Fear of Cancer Coming Back

LynnKT
LynnKT Member Posts: 47
I have been doing well since I finished chemo and radiation several months ago. My hair has grown back well. I occasionally have mental freezes, but other than that, I can't complain at all. I have found, though, that I still fixate on the cancer sometimes and worry about it coming back. When I wake up in the middle of the night it can be worse. Normal, I guess! My bc was stage 1, grade 2/3. I know many of you out there deal with this problem. Any ideas how to overcome undue fear?
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Comments

  • Rague
    Rague Member Posts: 3,653 Member
    IBC
    I'm IBC so the stats aren't great. Depending on what study you read, I have a 25% - 45% chance of making to 5 years post DX, where over all the % is 87% for all BC. At this time I'm riding NED and have been for over a year.

    It's where 'you' choose to dwell. Could I get mets - you betcha. I'll deal with that IF it happens. I'm not borrowing problems that aren't there. I still have my port in place - not becuae I expect mets because I'm comfortable with it staying there as a 'life jacket' already in place IF it's needed. When I hit 5 yrs out - it'll be out but not now.

    "Fixation" - the only thing I'm fixated on is living every day to the utmost I can - IBC was just a 'road bump'.

    Susan
  • Texasgirl10
    Texasgirl10 Member Posts: 668
    I think we all worry about that
    Lynn, I think that once we hear the words out of our doctors mouths we all have some worry and concer and it seems like it will be that way forever. I wish I could tell you not to worry, but I can't, so what I will say is try to relax and enjoy each and everyday. Not very helpful words I know, but it's the only thing that I can tell myself.
  • missrenee
    missrenee Member Posts: 2,136 Member

    I think we all worry about that
    Lynn, I think that once we hear the words out of our doctors mouths we all have some worry and concer and it seems like it will be that way forever. I wish I could tell you not to worry, but I can't, so what I will say is try to relax and enjoy each and everyday. Not very helpful words I know, but it's the only thing that I can tell myself.

    I don't know if that fear will ever go away, Lynn
    but I think maybe as time goes on, we'll think about it less and less. Since I've finished physical treatment--I'm now working on mental treatment. I attend group therapy at the Wellness Community weekly, and I've gone to seminars about dealing with life after cancer. I also attend Tai Chi, Yoga and guided meditation classes. All of these things are helping me try to live my life now more in the moment, finding more meaning and fretting less about the "small stuff."

    Hopefully you and others have resources in your communities like this--if so, take advantage of them. They are really helping me.

    Hugs, Renee
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Hester Hill says in her book
    Hester Hill says in her book (Life after Cancer, I think) that it will take as long to recover from your treatments as it took to complete your treatments. So if it took nine months to get through surgery, chemo, and rads you should give yourself nine months to recover.

    That recovery also includes dealing with all the fears and emotions that come with this dx. I agree with Miss Renee, now is the time to work on the emotional and mental part of this journey.

    Hugs,

    Linda
  • aysemari
    aysemari Member Posts: 1,596 Member
    Validate your fear and move on
    What worked for me was to validate my feelings. I did yoga a lot
    and meditation, both helped me to stay calm and focused. My focus
    was healing. For the past year everything else came second to healing.
    When I felt the fear creeping up, I take a minute listen to myself,
    then just shift my focus to all the things I can do again and the well
    being I have experienced as of lately and it calms me down.

    Fear has never held me back, we could be afraid of so many things.
    It's not the way I want to live my life. My approach is more about
    living in the moment... no one know what tomorrow may bring whether
    they have cancer or not. I am just so DARN happy to be alive! There's
    not much room left for anything else.. I lived through it all, feeling
    terrified at time of diagnosis, utter feeling of having no control over
    your life anymore, grief for who I used to be.. it was a process but
    I am now at a point where I just want to live!
    P.S my name Ayse translates into "to live" in arabic

    Hugs,
    Ayse
  • Hippiechick58
    Hippiechick58 Member Posts: 320
    aysemari said:

    Validate your fear and move on
    What worked for me was to validate my feelings. I did yoga a lot
    and meditation, both helped me to stay calm and focused. My focus
    was healing. For the past year everything else came second to healing.
    When I felt the fear creeping up, I take a minute listen to myself,
    then just shift my focus to all the things I can do again and the well
    being I have experienced as of lately and it calms me down.

