Anyone tested for basal cell?

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  • tibet
    tibet Member Posts: 545
    edited June 2009

    hi Sue

    Why you say your testing was not expected result for basal tumor?  

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited June 2009

    Sue:  It is so comforting to me to read about someone who is triple negative with a basal tumor, 3 years out and NED!  It gives me some hope that I could someday reach NED too.  Thank you,  Linda

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    Boo,

    Great news that you are three years out! What was your treatment?

    Flalady

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  • Boo46
    Boo46 Member Posts: 539
    edited July 2009

    Hi all,

    Alex - the Brca 1 result was what was un expected. My onc did expect the basal result because my tumor grew so fast. In April was measured at .7 on ultrasound no palpable or suspicious nodes on US. By May was 1.7 with palpably enlarged nodes.

    Linda - Hang in there Linda. They will find a cure for us. Sending hugs you way.

    Florida Lady - So hope you are feeling better. I've followed your fight since I've been a member of these boards. You are truely an inspiration. I had pretty standard treatment. Mastectomy with axillary clearance, DD A/C X4, then Taxotere X4. then 25 rads. What part of Florida are you in? I'm in Tampa.

    Love all - Have to leave for work.

    Sue

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    Boo,

    I'm just east of Tampa.  If we don't get wash away today.

    Flalady

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  • Boo46
    Boo46 Member Posts: 539
    edited July 2009

    I may just get washed away! Never made it to work. My street has about 3 feet of water. Someone just kayaked past my house. Haven't flooded this bad since hurricane Francis.

    Sue

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  • Lifestooshort
    Lifestooshort Member Posts: 159
    edited July 2009

    Hi,

    I don't post much, but of course since I have a follow up PET on Monday the scanxiety is setting in.

    Boo46 - we were dx'd on the same day, pretty much same dx.  May you continue to do well!

    FlaLady -  It gets so gol' darn frustrating waiting for the right combo to come along.  Prayers that you are feeling well today.

    NanaLinda - I didn't see whether or not it was your salivary gland swollen?  I had salivary gland cancer in 1987, then BC in 2006.  They say it's not related, but I'm not totally convinced of that.  I did Gemzar for part of my first bc treatment and never had the mouth sores so I don't have any words of wisdom for you. Hope it gets better soon!

     Best wishes to all of you!

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited July 2009

    Lifestooshort:  According to my scan the nodes around my trachea are now involved.  Flalady had mentioned that she had an infected salivary gland at one time that they thought at first might be cancer.  I was hoping that would be the same for me.  I won't know until my next scan.  Thank you for your comment regarding the mouth sore.  I am hoping it is just a coincidence that it happened after the first dose.  I hope I don't get any more.  I found that ambesol has helped to numb the area some.  Good luck on your upcoming scan.

    Boo:  Thank you for the encouragement and the hugs.  Hope you and Flalady find relief from the rain soon.

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  • Boo46
    Boo46 Member Posts: 539
    edited July 2009

    Laurie - Fellow 6/6/6 sister did that date really bother you like it did me? Now I'm not much into superstition and I'm surely no holy roller but learning my Dx on that date just gave me the creeps!

    On a more serious note - were you stage IV at diagnosis? If not when did your recurrance recure?

    Linda - I had horrible mouth sores with taxotere - biotene rinse helped a lot.

    Sue

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  • Lifestooshort
    Lifestooshort Member Posts: 159
    edited July 2009

    Sue - at first that creeped me out but then, well, I knew it'd be an easy date to remember.  I found my lump on "Memorial Day" and received the actual results with dx on 6.6.06.

    I was IIa maybe III at dx.  Finished treatment 1/3/07 and went in for lymphedema in 6/08 when my pcp ordered a CT scan and a lung nodule showed up.  It was slowly getting larger and had it removed in 12/08 and it turned out to be the same triple negative BC.  Have a follow up scan next week. 

    Linda - good luck with your treatment!  Praying that you see good results and soon!

