Have to Stop Reading Message boards,in a trap

QueenK
QueenK Member Posts: 220

I feel like I am caught in a snare trap and can't get out.I am 1 month out of radiation and I think that searching the internet is doing me NO good again.

When I was 1st diagnosed I devoted days and days to breast cancer topics.Seeking out scenarios and the worst case always came up if I was looking for it or not.Now I find I am doing the same thing.I see a lot? of people that go from stage 0/stage 1 to mets and it scares me.It makes every twinge and every cough seem super important.

It also makes me second guess my doctors opinions.I was told to go on and live my life, go to follow ups and get a mammogram every year.My cancer was very early.When I questions this on some boards I get the whole "Well, you can never really be too sure" I am caught in a trap on who to trust and it makes me NUTS.

Are woman that go from stage 1 to mets the rule or the exception? Do I trust my doctors? What do I do and where do I go now?

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    I think they are the exception.  Remember that a messageboard is a small small portion of the many who are diagnosed with bc each year.  The reason it seems so skewed is that most women do exactly what your doctor told you to do.  They move on and live their lives.  There are a few who remain to stay in contact with friends they made during the journey or to help the new ones just starting.   So, it seems like there are alot of people on the boards who are progressing when they are in fact a small percentage of the total number diagnosed each year.  If you were diagnosed at an early stage then there is every reason to believe what your doctor told you.  I would trust your doctor. 

    Think of it this way, you have done everything you could to ensure a future without bc.  Staying here and agonizing over what may or may not happen is a waste of time.  It won't change anything and if your cancer does return, you will have wasted precious moments you could have spent making memories with your family.

    Live for each day as it comes and don't borrow trouble from the future.  Hang on to hope and joy.

  • Lisa1964
    Lisa1964 Member Posts: 944
    edited January 2009

    Jenny, all of that depends on your orginal dx.  DCIS or IDC, ER, PR, HER status, did you get a sentinal node biopsy, your age, family history, microcalcifications, etc.  The list goes on and on.

    But yes, you can read WAY too much into these boards.Smile

  • QueenK
    QueenK Member Posts: 220
    edited January 2009

    It was, as my oncologist said very lucky they even found it.It was very, very early.1.5 MM's of invasive cancer, no positive nodes, no lymph/vasc invasion.I did surgery and my margins where like 4 CM's! She only needed 2 but took extra.I also did radiation with boosts.

    Yeah, there is no reason to be worried, yet I still am and the more I read up on it, I wonder.How do I live my life after this? This is the question that keeps me awake at night.I was told there was a less than 1% chance it would be in the nodes (and it wasn't) and a less than 2% chance it would come back.

    But how do I trust this?

  • QueenK
    QueenK Member Posts: 220
    edited January 2009

    Another thing that I always almost NEVER mention is that the Drs had a tumour board and said I could take tamoxifin if I really, really wanted to BUT my oncologist felt very comfortable based on a lot of factors (as well as the board of 4 others) and he did not think I needed to take it.

    Now ALL I read is that a woman is crazy NOT to take it..I can never get a straight answer for any messages because people are so hung up on that part.

    Do I trust 4 doctors? and I have questioned it...trust me.

  • Marple
    Marple Member Posts: 19,143
    edited January 2009

    Jenny.  Trust your Drs.  There is good information on the boards but if it's scaring you silly.......take a break from them. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Jenny, its a step of faith to be sure.  This is a difficult time once treatment is finished and you don't see your doctors and/or their nurses at least several times a week.  Its as if they've pulled the safety net out from under you.  I used to say it was like being walked to the curb by all your support staff and watching them wave to you as you pulled away, saying 'good luck with that cancer thing.  Give us a call if anything new pops up.' 

    It takes a while to get your bearings back.  After months of doctors appointments, you now have all this free time.  You life before diagnosis was turned upside down and put on hold while you made room for the time needed for appointments, infusions, tests, etc. 