    Fear has never held me back, we could be afraid of so many things.
    It's not the way I want to live my life. My approach is more about
    living in the moment... no one know what tomorrow may bring whether
    they have cancer or not. I am just so DARN happy to be alive! There's
    not much room left for anything else.. I lived through it all, feeling
    terrified at time of diagnosis, utter feeling of having no control over
    your life anymore, grief for who I used to be.. it was a process but
    I am now at a point where I just want to live!
    P.S my name Ayse translates into "to live" in arabic

    Hugs,
    Ayse

    How eloquently put, Ayse!
    How eloquently put, Ayse! And btw, I love your name and its translation! I agree that mindful living is the answer (at least it is to me) We have to radically accept our dis-ease and all it entails, mainly because there is not a thing we can do to change our dx. We have fear, of course we do, but like Ayse said, we need to validate our feelings and then move on. I did DBT (Dialectical Behavior Therapy) for 4 years, and it has taught me to live in the moment. Not always possible, I know, but it is doable. I developed a mindfulness practice and try to use it every day (some days it's impossible, and that's where radical acceptance comes in handy.) Radical acceptance is where there is not a single thing you can do to affect a situation and so you just "radically" accept it and then move on. Instead of flailing against the tide, you take the situation and put it on a conveyor belt and watch it go off into the sunset. I hope I'm not confusing anyone. If anyone would like to learn more about DBT, just send me a message.

    Good luck and God bless,
    Dianne
  • csr771
    csr771 Member Posts: 117
    False Evidence Appearing Real - FEAR
    We all have fear. I think that it rears its ugly head in different forms for each of us. I think that it is something that we have to learn to live through and grow from. No small order, but necessary for us to take back our lives. I don't think that there is any easy way to do it. I know that I get very anxious very easily. It is hard to see positive things for my future. Probably if I looked really closely at the root of some issues, fear would be there--smiling at me and stealing my joy and peace. However, I must realize that where I am emotionally, physically and spiritually is only a place that I am passing through. It is not a place of permanent dwelling. We have to find a way to get through it so that we can get to a more tolerable place emotionally and physically--and spiritually depending on your beliefs. Fear is nothing more than False Evidence Appearing Real. We can tell ourselves any number of things, but it doesn't mean that it is or will be true. A mirage in the desert is an optical phenomenon--looks real, but it is not. Fear is no different. It can play tricks on our minds and spirits. We have fought cancer, we also have to fight through the fear so that we can live the best lives that we can. It's just another battle and we are warriors.
  • missrenee
    missrenee Member Posts: 2,136 Member
    csr771 said:

    False Evidence Appearing Real - FEAR
    We all have fear. I think that it rears its ugly head in different forms for each of us. I think that it is something that we have to learn to live through and grow from. No small order, but necessary for us to take back our lives. I don't think that there is any easy way to do it. I know that I get very anxious very easily. It is hard to see positive things for my future. Probably if I looked really closely at the root of some issues, fear would be there--smiling at me and stealing my joy and peace. However, I must realize that where I am emotionally, physically and spiritually is only a place that I am passing through. It is not a place of permanent dwelling. We have to find a way to get through it so that we can get to a more tolerable place emotionally and physically--and spiritually depending on your beliefs. Fear is nothing more than False Evidence Appearing Real. We can tell ourselves any number of things, but it doesn't mean that it is or will be true. A mirage in the desert is an optical phenomenon--looks real, but it is not. Fear is no different. It can play tricks on our minds and spirits. We have fought cancer, we also have to fight through the fear so that we can live the best lives that we can. It's just another battle and we are warriors.

    You are all spot-on
    And I love the acronym for FEAR--False Evidence Appearing Real. So, so true.

    Ayse--I love your name and its translation too. Renee means "reborn" in French--and, in a way, that's just what I am.

    Let's all embrace the joy we find in this life.

    Hugs, Renee
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    missrenee said:

    You are all spot-on
    And I love the acronym for FEAR--False Evidence Appearing Real. So, so true.

    Ayse--I love your name and its translation too. Renee means "reborn" in French--and, in a way, that's just what I am.

    Let's all embrace the joy we find in this life.

    Hugs, Renee

    Fear
    I have the fear of it coming back.One thing that helps keep me be staying sane is my dx was a good one.Small tumor, non invasive DCIS etc but in the back of my mind my thought is "Will it ever come back and where".