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited July 2009

    The cancer center obtained the blood needed for the brca testing this past Thursday.  I asked how long it would take for results and they were not sure as "they don't do these tests very often", (small town center).  How long did it take for any of you who have been tested?  Thanks, Linda

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  • tos
    tos Member Posts: 376
    edited July 2009

    The Blood samples are sent to Myriad Labs.  Mine took about two weeks.

    Brca 1+

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited July 2009

    Thank you tos.

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  • saffy
    saffy Member Posts: 6
    edited July 2009

    In my original pathology report it said that the tumours were basal.  I am brca1+  and triple neg.

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  • saffy
    saffy Member Posts: 6
    edited August 2009

    just seeing if my signature comes up , [trying to get forum literate!!!]

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited August 2009

    I finally got the results of brca testing.  I am negative for 1 and 2.  So, although I have a basal tumor, I am brca negative.  From the posts above, that seems to be the norm for those who have posted on this thread.... interesting.  Good news for me though.  Linda

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  • Luah
    Luah Member Posts: 1,541
    edited November 2009

    My path report did not show whether I was basal or not, but I am interested in knowing in case it does have significance for chemo regimen.  Recent study here comparing FEC (used in Canada, like AC) and older CMF.  Obviously the A has had good results for many ladies here, and this is a relatively small study, but I am just wondering if anyone's onco has brought up this or other studies?? http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=35150

    Then again, this study favors use of anthracyclines. http://www.cancernetwork.com/display/article/10165/1340727?pageNumber=1

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  • thenewme
    thenewme Member Posts: 1,611
    edited November 2009

    I did ask about my tumor being basal or not, and my onc looked at me like I had three heads!  She couldn't imagine why I wanted to know.  I nearly broke down trying to make her understand that I want to know absolutely everything about my cancer in case it might someday help with the prevention, treatment, or cure for my children.  I'm BRCA negative, but who knows what they'll discover later, and in case my children are ever diagnosed with this beast, my pathology may turn out to provide a clue.

    <sigh...> She didn't really get it, and she said they don't test for basal properties and if I really wanted to, she *may* be able to do it, but it's very expensive and insurance definitely wouldn't cover it so I didn't push the issue.  I'm still considering trying to push it, though.  It's something that's been bugging me.  

    Anybody else being tested for this?

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  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2009

    Luah:  My onc told me that even if I had the testing and it showed it was a basal type, my treatment would not change.  I had 4 DD Adriamycin and 1 DD Taxol (caused bad neuropathy immediately) and was switched to remaining 3 DD Taxotere.  She claims that would be the exact same treatment for basal as well.

    Thenewme:  Several triple negs I know on the TNBC site had their cancer tested for basal properties (and they didn't even ask for it), so I think a lot depends on the pathology dept that is doing it.  I am not so sure insurance won't pay for it.  If you really want it - pursue it.

    Linda

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  • thenewme
    thenewme Member Posts: 1,611
    edited November 2009

    Hmmm.  I think I will pursue it when I go back for followup.  It's so easy sometimes to just accept what our doctors tell us, especially when we're really in the midst of everything.  With TN being the latest buzzword and all the research they're doing, it seems that the researchers would want all the data they could get, to look for trends and patterns.  Does anyone know if there's a standard time period that our tumor tissue samples are stored? Or does that depend on the specific place?

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  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2009

    I believe the tumor is stored for 10 years.  I chose not to have mine tested, as I felt I would be better off mentally being able to think that the Adriamycin and Taxotere I had will kill my tumor.  If my tumor is basal - and knowing that the basal tumor is not always killed by the chemo, I think my worrying would be even more excessive than it already is.  Good luck to you and if it's tested, I hope it's not basal.

    Linda

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  • Ricki13
    Ricki13 Member Posts: 80
    edited November 2009

    Hello ladies

    My tumour was basal and this was tested as part of the pathology after my initial lumpectomy.  I tested negative for BRACA 1 and 2.  I'm in Australia and this was all done under our national health system (even though I do have private health insurance also).

    I've 'finished' treatment...not sure what to do next but I see the oncologist every 6 weeks.  I had to have a re-excision after my first surgery.  I had 3 x FEC, 3 x Taxotere and then 36 rads.  Is there anything else I should be doing?

