Bone metastasis probable

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Leonarsu
Leonarsu Member Posts: 23

For a few months I was having what I thought was muscle pain in my hip area which I have had many times.  However, this would not quit and moved from butt area to side to groin.  Finally, I had a CT scan to check out what was wrong.  I was horrified to find out I probably have bone metastadis with danger of pelvic break. I go for complete bone scan Friday. I am terrified.  I don't know what to expect and I was sure because I had stage 1b initially I had little to worry about.  I have a very supportive partner but am having trouble keeping it together

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited July 2014

    Leonarsu - Hearing that you might have mets is definitely a scary thing. Of course you are worried and unsure about what the future will bring. If it is indeed bone mets , you will find that with treatment you should be able to have a fairly decent quality of life. There are lots of women on the boards here living with bone mets - I'm sure they will be along to share experiences and provide support.

    BCO is a great place to come to gain information and meet lots of women who understand where you are coming from. Keep us posted on how you are feeling and the results of your bone scan. We are all here for you. ((hugs))

  • Lee7
    Lee7 Member Posts: 657
    edited July 2014

    leonarsu, try not to worry too much. Wait until you have your bone scan because I think many things could look suspicious but not really be mets .  Read the other threads under this topic and you'll see many women who had symptoms and scans and then things were ok. Well....ok in the sense it wasn't mets, but it was arthritis or they got a fracture because of osteoporosis.  But not mets!

    It's a Saturday and likely not too many on the boards right now but hopefully you'll hear from others who can give you better info than me and help put your mind at ease for a bit.   Hang in there!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2014

    Hi leonasru,

    I am sorry that you may be joining us. Since it's so early in the game, it's hard to know what to expect? It doesn't sound as if you've had a bone biopsy. This may or may not be done, not only to confirm mets, but to determine the hormone receptor status, which can change, sometimes, from your original dx. My advice, for now, is try to not get ahead of yourself or speculate about things that you're not sure of, yet. Easier said than done:). As you learn more and come up with a tx plan, it gets a bit easier. Thinking of you.

  • Lee7
    Lee7 Member Posts: 657
    edited July 2014

    I realized there are 2 topics, one for not diagnosed with a reoccurrence but concerned (which is me) and the other which is this thread. I was trying to edit my earlier post but it ended up deleted.   BCO has been wonderful for me and you will find many supportive friends here.  Hugs.

  • Leonarsu
    Leonarsu Member Posts: 23
    edited July 2014

    yes not knowing is the worst.  Plus the cat scan report was very vague.  Sounded like it could be benign then wham. Likely metastasis.  No sizes, reasons etc aside from the fact I had breast cancer.  Benign tumours seem more common so I just don't know.  How accurate is the bone scan.  I had one three years ago which was fine

  • dlb823
    dlb823 Member Posts: 9,430
    edited July 2014

    Leonarsu ~ I'm so sorry about your CTScan results.  And I know exactly what you mean about the vague language.  That drove me crazy! Sometimes it sounds like the only reason they're concluding likely bone mets is based on our previous bc history, but I guess that can be pretty strong evidence.

    I hope your bone scan will have much better news, but if it turns out to support the CT conclusion, it's not the end of the world.  I was dx'd w/bone mets back in January -- also ended up with a fractured pelvis & femur -- but thanks to Anastrazole, I'm doing well and feeling pretty normal today.  So hang in there until you get more info', but also know that as long as bc is only in the bones, treatment can do wonders for it, and in some cases remission is even possible.  (((Hugs)))   Deanna

  • Leonarsu
    Leonarsu Member Posts: 23
    edited July 2014

    thanks.  That's really good info.  I have not had a fracture but it looks like I will need a hip replacement regardless.  Did you have radiation and chemo?  I am on tamoxifen because I couldn't tolerate arimidex. Gave me major blood pressure issues but I am sure there are other drugs as well.  Your info was really helpful and encouraging.  As long as I can live a fairly normal life I don't mind a few bumps to maintain that.  I was also stage II a with no lymph node involvement so I am surprised, disappointed whatever that I am dealing with this again.  That was in 2011

  • dlb823
    dlb823 Member Posts: 9,430
    edited July 2014

    Leonarsu, I think my hip replacement surgery (I was actually admitted thru ER due to excruciating leg pain after hobbling around with a cane for several weeks, not realizing I had worsening fractures...) turned out to be a blessing b'cuz my ortho surgeon feels he removed everything funky going on in that area.   The first couple of weeks of recovery was rough, but in 2 to 3 mos. I was pretty much back to a normal activity level, and today I often walk several miles when it's not too hot.

