'No urgency' says doc - but it's taking sooooo long!

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rleepac
rleepac Member Posts: 755
edited February 2015 in Just Diagnosed


I was diagnosed on 1/8/15 after an excisional biopsy of an abnormal lymph node.  When he got in there he found a 2.1 cm tumor so he took out both the tumor and the node.  The tumor was malignant IDC (ER+/PR+/HER2+) and the node had a micromet.  Unfortunately, he didn't do a SNB before he cut so the new surgeon (I opted to go to a CCC) is very doubtful that she will even be able to identify a sentinel node...grrrr.

Anyway, after being bounced around with the local BS and local PS for a week or 2, I decided to go to a CCC.  I'm very glad I did this but it did cause a bit of a delay.  The new BS wants to take my case to the multidisciplinary tumor board and they don't meet again until 2/9 (because the hospital is moving).  Plus, she wants to wait for BRCA1/BRCA2 results before surgery or chemo (depending on what the tumor board decides).  So...I don't know if I'm doing chemo or surgery first and I won't know until next week.  Either way, no treatment will be started until after the genetic testing gets back and my appt to get those results is on 2/20.  Now we are talking 6 weeks out from dx and thats not even starting treatment.

BS says its not medically urgent because the primary tumor was removed (although the path report showed dirty margins) but why do I feel like this is just taking wayyyyy too long?!?  Please help me calm down about waiting!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2015

    Have you discussed Perjeta?  With a 2.1cm mass and micromet I would want it.  That would allow you to start chemo now, get your genetic testing results, and decide about further surgery later.  FWIW - I also had a node positive greater than 2cm triple positive tumor.  I was diagnosed on Sept. 27 and did not have surgery until Nov. 1, did not start chemo until February of the following year due to the need for additional surgery.

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  • rleepac
    rleepac Member Posts: 755
    edited February 2015

    Hearing your timetable is a little reassuring!

    I think the BS is taking it to the tumor board to decide if chemo should be before (which would probably include Perjeta) or after surgery. Since she's pretty sure she won't be able to get a sentinel node, they kinda want to hit it hard.  At least that's the impression I'm getting.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2015

    rleepac - what kayb said, lol!  I think having an oncology consult is a good use of the time prior to the tumor board and/or genetic testing results.  Also, it is important to remember that some of this decision making is yours - your docs can make recommendations but the choices are still yours.

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited February 2015

    I agree with kayb that there are some actions you can take now. Having had two tumor board presentations I have to say there is a lot of value in going to Tumor Board (I just wish I could be a fly on the wall and hear all the discussion). I suspect that it is anxiety that is pushing you for action, but truely, you do have time.

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  • rleepac
    rleepac Member Posts: 755
    edited February 2015

    Thank you! Your comments are very helpful. The BS, MO, RO, etc are all part of the same team at the CCC which is good because they will all be taking part in my treatment. Since the MO is on the tumor board, I'll wait and see what they all come up with. In the big scheme of things, it's now only 5 days until the tumor board meets. However, if the BS calls me (which she is supposed to do right after tumor board meeting) and says the plan is chemo first, I'll push for an MO appt earlier than 2/20 for sure!

    I was under the impression that the BRCA results would make a difference on the chemo regimen - but I honestly don't know where I got that thought from. I guess it would only make a difference if they decide surgery first and they want to take my ovaries too? I thought there was some comment about certain chemo drugs not being as effective with certain genetic mutations? Now I'm so confused on why we are waiting on the genetic results LoL.

    I'm finding that I'm not a very patient person. My husband says I'm an impulse buyer and I need to take a deep breath and make sure all the experts on the team agree on a plan. He's right...but I still hate waiting!!!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2015

    BRCA has a more direct impact on the surgical decisions. I believe that generally if BRCA positive most surgeons would recommend a bi-lateral mastectomy over a lumpectomy. That was the case for me - my surgeon ordered genetic testing on the day I was diagnosed since at that time I was considered a lumpectomy candidate. I had already had a total hysterectomy/oopherectomy but from what I have seen those who are BRCA + deal with the breast cancer first, and remove ovaries after treatment.

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  • rleepac
    rleepac Member Posts: 755
    edited February 2015

    Gotcha. Thanks! I already opted for BMX but I will wait patiently (yeah right!) until the tumor board meets in a few days...

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  • rleepac
    rleepac Member Posts: 755
    edited February 2015

    ok. Things are moving now! Tumor Board recommended chemo first so they set me up to see MO next Tue (2/17). Then I got a call tonight from MO's office because he wants a PET scan. They can't do it before I see him but will do it the next day.

    Finally...progress!

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