Lotta Doomsday talk here

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Sungrl
Sungrl Member Posts: 5
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Must confess- been reading a lot of forums about breast cancer. They are all Unique. One thing i've noticed about this one is there is a lot of doomsday talk at this website.



I hear a lot of talk about recurrence and how even many women with no nodes and stage i recurr. Many, many. You just never know.



It seems this is a very common thread on these forums on this website, but i would question this thinking.



Any basis to back this up? 98 percent stage 1 alive in 5 yrs.



No guarantee, no guarantee. But so many women doing well. Either there is some conspiracy or the talk about recurrence with no nodes is a little overblown. No?



Not meant to be controversial. Just thought a topic of conversation. I am scared about recurrence too, but over 90 percent odds is pretty good and maybe all the talk about no guarantee, forever fear of recurrence not good!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    People are just expressing their fears and concerns. They feel safe doing so here. I believe that most lower stage posters know, logically, that the odds are in their favor but this is a good place to come to safely vent ones fears.

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  • mdg
    mdg Member Posts: 3,571
    edited March 2013

    The other thing you want to realize that the people that do have recurrence hang out here.  THe people that are several years out are usually out living their life and not hanging out on the boards. 

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  • Sungrl
    Sungrl Member Posts: 5
    edited March 2013

    Its true. Its just you start to wonder what reality is. I keep reading. No nodes, no guarantee. Many with no nodes recurr so its starts to make it seem like there is some insider knowledge that maybe prognosis isnt as good as i assumed. Makes me worry.

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    "... make yourself walk away..."

    Yes, most definitely.  In the beginning - when I was newly-diagnosed - I obsessively trawled the boards for anyone with a similar prognosis to mine to see if they recurred.  And, of course, when I found them, I would be panic-stricken for DAYS.  It took a long time to be able to put it all in perspective and work it through emotionally, and when I was a bit stronger in that area, I came back.  Now, nearly two years out, I realize - intellectually - that I will, always, have the potential for a recurrence, but it's not as hard now to accept that.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited March 2013

    Sungrl - After my BMX w/ recon, my risk of recurrence was 1% to 2%. I am on an AI to further reduce that risk by 50%. I am certainly one of the ones with a VERY good prognosis.

    Yet the reality of cancer is that once you have it, it CAN recur.

    We do the best we can with trying to eliminate that possibility, but it happens. Not frequently, but it does.

    Doomsday? I read these threads - all of them, including Stage IV - and see hope and inspiration.

    Like exbrnsgrl, mdg, kayb, and SelenaWolf have mentioned, this is a safe place for sisters to come and vent and express their fears... and those who have dealt with BC with no complications or recurrence are probably out there just living their lives.

    One day I told my MO that it had been a hard week... several Stage IV women had passed away. She asked me why I even read those threads if they made me sad or anxious.

    I had to explain that while I was sad, I was not anxious.

    I told her that 1)Possible recurrence is a reality; 2) The stories I read are incredibly meaningful to me, even though cancer truly does suck; and 3) To read someone's personal story is to give honor to that person and acknowledge what they are going through.

    I get angry that we are still losing precious women to this disease, but I am ever hopeful that we will not only find a cure, but prevention.

    There's an old quote: When we change the way we look at things, the things we look at change.

    I finally stopped looking for signs that I would not get better, and focused on all the things that were taking place that said I was getting well.

    Wishing you the best....

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  • Sungrl
    Sungrl Member Posts: 5
    edited March 2013

    i totally understand that this is a place to vent and probably more talk about recurrences here. i know and it is so wonderful that this place is here. i guess i may just have to step away sometimes (though it is hard. its so helpful. i learn so much from everyone here. everyone here seems to know so much more than i do!). but its hard to really get a handle on what risk is and i tend to see more stories about recurrences than i do about women who are surviving this disease for a long time. i try to do google searches about long living survivors and i dont get that many hits. then i come here and i guess  what is most worrisome is all the posts that say "negative lymph nodes don't mean anything. it can still find other ways to spread." and it makes me feel sometimes that might life could be over in a year or i could have stage iv in a year and that is so overwhleming.

