What are the top five fears concerning breast cancer?

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coug90
coug90 Member Posts: 59
edited March 2014 in Breast Cancer #1
I've been wondering lately what other survivors think about and if I'm 'normal' like you! LOL I was thinking we could come up with a top five list of fears for breast cancer surivovrs. I think my biggest fear is that I chose not to aggressively treat my cancer and that it will come back.

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  • chenheart
    chenheart Member Posts: 5,159
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    Top 5? I am not sure what my 5 biggest fears would be~ or even what order they should be in! I think about recurrance ( or, the dreaded mets)more often than I would like~even a few years into my survivorship. I used to be afraid of dying. But right now, the thought of a re-dx, treatment plans, decision making, hair loss, and ok, I will now admit I have the fear that maybe my b/f won't stick around to go through this AGAIN....So, those are 2 or 3 fears! Am I normal????
  • babs49242
    babs49242 Member Posts: 193
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    (1)for me is that I passed it on to my children and grandchildren
    (2) that the beast will show up in the other breast
    (3) the side effects of treatments will not lessen
    here are a couple to add...sure there are others but the brain jest don't want to co operate and release the thoughts....sheesh...lol
    Hugs & prayers to all

    cindie
  • newboobs
    newboobs Member Posts: 121
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    I am a 5.5 year survivor and my biggest fear and disappointment is letting stress affect my sleep, my weight, etc. After cancer, I truly appreciate every single day, but I find myself still working 50+ hours a week. I have done a better job of letting the daily drama of life and work go -- but I'm struggling trying to find my "quiet place" inside, and to think and talk more positively about myself and the world. I also need to eat better and exercise more. I guess all those things total up to my concern of a recurrence or a whole new cancer. But we truly can't live in fear -- it's just difficult some days.

    We are now trying to have a baby and I worry about birth defects-- at my age of 44 - and from chemo, and even if I can carry a child full term.

    But at the end of the day, I just give my worries and fears to God and try to start new each day.
  • Kitty3571
    Kitty3571 Member Posts: 48
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    Not sure what the "top" five should be - I guess it's different for everyone and what they personally experienced through it all - For me - At this point a year and half after initial surgery (one more treatment to go) I guess I really worry that if it does come back will it be caught in time - I was lucky before and it was caught early but I'm Her2 so chances of reoccurence are high, I look at it like this - If it does come back, no problem - I'll just attack it with whatever means necessary like before (even though it was hell to go through) But I was also lucky enough the first time around to have "pain" associated with it so we were able to treat it early before it spread everywhere - So my biggest fear is to catch it in time for reasonable treatment. Thanks, Kitty
  • babs49242
    babs49242 Member Posts: 193
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    newboobs said:

    I am a 5.5 year survivor and my biggest fear and disappointment is letting stress affect my sleep, my weight, etc. After cancer, I truly appreciate every single day, but I find myself still working 50+ hours a week. I have done a better job of letting the daily drama of life and work go -- but I'm struggling trying to find my "quiet place" inside, and to think and talk more positively about myself and the world. I also need to eat better and exercise more. I guess all those things total up to my concern of a recurrence or a whole new cancer. But we truly can't live in fear -- it's just difficult some days.

    We are now trying to have a baby and I worry about birth defects-- at my age of 44 - and from chemo, and even if I can carry a child full term.

    But at the end of the day, I just give my worries and fears to God and try to start new each day.

    newboobs~ have you tried to listening to soothing CDs? when I have problems w/ stress,I listen to guided imagery CDs. There are many to chose from.
    If you'd like to know the website or mor information on it email me here.
    May you be blessed w/ a gift From God.
    Bunches of hugsssssss
    Cindie
  • newboobs
    newboobs Member Posts: 121
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    Kitty3571 said:

    Not sure what the "top" five should be - I guess it's different for everyone and what they personally experienced through it all - For me - At this point a year and half after initial surgery (one more treatment to go) I guess I really worry that if it does come back will it be caught in time - I was lucky before and it was caught early but I'm Her2 so chances of reoccurence are high, I look at it like this - If it does come back, no problem - I'll just attack it with whatever means necessary like before (even though it was hell to go through) But I was also lucky enough the first time around to have "pain" associated with it so we were able to treat it early before it spread everywhere - So my biggest fear is to catch it in time for reasonable treatment. Thanks, Kitty

    Kitty- I was HER2 positive too. The recurrence thing does pop up- when I find a bruise, a small knot....y'all know the drill LOL.

