Angry and Anxious.....need support and advice

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lsugirl
lsugirl Member Posts: 49
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

My MRI results from last Thursday showed enlarged internal mammary lymph nodes with the largest being 6 mm. I had a BMX almost 4 years ago with no invasion at the time and refused tamoxifen b/c of risk for uterine cancer. So here I am again in an anxious waiting period on next steps and conferring with my "team".



Radiologist's report said "several new enlarged internal mammary lymph nodes with largest being 6 mm. Differential diagnosis - metastatic disease and inflammation or infectious process. BIRADS category 4"



My BS says nothing to worry about and do a follow up MRI in 4 mos....I asked why wait and her response was "you had JUST DCIS". Of course I'm not happy with that answer so I faxed results to MO and he requested same day for a CD of the films to review better. Today I got a call from his nurse saying he feels "there is something and its small so wants to schedule a PET scan." I told her I don't mean to be rude but I'd like to go straight to biopsy. If PET scan does show anything (I was told it won't pick up that small of area anyway) wouldn't we do biopsy next? So why endure the test if we can cut to the chase and see if its truly anything.



Am I crazy for wanting a biopsy first? Has anyone had this situation? I'm so tired of being told it was "just DCIS"....well my original area was 2.5 cm x 3.1 cm and measured 7 cm behind my nipple. That worries me how close to the chest wall and with my still producing estrogen is that a concern?



Sorry for the ranting....I'm just anxious to get answers and know what battle I'm dealing with. I don't mind or worry about treatments but I need to know what the hell it is! Thank you all for any advice and suggestions....mostly for support in just being here. God bless us all!



Kim

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited June 2013

    I don't know if that is a hard place to biopsy, but with that small of size, getting a biopsy may not be accurate. What if they do a biopsy and it comes back negative, would you be worried that they got the right spot ? If the biopsy came back positive, the next step would be to have a pet scan, to see if the cancer spread anywhere else.



    I would rather have a pet scan first, to see what you are dealing with. They can look at the suv number of a tumor and give you a pretty good idea if it is cancer or not. If nothing shows up, then I would be pushing for a biopsy.



    Since it is full body, you will also get some peace of mind if nothing shows up anywhere else.





    Laurie

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  • lsugirl
    lsugirl Member Posts: 49
    edited June 2013

    Laurie - thank you your response, especially given your staging - I really appreciate it.  I'm concerned regardless b/c I wasn't planning on something like this - I thought that if I was going to get cancer again it would be uterine - not great but not lymphatic either right?  I guess I'm frustrated about being confused on what I'm hearing by the doctors.  My BS last week said a PET scan would not have picked this up b/c it's too small (6 mm) so why the PET/CT scan?  Is it to be sure that it's not more active than the MRI shows and/or are they going to do a full body while I'm in there?  I don't know what the SUV number means - I've never got this far as I had "just DCIS".  Will you let me know what that means?  Also - my oncologist did the CA 27.29 blood test on me (first time I've had that done in this journey) and it came back 25 "normal" - well since I've never had this done before - what is "normal" and what are they looking for?  Thankfully this new onco will be seeing me regularly so I'm happy about that.  :)

    Thanks again Laurie for your reply - it's great to know that we're not alone and someone hears me.  Have a great day and more to come I'm sure.  :)

    Kim

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited June 2013

    A pet is always full body, so it will show if cancer is anywhere else. The suv is how active a lesion is. The cancer cells eat up the glucose that you are given at a higher rate, so the higher the number, the greater chance it is cancer.



    The ca 27.29 is a tumor marker that can sometimes, if elevated, show that the cancer is progressing. The problem is it is not reliable for everyone. Someone can have widespread mets and still have a normal reading. In my case, the number is reliable for me, so we use it to monitor how I am doing. It is good that yours is normal. Again, it doesn't guarantee that your cancer hasn't spread, but it is better than having an elevated number.