    Friends and relatives are long living survivors with a much worse dx than me.Living long lives.Some of those I meet and know are survivors from 18 years to 60 years.Some also 6, 13 and 16 years.Long lives but those also feel it can come back sometime and they still have some lving to do.The 60 year survivor is gone but everyone else is still surviving.That is what gives me hope.

    I get mixed feelings but my doctors keep my hope up and tell me I will be OK. I am now telling myself that. If you don't you become a bundle of nerves.

    Lynn Smith
  • cahjah75
    cahjah75 Member Posts: 2,631
    Lynn
    I think most of us have some fear of it coming back or showing itself elsewhere but we try to put it on the back burner so that we are not always aware of it. Sometimes reading posts about recurrences on this site will bring up the possibilities and fears. I for one hope that my surgeon got it all. Life goes on. Don't let what if's take control.
    {{hugs}} Char
  • tigger99
    tigger99 Member Posts: 44
    With time it will get
    With time it will get easier. One of my survivor friends says "why worry about this? We could step off a curb and get hit by the beer truck tomorrow!" That helps me keep it in perspective, that there are so many things we could worry about if we allowed ourselves.

    And we've all overcome a very scary time in our lives but we are still here for now, so why not live "now" to the fullest?! In trying to live each moment to the fullest, there's little time for worry. And wouldn't it be sad to look back and think of all the time we wasted with worrying?

    Yoga helped me to live fully in the present moment, too.

    I hope all the replies to your post helped somewhat. It truly does get better with time.
  • poplolly
    poplolly Member Posts: 346
    Rague said:

    IBC
    I'm IBC so the stats aren't great. Depending on what study you read, I have a 25% - 45% chance of making to 5 years post DX, where over all the % is 87% for all BC. At this time I'm riding NED and have been for over a year.

    It's where 'you' choose to dwell. Could I get mets - you betcha. I'll deal with that IF it happens. I'm not borrowing problems that aren't there. I still have my port in place - not becuae I expect mets because I'm comfortable with it staying there as a 'life jacket' already in place IF it's needed. When I hit 5 yrs out - it'll be out but not now.

    "Fixation" - the only thing I'm fixated on is living every day to the utmost I can - IBC was just a 'road bump'.

    Susan

    Rague,
    I've finished chemo

    Rague,

    I've finished chemo and radiation and I have left my port in too. I feel like you do about it.
  • poplolly
    poplolly Member Posts: 346
    Lynn--Probably the reason I
    Lynn--Probably the reason I don't wake up in the middle of the night is I take Ambien so I can sleep through the night. I did take it before this cancer and I'm really glad to have it now. I find myself doing things I always used to put off. I like to paint so I've just finished a picture. I spending time with my grandchildren. I intend to volunteer in my granddaughter's school this next year. I do all of that and I pray which also helps.
  • dbhadra
    dbhadra Member Posts: 344 Member
    poplolly said:

    Lynn--Probably the reason I
    Lynn--Probably the reason I don't wake up in the middle of the night is I take Ambien so I can sleep through the night. I did take it before this cancer and I'm really glad to have it now. I find myself doing things I always used to put off. I like to paint so I've just finished a picture. I spending time with my grandchildren. I intend to volunteer in my granddaughter's school this next year. I do all of that and I pray which also helps.

    wonderful comments in this thread!
    I'm in the middle of treatment now and yes, the fear is there...will they get it all, will it come back, etc etc. I;m also IBC which does have a worse prognosis than many other types of breast cancer. What I tell myself is that it was caught relatively earlier, I am getting the best treatment possible, and beyond that there is not much I can do about the situation. Sometimes, I get angry and feel it;s unfair, sometimes I cry and let out my negative feelings.

    The only thing I do is to live in the NOW. Today is the only day that I have, and that would be true whether or not I had cancer. Cancer has just made me realize that, BIG TIME. Living in the now, practicing mindfulness of the present moment, not projecting in the future.

    I also go to a breast cancer support group, other meetings, starting to see a therapist, do yoga...working on my emotional recovery as well as the physical.

    Laura
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    So sorry
    I am not one to worry or fret even when waiting for biopsy or test results. I KNOW I am the odd one-I am not sure why I am like that...

    Have you tried journals? perhaps even some therapy?

    I wish you the best..

