My Big Pink Elephant

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Arayasunshine69
Arayasunshine69 Member Posts: 50
edited June 2014 in Stage III Breast Cancer

Today I saw my oncologist, to discuss my latest bone scan, and CT results.  The spots in my lungs and liver have not grown, or shrank, so he believes them to still be benign.  The spot on my spine, is not growing, or spreading.  The spot in my pelvis, continues to shrink.  He can not tell me if it's cancer, or something else, because it's too hard to biopsy.  It's not spreading.  He said, he doesn't feel like I'm leaving with the news I want.  I told him, I wanted him to tell me it's gone, and I'm in remission.  He said he can't do that, because it can always come back, etc. So now what?  We just follow it?  I am tired of cancer.  Family and friends are asking me for an update, and I don't know what to tell them.  So I told them "the spot on my pelvis continues to shrink, it's not spreading, but they don't know what it is, and will just follow it." I don't want to think about this everyday.  I want to live my life.  I want to focus on getting myself as healthy, and active and fit as I can, and do stuff with my daughter, and enjoy every day to its fullest potential.  My hair is growing back, my body is recovering, I will be done with Herceptin in July, and can start thinking about reconstruction.  I can not spend any more time, wondering what the F is on my pelvis.  I am trying to move forward. I am happy it's shrinking and not spreading, and I guess chemo and radiation done what they were suppose to, so I am happy for that, but I really didn't want any pink elephants....

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited January 2011

    Kellie,

    Wow, you are in a tough spot.  I guess I would stick to insisting that they are doing periodic scans to follow you until they are certain about what's going on with you.  Your situation speaks to the peril though of scans.  Sometimes they don't really know from scans what is going on with someone, and they leave us with the dilemma of deciding whether or not to pursue getting biopsies. 

    I guess the best advice I could give is to just keep trucking with your treatment in the meantime and hope for the best.  I know that's not a great answer.

    Hugs

    Bobbie

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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited January 2011

    You want what we all want...to be told we're finished with cancer.  I finished treatments up in December, and people think I must be cured, and should be done with it, or if not, that I should be doing something else to become cured.   I have a hard time getting people to understand it just doesn't work that way, even though I sure wish it did.   We're in a weird limbo, you more so, because of these undefined 'spots'.

    Sounds like your onc is willing to follow this closely, and as hard as it is, you're doing the right thing to assume these spots are nothing until proven otherwise, or that the Herceptin will knock them out.   After the Herceptin, you may end up on an AI if you're not already, and that may also help prevent any new problems.  Good luck with the rest of your treatments.

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  • pshurtz
    pshurtz Member Posts: 3
    edited February 2011

    It's so tough living with the sword of damacles dangling over your head...and its hard to ignore it because most of us are left with the evidence of CA--imperfect/uncomfortable reconstructions, lymphadema, side effects of the meds---Geez its enuf to make you Insane!!!! In my case, as is probably true with most 50 somethings--when they do the screens they find evidence of other stuff-cervical polyp (it was nada--but we have to keep checking it every 6 months) sarcoidosis ( did all the tests 2x--every 6 months--and have a 3 inch scar on my throat so they could figure out why the nodes were enlarged--then I said what the hell--its asymptomatic--and I will follow up with it if I seem to have any issues....so at 3.5 years out (YAY) at stage 3--Im trying to minimize the screens and extra stuff.  I know you cant mentally ignore this...and your spots would have been unsettling to me too...but,seems your choices are 1) get a second opinion to reassure yourself that waiting makes sense or 2) learn to live with this extra uncertainty. Honestly, do you know anyone that walks away from a stage 3 CA diagnosis and who has had 1) surgeries 2) radiation 3) chemo & 4) takes AI's and bone strengtheners that ever looks or feels the same or better than the week before they got their awful diagnosis? Im not the same person and I will never be--just as, at 56, I cant wear the string bikini that I wore when I was 20! That being said--you have to do the best you can to keep a positive mental attitude and frankly, ignore it all--or as much as possible!!  Denial can be Good--as long as you arent denying real objective symptoms of illness. Live your life. 3 plus years into this--I still read as much as I can and follow the treatments--have cut way down on the supplements (the science just isnt there--yet,sigh) Eat healthy and have incorporated exercise into my life with the goal of lowering my BMI.  Susan Love says lower BMI and regular exercise is one of the most important things I can do to prevent met--and I believe her!!!!  Im wishing you the best...

    patricia 

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