I AM SCARED

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Hi, I have been having pain in my hip, on the side. Also, where my leg goes into the socket, but it's not my leg but the socket. Also, the bone in my butt cheek. It started before the holidays when I was doing alot of decorating and cleaning. Since then it goes away and then comes back. Sometimes it hurts after sitting for along time or at night when I am trying to sleep or while walking.

I mentioned it to my onc in January and he said it wasn't anything to worry about. My blood work was fine. I had to go to my PCP this morning 'cause I have bone ganglion cysts on my wrist and thumb bones. She said they are nothing to worry about but is sending me to a hand specialist for peace of mind. I told her about my hip. She is sending me for xrays today for pelvis,hip and spine.My onc always praises her..he says she takes excellent care of me. I am scared out of my mind. I go after work.

I just needed to come here for comfort. No one understands my fear like you all do. When I was first diagnosed, as scared as I was, I did what I had to do and got through it. Of course, I could not have done it without all my bc sisters here at bc.org.This freaks me out more cause then it would be mets!!!

I need your love,support,hugs right now. I can't do these xrays without you. Thanks!!

hugs and prayers,

Candie

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Comments

  • waterlily
    waterlily Member Posts: 547
    edited March 2009

    Candie-

    It sure is scarey to feel these kind of pains and be wondering about mets.  As I understand it, an X-ray will only show bone mets if 50% of the bone in that area is affected. You may want to talk to your onc about a CT or MRI which can show bone mets that are much smaller.

    Warm wishes

  • Reneepals
    Reneepals Member Posts: 2,196
    edited March 2009

    Candie I so totally understand when first getting dx'd with breast cancer , how we just did what we had to do to get through it. It was such a surreal time. But we did it. I know its easy to say but, try to calm down. What ever it is. It is what is... I am not being sarcastic, believe me. I pray that it is nothing serious. I would also want an MRI done, just for peace sake. It almost sounds like Siatica, but I am not a Doc. You are doing the right thing by following up.

    Hugs

  • nobleanna007
    nobleanna007 Member Posts: 641
    edited March 2009

    Candie,

        I know your scared, cause I just went through the same thing! I was convinced I had bone mets due to the first scan I had done did not have contrast which back then we don't know what is what cause its so much imfo to take in. I have lived with the same pain 2 yrs ago and then it came back with a vengance after doing abraxane and Herceptin it is still painfull as we speak. I had my scans done in Feb. I have never been so scared in my life for those results. But it showed some arthritic changes but that is it!!. Phew was I relieved!!! 

        2yrs ago I went to a spine dr. and he did a MRI and said that he did not see anything then. I thought I had a sciatic nerve problem because like you if I ever over did anything it would come back. He thought a nerve maybe pinched under the gluteous muscle, I couldn't even drive without lifting and stretching my leg out to stop that pain. And then when chemo came along it went into both sides and thus why I was scared. I still am going through this but I hope once Herceptin is done my body will go back to normal whatever that is now. I do feel for you its very painful and it maybe a pinched nerve. Though I don't wish it upon anyone but its better than thinking we have bone mets. Let us know how you make out and if they don't see anything in the Xray I would push to see a Orthopedist and have them look and test you.

                                   Good-luck!! & Big Hugs!!!!!!

  • hollyann
    hollyann Member Posts: 2,992
    edited March 2009

    Candie i know how you feel...After 2 yrs NED I found a lump in my left foob......I was terrified and didn't mention it to my doc for 6 months..Finally called breast surgeon and had biopsy...Thank God it was B9.....I also had bone scan for joint pain everywhere...especially wrists and spine.....Turned out ot be arthritis mostly on the left side and I have lots of calcifications on my left side in my joints....I am going to a rheumatologist soon.....Good luck and God bless.....

  • marshakb
    marshakb Member Posts: 1,664
    edited March 2009

    Candie, please do follow up on your pain issue.  I started with a "catch" type feeling in my leg.  Not all the time, but it did progress to a slight limp.  I saw my pcp, a chiropractor, massage therapist, etc.  Everyone agreed it sounded like a pinched sciatic nerve.  Over time it got so painful I went to the ER.  They found a femur met with a simple xray.  PET/CT found the rest.

