Just wondering...

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americanpinay
americanpinay Member Posts: 338
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

does brain mets show on PET/CT? If not, how is it diagnosed? Thanks.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited November 2009

    I was told that a PET/CT did not show brain mets....it's only eyes to thighs.  I had a brain MRI and that found mine.  I had absolutely zero symptoms, but I do already have lung mets.  I was getting a baseline scan as a requirement to join a clinical trial and there they were.  I don't know if I have read of anyone having brain mets without having mets to another area first?  Are you just worried or having some symptoms that are worrying you?  

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  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited November 2009

    PETS are usually eyes to thighs. I had  an MRI also to check out my brain!!  It was clear, a good baseline.

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  • americanpinay
    americanpinay Member Posts: 338
    edited November 2009

    Lisa and Kimberly,

    Thanks so much for your responses. I had a brain MRI (without contrast, they couldn't do contrast at the time due to something low in the blood count because of chemo) when I was on Taxol due to horrible headaches. It came back clear. Now that I am on Tamoxifen, I have headaches that come and go. I'm just wondering when or IF I should even ask for another brain MRI to rule out mets. Again, thank you so much for taking the time to respond to my question. I wish you both the best. Take care.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited November 2009

    I don't know much about tamoxifen - I wonder if headaches are a SE?  If you are worried, you could ask your oncologist about when and if it would be time to get another scan.  I know they hesitate to give scans unless you are stage IV or you have symptoms because they want to limit your exposure to radiation and contrast solution. 

    This is all very scary stuff for sure....especially brain mets.  That terrifies everyone, but I want you to know that brain mets can be treated.  I have read stories of many BC patients who have successfully treated brain mets and are still around years later and plan to be around for a long time to come :>  

    I started out stage IV, so I don't know how you feel but I can only imagine the stress of the unknown you deal with on a daily basis....I think we all have that in common.  Hang in there!  Best to you!!  lisa

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  • robyn33
    robyn33 Member Posts: 99
    edited November 2009

    I have been reading up on the side effects of Tamoxifen (I take it, too) and have seen many notations from others on the drug who have a side effect of head aches.  It's a bummer that all of our aches and pains cause us so much worry.  Does your head ache come and go?  Does it seem worse or more frequent at any particular time of the day?  I seem to remember seeing that brain mets MAY be characterized by headaches that are persistent, but worse upon waking up in the AM. 

    I hope that you get the answers you need....

     Take care,

    Robyn

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited November 2009

    Anything that messes with your hormones, like tamoxifen, can cause headaches.  I started getting migraines after I went on tamoxifen.

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  • americanpinay
    americanpinay Member Posts: 338
    edited November 2009

    Lisa...thanks...your post is very helpful...I wish you many, many years of NED...

    Robyn and MOTC...thanks...my headaches are very intermittent...probably from stress and worrying...always been a worry wart...add BC diagnosis to that and voila...one messed-up woman...LOL...

    Be well...

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited November 2009

    Looking at your history, it would appear that you had a brain mri this year? Since that was clear, I would take comfort from that. Intermittent headaches are likely to be just that....intermittent headaches! It's hard, but you have to try to learn to rationalise things a little, and accept that you will still get aches and pains which have nothing to do with the cancer-other, perhaps, than being side effects of the drugs.

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  • americanpinay
    americanpinay Member Posts: 338
    edited November 2009

    Thanks, ElaineD. I see you're from Edinburgh originally. One of the places I want to visit soon. I've been to London a couple of times and absolutely loved it. Take care.

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited November 2009

    Pleased to hear you want to visit my hometown. If you do, drop me a pm, and I'll try and guide you re places to visit. Good luck with the tamoxifen-it can be very effective, so try and stick with it.

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  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited November 2009

    Hello American pinnay-May rads  and waiting room-buddy--I so hope your headaches go away and you can write it off as one of those ses from tamoxifen.  I am actually on my way to hunt up some of the ses from the tamoxifen.  seems every script I get there's a new list.  Hugs to you

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  • americanpinay
    americanpinay Member Posts: 338
    edited November 2009

    Thanks, ElaineD. I will make sure to check with you before I go to Edinburgh. Take care.

    Thanks for the well wishes, Jess. Actually, the headaches have subsided. Are you starting Tamox? It really is doable. I had some neck pains two weeks after I started. That resolved after two to three days. I've been taking Tamox for ten weeks now and I'm noticing that I bruise easier. Other than these minor things, no major SE. Hope it continues that way. Take care.

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