Researched bone mets, now terrified!

ByFaith
ByFaith Member Posts: 270
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Since November I've had a problem with limited range of motion and an aching of shoulder and upper arm (no injury).  The symptoms seemed to be exactly like frozen shoulder as time went on, but back in December my primary had initially dx'd it as rotator cuff tendinitis and said my rads (July-August 2010) and Femara could well have caused the problem. This January with only slight improvement in symptoms, I called my primary, who ordered an x-ray and consult with a rheumatology.  I also spoke with my onc NP about the symptoms as they related to Femara.

I made the horrible mistake tonight of researching possible sites for bone mets and saw that the upper arm was an area where they could occur.  Prior to seeing that tonight, I thought it was possible they could occur there, but more commonly elsewhere.  Now I'm feeling literally nauseous and just about as sick as I felt the night I looked up "architectural distortion" on the Internet after my first abnormal mammo and before my BC diagnosis.

My primary (who referred me for x-ray & rheumatology) and my oncology team (rad/onc and onc) are all at the same renowned clinic and all the specialists confer with each other.  I would hope my primary would have said something more in December or January if he thought it was a metastasis, and his nurse told me his notes indicate other possibilities. My onc's NP only said a x-ray and consult was very reasonable given the symptoms, but if I couldn't top worrying, then go straight for an MRI.  She never suggested I do that or that I come in before my next followup exam.

Why didn't I stop before I saw the negative news and why do I lean toward thinking the worst and not the best?  Can anyone help me?  Just now I did something to aggravate it (by stretching the range of motion accidentally) and both the upper arm and shoulder hurt.  Thanks for reading this.

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  • jax65
    jax65 Member Posts: 47
    edited January 2011

    Just wanted to let you know that I had the same thing except that I am triple negative so couldn't even blame it on the Femara. I don't know how much surgery you had or if you did reconstruction but all of these things can cause arm and shoulder pain. My pain started after my tissue expanders were place and took about six months to go away. There are still times that it aches and yes my upper arm hurt also. They did xrays and could find nothing. I do find that it still aches just not as bad and usually during colder weather so they are chalking it up to arthritis. Our bodies have been through alot of trauma. Please try not to worry that it is bone mets, I know easier said then done, being TN i worry about every ache and pain. Stay away from Dr. Google they have convinced me in my weaker moments that I have mets everywhere. Hoping you find relief from your pain very soon.

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  • ByFaith
    ByFaith Member Posts: 270
    edited January 2011

    Hi jax65:

    After finally calming myself down enough to sleep last night, I was almost afraid to read any replies to my frantic post from last night.  I even woke up anxious and have been trying to keep myself otherwise busy today.

    Your words did calm me, and I especially had a laugh from the "Stay away from Dr. Google" remark.  As soon as I "met" Dr. Google (venturing into scary territories, not my usual searches), I did not like his "bedside manner" and found him to be an evil "doctor" !  I fell asleep knowing that there are just as many more positive stories to be found on the Internet as there are scary ones, and only the answer itself will be the diagnosis.  I let it go at that point, and as best as I could, and I'm definitely trying to reduce the leftover anxiety by keeping busy today.  I'll never "Dr. Google" again!

    Thank you for taking the time to reply.  It means so very much to me.   

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    "Why didn't I stop before I saw the negative news and why do I lean toward thinking the worst and not the best?"

    Oh, Honey - fasten your seatbelt, as we are all on this plane ride together!  This is the common mantra of all of us, no matter what type of breast cancer we have.  I believe "thinking the worst and not the best" was instilled in each of us the day we were diagnosed.

    I am sending thoughts as positive as I can muster that this is not cancer-related at all.

    Linda

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited January 2011

    Shoulder injuries and problems are so common after breast cancer treatment that I cannot believe we aren't routinely offered physical therapy.  Why they amputate our breasts and either rebuild them with our own tissue, or put implants uder our muscles - and ignore the musculature and postural changes that occur is beyond me.  They don't amputate any other body part without extensive PT.  Breasts are not useless appendages, they are part of our core and removing them changes us.

