years free and clean, the only time I ever thought about it, was when I would feel a pain somewhere that I couldn't nail down why it was there. I had a couple of cat scans over the years because I was convinced that It was back. Turned out to be nothing, other than that, I never thought about it.
      Now after recurring twice, I still don't think about it everyday. I guess I should clarify, since I am in Cancer advocacy, I think about Cancer everyday, but I don't worry about me getting it again, everyday. If it happens, it happens, it will be another inconvenience along the path of my life. Until then, I'm doing what I like, when I like, where I like.

      You get it? I like!

      about 5 years ago
    • Nancebeth's Avatar
      Nancebeth

      I will admit that I do worry more about the "little" aches and pains than I ever did before I had cancer. However, I also don't let those little worries freak me out either. It is always in the back of my mind but I don't let the fear of recurrence interfere with the way I live my life.

      about 5 years ago
    • karen1956's Avatar
      karen1956

      nancyjac...actually for me, the statistics are 100%...either it won't come back or it will come back!!! I definitely don't loose sleep over it....I don't play with the other statistics....and not sure I follow your reasoning/statistics, but since I go with 100%, none of the other statistics matter....as I said in my other post, the "fear" of recurrance is more of a driving factor to live life the best I can, and to do what makes me happy and gives me joy....if I want to travel or whatever, I now do it....something I never did before Dx...I have taken 2 big trips by myself, something I don't think I would have done before....gone to Israel the past two summers by myself for 3 1/2 and 4 1/2 weeks.....I now only work 3 days/week and have time for me...to volunteer, to go out with girlfriends, to do whatever......before BC, during Tx and the first couple years after I worked full-time....so I guess the "fear" is more take time for me...cuz you don't know when you wont' have time...its a productive "fear" not a paralying fear....Thanks for starting this discussion!!!

      about 5 years ago
    • nancyjac's Avatar
      nancyjac

      Karen, ya' got me, which is what I intended. My point was just to show how irrelevant statistics are. I'm with you on the all or nothing. It will or it won't and no statistics or interpretation of them will change that.

      about 5 years ago
    • ImStillHere's Avatar
      ImStillHere

      It probably depends on how your treatments went. I had a terrible time with chemo (lost 50 pounds), and still have side effects from Taxol a year and a half later.The thought of having to do chemo again terrifies me. Plus shortly after I was done with treatments, I watched my mother die of cancer. I try not to worry about it constantly, but I still feel like cancer is stalking me sometimes. It's also worrisome to see how cancer is just ripping through friends my age like crazy (I'm 46).

      about 5 years ago
    • ImStillHere's Avatar
      ImStillHere

      I also forgot to mention that having young children can add more fear. I go to a cancer support group sometimes (for all types of cancer), and all of the participants have grown children who are married and settled. It seems to give the participants in our group an enormous sense of peace and security that their children are grown up and fine. Those of us with young children don't have that sense of security, which can increase our stress levels.

      about 5 years ago
    • JMS's Avatar
      JMS

      Well, since I put out the original question, let me also try to respond with my perspective. Having adopted a very upbeat attitude to the illness since diagnosis (despite the rigors of treatments and surgery), I was beginning to worry about how best to move from an active "fighting" mode to trying to rejoin life - hopefully for a very long time. The many responses and cautionary notes have been very helpful, chiefly because I see I'm not the only person with these types of concerns - they are a normal part of the cancer journey. I intend to remain positive, but, yes, when the periodic scans are scheduled, I'm likely to have to deal with some apprehensions. Many thanks for all of your helpful input.

      about 5 years ago
    • Zippy's Avatar
      Zippy

      Sorry to be a dissenter, but I don't think fear of recurrence is necessarily irrational. I think the answer to this question is considerably more nuanced, and depends on what type of cancer you have, and what stage it is. I am also trying to live fully and optimistically, relishing each day for its joys. Usually, I succeed.

      But I would be substantially less fearful if I were still living with my original diagnosis: stage 1 of an easily treatable cancer with a 90% cure rate. Unfortunately, pathology tests after surgery revealed Stage IV of a rare and aggressive cancer with a poor prognosis.

      Having just seen a good friend, a cousin, and a lifelong role model die within the past three months, I can't pretend that I'm not fighting the battle of my life. And fearing recurrence doesn't just seem like irrational paranoia.

      So, I would caution those among you are are NED, or have early stage cancers, or those with a high cure rate, to be a little more sensitive to those in this community who are facing longer odds. As my oncologist suggested, "try to live with optimism...but realism."