    Denise
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    So sorry
    I am not one to worry or fret even when waiting for biopsy or test results. I KNOW I am the odd one-I am not sure why I am like that...

    Have you tried journals? perhaps even some therapy?

    I wish you the best..

    Denise

    I am in awe of all you 'Fabulous' WARRIORS!
    We all suffer from -- "What if's" .. not allowing any doubt or fear to control our life and destiny, is another story.

    KUDOS, well stated Kindred Spirits --

    I love the support this site give to all --

    Vicki Sam
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    VickiSam said:

    I am in awe of all you 'Fabulous' WARRIORS!
    We all suffer from -- "What if's" .. not allowing any doubt or fear to control our life and destiny, is another story.

    KUDOS, well stated Kindred Spirits --

    I love the support this site give to all --

    Vicki Sam

    what ifs
    I think our whole life could be 'what if"?

    if I lose my job
    if I use up all my sick time
    if lost medical coverage etc

    I try to look at good side...I often think I was lucky I caught my BC early, Lucky have good medical coverage, lucky had saved up sick time and still had some left

    some people say OH POOR Denise...I said I had it much easier then many!

    Denise
  • LynnKT
    LynnKT Member Posts: 47

    what ifs
    I think our whole life could be 'what if"?

    if I lose my job
    if I use up all my sick time
    if lost medical coverage etc

    I try to look at good side...I often think I was lucky I caught my BC early, Lucky have good medical coverage, lucky had saved up sick time and still had some left

    some people say OH POOR Denise...I said I had it much easier then many!

    Denise

    Thanks to all of you for
    Thanks to all of you for your responses. I don't dwell on cancer all of the time, but it is a nagging reality. I have to say, though, that it is comforting to me to know from many of your replies that I'm far from alone. Regarding Ambien, I have tried it on occasion, but it makes me have strange dreams and feel weird the next morning.
  • crselby
    crselby Member Posts: 441
    what worked for me
    I'm 1.5 years out from active treatment. I have always been a positive person, to the point of being "Pollyanna-ish". But I couldn't get the fear of recurrence out of my mind, when my guard was down. Like at night. And the anxiety was depressing my immune system so that I was getting skin rashes from normal skin flora, yeast infection flare-ups, HPV flare-up (first time ever!). And my heart was pounding hard 24 hours per day. And I didn't like what seemed to be my "new normal".

    My usual attempts at meditation weren't serious enough (it's been a while since I did it regularly). So I started listening to some meditation 'tapes' (MP3 player) I was given during a breast cancer study that I was part of, before I went to sleep.

    Since I've done that, I do not wake up with pounding heart and that fear feeling in the middle of the night. Nor is cancer the first thing on my mind in the morning! Now I can go a night or two without listening to the tapes and I still remain my usual calm self all night and all day.

    I hope you find peace.
    ~~Connie~~
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    crselby said:

    what worked for me
    I'm 1.5 years out from active treatment. I have always been a positive person, to the point of being "Pollyanna-ish". But I couldn't get the fear of recurrence out of my mind, when my guard was down. Like at night. And the anxiety was depressing my immune system so that I was getting skin rashes from normal skin flora, yeast infection flare-ups, HPV flare-up (first time ever!). And my heart was pounding hard 24 hours per day. And I didn't like what seemed to be my "new normal".

    My usual attempts at meditation weren't serious enough (it's been a while since I did it regularly). So I started listening to some meditation 'tapes' (MP3 player) I was given during a breast cancer study that I was part of, before I went to sleep.

    Since I've done that, I do not wake up with pounding heart and that fear feeling in the middle of the night. Nor is cancer the first thing on my mind in the morning! Now I can go a night or two without listening to the tapes and I still remain my usual calm self all night and all day.

    I hope you find peace.
    ~~Connie~~

    i must seek help
    I dont know why I dont' fret or panic...I never do..I have been waiting now for 5 days..for out come of my gyno contacting a oncologist-gyno for 2nd opinion...he called yesterday and I Missed call ..now I must wait until Thurs..I WOULD LIKE to know now..but I MUSt wait..

    HE said I am unsual that I don't panic or worry..like other Drs etc..

    I DONT" KNOW why..evn with my mammos, blood etc..even when I was called back at the start of my BC for 2nd mammo I THOUGHT ahhh no biggie..

    WHAT IS WRONG WITH ME...???????????????????? SERIOUSLY..

    Denise...