    Its time to start claiming your life again.  For me, it was making an effort to stop hiding in my house.  I had to make an effort each day to get out, back into the land of the living.  Even if it was just to run to the post office to buy stamps.  Start gradually doing the things you thought nothing of doing before bc.

    Its time to focus on staying healthy for the future.  My muscle tone was depleted after chemo and I couldn't even walk a half mile anymore.  I decided that I was going to now focus on regaining my strength do I could travel if I wanted without worrying about not having the stamina.  I have changed the way I eat even though I had a healthy diet before.  I've stopped eating so much processed foods, started being more concerned about reading labels.

    I focused on what I COULD control and learned to let go of what I couldn't control.  Its not easy but you will get there.

    By the way, I was diagnosed at stage 3B and I'm not five years out and life is good.  I don't agonize over recurrence so much anymore.  Its a process.  The first year or two, each little ache or pain will be a cause of fear that the cancer has returned.  My cancer may return and I want to be sure that the time I have now is used in a good way.  Not lived in fear.  After all, is a life lived in fear really any kind of life at all?

  • Marple
    Marple Member Posts: 19,143
    edited January 2009

    Always, how well said.  Words for us all to live by.

  • Analemma
    Analemma Member Posts: 1,622
    edited January 2009

    Jenny, please don't obsess.  You have a wonderful prognosis, and if your bc was found by mammogram, that means that your breasts are not so dense that bc doesn't show up.

    Knowing what I know, being metastic, if I had your scenario I wouldn't give another moment of time worrying about mets.  Aromatase inhibitors are pretty tough, not as bad as chemo, but I wouldn't take them if drs said they aren't necessary. 

    With your stats, you can probably do the best for your future by keeping yourself healthy, exercise, and eat fairly low fat.  There have been lost of studies showing the effectiveness of healthy living.

    Remember, whatever time you spend worrying about BC is time that BC has taken from you.  Step AWAY from the internet!

  • Marple
    Marple Member Posts: 19,143
    edited January 2009

    Jenny, these ladies are giving you good sound advice.  Hugs.

  • Snappygoddess
    Snappygoddess Member Posts: 91
    edited January 2009

     Jenny..we sound a lot alike! I question everything...want to know the big picture, etc, etc...and since I have been diagnosed I have learned to not look at the pic but rather take it one day at a time.. one step at a time...or you will go insane with worry and the "what ifs"!!

    Trust your doctors but remain open to asking questions if you don't understand something. I feel that I am very fortunate in the fact that I had no lymphnode involvement, and my margins were clean after my lumpectomy!! Technically I am cancer clean but am still taking chemo as an added insurance against any active cancer cells throughout my body!! So, I have focused on how fortunate I am and am trying to move through chemo first.. then radiation.. then getting back to myself again.... rather...on to a NEW and improved healthier ME!!

    I know it's scary...cancer is...but you dont have to live in fear every day...YOU have the control over what you want to do in life... spend it worrying all the time.. or enjoying each day to the fullest and getting everything good and positive out of life that you can!!

    Btw....my cancer was genetic.. so I am at a very high risk for it coming back...I do worry some.. but I am determined to NOT let it rule over my life when all I can do is finish my chemo and radiation and try to be as healthy as possible. "IT" has already robbed me of my hair and energy...I will be damned if it will take the rest of my life away from me!!!

    I wish you a peaceful and worry free life....and  I sense that you have the strength and courage to throw worry away and get out there and live life!!!

    HUGS

    ~Belinda~ 

  • AccidentalTourist
    AccidentalTourist Member Posts: 365
    edited January 2009

    On some level, we are all here because our understanding of how much we have control over our lives have been well and truly shaken.  It sounds like your cancer was discovered earlier than most and you have good chance of living a long, healthy life.  By all means improve your chances by making lifestyle changes and this site is a good source of information and advice.  Worry about recurrence is probably something we all have to learn how to live with but if they are excessive and are increasing perhaps you could have few sessions of counselling with someone who specialising in working with survivors of BC.  Look at it as your investment into your wellbeing so that long and healthy life of yours does not get spoiled needlessly.