      I do. But it's hard. And my sympathies - and understanding -- go out to others facing down the same grim reality. And if I'm fearful, facing my first post-chemo scan next month, I don't want anybody telling me that I'm irrational.

      about 5 years ago
    • dealite2007's Avatar
      dealite2007

      Good morning, nancyjac;

      I think the same way as you, but having the benefit of going to a cognitive behavior therapist in the past, I understand how our minds work on autopilot, unless we know how to change them. I think people live in fear of recurrence because of their mind's lack of experience with this truth.

      Now, we have cancer. This is something we haven't had to deal with in life and we are not programmed to "fix" our thought process. What to do? Well, in cognitive behavior therapy one technique is you think of the absolutely worse case scenario. I was having difficulty this past summer and panic over my son leaving for college. He's my one and only and I've been a single mom since he was 9 months old. I have no other family..just him. And, the thought of him leaving (and in my mind it was forever) was causing me extreme panic. Although this sounds horrible, she had me think every day for as long as I could (which wasn't more than 30 seconds) what life would be like if he were to pass away. It was horrible and upsetting and severely stressful to think. But, funny thing, after doing it for a week for a few seconds daily...my mind automatically corrected my thinking and I was calm because I knew he wasn't gone.

      So, what I've had to do with this monster is to think about a worse case scenario for me personally regarding my health, and it was having a massive heart attack (as my mother did at my age--56). It came without warning..she was thin, active, etc. That is so scary for me to think because I am my mother's daughter. Using the cognitive behavior technique this way I realize that this monster isn't sneaking up on me anymore and I am aware of it's tricks and, therefore, can be proactive and slam it into the ground. And I know I have many days ahead of me. This way of thinking over and over has literally changed my thought process from one of dying from cancer to one of living with cancer.

      I don't know if I explained this properly, but I hope it helps someone out there.

      about 5 years ago
    • SunnyCloud's Avatar
      SunnyCloud

      I agree with "ticklingcancer" and I too only worry/think about it now and then. I try very hard to live as I lived before cancer.

      about 5 years ago
    • BoiseB's Avatar
      BoiseB

      I am one of those people who have lived the major part of their life with the fear of cancer. I have feared cancer since the age of ten. I am a "Downwinder" (one who was exposed to radiation from the bomb tests in the late 40's, 50's and 60's) I actually lived my life trying to promote heart trouble. When cancer actually occured I was almost relieved. The worst fear had been realized. Now recurrence is just about the same as the odds were before.

      about 5 years ago
    • gwendolyn's Avatar
      gwendolyn

      For the first 46 years of my life I was one of the healthiest people I knew.  I never even got head colds.  I've consistently maintained a healthy lifestyle.  My family history is clean.  For the last several years I have been a participant in the ACS' Cancer Prevention Study - 3.  

      Earlier this year I was diagnosed with Stage III, Grade III breast cancer less than six months after a clear mammogram.  Still undergoing treatment, I am being closely monitored for intermittent atrial fibrillation and reduced heart function.  I have lymphedema in my primary arm.  

      I don't know how I'll feel a year from now when I finish treatment but I imagine I will still be quite shell-shocked.  I am a very analytical person:  Since no one can tell me what "caused" this cancer, what can I do to avoid it in the future?  To over-simplify my thinking, I was doing everything "right" before, see? 

      To the best of my ability, I will go back to my healthy lifestyle, but I don't know how I'll ever regain confidence in my ability to keep myself and my children safe from this horrible disease.  I will do my best not to let it occupy my thoughts any more than necessary.

      about 5 years ago
    • rob58's Avatar
      rob58

      i too have the same fear of recurence.i have 2 years survival of stage 4a tonsil cancer.i know 2 people who are 10 years or more survivors of head and neck cancer and are still alive. one is over 80 yoa

      about 5 years ago
    • mgm48's Avatar
      mgm48

      I agree, but, I lived as if it would never return. I got lax and by the time I found out it had returned, it had gotten a really good head start. We have been playing catch up ever since. So, my one advice would be that while no one should let cancer run their life, stay vigilant.