    I just want to live my life smarter and enjoy every day. It's frustrating sometimes to see those around me not living this way. But, heck I didn't get "IT" either until I had cancer. Not wishing that on anyone, but we all belong to a club that knows what life is about now. Thanks for the prayers --- Prayers for you all!!
  • Susan956
    Susan956 Member Posts: 510
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    Fears:
    1) recurrence.....
    2) loosing my hair again...
    3) wondering if I could deal with it again... I know that I could but boy.... one T shirt should be enough.

    Take Care... God Bless All.

    Susan
  • cabbott
    cabbott Member Posts: 1,039 Member
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    Here's my list for what it is worth:

    1. death
    2. reoocurance
    3. pain and suffering
    4. disability
    5. leaving my son if I die.

    I try to leave all the worries and fears for God to deal with. I'm not strong enough on my own. I started sleeping better when I did that.
  • Coug, as you know from talking with me in chat, I am a 21 year survivor (this month!).
    What I wanted to say is that the fears change over time.
    I was 38 with 2 young kids (1 and 12) when first diagnosed.
    My #1 fear was....am I gonna DIE???
    Now that fear has dropped almost off the bottom of the list....cause my kids are grown now.....and of course I am gonna die...sometime.
    My #2 fear was the side effects of treatments...which are over and done with...God willing.
    My #3 fear was hair loss....it happened (twice)...I dealt with it....and I will again if I have to...no longer any fear about that.
    My #4 fear was the permanent 'oh, my Lord, can anyone tell I am wearing falsies'???? I outgrew that one too.
    My #5 fear was that my marriage would not survive the turmoil....it didn't....but I did. And have a very good life now in spite of it, thank you very much :-)
    So, you see, even those fears which materialized turned out to be very much more 'doable' than I thought they would.
    The only thing we have to fear is fear itself. (I can't take credit for that one...LOL).
  • unknown said:

    Coug, as you know from talking with me in chat, I am a 21 year survivor (this month!).
    What I wanted to say is that the fears change over time.
    I was 38 with 2 young kids (1 and 12) when first diagnosed.
    My #1 fear was....am I gonna DIE???
    Now that fear has dropped almost off the bottom of the list....cause my kids are grown now.....and of course I am gonna die...sometime.
    My #2 fear was the side effects of treatments...which are over and done with...God willing.
    My #3 fear was hair loss....it happened (twice)...I dealt with it....and I will again if I have to...no longer any fear about that.
    My #4 fear was the permanent 'oh, my Lord, can anyone tell I am wearing falsies'???? I outgrew that one too.
    My #5 fear was that my marriage would not survive the turmoil....it didn't....but I did. And have a very good life now in spite of it, thank you very much :-)
    So, you see, even those fears which materialized turned out to be very much more 'doable' than I thought they would.
    The only thing we have to fear is fear itself. (I can't take credit for that one...LOL).

    Hi,
    Fear does diminish with both time and life stages. I am a five year survivor. Fear has receded into the background until I get a new ache or bump. My hair is getting thinner now as I age and I wouldn't mind an excuse to put a wig back on - or just go bald and wear a scarf. My children are grown so I no longer worry for them. My husband and I have recently retired and I do worry for him if anything happens to me. My biggest fear would have to be pain and suffering. Death will come in its own time and God will take care of that.
    As I think about it, fears are very much related to life stages. My young survivor friend has very different fears related to physical attractiveness, care of her son, and whether or not her husband would support her through a reocurrance.
    Lots of hugs. - Mimi
  • ireneingeorgia
    ireneingeorgia Member Posts: 73
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    Hey Coug and everyone,
    I guess my list of fears begins with reoccurence because I'm not sure if I'd want to go through everything again. I'm sure part of that is dealing with all my extra surgeries from a bad doctor.

    2) Losing my hair was a horror for me

    3rd would be not being able to see my grandbabies grow up, I don't have any yet.

    The stress it puts on your loved ones and what they go through

    Dying...I'm not ready....I haven't done half the things I want to do yet.

    So I am almost 1 1/2 years out and planning on being around to celebrate many more with y'all!.