  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited January 2009

    Jenny, I think it's normal to trawl the net when you are first diagnosed. I stopped all of that once I found this site and my May 08 chemo-sisters. Read the threads here only when something crops up and don't go looking for bad things..what we have is enough!! I have never found the info here seriously contradictory (to the point of confusion)..more like a balanced and comprehensive perspective. I wouldn't even go out and buy a cancer book now. Rather spend my money on treats! As the other girls have said, this is a process. We have been disempowered and shaken, and then we regroup/rebuild. I tell you what..I would rather have this illness than bad diabetes or heart disease, or lung disease. Even after all I've been through in the last 11 months, I still feel on top of this thing. And that is thanks, in no small part, to the girls on these boards.

  • Snappygoddess
    Snappygoddess Member Posts: 91
    edited January 2009
    Accidental ... I do agree with your statement of having our control of our lives shaken....I did not mean to trivialize Jennys or anyone elses fears or worries....guess I just thought I was helping. Sorry if I offended anyone here HUGS
  • AccidentalTourist
    AccidentalTourist Member Posts: 365
    edited January 2009

    Snappygoddess,  I hope I did not give you the impression that I was criticising your comments.  I was not and there is no need to apologise.  I have posted panicky notes on this site and have benefited from views offered by fellow sufferers and try to respond if I see that someone is struggling.  It is hard, however, to find the right words and I do worry I will offend someone inadvertedly.  With best wishes Nena

  • jezza
    jezza Member Posts: 698
    edited January 2009

    I have to agree with Always.....These boards are great but ppl tend to go away and only come back when they have a problem...so you get an unbalanced view.

    I was dx Stage 1, 17 years ago and had no recurrence so far. When I was dx...there were no forums or discussions on the net....so ppl dx back then don't usually search them out...

    I had to go to the library and look up old medical books to get info between Drs visits and YES I scared myself stupid!

    Jenny...you have an excellent prognosis and I wish you all the best. Sounds like you should take a break from BC forums..but come back in a few years to tell everyone how well you're doing...ok??

    hugs

    jezza

  • mzmiller99
    mzmiller99 Member Posts: 894
    edited January 2009

    Jenny - I think we all want a black or white answer., am I or am I not going to have to go through this again?  And, if I do, am I a dead woman walking?  

    I agree that too much info can be troubling.  This is the only site I check out, and not so much for my cancer issues, but to keep in touch with the gals who are on here. 

     We're all walking in the same sandals (or snow boots, up here) and these women aren't going to pat us on the head and tell us we have nothing to worry about (like so many do), but they will support us and understand us, and respond to our fears with warmth and wisdom.

    II hope you continue to check in here for support and comfort - or hook up with someone in your area who can make your life easier for you to live.

    (((Hugs)))!

  • Snappygoddess
    Snappygoddess Member Posts: 91
    edited January 2009

    Nena-- it's all good.. I am not easily offended...I just tend to go overboard with the humor and "I feel so forunate speil" that oft times I forget that not everyone wants to hear another cheery voice...LOL

    I like this site because I feel that I can be with me without someone scrutinizing my every move or word. My family and co-workers have been awesome but they tend to watch you too much...like they are afraid you are going to fall apart at any given moment.. and I may.. but I want to be able to do it without worrying about whoever is around me being unsure what to do. Here.. we have all been through, going through are getting ready to go through very similiar situations and we KNOW and understand what it's like.

    Thanks for the prayers, support and laughs when I need it...you all are the bestest!!Wink

    I get my 3rd round of AC Tuesday.. so far my SE have been very mild.. but I can tell the fatigue is becoming cumalitive..taking longer to bounce back.. but I  am doing what I can to keep it from overwhelming me.

    Best wishes to any and all getting treatments this week.. hope the week goes better.

    Take care all

    ~Belinda~ 

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