      Keep it positive and smile :)

      about 5 years ago
    • GypsyJule's Avatar
      GypsyJule

      I'm still going through treatment, and admit that I am already worried about recurrence. I don't think it's in irrational fear. I agree with fastdog who says, "I have so much to be thankful for, and wish I were really as brave as other people think I am." I wish this were about bravery, but it's really about survival.

      about 5 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      Zippy has a great point. It's easy to not worry about cancer if you're in remission with a very good prognosis or low recurrence rate. That's why I don't necessarily agree that it's a irrational fear. It may be an irrational fear for me or someone who's been in remission for 10+ years but someone taking it day by day, I should be more understanding of. But I tell you, as many of you have said, it's the treatment for the cancer that wares you down. Chemo kicks your butt...no way around it. I couldn't imagine having to get chemo on a regular basis. My heart breaks for anyone that has to experience that. We need more cures so that everyone can live without fear of recurrence.

      about 5 years ago
    • derbygirl's Avatar
      derbygirl

      I have been ovarian cancer free for 4 years after my diagnosis and surgeries and I currently get tested every 3 months. I think the fear is a normal feeling but it is whether you let the fear control your life. For me it happens every 3 months when I get tests done and I wait for the results. I still function through my daily life but I still worry until I get the call with the results. Then I go about my life normally and enjoy life. I think it is ok to worry but it is not ok to be paralyzed by the fear.

      about 5 years ago
    • Snooks' Avatar
      Snooks

      I cherish every day I have since being diagnosed in 2006. You are right, one cannot live their life in fear of recurrence. Since there is nothing you can do about it (other than taking good care of yourself), don't sweat the small stuff!!!

      about 5 years ago
    • LauraJo's Avatar
      LauraJo

      I am only two years out from diagnoses, and 18 months from NED status. Hopefully, I will never have to deal with a recurrence, but I would be stupid to think it can never happen to me again, especially with all the radiation from the various scans. I was always healthy, and active, and having cancer really floored me. When the rug gets pulled out from underneath you, it takes a while to trust your balance again. I try really hard to just get on with life, and am successful most of the time, but every so often it sneaks back into my head. I'm sure with time, and good reports, those "every so oftens" will come less & less often, but I don't think it is irrational (and I am not quibbling with the word) to need time to process this situation. However, having said that, right after I was diagnosed, I missed being in a car accident by about 2 inches, and at that point, figured it just wasn't my time yet, so I am planning on being around until it is my time, whenever and for whatever reason. I've got too much stuff to do yet!

      about 5 years ago
    • nancyjac's Avatar
      nancyjac

      I think maybe I should clarify something that perhaps I didn't state clearly in my original post. I did not intend to imply that it is irrational to think that you might or even probably will have a recurrence of your cancer. What I find irrational is compromising your quality of life by having that fear dominate your life. How does being afraid or worried about a recurrence improve the quality of your life? How does it lessen the likelihood or delay the recurrence? There are cases when fear is a positive thing. It can cause an adrenalin rush that momentarily causes us to be faster and stronger and more able to get out of the way of imminent danger. What saddens me are those that are living to die instead of dying to live. In other words, whether you have a month, a year, or a decade or more before you die, why spend that time fearful, worried, angry and/or depressed about the fact that one day you are going to die of something?

      about 5 years ago
    • ScrapbookerKay's Avatar
      ScrapbookerKay

      I do pretty good, until it's time for the check up scan.Then it feels like waiting for the other shoe to drop. In January it will be 3 years in remission. But 1 lady in town is fighting for the 3rd time. Another older lady finally lost her battle after the 8th time. Those numbers are really depressing. I guess we need to stay positive and try to do what's healthy with our lifestyle. And know that it's normal to be a little worried from time to time.

      about 5 years ago
    • Topazcat's Avatar
      Topazcat

      When I was diagnosed 2 years ago with stage 3b inflammatory breast cancer that had not been there 4 weeks ago, I was told that it was considered a medical emergency. With in a week I was at Mayo Clinic. After 16 chemo treatmants, a bilateral mastectomy, and 36 radiation treatments, I was told I had about a 32% chance of being alive in 5 years. I did not let cancer or the treatment dictate what I would do with my life. I continued to work and do things as I had done before cancer. Now I have been NED for a year and find myself thinking of cancer almost daily. Sometimes for just a few seconds, and sometimes for hours late at night. I know that it is not healthy but can't seem to let it go. I am not afraid of the treatment again because I did it once and will fight again if I have to. I am afraid of not being here to see my children settled in there lives and watch my grand children grow up. On the outside I am the same strong, positive, take charge person that my family and friends have always known. On the inside, I am not sure any more who I am.

      about 5 years ago
    • kacy's Avatar
      kacy

      I went to the lab today to have my CEA level checked. I was diagnosed with colon cancer last April. Surgery left an open margin so my chance of recurrence is 4 fold what it would normally be for stage 2. It haunts me. I am also facing ventral hernia repair next month. I think that fear of what's ahead is exacerbated when so many other things are going on in my life.

