Alk Phos, Spot on my hip and bone mets question.

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flyingkites
flyingkites Member Posts: 15
edited September 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello, I was diagnosed with breast cancer on my right side...just barely stage 3a in 2015. Recently I was having pain on my right hip so being the paranoid BC survivor that I am, I consulted with my Onc. He was too busy to get me in, so I visited with his PA. As an aside the last time I visited with my Dr's PA (not sure if it is the same person) I was having a problem with my right arm, thinking it might be lymphedema. The PA examined my arm and then listened to my lungs. After listening to my lungs he asked me when was the last time I had a CT scan of my lungs and if I would be opposed to having one. I asked him if he heard anything and he replied no and kind of brushed off the question and never pursued it further. The next day the PA called me after consulting with my regular Onc and said "Yesterday when I suggested that you have a CT scan of your lungs, what I meant was an MRI of your arm." WHAT?!? OK...so that is some background on why I might not feel a great amount of confidence in the PA.

So back to recently. The PA suggested that I get an abdominal CT scan to see what may be causing my back and hip pain on the RT side. PA calls me on a Friday afternoon to tell me the result...CT scan shows 2 cm lesion on LEFT hip, and no other issues. Also he tells me that my Alk Phos is at 140 which is high and a possible indicator of bone mets in the absence of Liver, etc problems. He said that my Alk Phos was 109 the time before and 139 the time before that. (I have no frame of reference on an Alk Phos test) I ask him questions about what it might be other than metastasis, and he really gives me little or no hope or ideas of anything. So I spend the long weekend, which I was out of town visiting family, worried about having cancer again.

On Monday, I called my regular Onc and asked him for more information. He told me that the lesion looks like what is called a "bone island", that it is probably that, but we need to do a bone scan to be sure. **Whew** relief! Thank you Dr for at least giving me some hope.

So I go in for a bone scan and the PA calls me again to tell me that the bone scan lights up on that spot so we need to do a biopsy. I am scheduled to do a biopsy in 2 weeks, but I really am worried about it. From what I have read and watched on Youtube, it is a very painful procedure. Like chipping a bone. I have heard that people are quite sore for some time afterward. To tell you the truth, I would really rather not!

I don't trust the PA very much, and have put a call into my regular Dr to call me back. Hopefully he will. What I am wondering is

1.) If I had a 2 cm cancerous bone lesion on my hip wouldn't I have a much higher Alk Phos result? From what I have gathered online, 140 is just at the top end of normal. Some labs say 120, some say as high as 147 is normal. I asked a non-cancer Dr and he indicated that even a 2cm lesion would probably produce higher Alk Phos results. Does anyone know an answer to this?

2.) I feel no pain on my left side, in fact the pain on my right side is much better than it was. Wouldn't a 2 cm lesion be painful?

3.) I have read that some bone islands do, in fact, light up,but not usually. The radiologist that read my scan said "bone mets cannot be ruled out" I am just wondering has anyone on this site had experience with a bone lesion that has lit up on a bone scan that didn't turn out to be mets?

I would sure appreciate anyone sharing experience and advice while I wait and worry. Thanks!




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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2019

    As for question #1 - I had a number of bone mets at diagnosis and my alk phos was normal, and has never gone out of the normal range.

    #2 I had no pain before or during treatment but my mets initially were all just mm in size. Most recently, I had a spine met over 1cm (1.4 cm I think) still no pain.

    All I know about #3 is from google, when I was hoping my initial PET results were wrong - and google does say bone islands can light up on scans. No other experience to offer on that, sorry.

    I had a biopsy on my spine (and an attempt to get a sample from my hip which did not work). I felt nothing, I had anesthesia, that "twilight sleep" kind where you aren't actually knocked out but still not really conscious. Afterward was a little sore, not terrible. Really, the biopsy is the only way to be 100% sure. My MO wanted the biopsy even though my mets really did seem to be mets.


    I hope for you it IS a bone island and not a met. Good luck!


    EDIT - I just went to my patient portal to check my Alk Phos results over time. Now, interestingly, I do see a pattern, but still, I was never out of normal range. Before treatment, I had a 70 Unit/L alk phos with 136 being the high limit of normal. Then, as I started treatment, it went into the 60s then the 50s and then as I became NED it started measuring in the 40s and stayed there.