    Yes, I had chemo (TCx4) & rads back in 2008.  I passed on an aromatese inhibitor back then because I had a bad experience with Femara and was afraid of Tamox.  But I was doing a natural estrogen modulator, and think I was doing fine until an horrendously stressful episode last summer (our house severely flooded while we were away... everything had to go into storage while we lived in hotels and did a total renovation... lots of insurance and contractor issues...).  Anyway, I truly believe the stress of that experience sparked my recurrence, but clearly, there were lingering bc cells in my body.  And for some of us, genetics probably trumps tx.

     I'm still hoping that your bone scan surprises with different results than your CT!  Fingers crossed!    Deanna

  • Leonarsu
    Leonarsu Member Posts: 23
    edited July 2014

    Thanks for the further info.  I have been having muscle issues for several months which caused me to seek the catscan.  So guess I was lucky too.  What other treatment did you have with surgery or did you just go on AI's?  Regardless of outcome hip replacement is in my future.  I really enjoy your posts as you seem to have a similar situation to what I may have.  Thanks very much for replyong

  • dlb823
    dlb823 Member Posts: 9,430
    edited July 2014

    Leonarsu, other than some pain meds initially, I just had surgery and am now taking the A/I.  Xgeva has been recommended for me, but I've been slow to take it b'cuz of some necessary dental work I can't seem to face doing.  And that's interesting about your muscle issues.  I didn't have muscle pain, but around the time I was re-dx'd, I did have some sudden muscle wasting going on.  I tried to chalk it off to not going to the gym and to not refilling some hormones (DHEA & testosterone) my ND had had me on for awhile.  But in retrospect, I think it was all related to the bc recurrence.

    As far as the hip replacement... don't be afraid of it as long as you have an excellent ortho surgeon.  A friend of mine had a terrible fall while hiking last year... shattered her hip and had to be air-lifted off a mountain.  She needed an emergency hip replacement, and I watched her spring back to normal walking and her very energetic lifestyle in a very short time.  So I knew going into it that you can recover with a great outcome very quickly.  Since then, someone else I casually know had one, and he was also back to normal amazingly fast.      Deanna  

  • Leonarsu
    Leonarsu Member Posts: 23
    edited July 2014

    Good to know.  I know someone who has an in with an orthopaedic surgeon so I am asking her to put a buzz in his ear.  Being in Canada sometimes things can be delayed a bit so I am being proactive.  I will need hip replacement regardless.  I have friends who have had hip surgery so am not worried about that.  On the upside my companion has agreed to pay for a first class ticket to Paris when the dust clears.  So one must find some positives.  Thanks so much for your info.  It has been very encouraging.  Will post when I have results.  Take care

  • Leonarsu
    Leonarsu Member Posts: 23
    edited August 2014

    bone scan is inconclusive.  Dr has referred me to cancer clinic so.I will hear from them soon.  I am sure they have some protocols in place to nail down diagnosis.  Two small spots on rib and spine but may be from bad fall last winter.  Atypical but not conclusive

  • bevin
    bevin Member Posts: 1,902
    edited August 2014

    Leonarsu, that is hopeful news.  Hopefully they'll complete a CAT scan and confirm if a biopsy is needed. Good luck and praying for youl.

  • Leonarsu
    Leonarsu Member Posts: 23
    edited August 2014

    just came back from oncologist.  90 per cent chance of breast cancer spread to bone.  Bone biopsy will probably confirm. No plan of action until all tests are in.  Hopefully no spread to liver and lungs!  Feel better things are more settled

  • bevin
    bevin Member Posts: 1,902
    edited August 2014

    Leonarsu, I'm sorry to hear this. I hope the biospsy is not too painful and glad that you feel more settled.

  • Leonarsu
    Leonarsu Member Posts: 23
    edited August 2014

    thanks for your thoughts.  It means a lot to hear from others.  I have plans for a getaway with my fiancée and a trip with a girlfriend coming up.  Also going with a group of ladies to see Thunder from Down Under.  Can't waste time feeling so ory for myself.  I intend to enjoy every minute

  • bevin
    bevin Member Posts: 1,902
    edited August 2014

    What is thunder from down under?