    Love
    Irene
  • coug90
    coug90 Member Posts: 59
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    Thanks so much for posting your fears/concerns. It's interesting, although I suppose not surprising, that we all have similar fears. I think being a 'young' survivor of bc, I do have fears of losing my attractiveness to my husband and the opposite sex in general. Not that an older survivor doesn't face that, but it seems the older you get the more pragmatic you are about aging? Maybe I'm assuming too much, I don't know. I didn't do chemo... and I have to admit one of the strongest motivators for my research and persistance in finding a doc to tell me I didn't need to was because I didn't want to lose my hair. That is so incredibly vain, I know. Honestly, if it had been clear cut, I would have 'stuck out my arm' and done it; and dealt with the psychological trauma as all of you have done.

    I do worry about leaving my son; I worry about the effect of having cancer has had on him. Everytime I'm sick he asks if I'm seeing 'the doctors in Yakima'. It's unfortunate that he's had to deal with this stupid disease at such a young age.

    The other thing I completely hate is being defined by cancer. I know everyone says don't let it define you; and really I don't. But you can't stop people from looking at you with buggy eyes asking you if you're 'ALL RIGHT NOW?'. In a small town, you can't stop complete strangers coming up to you and staring at your chest all the while trying to avoid the white elephant in the room. I can't stop my Mom's first question out of her mouth - inevitably, have you gone to the doctor... well, everythings ok right? It's sad and frustrating how cancer has shifted my world. It's a little like getting married and all of a sudden being referred to as 'his wife' or 'his mom' or 'mrs. so and so'... like they've completely forgotten that you have a name and a separate identity.

    But the great news is we are all survivors. I guess if we have to worry about these things, it means we are living! And that's always a good thing! I welcome any other postings to this message. I'd love to hear some other views. Hugs to you all! xoxox
  • seof
    seof Member Posts: 819 Member
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    I don't know if I fit the "real" definition of survivor, since I have only been diagnosed for just less than 2 months and have not yet begun chemo, but I am not dead yet, so I consider myself to be a survivor. First, thanks to all of you who have gone before in sharing your fears, I seem to be in good company. I am 43 and have 2 daughters, and a wonderful husband. We watched my Sister fight cancer for 5 years and go to Jesus at the age of 45, leaving 4 kids and a Dad, so we are scared of that possibility. I do not want to leave them, and I have a lot that I have not accomplished yet. My Sister had a great attitude toward hair loss...she just boasted that she was "Mrs. Clean". The difference is she had the physical fitness to pull it off, I think I may have to go for the Pilsbury Dough boy. Anyway, I am mostly afraid of leaving my family alone. second, of not being able to keep working at a job I love (and the financial burden of losing a paycheck). I am also afraid of recurrence. Ultimately, I know I am in the hands of God, and He is in control.
  • newboobs
    newboobs Member Posts: 121
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    coug90 said:

    Thanks so much for posting your fears/concerns. It's interesting, although I suppose not surprising, that we all have similar fears. I think being a 'young' survivor of bc, I do have fears of losing my attractiveness to my husband and the opposite sex in general. Not that an older survivor doesn't face that, but it seems the older you get the more pragmatic you are about aging? Maybe I'm assuming too much, I don't know. I didn't do chemo... and I have to admit one of the strongest motivators for my research and persistance in finding a doc to tell me I didn't need to was because I didn't want to lose my hair. That is so incredibly vain, I know. Honestly, if it had been clear cut, I would have 'stuck out my arm' and done it; and dealt with the psychological trauma as all of you have done.

    I do worry about leaving my son; I worry about the effect of having cancer has had on him. Everytime I'm sick he asks if I'm seeing 'the doctors in Yakima'. It's unfortunate that he's had to deal with this stupid disease at such a young age.

    The other thing I completely hate is being defined by cancer. I know everyone says don't let it define you; and really I don't. But you can't stop people from looking at you with buggy eyes asking you if you're 'ALL RIGHT NOW?'. In a small town, you can't stop complete strangers coming up to you and staring at your chest all the while trying to avoid the white elephant in the room. I can't stop my Mom's first question out of her mouth - inevitably, have you gone to the doctor... well, everythings ok right? It's sad and frustrating how cancer has shifted my world. It's a little like getting married and all of a sudden being referred to as 'his wife' or 'his mom' or 'mrs. so and so'... like they've completely forgotten that you have a name and a separate identity.