    Laurie

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  • lsugirl
    lsugirl Member Posts: 49
    edited June 2013

    Thanks again....so I guess I should do the scan first to see what it shows but if the area that is on the MRI isn't showing up then how long would you recommend waiting for follow up?  I don't want to sit idle and wait for whatever this is to grow - my best friend died last november from her 3rd time with BC and she drank the kool-aid that the doctor gave her (awful guidance) so I'd rather be overly cautious, almost obsessive than sit and wait.  Am I crazy??  I feel that way - I'm frustrated that I am having to do the pushing and leg work.  Whew!  Sorry - venting is good!

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  • BikerLee
    BikerLee Member Posts: 355
    edited June 2013

    I can understand why you'd want to go right to the biopsy - I'm not a fan of getting x-rayed unless it's really necessary.  PET usually goes with CT.... But, making sure the right tissue is biopsied can also be a struggle.

    SO - you are NOT crazy... but you definitely have unanswered questions! Before making a decision, I think they should sit down with you to discuss possible steps.

    So sorry you are dealing with this....

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited June 2013

    I think you should have the scan first, then go from there. If it doesn't show up, I would ask if it is feasible to do a biopsy. If they say it can't be biopsied, I think it is reasonable to wait 3 months then scan again.



    I know the thought of waiting is hard but sometimes things are so small that there aren't any other options to find out for sure what it is.



    Laurie

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  • lsugirl
    lsugirl Member Posts: 49
    edited June 2013

    Thanks ladies for your responses - they are really a big help.  Its really a scary place to be when you're waiting for something literally "life threatening" and feel alone so having you all to reach out to makes it less scary.  I just want to hear from the doc's office whether he's gone for vacation or he will call me later after he sees his patients.  SOMETHING right?  I guess waiting 3 months won't hurt - if it's something it shouldn't grow or spread that fast.  Damn - I hate ASSUMING and definitely hate finding solace in Dr. Google.  :) 

    Laurie - your signature shows Stage IV - may I ask if you had something prior like DCIS or IDC early stage and it came back?  Sorry - just curious and like to have as much info about this awful disease as possible!  It seems it's everywhere these days. 

    Take care ladies - talk soon!

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  • bevin
    bevin Member Posts: 1,902
    edited June 2013

    I'd get the pet scan, it will tell if there are other issues worrisome in addition to the mammary nodes and that way any biopsy could be done on other potential areas too. I'm hoping it is nothing and saying a prayer for you. I honestly think your Doctors advice on the Pet first is spot on.  Good luck, please keep us posted.

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited June 2013

    Hi Kim,

    I was diagnosed stage 2 in 2005, then diagnosed with liver mets in 2010.



    Laurie

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  • lsugirl
    lsugirl Member Posts: 49
    edited June 2013

    Thank you....I hope you are doing ok and stable. Please know I am lifting you up and thankful for your concern for me.



    I did hear from my oncologist tonight and he said he consulted with some other doctors and feels a PET scan should be scheduled and his nurse was going to call me tomorrow to set it up next week so he'll have the results when he gets back next Friday. He's not sure what it is but said that aggressive cancers will respond and show up as small as 6mm but if nothing shows up then feels comfortable waiting and watching with another MRI in 3-4 mos. What I appreciated was that he called late, conferred with other doctors and agreed with me that being vigilant is a good thing and not crazy. Praise God!



    Thank you again and update you when I know more. Take care!

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  • HLB
    HLB Member Posts: 1,760
    edited June 2013

    I understand how frustrating this is. It does seem that the right steps are being taken. Try not to worry too much. The ca27-29 is possibly a good sign but hard to know that since its the first one you had. Mine wre in the high 20's for 8 years, went to 77 and mets were found. I'm really glad my onc did the test for all those years because it was caught quickly before symtoms and now they are back down to normal. Its devastating but even if it is something, there's lot to do and lots of life to live! I'm planning on at least 30 years :-). Hope this is just a false alarm!

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