The internet makes it worse! Back pain

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2013

    Hi Cathy,

    You are right, I'm not my usual self.  As you know, I've been very optimistic about this whole thing since day one.  And, while I'm still mentally optimistic, 100%, I don't feel good and I'm getting tired. When I was tired and didn't feel well due to chemo, at least I knew there was an end date.  This one - I have no idea.

    I don't feel like I have the energy right now to go through a bunch of new tests and diagnostic procedures, so I'm kind of in the "I hope it goes away" mode. All I do is go to work and come home and sleep. By now, 7 months post-chemo, I thought I'd feel a lot better and I don't.  I barely have a life and still don't even have the energy to cook dinner on a regular basis.

    An infection is an interesting idea, I guess I can ask about that in three weeks when I see my onc.  I also have some keflex (?) from the exchange surgery that never happened - I suppose i can doctor myself and just take it. 

    I already had appendicitis - was diagnosed with that one year before cancer.  And it was atypical. It crossed my mind that this could also be some referred pain since maybe my belly wants to do that.

    I guess the good news is the pain is changing.  It's still that aching, burning pain in my back and side that never goes away, and I still have bouts of constipation, but now I have the added bloatedness and the sharp pain and pressure on sitting. The finger numbness has gone since I switched work chairs, with the exception of a slight sensitivity at the tips from leftover neuropathy.

    I think the symptoms now points to an organ but then again - I thought my breast cancer was a cyst for months. So, I'm not exactly setting the gold standard in self-diagnosis. 

    It will maybe become definitive at some point, or go away.  I no longer have any fear it's cancer.

    When I told my onc a few weeks ago, I told him it was back pain.  When I told my PCP, I told him it was back pain but I thought it was likely an organ since it had changed and it was sensitive to the touch.  Neither one palpated me.  I wouldn't have expected it from the onc because I don't think I gave him a clue it was anything but bone.  But, I  was surprised the PCP just gave me soma samples and didn't even touch me. 

    I confess that I've gotten no better at preventative care than I was before cancer.  Mostly because I wanted to wait until treatmnet is over to get all that done - I can't keep taking all this time off work.  I figured once my surgery was done and herceptin was over, I'd find an OB and get my colonoscopy.  I have not been to an OB/GYN in years and don't even have one.  Yes, I'm hanging my head in shame, I of all people should know better.

    Thank you, Cathy, for caring.  :)

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  • lisa-e
    lisa-e Member Posts: 819
    edited October 2010

    In my opinion, you should  get the pain diagnosed.  You may be tired, you may not have the energy to go through the diagnostic tests, you may not want to take time off work, but something is not right -  bouts of constipation, bloating, pressure, pain when you sit down sitting, Sure sounds to me like something bad is going on in your pelvic cavity.  Remember when you take tamoxifen you are supposed to get an annual pelvic exam, as it can cause pelvic issues.  

     You say you don't fear it is cancer & after a clear bone scan, I would agree that you don't have bone mets.  But you don't know what it is and said you are not doing well diagnosing yourself.   You doctor was concerned enough to offer you an MRI.  I sure as heck would have gotten it.

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  • PiscesMoon
    PiscesMoon Member Posts: 206
    edited October 2010

    coolbreeze,

    have you visited your gyn to rule out any problems with unterine or ovarian issues?  i know tomoxifan comes with the side affect (albeit rare) of endometrial problems.  and we as bc patients are at higher risk of having ovarian issues.  just a thought.

    ~M

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited October 2010

    CoolBreeze, the fact that you say you don't have the energy for tests etc is, in itself, another symptom. Please get it checked out. You're probably right that it's not cancer, but it's something.

    All the best.

    Leah

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  • janicemarie3
    janicemarie3 Member Posts: 124
    edited August 2013

    Coolbreeze

    I agree with the other ladies you need to go to see your gyno.  I hadn't been to one in years also but I resentely had to go because the tamoxifen that I was on for a month made a cyst on my ovaries grow to 9.5 cm.  I know that for a couple of years I had cysts on my ovaries that would burst and it would cause me pain.  I hope you start feeling better soon.

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  • cbm
    cbm Member Posts: 475
    edited October 2010

    Hi, Ann.  I heard a great program on NPR yesterday that was all about how docs have stopped being "hands on."  Imaging like MRI and CAT have apparently replaced poking and prodding, to dangerous effect.  It's hard for me to imagine that you went to two doctors about this and neither touched the area where you have painful symptoms.

    But: don't take the Keflex to treat anything that isn't identified.  If you do, you might mask important symptoms, and you definitely will begin to build a tolerance to Keflex.  You don't want to do that with antibiotics.

    A muscle, disk or nerve would have at least relaxed a little with the soma, and given you some relief.  

    The ObGyn sounds like a very good idea.  I know you know this, but this will not just go away or get better on its own.  