    But the great news is we are all survivors. I guess if we have to worry about these things, it means we are living! And that's always a good thing! I welcome any other postings to this message. I'd love to hear some other views. Hugs to you all! xoxox

    I think worrying about losing your hair is not vain....it just becomes one more thing in the cancer fight that you have no control over. Losing my hair was much worse than losing a breast. I know it sounds weird, but it's true for me. I wouldn't allow any photos to be taken. Then a year later one of my pals saw my BALD picture in an ACS brochure---they took it at our Relay, and YES I was bald LOL. So my bald head got national publicity. My hair grew back a beautiful salt & pepper grey-- complete strangers comment on it all the time. So God does have a sense of humor LOL.

    When I was going through treatment, I worried about my husband and my mom, finances....you can't help but worry about the future. I remember postponing the purchase of concert tickets for the next fall because of the fear. Now I just go to every show I can and enjoy life! God Bless ladies!!
  • cabbott
    cabbott Member Posts: 1,039 Member
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    seof said:

    I don't know if I fit the "real" definition of survivor, since I have only been diagnosed for just less than 2 months and have not yet begun chemo, but I am not dead yet, so I consider myself to be a survivor. First, thanks to all of you who have gone before in sharing your fears, I seem to be in good company. I am 43 and have 2 daughters, and a wonderful husband. We watched my Sister fight cancer for 5 years and go to Jesus at the age of 45, leaving 4 kids and a Dad, so we are scared of that possibility. I do not want to leave them, and I have a lot that I have not accomplished yet. My Sister had a great attitude toward hair loss...she just boasted that she was "Mrs. Clean". The difference is she had the physical fitness to pull it off, I think I may have to go for the Pilsbury Dough boy. Anyway, I am mostly afraid of leaving my family alone. second, of not being able to keep working at a job I love (and the financial burden of losing a paycheck). I am also afraid of recurrence. Ultimately, I know I am in the hands of God, and He is in control.

    When I joined up with a team to walk my first Relay for Life, they asked what size shirt I wanted as a survivor. Well, I didn't want to cheat them, so I told them I was still in treatment and wasn't sure if I was a survivor. They asked me if I was diagnosed with cancer. Of course the answer was yes. Then they asked if I was still alive. I told them yes. They said then that I was a survivor, whether I felt like one or not. Personally, I felt more like a warrior in battle than a survivor of a war, but a web site I ran into stated that a breast cancer warrior is someone who has died of the disease. So much for terminology! In any case rest assured, you are a survivor!
  • coug90
    coug90 Member Posts: 59
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    seof said:

    I don't know if I fit the "real" definition of survivor, since I have only been diagnosed for just less than 2 months and have not yet begun chemo, but I am not dead yet, so I consider myself to be a survivor. First, thanks to all of you who have gone before in sharing your fears, I seem to be in good company. I am 43 and have 2 daughters, and a wonderful husband. We watched my Sister fight cancer for 5 years and go to Jesus at the age of 45, leaving 4 kids and a Dad, so we are scared of that possibility. I do not want to leave them, and I have a lot that I have not accomplished yet. My Sister had a great attitude toward hair loss...she just boasted that she was "Mrs. Clean". The difference is she had the physical fitness to pull it off, I think I may have to go for the Pilsbury Dough boy. Anyway, I am mostly afraid of leaving my family alone. second, of not being able to keep working at a job I love (and the financial burden of losing a paycheck). I am also afraid of recurrence. Ultimately, I know I am in the hands of God, and He is in control.

    Seof, so sorry to hear you have to join our 'club'. Unfortunately it's not as exclusive as we would like. I wish you all the luck and good fortune on your trip down this nasty old path. Remember we are always here to support you; listen to your fears and laugh or cry with you. The chat room is an excellent real time tool. And, by the way, YOU ARE A SURVIVOR STARTING DAY ONE. Hugs
  • Kitty3571
    Kitty3571 Member Posts: 48
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    coug90 said:

    Seof, so sorry to hear you have to join our 'club'. Unfortunately it's not as exclusive as we would like. I wish you all the luck and good fortune on your trip down this nasty old path. Remember we are always here to support you; listen to your fears and laugh or cry with you. The chat room is an excellent real time tool. And, by the way, YOU ARE A SURVIVOR STARTING DAY ONE. Hugs

