New to this board needing advice

cmhartley
cmhartley Member Posts: 1,091
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Well, here I am...never thought I'd be posting here. :(  I was diagnosed 3/05 with ER+ PR- HER2- IDC stage IIb 3cm with 3/11 nodes positive.  I went through neoadjuvent chemo, mastectomy (left), radiation and reconstruction.  All has been fine until today. 

 Last Wed I had my 6mo exam with my oncologist and mentioned that I had severe pain in my right shoulder blade that was unrelenting for 1 week but had gone away.  Telling me it was most likely a pinched nerve she went ahead and scheduled a PET scan and MRI.....thank goodness now in retrospect.  I had my PET scan on Tue and the MRI was scheduled for next week.  Well, a few days ago I started having pain again in the same area around the shoulder blade.  It was so bad I couldn't sleep last night without tramadol, 800mg ibuprofen and 1000 mg Robaxin. 

Today, my oncologist called to inform me that there were several abnormalities on the PET scan (hips, shoulder and lumbar spine).  She couldn't give me all the details as she was out of the office.  I meet with her tomorrow.

 So, I have lots of questions.  Has anyone ever had false positives for bone mets on a PET scan...in other words....just areas of arthritis or inflammation show up?   My oncologist mentioned radiation...how long and does this work for the pain?  What types of treatments are being used for bone mets?  I know this is a lot to ask but any help and support is really needed right now.  I'm pretty overwhelmed, surprised and quite literally my head is spinning.  I realize I have to go one step at a time but ofcourse it is hard not to be concerned.

 Thank you so much to anyone who takes the time to read this and help me out.

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  • RetrieverMomNancy
    RetrieverMomNancy Member Posts: 84
    edited October 2009

    cmhartley,

    So sorry you have to go through all of this. The scary part is waiting for the test results and coming up with a plan of action. I haven't heard of false positives with PET scans, but others who have will come along. My onc told me once that bone met pain typically doesn't come and go. My bone mets were found by my 6 month post treatment follow up PET. (Arimedex didn't work for me) I didn't have any bone pain and was shocked by the dx. I did taxol (chemo) for 6 months and started right away on monthly Zometa infusions, bi-weekly infusions of Avastin.

    From what others have said radiation works wonders for eliminating the pain from bone mets. I don't know how many tx people usually get.

    Good luck to you. Start writing down questions you want to ask your onc. When do you meet?

    Nancy

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  • 2ndtimearound
    2ndtimearound Member Posts: 15
    edited October 2009

    Bone mets does not have to be painful.  My back pain started to dissipate so I cancelled my appt. for an MRI.  Then I decided to have the MRI and discovered after a bone biopsy I had bone mets to spine, pelvic and ribs and possibly to my lung.  I go next week for followup CT's.  I have been on Femara 2.5mg. daily since Aug and also monthly injections of Zometa.  The Zometa seems to have calmed the back pain I was experieinceing when I did any lifting but now I have pain when I bend over.  I also have osteporosis in the same area as the cancer.  I never had radiation or chemo - but some say radiation weakens the bone structure and you can end up with fractures.  My previous MRI from 1-1/2 yrs ago stated I had osteoporosis; they missed the bone fracture that apparently had shown up on the MRI but wasn't discovered until I had the MRI reread at the clinic I am going to now.  Are they going to do a bone biopsy first to determine if in fact it is cancer and also what type? 

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  • cmhartley
    cmhartley Member Posts: 1,091
    edited October 2009

    Thank you so much for your responses.  I met with my onc today to discuss my PET scan and plan.  The PET scan showed overwhelming evidence of extensive bone metastasis to pretty much everywhere but as the report stated the proximal humeri and sternum with a few rib lesions noted.  So, our plan is to try hormonal therapy, zometa and then radiation for the pain once we find what and where the origin is.  I have my first round of MRIs on Sunday so I'll know more next week.  She put me on hydrocodone which is helping.  I think once the pain goes away I'll feel more positive.  I think I'll also cross post to stage IV board also.

     Thank you both!

    Cat

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