    As an HR professional, I can tell you that no one expects to miss work, but you do have the right to time off for health care.  They don't have to pay you (unless your employer policies specify that they will), but you are entitled to family and medical leave.  Even if your days off are not sequential, your employer should be prepared to give you info on how to request needed time and how to protect your rights.  Cancer patients are usually protected, as well, under the Americans With Disabilities Act--having or perceived as having a condition that limits one or more of life's activities.  Or something like that, it's been a while since I looked at that one.

    I have to say, though, that most people are sympathetic and want to help you get better and get healthy, whatever you have to do.

    Call the onc back and tell him what you wrote here.  You aren't supposed to feel like this and pain is always something.  At least get a referral to someone who can give you an internal examination, and palpate where it hurts.  If it is an infection it could be very serious. (I know, that is better than cancer; funny how we all think alike.)

    Hugs,

    Cathy 

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2010

    I had herceptin today Cathy, and requested a pain med renewal..  They asked about my back and I told him it was bad still.   Then the nurse went to talk to the doctor - he gave me my script but insisted on an MRI.  I told the nurse I thought it was organ but this is the process I guess.  I told my PCP no on the MRI but the onc is insisting - thinks it might be a slipped disk .  They also gave me some samples of a muscle relaxer called skelaxin. 

    It probably is something like that, what do I know? 

    The problems I have taking time off work are mental ones - work is great.  Nobody has complained but when I'm not there, somebody else has to do my job.   It's not the kind of job where you can leave work at pick it up - it's active stuff that has to be done that day.   I just got this job in July and didn't apply as a cancer patient.  (although they knew I'd been treated for it).  So, I feel guilty when I have to do this.  I have surgery coming up in November and then I will have to take a week off, maybe two.  I used up my FMLA during my last surgery and chemo and it won't start over again for a couple more weeks, and I have to use all my sick and vacation too.  So, taking days off for tests I think are useless isn't what I want to do right now.  I would just like to wait and see  if it gets worse or better on its own.

    I'm not worried about my job.  They won't fire me for this.  I'm very good at it anyway but I just don't like how my being there impacts other people.

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2013

    Just thought I'd bump this.  As it turned out I couldn't have the MRI.  Still have a #($*#( expander in after 13 months, and it has a magnet in it.  I didn't want that sucker shooting through my skin like that metal rod on a recent episode of House.  :)

    I thought I got off scot-free, but no.  He set me up for a CT.  I had it last Friday.  I see my onc tomorrow.

    I'm not worried - but because I'm an idiot and don't learn from my own thread titles, just for grins I did a search about negative bone scans resulting in positive CT or MRI scans for spinal mets.  And, it's apparently not unusual at all.  Bone scans, I discovered, are first line and only discover larger destructive mets.  There are more kinds that hide and need to be seen on MRI. 

    I still don't think it's mets though, and am not worried.  (Although, you'll notice my search didn't revolve around a disc problem.)

    I will, of course, let you know my negative results.  And, I will go see a gyn at some point.  I am aware of the SEs tamox can cause but I'm very sequential and I had to finish one thing before starting the next.

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  • Luah
    Luah Member Posts: 1,541
    edited November 2010

    Coolbreeze:  Hope all is well with your CT and there's some simple, non-BC explanation for your aches and pains.  It sucks to have such worries. Thinking of you and sending (((hugs)))  

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2010

    As I expected, my spine is completely normal.

    And yet, I still have the pain.

    The doctor is at a loss. He doesn't' think it's internal.  I suggested that maybe having one expander in for a year is causing muscle pain and he looked at me blankly.  He said that he'd order an abdominal CT but then he was out of ideas. I really don't want this CT - I don't think he wants me to have the CT.  

    I figure it'll probably go away on its own.  I have my surgery next week to get the expander out, and maybe once I heal from that, it'll disappear,

    It's just so weird that it's on the left side.  That makes me feel like it's not normal tamox discomfort.  

    I guess I could be going insane.  Always an option! 

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2010

    Have you consider LE?

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2010

    Barb, it's the opposite side as my mastectomy and in my lower back/side.

    Honestly, I think it's just the expander probably making me twist in ways I don't realize when I sleep.  That's all I can come up with at this point.  I will finally have it out next week and then maybe things will improve.

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  • maggie5
    maggie5 Member Posts: 40
    edited August 2013

    CoolBreeze,

    I just wanted to say I'm sorry you're going through this pain.  I have left side/back pain too and have been to physical therapy but it was still there.  My onc ordered a PET scan which was negative.  He said to stop Femara for a week to see if it would go away and It has gotten a little better but I still feel something there sometimes.   I worry because the only way my breast cancer was found was with MRI and I think I may ask for one of my abdomen just to be sure.  I had dbl mast. with tram flap recon. and always think maybe it messed up my colon or something.  Hope you feel better and get answers.

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