    I'm not trying to scare you, just want you to check it out.  I pray it is nothing more than something pulled or maybe the beginnings of arthritis or osteo.  ((((((((Candie)))))))))

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    wow...you are all great. I cherish all your advice and will take you with me today when I go for the xrays. I will keep in touch. I will be back as I await the results...you all know how that is..the worst part is the waiting.

    hugs and prayers,

    candie

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

    Candie

    I had almost the exact same thing as you!!!!! The first go round with it was back in Sept...it scared the living daylights out of me......my pcp ordered xrays immediately as I had the pain for a couple of months before going in....she sent a copy of them to my oncologist and they had several others look them over.....to my relief, there was nothing there at all.....simply se's from tamox and having a hysterectomy dropping my estrogen....

    It lasted for about 3 months then disappeared.....a couple of weeks ago I had a bout of it in the other hip/lower back area...I dont know what brings it on but it is very painful...this time it didnt last only about a week and a 1/2 so doesnt make sense.

    Best wishes

    Jule

  • Kindergarten
    Kindergarten Member Posts: 4,869
    edited March 2009

    Hi, Candie!!! I have been gone from the boards for a long time and I hope no one minds that I have come  back. I left, kind of on a bad note. Everyone,please accept my apology.  I am so glad this forum was created. I have bone pain on and off also, hips, back, legs, arms, but my onc has said the same thing, don't worry. This has been going on for 4 years, so I am sure that you are probably experiencing the same thing. Aromatose inhibitors can cause these problems. I think if it were serious, the pain would not just come and go. I remember reading in Dr. Susan Love's book, that you would definitey know if it were serious, because the pain is like no other. God bless you and try not to worry, but always make your onc aware of situations that bother you. Kathy Prihode

  • WellWater
    WellWater Member Posts: 6,546
    edited March 2009

    Hi Candie:  I am pretty much in the same boat as you - I started with side pain and when onc sent me for a some c-scans, he found a spot on my rib and pelvis..  Nuclear bone scan next and they found more "spots" on ribs, pelvis and tailbone.  Then came the X-rays and PET and that determined that rib and pelvis spots were fine; tailbone, however, has some "activity" going on (and it's tender along with butt cheek bones) - onc said nothing showing up as cancer right now but we'll rescan that tailbone in 3 months. In the meantime I'm trying to be positive about it but when I sit a certain way or lay down and move, the tenderness makes me a little edgy.

    I am praying that you'll get good results...keep us posted.

    ((((((((hugs))))))))  Trina

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    JUle,Kathy,Trina, thanks for adding your thoughts and experiences.

    I went for the xrays today and now I wait. I know that this is all in God's hands. My DD just had my first grandchild, a girl, Marley Marie born on 2/15/09. I just pray that all comes back ok so that I can enjoy her. I feel that she is such a blessing in my life and such a treasure.

    Thanks for all your good thoughts and prayers. I treasure those also.

    ((((hugs))))))) to you all

    Candie

  • MHF
    MHF Member Posts: 3
    edited March 2009

    HI Candie, I know how scared you are at this time , we have all been there .  Are you on either Femara or Arimadex?  Both can cause bone and joint pain .  I was on Arimadex for about 6 months and ended up barely able to walk.  Big improvement with the Femara .  Suggest you check with your onc if you are on either of these for an alternative .  My thoughts are with you 

    MH 

  • konakat
    konakat Member Posts: 6,085
    edited March 2009

    Hi Candi -- Glad you're getting the xray.  My tumor markers always came up normal, even with mets -- markers alone are not enough.  Looking at your dx, not that I am any expert or anything, but I bet that it's not cancer -- that it's from your AIs, something else.  Looking forward to your good news -- that it's all clear!!

    Elizabeth

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    Hi MH and Elizabeth,

    thanks for responding. I haven't heard from my PCP yet about the xrays. Usually she is quick with getting back to me. I usually also stay on top of things but this time I am trying to ignore it. I am sure she will call soon. Yes, I do take arimidex and I know it can very well be from that. But the whole thing just freaks me out right now. I am trying to keep busy and not think about it. I will let you know what she says. Thanks so much for your concern. It certainly means alot to me.