    So, it WAS higher when my mets were active, but not out of normal. Nothing that would have alarmed a doctor examining my results, I suppose.

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  • wallycat
    wallycat Member Posts: 3,227
    edited September 2019

    I can only speak to my recent experience with DH. He has metastatic prostate cancer and it is everywhere in his bones. His alk phos was over 700 and climbed as high as 1800. He's had absolutely no pain (thankfully) but did have a bad pain in his lower leg (which radiologist said is not cancer related), which brought him to an ortho, which found the metastatic finding incidentally. Grateful for the radiologist that looked at his scans because ortho thought it was Paget's bone disease initially (which would have been preferable but at least now, he's getting treatment).

    I wish you well and hope it is b-9. Post back to let us know.


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  • Jsniffs
    Jsniffs Member Posts: 65
    edited September 2019

    Flyingkites - So sorry you are dealing with this situation. The not knowing and lack of trust is really difficult!

    Your situation sounds somewhat similar to mine, although no situation is ever exactly the same. My alk phos was in the 140s for a while, and I had no pain. I kept delaying additional scans because I thought it was nothing. When I had a bone scan light up in a single spot, it was in the same spot as a previously identified benign schmorls node, so again, I thought I was in the clear. However, a CT was highly suggestive of mets, and a biopsy confirmed it. My met was 2.5 cm.

    I hope that you have a different outcome, but if it ends up being mets, you can treat it appropriately. I started Letrozole, and my alk phos is is now down in the 70s. My met is showing up as healed on CT, and I will be getting rad treatment soon to obliterate the rest.

    I will think lots of "bone island" thoughts so that maybe that is all you have. :) Lots of positive thoughts your way.

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  • Alicethecat2
    Alicethecat2 Member Posts: 105
    edited September 2019

    Hello Flying Kites

    My situation was not quite exactly the same but in case this helps you while you wait...Many years ago a bone scan lit up what looked like a met on my right T4 - thoracic bone number four. Turned out I'd inadvertently hurt myself - banged into something - but didn't realise. Six months later, I went for another bone scan and it had healed. Natural bone repair. Nothing lit up on scan.

    As the wonderful Chrissy B says on her thread, sometimes it's not always cancer. I am hoping for the same for you with your one island - or bone spur. I have one of those in my left hand. Not remotely cancerous.

    Good luck. I'm keeping everything crossed for you.


    Alice

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited September 2019

    That is a very small spot. If you don't mind the suggestion, consider talking with your MO or the interventional radiologist who will do the biopsy. It's a tiny target to start with, how certain are they about reaching it. Bone biopsies are known to be difficult in the analysis stage, if they even get enough to sample. Might an MRI of the hip bea better way to go forward? If it's bone island, how would they treat it versus learning it's an active met site? Or rescan in 3 months to see if it's grown? My favorite question to ask is how will the results of the test inform their treatment recommendations. I’ve been surprised by the answer to that question more than once

    My bone met was in the acetabulum and they attempted a CT guided biopsy. In the end, they weren't able to get enough usable sample so all of that was for not. The results came back that they couldn't confirm Mets but looking at the MRI that they'd done believed it to be MBC.



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  • jensgotthis
    jensgotthis Member Posts: 937
    edited September 2019

    One other thought, what about SBRT to that spot. It can help with the healing of the bone and it would zap the cancer. What treatment are you in now? Was the spot there before trafment

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2019

    I had a bone biopsy on my upper femur. Although I was awake, I had lots of good drugs on board. I didn’t feel a thing. Wishing you the best

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2019

    I definitely would want to know what I was dealing with and would want a biopsy. Hoping it comes back benign. If you are on Tamoxifen, it can raise Alk Phos in some people.

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  • flyingkites
    flyingkites Member Posts: 15
    edited September 2019

    Thank you all for sharing your experiences and encouraging words. Funny thing for me, not having enough information causes more anxiety than the fear of mets itself. You have given me confidence at least to know that I need to have the biopsy done to be sure. The Onc. says the spot is on my left iliac crest, so hopefully will be easier to get to. He also says the sooner the better as waiting gives it a chance to spread if it is cancer. If we catch it when it is small and single we can just zap it and maybe that will be the end of it. I'm still holding out for a bone island, or perhaps I slammed my hip into something (I do that sometimes) and it is healing. I am grateful for you people, willing to be supportive, and pray for blessings on you all as you continue your fight.


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