Fear of reoccurance?

4bethann
4bethann Member Posts: 34
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I've been reading the Tamoxifen studies in respect to ILC and am worried.

 But noticed what is worse is that sometimes I will find my wrist of leg hurts and worry about cancer spreading to the bones. Does anyone else deal with this and if so what helps you?

Thanks!

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  • hollyann
    hollyann Member Posts: 2,992
    edited November 2008

    4bethann.......I deal with that on a daily basis...I just keep telling myself I'm ok...all the tests were fine.....yada yada yada.......We call this canceritis cause we think every little pain is caner coming back.....The protocol is to wait two weeks and if it gets worse call your onc...if not then it's nothing to worry about......if you really feel like you need to call your onc, do so......Peace of mind is a wonderful thing........And hopefully your onc is lke mine and is always on hand to answer any questions or worry I have...Good luck!.......

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  • saint
    saint Member Posts: 1,877
    edited November 2008

    Hugs 4bethann! The "2 week rule" Hollyann mentioned is a good one to live by! As for pain in your wrist (don't know where in the leg), USUALLY mets tends NOT to go past elbows or knees--hope that helps put your mind to rest...

    Here is what I heard to try to stop that canceritis------IF we allow our life to be ruined worrying about recurrence, then we may as well HAVE it!!!

    When I was dx'd with mets my dh & I cried for days--then I said--well, what if I am NOT going to die soon? If I keep crying, when the time comes I will have wasted all of it! There will be time for fears & tears WHEN the time  is right---I will not waste today worrying about what may or may not happen tomorrow!

    That was over 4 years ago...glad I'm not still crying! Hope this helped a little!

    HUGS-be well & stay strong 

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  • Gitane
    Gitane Member Posts: 1,885
    edited November 2008

    Oh, saint.  I so much loved what you wrote here.  We are all so afraid at times.  Our minds search for the worst case scenario.  At least mine sure does.  I have to catch myself.  This is a post that should be bumped to the top of our boards!

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  • 4bethann
    4bethann Member Posts: 34
    edited December 2008

    Thank you all so much for the wonderful advice and encouragement. Good to know I am "normal"!

    The two week rule is a great help.

    Saint, were you on Tamoxifen or A.I. when you  were dx'd with mets? I am asking because I had read that Tamoxifen did not work well with ILC and that is what i am on- wondering about switching to A.I. May I ask what happened to you? How are you doing now? You seem to have a wonderful attitude....

    It just makes no sense to me that we have node negative cancers spread. But then, cancer in general makes no sense to me.

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  • saint
    saint Member Posts: 1,877
    edited December 2008

    Ahhh bethann--big hugs!

    The first problem is that the cancer never read the "rules"!!!!!! There are no guarantees with most things in life; cancer just tends to be one of the most unpredictable!

    I was on Tamox---You can read my personal bio & ask anything specific--I share most anything (I hear "TMI" fairly often! LOL) Right now I feel better than I have in over a year. I'm in the eye of the storm--I started Xeloda in Sept & doing pretty well. I will have scans to check how this new tx is doing in about 3 weeks. I pray it works well & for a good long time!

    Gitane---ty for your kind words! I have enjoyed many of your posts on this site as well!

    Keep this thread going!!! Be well & stay strong! 

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  • MaureenA
    MaureenA Member Posts: 39
    edited December 2008

    Bethann,

    I could have written your post!  I too worry about recurrences. I felt absolutely nothing in my breast which I had ILC, but now I regularly feel shooting pains and heaviness and think it's cancer.

    I was at first relieved that my oncotype score was 16 (10% chance of recurrence), but now 10% seems like a lot.  I had a lumpectomy with radiation, but am strongly considering doing a bilt. mast. in the spring/summer (the plastic suregeon advised waiting at least a year after radiation) to reduce the risk of any further ILC.

    My lovely radiation oncologist made a statement that I found encouraging and try to remember; perhaps it will resonate with you as well...something like in 10 years breast cancer will have been one of many stages in your life...you'll say something like, remember that year I had breast cancer that was really tough and remember the year the twins were born, it went by in a haze.