    i guess i have just found this a very lonely journey. not that i dont have my friends and family to share fears with because they have been great, but i mostly mean that doctors dont seem to want to acknowledge anything, like what true prognosis is and what not. sometimes it feels like they are trying to pull the wool over my eyes in terms of prognosis. my cancer is the size of a pencil eraser and there are 0 lymph nodes of the 5 they pulled. it is so unbelievable to think that something that little can kill me. it makes me resent the field of medicine. why on earth if it hasnt spread to lymph and not grown that large cant they give a guarantee of a cure? and none of them are too positive becuase they dont want to be sued if somethign does happen. i guess it just feels overwhelming because sometimes it feels like i already have stage iv. becuase it could come back anytime right so nothing to really celebrate. no point in pushing forward with the future when for the next 20 years tomorrow could be the day it has spread everywhere.  

    i hear what you are all saying. that is wonderful advice. i just dont know if ill ever feel okay again. and my poor family. the fact that no one can guarantee me the cancer wont spread when it is so tiny makes me feel like none of the doctors know what they are talking about. what has been accomplished all these years. what has changed from long ago? 

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2013

    What has changed from long ago is they now realise thqt breast cancer has loads of variations - research shows it may be at least 15 different diseases which combined with our own individual gene blue prints means it is a lot more individual than any of us realised - this is both positive and negative of course....but a LOT has changed in the last 10 years

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  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2013

    Sungrl...this forum is a great place because everyone is here for the same reason in varying stages and treatments. Of course you are going to read posts that are sad and depressing and some even fatalistic but those are feelings they feel comfortable with expressing here. You know how it is when you talk about what ails you with this disease and some people look at you like you are spouting a foreign language or they have this I dont want to hear about this look. Not saying that they dont care because the vast majority of them do but they cant possibly understand the fear factor and the fact that we will be looking over our shoulders for the rest of our lives. We didnt ask for this of course but we have to hold onto whatever positive predictions are out there for our particular situation. I have early stage bc and I know like everyone else there are no guarantees but I also know that bc has come a long way in treatments and survival rates. I think what is reality though is the fear of recurrence - how could it not be and maybe some women post about those fears because they are real. It isnt the same as having your appendix removed because we had something removed but an appendix is coming back. Not trying to be flippant just relating to those fears but am also optimistic about my changes. So if reading these posts is "getting to you" maybe you do need a break from them. No one will blame you. We all at some point have done that. Diane

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited March 2013

    Sungrl - if you need good news, check out the 5 year survivor thread:  http://community.breastcancer.org/forum/135/topic/786103?page=10#idx_292

    Other "happy" threads can be found in the exercise section including the 2013 Running Thread whose regulars span everything from experienced marathoners to those who have never exercised and are just starting a Couch to 5K program.  Another happy thread is the Let's Post our Daily Exercise thread - regulars include newly dx women, women in active treatment, and women who are several years out.  Some are fit, some are not, but everyone is trying do a bit more exercise.  

    Try those threads if you need another perspective.  And don't hesitate to take a break from the internet for a while - we've all done it at one point or another to save our sanity. 

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  • MNSusan
    MNSusan Member Posts: 305
    edited March 2013

    I completely understand what you're saying. I come here to get inspiration. My body has figured out how to turn perfectly healthy cells into breast cancer and I come here to learn how to live with that reality.



    I had a teeny tiny DCIS (3mm) and seven years later I either had a recurrence or a second and third primary (my surgeon thinks they're not recurrences). I was here at the beginning and went away for years because I had moved on from my diagnosis. I'm back now to connect with others, hear about their treatment (lots of differences among docs), educate myself so I'm better prepared at my doctors' appointments, and so much more.



    The odds are in your favor. They were in mine, too and I'm so grateful to have this place to come to when the rest of my world just doesn't get it. So yeah, the statistics might be skewed but I'm glad there are others like me clustered here.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    Sungrl,

    The truth is that most dx'ed at early stage do very well. This forum is a very skewed population and in no way should be used to judge recurrence or metastasis rates. Yes, recurrence and mets do happen but not with the frequency you see on this forums population.

    Caryn

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