It's Been awhile

BBK Member Posts: 53
edited March 2014 in Breast Cancer #1
I haven't been on here recently, and haven't even checked this network in a while. Sorry... I'm now 4 years' out of dx, surgery (mastectomy), chemo, and still taking tamoxifen. I'm in the 1% who seem to get all the side effects of treatment, and have developed several health issues following chemo. I'm just wondering if there are others out there like me...I am in constant pain...on a fairly significant level. It's the worst in right hip -- for over 3 years' now, the left shoulder (same side as cancer) -- for about a year, both wrists -- recent to the past 2 months, and fingers -- same as wrists timewise. I also have some days where other joints hurt. The shoulder is not limited to the joint, but also to the shoulder blade. Hip isn't limited to the joint, but also to the leg bone and lower back and groin. bone scan in November 06 showed "possible arthritis," not a definitive diagnosis by any means. I've read that arthritis pain is worse in mornings when stiffness and so forth makes it hard to start the day. But, I have pain constantly -- all day and all night. It's debilitating. Although I press through it, it's becoming very depressing, and I feel like my quality of life is practically nil. I'm most fearful that my cancer has returned. There was a "spot" on a rib on left side that last bone scan said was "questionable" yet no follow-up has been ordered, and my oncologist seems to have automatically ruled out mets. but, to be in constant (!) doesn't make sense to me. And, to have developed arthritis in such a short span seems unlikely to me, too. I'm thinking I need a full-body MRI or PET scan or something. I can't live like this for the rest of my life (I'm only 48...). Any thoughts? Suggestions? Anybody out there suffering like I am? If so, what has YOUR doctor told you? Thanks. ~Barb


  • Hey Barb,.....
    You remember The Twilight Zone....noo noo - noo noo- noo noo - noo noo......hahaha.....
    I bring this up because my name is also Barb (Barbara) and you could have been writing my story here.
    I lost my right breast in 86 and left one in 88...chemo, rads, tamoxifen for 7 years....then in 96 I have this "questionable" spot on ribs...(I kid you not), no biopsy, it disappeared after 3 years on megase (generic-I forget main stream name), but since 2000 I have been NED.
    BUT...the arthritis and pain you life to a T. I had the MRI...they said, ah...hun, you have arthritis.......duhhhhhhh.
    Sooo....what I do is take a low dose aspirin just before bed every night. That makes it possible for me to sleep about 5 or 6 hours and increases circulation enough that getting out of bed in the morning is manageable. Then I make it a point to get off my feet for a couple of hours in the afternoon. But the pain is always there in some degree. And like you, I push through.
    The only other option I see is to get on regular arthritis meds and I HATE MEDS...there is ALWAYS some side effect of some kind. So I am holding out as long as I can. I am 59. Thankful to be here for sure but just a tad t-oed about my 'golden years'.....yeah, right.
    Anyway, God bless and email me here if I can depress you any further...LOL. (By the way, depression has been my familiar friend for years too.) That's why I come here and to the chat rooms. This place is GOOD MEDICINE.
  • Susan956
    Susan956 Member Posts: 510
    I don't have advice... but wanted to let you know that you are not alone.... I try to stay as active as I can... and I have found that massage therapy can help at times...

    Take Care... God Bless...

  • Skybuf
    Skybuf Member Posts: 143
    I too hurt all the time BBK, seems to come with the territory....I take Arimidex, Lyrica, Lipitor (HBP) and meds for high colesteral, don't know which one is the culprit but my family dr dosen't seem to care either. I was told by him I had 3 weeks to live!!!!!!!!!!! yes last Christmas, a spot on my spine he called 'bone ca' but seeing the Oncologist it was nothing, DON'T worry worry til worry worries you! My granma always said that and it is true. Think positive, get checked, but don't worry yourself or you will be sick.
    Get to your Dr and demand results...we must be our own advocates know your body the best.
    God bless and keep coming here...see you in chat :)