    Well I'm back, just wanted to check in on this particular subject again because I think it is a very good subject to discuss, not that they all aren't great subjects....Anyway, just wanted to add a few more comments. Feeling kind of crapy today - I was reading about the hair thing and I agree that it was difficult loosing my hair - That really told everyone that you have the big "C" - Not that I ever cared who really knew that I was fighting cancer - It's just that you don't look like yourself at all anymore (at least that was how I felt) and the 20 lbs I've gained since treatment doesn't help either with the self esteem - sometimes I just think "why me" - I know that is pathetic and I should just be happy to be alive, who cares if I'm fat, right? My husband says it doesn't bother him but it bothers me and our intamacy hasn't been the same since my diagnosis. I also sometimes complain that my hair is in it's weird stage of growing back (I hate it) and other people tell me "well at least you have hair now" I guess I should be grateful but somedays I just don't think that way - Is this normal??? I'm also scheduled to get my chest port removed on Aug 2nd and my fear is, what if I get dianosed again soon after I have that removed - Isn't that ridiculous to think that way? I guess I just don't know what to do with myself now that my treatments are over - This has consumed the last year and a half of my life and now it just feels weird like I have to adjust to a new life of no treatments, no doctors, etc...Don't get me wrong, I trully welcome that but I don't want it to seem like "this" never happened to me - I try and live life better, to have a different outlook on everything and appreciate everything more but it seems that I'm just so caught up in our everyday stuff like working, etc...and it just seems that I need to take some personal time and reflect on what I've been through and to NOT FORGET - Does that make any sense?
    Thanks again for listening! Kitty
  • chenheart
    chenheart Member Posts: 5,159
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    Kitty3571 said:

    Well I'm back, just wanted to check in on this particular subject again because I think it is a very good subject to discuss, not that they all aren't great subjects....Anyway, just wanted to add a few more comments. Feeling kind of crapy today - I was reading about the hair thing and I agree that it was difficult loosing my hair - That really told everyone that you have the big "C" - Not that I ever cared who really knew that I was fighting cancer - It's just that you don't look like yourself at all anymore (at least that was how I felt) and the 20 lbs I've gained since treatment doesn't help either with the self esteem - sometimes I just think "why me" - I know that is pathetic and I should just be happy to be alive, who cares if I'm fat, right? My husband says it doesn't bother him but it bothers me and our intamacy hasn't been the same since my diagnosis. I also sometimes complain that my hair is in it's weird stage of growing back (I hate it) and other people tell me "well at least you have hair now" I guess I should be grateful but somedays I just don't think that way - Is this normal??? I'm also scheduled to get my chest port removed on Aug 2nd and my fear is, what if I get dianosed again soon after I have that removed - Isn't that ridiculous to think that way? I guess I just don't know what to do with myself now that my treatments are over - This has consumed the last year and a half of my life and now it just feels weird like I have to adjust to a new life of no treatments, no doctors, etc...Don't get me wrong, I trully welcome that but I don't want it to seem like "this" never happened to me - I try and live life better, to have a different outlook on everything and appreciate everything more but it seems that I'm just so caught up in our everyday stuff like working, etc...and it just seems that I need to take some personal time and reflect on what I've been through and to NOT FORGET - Does that make any sense?
    Thanks again for listening! Kitty

    Amen to all you said, kitty! My doctor wouldn't remove my port for a YEAR post chemo~talk about thinking that he knew I was going to have a recurrance. Well, it has now been 4.5 years, and so far so good! Just like the baldness was a visible ( or is that non visible?) reminder of the Cancer, so was looking at the port. Drawing a happy face on it with washable ink only helped momentarily...
    I figure that should I ever have to face the Cancer Demon again, I will just get a new port then.
    A wise friend once said that not getting the port out was like never applying for a job.If we never apply for a job, we can never be fired, can we? But how ridiculous a plan is that? How about if we never go out to dinner? That way we won't get food poisoning! You get the idea, I am sure.

    Cancer has indeed touched us in ways we neither expected nor wanted. That having been said, Carpe Diem! I am trying my best to live knowing cancer WAS, not IS a part of my life. I am not always successful, but I try anyway!

    I also agree with the intimacy issues you raised. And, one of the tenderest, sweetest testaments to my worth as a woman and partner was realized when my partner touched, and then softly kissed my scar. It was truly a defining moment. I hope I have not crossed a line here; it was certainly not my intention...