    I, too, have shoulder problems.  I'm doing PT now but  it got so bad I went to an orthopedist who did an x-ray.  He thinks I have a SLAP tear and has set up an arthrogram.  But, he also found a spot on my humerus, completely unrelated to the shoulder problem.  So that will be MRI'd this Saturday and we'll see what it is.

    It's normal to be worried - breast cancer patients have to learn to live with fear.  The funny thing was, I never though this shoulder injury was related to cancer in any way.  I knew for a fact it wasn't, so when I got the x-ray and saw the abnormal spot, I was a bit nonplussed.  And, a bit pissed to be plunged back in to the world of fear where I shouldn't be.

    Next week I'll know what it is.  I would request PT for you, before your shoulder gets any worse.  

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  • hrf
    hrf Member Posts: 3,225
    edited January 2011

    I am also having shoulder/upper arm pain. I didn't think that was a spot for mets. Now I'm worried too

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  • MelG
    MelG Member Posts: 23
    edited February 2011

    I had a left mastectomy in July 2003.   About six months later, I had severe upper arm pain and a decrease in the range of movement from my shoulder.  On one occasion, I accidently jarred my arm and nearly dropped to the floor with the pain.  I panicked badly. Turned out to be a frozen shoulder.   In the end I could barely lift my arm at all, but over a period of months, it eventually resolved itself.   A year or so later, the same thing happened to my other shoulder!  

    The main reason I panicked was because I googled "breast cancer shoulder mets" and found that the symptoms were somewhat similar.   So yes, sometimes it IS best to stay away from Dr Google.  :-)  But upper arm pain with a decrease in shoulder movement are classic symptoms of a frozen shoulder.

    I agree with CoolBreeze's comments about not underestimating the effect of breast removal on our bodies!   I am quite sure that my shoulder problems arose as a result of my surgery.

    Get it checked out for peace of mind.

    Love Mel

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  • somersher
    somersher Member Posts: 13
    edited February 2011

    Have just now been down this same road.  I'm a year out from beginning my journey and in December I became convinced I had bone mets due to back, hip, shoulder and neck pain.  Onc blew me off and said it wasn't related to breast cancer; my internist who is a friend took me a little more seriously and ordered a bone scan.  Results in last week:  no mets, just arthritis in all these places.  While I don't relish the thought of living with an arthritic body this is, of course, a much preferable reality.  I am taking something called Daytrol and it seems to help.  Try to relax, and keep going until you find a doc who will put your mind at ease.  Best wishes!!!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2011

    CoolBreeze, I just read your post and something stood out:  breast cancer patients have learned to live with fear.

    I don't know why, but this simple statement seemed to speak to me to help me understand and deal with the ridiculous amount of fears I've been exposed to since my Dx.  You "learn" to "live with it". It just comes with the territory.

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  • Medigal
    Medigal Member Posts: 1,412
    edited February 2011

    After reading your post, it dawned on me how fortunate I was to be diagnosed with bc after I had already been suffering with so many other bodily pains.  Neck, back, shoulders, hips etc. etc.  Now I am on Arimidex for 7 years and don't let the pains concern me because I guess my mine just got used to living with all these pains.  So I don't get all concerned if any of the pains are "mets" since I have no idea how they start or when.  I figure I have an Onc, who if he is doing his job, should know what to watch out for to determine if he thinks something in me is abnormal.  That's "his" job.  Too much knowledge from googling up everything on the internet can make bc even more frightful than it is.

     I think it is best for me to live every day best as I can and keep busy so I won't obsess on "what if this is" all the time.  What's going to happen to me has already been determined in the future so why make my present more miserable.  Please try to learn to cope with your fears by keeping busy and not obsessing on them.  It is the only way I can see that we can survive and still be able to live our lives best as we can. Best of luck to you.

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