  • Leonarsu
    Leonarsu Member Posts: 23
    edited August 2014

    high end male strippers like Chippendales.  Usually they are in Vegas.  Should be fun

  • Momine
    Momine Member Posts: 7,859
    edited August 2014

    Strippers sound like an excellent plan ;)

  • Leonarsu
    Leonarsu Member Posts: 23
    edited August 2014

    looks like the strippers may be out.  Saw ortho surgeon, need immediate hip replacement, virtually no pelvis left.  They want to avoid complete fracture.  Feel better as moving forward.  Not impressed with onc.  Did not even mention this last week.  May ask for new doc when operation is over and done with.  Don't have much confidence in present one

  • pajim
    pajim Member Posts: 2,785
    edited August 2014

    Leonarsu, you need to like and have confidence in your oncologist.  This is a long-term relationship.

    So if you don't like your current one, find a new one.  Someone you feel comfortable talking with and who addresses your questions to the limit of the knowledge you want.

    I hope the hip replacement goes swimmingly.  Postpone the strippers for a couple of months.  They'll still be there.

  • Leonarsu
    Leonarsu Member Posts: 23
    edited August 2014

    I find out surgery date tomorrow.  Say what you like about healthcare in Canada but when something has to get done fast, it does.  Really pleased with surgeons.  I will see how my next onc appt goes in October.  If I am not happy I will definitely ask for someone else.  This is a clinic so lots available.  Thanks for the kind thoughts.  The stripper tickets are bought so my friends will have to take pictures.  Also my long time companion and I are getting married October11.  Nothing like a life threatening illness to make you get your butt in gear!

  • bevin
    bevin Member Posts: 1,902
    edited August 2014

    Leonarsu, congratulations on your upcoming wedding!

  • Woodylb
    Woodylb Member Posts: 1,454
    edited August 2014

    Leonarsu, 

    On my second dx with liver mets CTs and bone scan showed multiple bone islands on both hips, femurs and lower spine. However, both scan where inconclusive. Only PET scan refuted the bone mets. So unless they do a biopsy or a PET please don't speculate as it will stress you over may be nothing. Hugs :)

  • Leonarsu
    Leonarsu Member Posts: 23
    edited August 2014

    good news from the ortho surgeon.  May not need surgery after all.  Radiation may be enough.  He also gave me all my other test results.  No cancer showing anywhere but hip.  Good news.  I have spoken to the patient representative re a new oncologist.  Rep agreed what was happening should not be so feel much better about that as well. All in all good news

  • Barb312
    Barb312 Member Posts: 113
    edited October 2014

    Leonarsu:   I am an older lady with bone mets also.  I was dx'd on 1/10/2012.  I am currently on Faslodex every month and Zometa every 3 months.  I am doing well,but I do have some fatigue.  I swim at least 3times a week.  I never had surgery because it was never found in a mammo.  I had a side ache and had a MRI and they found bone mets in rib area.  I only have bone scans once a year.  My markers are always good.  

  • Leonarsu
    Leonarsu Member Posts: 23
    edited October 2014

    glad you are doing well.  I just started Pamindronate once a month and Letrozole.  Still using a crutch because of hip tumour and weak pelvis bones.  I think they will use bone cement to correct.  I feel good too althoughI am tired in the afternoon sometimes but perk up.  Have a terrific new oncologist who I really like.  Looking forward to getting rid of the crutch.  Had original diagnosis in 2011. And lumpectomy and radiation.

  • MOOSAN19
    MOOSAN19 Member Posts: 34
    edited October 2014

    hi leonarsu, I am following your progress because I just found out that I may have mets, probably in my shoulder and maybe in my hip, based on pain I'm feeling, very similar to yours...  

    A few months ago I began having severe shoulder and hip pain.... The shoulder I just assumed was a rotator cuff tear or bursitis, but got an X-ray and it found what looks like either chondrosarcoma (less likely) or mets in the shoulder... I am going for my pet scan tomorrow...

    Good luck to you and everyone here on the site.

  • Leonarsu
    Leonarsu Member Posts: 23
    edited October 2014

    the worst time for you is right now.  I was a wreck waiting for results.  However, I now have a great oncologist, have started treatment of monthly Aredia and Letrozole, have had 5 rads to my hip.  My hip is feeling better but am still waiting for bone to repair or may have bone cement inserted to strengthen.  Oncologist told me he considers what I have a chronic disease so prognosis is good.  Although you are never cured as long as you can control the little bastards life is good.  Good luck and stay in touch

  • rnsparki
    rnsparki Member Posts: 49
    edited October 2014

    I was just diagnosed, via bone biopsy, that I have bone mets after 8 years of being "Cancer free" and on Arimidex. Your posts have been very helpful. Glad I found this forum!

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