     A friend also wisely counsels...worry will not change the outcome, but it will diminish the present.  I do try to remember that, but it's difficult.

    Take good care.

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  • saint
    saint Member Posts: 1,877
    edited December 2008

    HUGS Maureen! Truer words were never spoken! Worry NEVER makes anything better, but can certainly make them much worse!!

    LIVE LOVE LAUGH!

    Be well & stay strong 

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited December 2008

    Hi all:

    We cancer patients are treated based on statistics and percentages, e.g. if tumour is over a certain size the onc says "well, I recommend chemo which will reduce your chance of recurrence within 5 years by 15%, and if we add an AI, we can reduce it to 10%."  I fear most of us think a 10% chance is still too high, forgetting about the 90% chance it won't recur.

    But have you ever purchased a lottery ticket where the chances of winning at least one of the prizes is 1 in 20?   We probably think "hey, those chances are pretty good!", conveniently forgetting that it also means we have a 95% chance of winning zilch!!  And, after the draw is held, we say we never really expected to win anything anyhow!

    I guess what I'm trying to say is, I totally agree with Maureen when she says "Worry NEVER makes anything better", and if we live our lives based on percentages of something happening or not happening, we're just not living our lives as well, or as happily, as we can.

    However, easier said than done!!

    All the best, Linda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2008

    Bethann--my mom had ILC--lumpectomy, radiation and tamoxifen---and is now a survivor of 22 years without a recurrence.  I just finished my 5 years of tamox for LCIS and am doing well. I also try to remember that "worry won't change tomorrow, but it will rob the joy of today"

    Anne

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  • saint
    saint Member Posts: 1,877
    edited December 2008

    AMEN awb!

    I always say--it it happens to me then it's 100% for ME!!! To hell with what the stats were!!!

    HUGS all-be well & stay strong! 

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  • ibeejojo
    ibeejojo Member Posts: 45
    edited December 2008

    Hi All.....I am 3 yrs since my ILC dx.  Had onco score of 15, did not do chemo.  I was about 1.5 yrs on Tamoxifen and quite frankly that they are just finding out now that it has little effect on ILC.  It's only been around for 30 yrs!  I have been going thru the Al's and am currently on Aromosin (just call me sleepless in San Diego).

    I just wanted to mention your leg pain.  While on Tamoxifen it's a good idea to report any new and unusual leg pain which appears to be in a specific location.  If you notice any redness or a weakness in the leg take care of it immediately because Tam does cause blood clots occassionally.  A quick medical evaluation can determine if there is a problem before it gets worse.  If you are postmenapausal than by all means try an AL.  If you find you can't tolerate one move to another but you must be postmenapausal for them to work.  You don't say if you had chemo which could explain the wrist pain.  There are tons of women who take these drugs with little to no side effects and then there is ME!  I'm just trying like hell to get 5 yrs of hormonal treatment behind me so I can say "I'm done".  I chose to be more aggressive with the surgery and had a BL.  I have also been aggressive in dietary and life changes...very aggressive.  I do meditation, acupuncture and energy healing which I am in training as a practitioner.  The combination seems to work for me.  It gets better.  When I have new pains I find myself saying "damn meds" instead of "damn cancer" and so far I've been right.....hugs.Jo 

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  • sharneu1
    sharneu1 Member Posts: 21
    edited December 2008

    Hi Jo,

    Did you stop taking Tamox. because it was reported that it had little effect on  ILC, or because you were officially menopausal?  I haven't had a chance to talk to my onc about this new info (tamox. not working on ILC) I will mention it at my next appt (Dec. 29). Are oncs. swithing to something else or just staying with tamox. and crossing their fingers?  I've been on it since May 08 and have lots of aches and pains that I would love to blame on tamox and not on spread! I too had BL , but I did chemo and no radiation. I've had several false alarms since finishing treatment. I am also trying to be agressive with my diet and lifestyle changes and I hope I get to the point that I can say "damn meds", because I can live with the SE's they're not that bothersome. It's hard to live with the worry!..hugs. Shari

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