    Thought this might be interesting too...after 9 months without a period and my hormone levels showing 'menopausal' 6 weeks ago, I got my period this week (was 40 in September).  Dr said this might be an aberration or my ovaries might have switched back on...will wait and see!

    Thanks and best wishes to all, R

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Clarification please-

    When you talk about basal tumors and chemo resistance are you discussing this in a neoadjuvent setting? 

    Otherwise, if the tumor is out (and in the absence of metastisis) how would one determine chemo-resistance?

    Or, are you just concerned that the tumor type would leave risidual cells that would be more likely chemo-resistant?

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2009

    hhfheidi:

    I personally was speaking of adjuvent therapy, in my personal case.  But please note that many basal type tumors respond great to chemo.  In all the reading I have done on the research papers and abstracts out there regarding the different types of triple neg ((most triple neg tumors are either basal or of the "basal type" ( whatever the heck that means)), not all triple neg tumors are basal.  What it really boils down to from my point of view from reading and reading and reading all the latest findings, is that even if your tumor is basal, chemo is your only way to go, and it does work - there are some basal tumors, although extremely aggressive, just don't respond and they can't tell us why.  That is basically why I chose to not push any further with my onc. as she did not suggest the further testing to see if it was basal, as the treatments would all be the same anyway.  After rethinking it all, I just decided, knowing myself as I do, that I would be better off going through this not knowing, so I wouldn't have another reason to be more of a worry-wart than I already am.

    I have just finished my last, of 33, rads Tuesday evening, so I am done.  I know I gave it all my best shot, used the biggest guns I could, suffered dearly through it all, and am now supposed to be in my new "norm".  Ha!  What a joke that is, I am depressed and scared BUT working on not thinking about all of this 24/7.  It is what it is, I had a good prognosis, it was caught relatively early, and as my onc said, live each day, as none of know how long we have, and don't let the cancer take over your life.  I am trying, hopefully I will get there in time.  All the best to you.

    Linda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Linda,

    You and I sound like we are on the same page wrt how we are approaching and dealing with this. My onc feels the same way yours does also.

    I could have written your post! Guess we will both be keeping our fingers crossed for the next few years.

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  • Luah
    Luah Member Posts: 1,541
    edited December 2009

    Linda, congratulations on being done!!  I can certainly understand your anxiety - I'm sure the fear never really disappears, but here's hoping you find ways to push it to the back of your mind.  Live well! 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2009

    Looks that way, Heidi - it's good to know I have someone that truly understands where I am coming from; and 

    Luah:  Thanks for the congrats, while I am nervous having nothing now, it must admit I don't miss the trips up to rads every night after work!  I don't think any of us, no matter what our diagnose is/was is ever without fear, just hope I can learn to live more comfortably with it.  All the best, Luah, are you where are you in your treatment right now.  Hang in there, you will be at the finish line as well soon!

    Linda

      

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  • Karen3
    Karen3 Member Posts: 307
    edited December 2009

    Hi LRM216

    I was told when I was diagnosed that the cancer was Basal Triple Negative. I am also being tested for the faulty BRCA gene and expecting the results back within the next week or so. Not a good combination I know!

     Karen XX.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2009

    Karen -

    Hang in there - I hope the test comes back negative, but as I said in my earlier post, there are many triple neg - BRCA positive that are going along well.  We just have to believe.  I just hate it that we are sent in to fight this beast with both our hands tied behind our back.  I couldn't get BRCA testing as I was 62 and no other cancers at all on either side of my families.  I am the first to start it, but I do have two daughters that I hope are never cursed by this disease.  Good luck and keep us posted.

    Linda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    I am curious to know what bio-markers were used/present in your pathology to determine true basal phenotype, rather than "basal-like" (which most TNBC are) in those of you who had/have basal tumors.

    I know high expression of p53 and Ki-67 are indicative of aggressive cancers, but they are not mentioned as being the determinants of true basal tumors; they are merely typical of TNBC.

     This is a snippet from articles I have read identifying basal markers:

    "expression of 'basal markers' (that is, Ck 5/6, Ck 14, Ck 17, and/or EGFR)"

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