    Hugs and prayers,

    Candie

  • konakat
    konakat Member Posts: 6,085
    edited March 2009

    Hi Candi,

    I've noticed that if it takes the dr a while to get back to me it's good news.  Same thing if a follow-up appt is rescheduled.  So, I have my fingers crossed that your PCP is slow because there's nothing to worry about!!!

    Elizabeth

  • DragonladyTina
    DragonladyTina Member Posts: 371
    edited March 2009

    Best wishes for a clean xray Candi,

    Tina

  • mmm5
    mmm5 Member Posts: 1,470
    edited March 2009

    Hi Candi

    I am going through exactly same thing right now, I have had the pain for 1 month. I posted under Her2, my Onc's just don't think its METS for reasons I listed, still in treatment too early for stage 1 to recur Yada Yada Yada, I was scared to death, they took me off Arimidex for a bit it has been over a week no change. I had an xray that came up mild degenerative changes, they sent me for MRI on Friday of course now I am on the waiting game over the weekend. Guess that is when we really turn to our friends on this board as I have been on all day. If it is any consolation your pain sounds much like mine and I have been told by GP and ONCS they believe arthritis or nerve pain from degeneration and Arimidex.

  • ejlj
    ejlj Member Posts: 211
    edited March 2009

    candie,  I too ended up with a ganglion in my left elbow.  I too thought for sure it was mets.  MD said that chemo does a job on our joints.  I also have had a terrible flare up of my arthritis, but of course think it's mets and have had several scans to prove otherwise.  I started taking Celebrex which helped somewhat, but have noticed an even greater decrease in pain with the addition of Omega-3 supplements to my diet.  Wish you well.  Tina

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    Tina, thanks for your best wishes.

    MMM, yes I couldn't get through any on this without my bc sisters. No one understands my concerns like you all do. Best wishes to you for good results from your MRI. Do keep in touch.

    Tina, did they remove the ganglion from your elbow? Or can it just stay there? How do you take the omega-3? Did you start taking it at the advice of your Dr or on your own? Sorry for so many questions.

    I  still haven't heard from my PCP, so I took a deep breath and called her this morning. The receptionist told me they just got the results late in the day on Friday and she will loook at the exrays today and call me....oh boy....had to just take a xanax. I will be in touch. God bless you all for your concern.

    Hugs and prayers

  • coonie
    coonie Member Posts: 7,618
    edited March 2009

    Candie....I've been reading your post and just HAD to let you know you've been in my thoughts and prayers. I know you're really worried. I hope everything turns out to be NOTHING and that you can just jump right over this hurdle and that you mind can be at ease! (((((((((((((gentle hugs)))))))))

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    Coonie, thanks so much. I appreciate you taking the time to post.

    Hugs and prayers

  • ejlj
    ejlj Member Posts: 211
    edited March 2009

    hi candie,   I hope you get those test results soonso you can put your mind to ease!  The ganglion on my elbow is still there and I plan on leaving it there unless it bothers me too much.  You can leave the ones on your hand/thumb as well unless they become to bothersome.  It's not too uncommon for them to flucuate in size.  Sometimes they hurt and sometimes they don't.  I too have that same hip/butt thing that hurts mostly when sleeping though I'm aware it's there during the day as well.  I had a pelvic scan that said it was arthritis so I guess I have to believe them.  My md put me on celebrex which helped a little.  I really noticed a decrease in pain when I started taking Omega-3's from lef.org.  I also take other supplements that act as antiinflammatories, but I really think it was the Omega's that are helping.  No I didn't ask my MD if it was ok only because he told me a short time ago that it was ok to now take whatever I wanted.  tina

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    Tina, thanks for the info. I think I will check into the omega-3's

  • ejlj
    ejlj Member Posts: 211
    edited March 2009

    please let us know when your test results come in.  tina

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    Hi, my PCP called tonight. Arthritis in hip, nothing in pelvis. They see scoliosis in lumbar spine but because I have a history of bc they want to do an MRI. Crap!! She called my oncologist and read the report to him. He said my blood work is always good, so he doesn't think it's likely that there is cancer...but again 'cause of the history he agreed with the MRI.  She said if I didn't have this history they would stop here nad do no more. She says she and my onc don't feel there is anything to worry about. So, she told me to call her office on Wed. They should have my ins.authorization by then and then make an appt for MRI. I tend to have stiffness in my lower back but I can't remember whether I had it before bc or not.

