Bone Mets found but never diagnosed with breast cancer

lkbhughes
lkbhughes Member Posts: 4
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis
Bone Mets found but never diagnosed with breast cancer
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  • lkbhughes
    lkbhughes Member Posts: 4
    edited November 2009

    Hi all,

    I just joined this group to start learning about my new situation. I was diagnosed with non Hodgkins lymphoma about 2 years ago and underwent chemo from Oct. 20007- Feb. 2008. I had a good response and was in remission, being followed with 6 month CT scans.  My last scan at the end of Sept. found extensive bone lessions and my Onc felt they were not related to my lymphoma. He ordered a bone scan, which showed many hot spots throughout my skeleton - head, ribs, leg, arms, etc. Nothing had shown up at all on my previous scan although I had had some weird moving pains I had reported to my Onc and to my primary care doctor.
    Anyway I had a bone biopsy done a couple weeks ago with the conclusion being these are mets from breast cancer. Ok, but I've never had breast cancer, so is this a recurrence?

    I saw a breast cancer Onc last week but she can't presribe a treatment plan yet due to not being able to establish the type of breast cancer. The biopsy tissue was not handled correctly in order to stain it to look for the hormones involved. Since they weren't anticipating breast cancer, they used alcohol - not good for looking for breast cancer type. In addition to the bone mets, I have been asking my doctors about multiple small bumps or cysts that started appearing on my neck, face, under my arms, various other places since my chemo ended. I get more of these all the time. The new Doctor agreed with me that these are strange and so she order a PET scan to see just what else may be active in me before going ahead with a new treatment.  She is also going to do a new mammogram and also an ultrasound of a cyst near my ovary which has been showing up on my last two CT scans.

    So how scared should I be now?  I've been quite comfortable with my "chronic" lymphoma diagnoses and really had come to feel that it could be managed quite well with little impact to my life span. (I am 65 now).  But now I have another chronic cancer (bone mets) plus an unknown primary cause and who knows what else is lurking.

    I'm interested in knowing more about Vit. D testing and supplementation.  Would it hurt me to start on a supplement before I get tested for Vit. D?

    In general, I'm feeling well although not quite back to my full strength before the lymphoma. I've had some pains which could have been from the bone problems, but they came and went and I have none at the moment.

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  • Irina
    Irina Member Posts: 987
    edited November 2009

    I' m so sorry. PRAYERS and (((HUGS)))

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited November 2009

    LKB,

    Can this new Oncologist take a biopsy somewhere to determine what kind of breast cancer you have?  Hopefully, she'll work on that too, because that's critical to determining your treatment.  I am so sorry for what you have to go through again.  It's just not fair, but hang in there.  Come here for support, and ask your doctor a lot of questions.  Do you have family/friends supporting you?

    Hugs

    Bobbie

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  • pitanga
    pitanga Member Posts: 596
    edited November 2009

    LKB,

    I´m sorry to hear about the situation you are in. How very strange to be diagnosed with mets from BC without having had BC. 

    In looking for the primary tumor of the BC, have they done an MRI and/or PET/CT scan of your breast? These can be more sensitive than mammograms. When my recurrence was diagnosed, all that came up on my mammo was a cluster of calcifications. But the tumor showed up quite clearly on MRI. Likewise my bone mets dx was not conclusive by MRI alone, but it was confirmed by PET/CT scan.

    Since they screwed up the analysis of the bone biopsy material by using alcohol, I wonder if they are thinking of repeating it? as your onc may already have told you, if it is breast cancer, it is important to know things like if there are estrogen receptors and if the tumor cells are over expressed for HER 2, since there are drugs that can be used against tumors with these specific traits.

    keep us posted.

    Lisa 

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  • hollyann
    hollyann Member Posts: 2,992
    edited November 2009

    It is rare but not uncommon to find mets without the bc first.......I have heard of this happening a couple of times before but I can't remember the specifics.......If you have IBC it would not show up an a mammogram either........IBC is Inflammatory Breast Cancer......Also some cancers show up as sheets and not lumps and can be missed or if you have very dense breasts it doesn't show up very often on mammogram....My IDC was found with an MRI...It didn't show very well on Mammo...Good luck to you and let us know how you are doing.......

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  • lkbhughes
    lkbhughes Member Posts: 4
    edited November 2009

    Hi all,

    Thanks for your responses. I do have friends for support but none have had either of my cancers so I found an really great online support group for non Hodgkins lymphoma which gave me so much information and support. So naturally I looked for a similar group for this new diagnosis.

    My husband of 40+ years is not that much support due to the fact he had a stroke many years ago that left him with a brain injury.  So right now he is worried because he knows if anything happens to me, he can't really live on his own. He is pretty good physically but just can't handle the day to day management of the house, dog, finances etc.

    I do have a PET scan coming up on Wed. this week. My new Onc. wanted to do this to evaluate the many strange bumps and lumps I have on my face, neck and other places. I have pointed these out to my lymphoma doctor and he said they were unusual but hasn't felt they were anything that needed any follow up. He is aware of one small new node in my groin that may be lymphoma but it is growing very slowly and not impacting anything so in lymphoma we just do "watch and wait" and something like this.  However, the PET scan will look for any activity throughout my whole body so we just want to know what's happening before starting a new treatment.

    Then Thurs. this week I'll have a mammo at the cancer center. My last one was a year ago so I was due for one anyway. If either of these tests turns up something suspicious for breast cancer, we can get a biopsy of it right after the mammo.  If not, I may have to have another bone biopsy done to do the proper tests for breast cancer.

    No one has mentioned and MRI yet - I don't like the idea of having so many scans since I know these all add to the chance of more cancer down the road. I'm not sure whether the CT scans show more or less stuff than an MRI. They haven't seen anything suspicious on the CT scans and my last one was the end of Sept.

    I'm sure I'll be back with more questions after my tests this week.

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  • pitanga
    pitanga Member Posts: 596
    edited November 2009

    Lkb,

    The PET should provide information that can help clear up many of the mysteries that have your doctors scratching their heads.

    About radiation from the MRI possibly increasing risk for cancer-- I think that one of the itty bitty luxuries of belonging to this lousy stage 4 club is that I no longer have to sweat the small stuff about what might increase my risk for getting cancer in the future. No piddling radiation from a few scans is going to be able to start a cancer that will move fast enough to catch up to what I´ve already got. Just my opinion.

    Stay strong,

    Lisa 

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  • 33skidoo
    33skidoo Member Posts: 1,029
    edited November 2009

    Radiation isn't a problem with MRI.  It IS a problem with CT or PET/CT.

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  • lkbhughes
    lkbhughes Member Posts: 4
    edited November 2009

    LOL - you probably have a good point there Lisa.  Of course, I haven't yet begun to think of myself as stage IV but I suppose it's true.

    Linda

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