Brain Mets at First Diagnosis??

Lindissima
Lindissima Member Posts: 239
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

A very dear colleague  and friend  was diagnosed with a brain tumor three weeks ago, after having  several seizures.

She was then transferred to a top  NCI cancer teaching hospital in our area to consult with a neurosurgeon. She was put on steroids (Keprex) which shrunk the tumor down nicely and restored full cognitive function. She was given a  petscan which  'lit up' in the area of the brain and breast.  My friend  also has a lump in her breast, which she had had for years, but was always told it was a fibroadenoma because it never showed up on a mammogram.  Well, the doctors  at the NCI cancer center did an immediate biopsy and told her the results would be ready  in 5 days.

Now, two weeks later, after repeated phone calls to the original neurosurgeon, she finally got someone  else at the  hospital  to give her the results of the biopsy over the phone : Breast Cancer.  That's all we know.  She wasn't able to  get an appointment with an onco at the  breast care center  there until next week, so we are on pins and needles awaiting an explanation.

My job is to help her formulate questions for the onco visit. Is it possible to have brain mets at first diagnosis?  If so, what are the options for treatment? Does the fact that the pet scan 'lit up' always indicate cancer, or could the brain tumor be B9 and the BC unrelated?

If you have any knowledge or experience with a situation like this, please pass on any suggestions or insights  you  may have.

I don't think my friend is ready to come on these boards herself right now.  And  yes, I also posted for another friend  and colleague recently diagnosed with multifocal BC. At my workplace, we are all just reeling in shock.  In just a few months, three of have been diagnosed. What is going on here?  I am "Racing  for the Cure" this Sunday.  We need a cure and a fast!

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Comments

  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited September 2009

    Lindissima - yes, we do need a cure and bloody fast!!!!!

    What a horrible time for your friend and all those concerned for her.  You are a fantastic friend to be there for her and assist in a really practical way with formulating questions.  I'm sorry I can't give you any suggestions on questions but wanted you to know that we are here and you will get more posts - think it is getting quite late over there though so be patient ... yeah easier said than done, as we know.

    My heartfelt hope things go well and your friend gets a b9 and all clear.

    with hope

    Helena

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  • helena67
    helena67 Member Posts: 357
    edited September 2009

    I can imagine what a shock this is.....I am sorry.

    Regarding your question, I think it could be a brain met but it does not HAVE to be. Maybe others have a better grasp of the issues but I think that for example triple negative breast cancer has a higher tendency to give brain mets. But all types of breast cancers can.

    But, in general, it would seem a bit unusual that she would have only 1 brain met and nothing elsewhere (for example axillary lymph nodes, liver, bones - this is where breast cancer 'likes' go to). It could be possible that she has a benign brain tumor and then also breast cancer...Maybe it is far fetched but I hope this will be the case. Benign tumors usually grow slower than malignant ones - I don't know if they lit up in a PET scan.

    Another Helena.

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited September 2009

    I had a brain metastsis; probably there on initial presentation, because I had no scans pretreatment (my HMO's policies do not permit them if one is not symptomatic). I became symptomatic 9mo after I finished treatment - head rushes I called them, and the worst case of chemo brain the world has ever witnessed. I should have been suspicious - my late sister had a first point of metastasis in her brain after only eight months. An aggressive, Triple Negative, BRCA-1 positive tumor was what we both had.

    So, yes it could be a metastasis especially if she has been aware of her lump for some time. There are numerous treatments: Gamma Knife or Stereotactic Radiation, Whole Brain Radiation (she might want to hold off on that if it's just a single lesion), chemo that crosses the blood/brain barrier, surgical resection and so on.

    About the PET scan: it is possible that it a benign lesion, put PETs measure metabolic uptake by the tumor and it's these that are the brightest.

    Best of luck to your friend. Do not despair!

    Lisa

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  • CapeBretongirl
    CapeBretongirl Member Posts: 364
    edited September 2009

    Dear Lindissima;  This is horrible, all 3 of you, at the same workplace, shocking.  I wish the best, for each one of you.  (((hugs))))   

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  • Lindissima
    Lindissima Member Posts: 239
    edited November 2009

    The two Helena's, Lisa and YMB, you women are all terrific for replying! I have been doing a bit of research on this board too, but it mostly gives a general overview.

    That's interesting about the PET scan not being a definite indicator for cancer, (but a likely one). I may go in and ask my onco for one next visit. She did present with symptoms a few months ago--confusion and inabilty to remember things, but was told those were the SE's of a med she had recently started for another condition.

    This may be a ridiculos question, but I am assuming she still needs to deal with the breast lump in addition to the brain lesion and this would be surgery initially.

    What do you think the next step would be? Breast surgey or a brain biopsy to determine if the brain tumor is evidence of metastisis? Would she go straight to chemo? Her next visit is with an onco at the brest center,

    Yes, it's shocking that there are three of us, all educators....Is it something in that chalk???!!! I just read in the Teacher's Study that we have higher rates of BC than the general population. Something for teachers to be aware of.

    I do appreciate your answers and words of encouragement. Warmest regards.

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  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited September 2009

    Lindisimma,

    As the lump is breast cancer (that is invasive) she will definitely have to have it removed - the problem is the cancer spreading elsewhere, regardless of whether the brain tumor is related, as the other Helena mentioned there is the bones, liver etc it could spread. 

    As for what treatment or surgery goes next.. sorry honey no idea.  As it is a couple of days since your last post hopefully your friend has found out a bit more about her situation and pending treatments/surgeries.

    All the best .. and look after yourself too.

    hugs

    Helena

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  • Lindissima
    Lindissima Member Posts: 239
    edited September 2009

    Helena, 

    Thanks for  your kind reply.

    We are anxiously awaiting her appt next week to get some answers. It does seem to be an unusual situation, though not unheard of.

    On another note. I did Susan B Komen's Race for the Cure today.  it was inspiring to see thousands of people running and walking to raise money to find a cure.  Most were not 'survivors', but supporters, concerned family and friends.

    Take care! 

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