    I am gonna try not to worry but you know how that goes. I just have to keep myself really busy.

    Thanks for your support, I will continue to post here as others may need mine.

    Hugs and prayers

  • mmm5
    mmm5 Member Posts: 1,470
    edited March 2009

    OK here go's Candie - as you know I just went through exact same scenario.

    Pain in hip, down the leg, and really found out that that was referred pain from the Lumbar area.

    I had an xray of lumbar and hip last week, because of my anxiety he ordered stat and found out that night that the bones looked good but there was "mild degeneration" in the lumbar sacral joints. I also have reffered pain into the joint that gos into femur like you described.  They took me off Arimidex and I still had pain, you would think that I would have felt comfort by negative xray but still freaked out. They ordered MRI and I had it last Friday, he told me he would get someone to read it and call me my end of day, no call, I flipped out all weekend. I started calling at 8am today and finally called at 2 and it was all ok except mild degeneration and arthrosis in L4 and L5. I cried with relief. I actually had one day yesterday without pain and I started not to feel as frightened as the pain had eased, so I am really wondering if I have all these joint issues and in fact the Arimidex made it so much worse. But I will tell you that the pain I was having was more than sore hips it was like something was pushing on a nerve, and it was scary for over a month.

    Finally today I can put my mind at ease until the next twinge......I hate that attitude and am really working on letting go it is my mantra!

    Anyhoo- I am just saying that you sound very similar and I would not worry, the doc and physical therapist state that a good sign is if you can change positions from sitting to standing or standing to sitting it is usually musco-skelatal in nature and not cancer.

    I just hate that for all of us we live in such agony. One other little trick I will pass on is yesterday I took on Ativan (leftover from chemo) because I had such horrible anxiety waiting for test. I really think that is part of why I had no pain yesterday because it relaxed me, advil and Percocet had not touched the pain.

    Don't discount the Arimidex as well!

    Good luck and let us know how it comes out!

    And to the rest of you, just a note I have had 3 scares since January and they all turned out to be something other than BC so I really believe we have to find a way to give ourselves a break, I am saying this for myself as well.

  • marejo
    marejo Member Posts: 1,356
    edited March 2009

    Just wanting to offer you encouragement and send a cyber hug.

    The thing that jumps out at me from your post is that the pain "comes and goes" and that you've had it since Christmas time.  Cancer doesn't come and go.  Pain from cancer, doesn't get better for a time and then come back.  It would get worse and worse.

    Of course you need to be checked out because that's the right thing to do......but I'm guessing you will be fine....and praying that is so.

    I understand.....

    Mary Jo

  • coonie
    coonie Member Posts: 7,618
    edited March 2009

    Oh Candie.....I just KNOW everything is gonna be ok!!! Stay strong :)

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    mmm,coonie and mary jo, I just can't tell you enough how much I appreciate your posts. Your words of support and encouragement touch my heart. I will stay in touch. Thank youWink

    Hugs and prayers

  • candie1971
    candie1971 Member Posts: 4,820
    edited March 2009

    well,I got the authorization from my insurance company today and my  MRI is scheduled for Monday at 5:30 pm. I am beside myself expecially since I have been having lower back pain since yesterday. Never had it before. It hurts when I sit and when I walk. I am trying to keep myself busy when I get home from work...but it is still in the back of my mind.

    Hugs and prayers

  • coonie
    coonie Member Posts: 7,618
    edited March 2009

    I'll be holding you up in prayer Candie that everything will be ok. Try to do something to take your mind off things. It's so easy to worry and blow things way out of proportion. I know you'll be relieved when Monday gets here!!!! Keep us posted, ok? ((((((((((((((((((((((hugs and prayers)))))))))))

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