      about 5 years ago
    • Beaner54's Avatar
      Beaner54

      If you think about it...there wouldn't be a need for this site if cancer wasn't a part of our lives.
      There is no need to be judgemental as we are all unique. If we have fearful times, this is the best place
      to vent because we are all in the same boat.

      about 5 years ago
    • Nancyb's Avatar
      Nancyb

      Twelve years ago my 53year old husband died within three weeks of being diagnosed with cancer that had metastised to his liver. This was from a tumor that had formed inn his eye causing him to lose the eye. He spent a large part of his life worrying about getting cancer in his later years and mourning the lose of his eye. I have continued too mourn him and always will. The thing. I learrned from this is you can spend the time you have remaining in your life whatever that may be in fear. Or you can push those fears away and try to find the positives of your personal situation. When I was diagnosed with Bc I looked for the benefits. Breast implants which I. Never would have chosen for myself. New hair (still curiuos to see how that is going to turn out) paid time off( I never take time off) just a littlle humor. The point is stay as positive as you can and move on with your life and allow yourself to be happy moving forward. You are allowed. And feel blessed that you can. You are.

      about 5 years ago
    • k2blader's Avatar
      k2blader

      How is fear/anxiety over cancer recurrence "irrational"? I think it's the opposite: natural, understandable, dare I say-- normal.

      I think largely due to personality differences, some need to work a little harder than others to not let anxiety overtake them. But here are some other reasons why folks may be especially concerned about recurrence:

      -Diagnosis at a young age: When people generally expect you to be a healthy, productive member of society, you are instead having surgeries and treatments, can't function like your peers and/or are unable to work for periods of time. Basically, you're extremely 'different' from others your age. Younger folks don't want to stay that way forever.

      -Advanced stage diagnosis or diagnosis of a 'particularly bad' cancer: One of those is enough to deal with-- but think of the people who deal with both. I'm willing to bet there are many out there who'd be less prone to anxiety if they were stage I and/or had a type of cancer with a very high cure rate.

      -Financial and employment difficulties: Paying for cancer treatment isn't cheap. Even if you have a job with health insurance, you need to work to earn money to pay for treatment. Sometimes due to treatment you won't be able to work. If unable to work, you could lose your job. If you lose your job, you can go through your savings, then... ?

      -Caring for your family and loved ones: some folks feel a very strong desire to prevent their loved ones-- children, spouses, parents, etc.-- from having to 'go through it again.' The concern is not for oneself but for the other people upon which recurrence would place extreme hardship, emotionally, financially, and even physically. Recurrence never affects just you.

      Think about it.

      almost 5 years ago
    • dpowell296117's Avatar
      dpowell296117

      I'm not going to say that I don't ever have the thought of cancer coming back, but it's just that, a small thought. I then tell myself it's not coming back, get on with your life and live it! Helping others helps too. My Faith is strong, so I rely on my higher power to take care of me. God is my strength! not the cancer! Everyone just take one day at a time and enjoy life! cancer is a little"c" but Christ is your BIG "C".Be around positive people also. I work at a daycare so the kids always keep me happy!

      over 4 years ago
    • Frankieflute's Avatar
      Frankieflute

      Well, I admit I am afraid. I have three young children who are the light of my life. I have a home, a little work, and a husband that I love (who also had cancer age 49 like me). I have had an early stage cancer but I have had life changing illness before and our son was stillborn, so I am well aware that it is possible to be in the unlucky minority. I talk to a great counsellor, and am now taking beta-blockers but the fear is paralyzing at times, and it is not unrealistic. I'm in fear of recurrence because that would not be cureable, and I could miss seeing my girls grow up and giving them everything I want to give them. I feel like I am in two worlds at once most of the time, and there is pain in all the pleasures.

      almost 4 years ago
    • Marci's Avatar
      Marci

      I agree with most of the posts. Had BC in 2007 and recurrence in 2013. While going through surgeries/chemo/radiation surviving was forefront in mind. In 2013 I did genetic testing for the BRCA - negative. I will repeat testing in a few years, since there are many more mutations being identified as research moves forward. The testing provides me some peace of mind that my daughters will not end up wih this. While I was undergoing treatment, survival was forefront in my mind. Now with a couple of years behind me, it is very secondary. I live my life and feel blessed for each day that I wake up. I am working on being more present and will take trips with my husband more frequently than before, work being secondary. It is a reality that we are both aging, each in different ways and I want to see the world while I can. I wish you peace in your journey.

      almost 2 years ago

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