Can I wait this long?

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clarecy
clarecy Member Posts: 31

Hi all,

I'm just dignosed as DCIS, and I'm trying to get referred to Kimberly Van Zee, MD in sloan-kettering. But my appointment has been set on Sep.3 since Dr. Van Zee is out in August.

I just wonder can I wait this long based on my situation now?

Timeline:

Early and mid June: niddle biopsy with ADH results

July.15: surgery biopsy

Juy.22: Got the reports---DCIS, Grade 1, cribriform pattern, at least 0.5cm, margin of 0.9mm, ER+/PR+.

Comments

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited August 2013

    Waiting is hard but in your case I don't think you are doing anything to endanger yourself. When I was first diagnosed with Stage IV, I lived in NYC and my NYU GP referred me to a Sloan-Kettering oncologist. (A different one) Even with my Stage IV diagnosis, they couldn't fit me in for 3 weeks. I was a little bit anxious ;-) but I waited. In the meantime, I got a 2nd and 3rd opinion from NYU oncologists, which I am glad I did. Maybe you could do something similar, consult with other oncologists? I did get to SK a little earlier because there was a cancellation but that won't happen in your case. I am thrilled with Sloan-Kettering and travel there for treatment even though I now live in NC. I wish you the best, peace to keep you calm so you can enjoy every wonderful moment of life.

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    clarecy, particularly since you've had the excisional (surgical) biopsy, you are fine to wait.  With the excisional biopsy, most of the DCIS - maybe even all the DCIS - has already been removed.  I'm assuming that more surgery may be necessary because you have a close margin, but it's not a positive margin (i.e. there aren't DCIS cells right up to the edge).  You also have grade 1 DCIS, which is not aggressive at all.

    Back when I was diagnosed, I had an excisional biopsy for two areas of concern.  Both came back with lots of grade 3 DCIS with comedonecrosis (the most aggressive DCIS there is) and all the margins around both areas were dirty (i.e. there were DCIS cells right up to the edge).  The pathology also uncovered a microinvasion of IDC, which meant that my DCIS was already starting to evolve to become invasive cancer.

    After the excisional biopsy, I decided to get a 2nd opinion on the surgery options (I was hoping to avoid a mastectomy) and that lead to an MRI and another biopsy (of my other breast - that biopsy was benign).  From the MRI it was very clear that I needed the MX, so I had consults with the plastic surgeon and the PS and BS had to coordinate their schedules in order to operate.   All in all, it turned out that I waited 2 1/2 months between my excisional biopsy and my mastectomy surgery.  None of the doctors I dealt with where the slightest bit concerned.  And as it turned out, while my MX uncovered a lot more DCIS, there were no more areas of invasive cancer so there was obviously no progression during that the wait.

    My situation was not unique.  I've been on these boards a long time, and I've seen lots of women wait 2 months or 3 months for their DCIS surgery.  So don't worry.  A few weeks and even a couple of months delay is nothing to be concerned about with DCIS, particularly since you've already had the excisional biopsy and the core of the DCIS has been removed.  And with grade 1 DCIS, most docs would say that a 6 month wait would be fine.

  • SJW1
    SJW1 Member Posts: 244
    edited August 2013

    Clarecy,

    With a relatively small area of DCIS that is grade 1 (the least aggressive type), I don't think you need to rush into anything. I had about the same size DCIS which was low to intermediate grade (grade1/2) and waited for 6 months to have a lumpectomy. That was is 2007 and I am still fine now.

    Because DCIS is non-invasive it does not get into your breast, let alone the rest of your body. So it can't kill you. You have time to weigh your options and get the second opinions you need to make a well informed decision on what is the right treatment for you.

    Best,

    Sandie

  • deb1973
    deb1973 Member Posts: 96
    edited August 2013

    Do you have another doctor you can talk to about this? If you are in the situation Beesie described (clean margins following excisional biopsy), you're probably fine. But if not, you should be asking a doctor this question concerning your individual risk factors. Most women can wait, but we are all different. I was advised, in my case (high grade DCIS, large area, dirty margins, etc.), to go no more than six weeks from time of diagnosis to treatment.

  • ballet12
    ballet12 Member Posts: 981
    edited August 2013

    Hi Clarecy,  I sent you a private message regarding how to address deb's concerns.

    Deb.  MSK reviews records prior to seeing the patient.  If they thought the wait was too long, they would have likely recommended a different surgeon.  At the same time, Clare can call Dr. Van Zee's office to speak with the nurses who will answer this question or get another surgeon to answer the question.  They are very aware of the passage of time when scheduling patients and they do triage both initial appointments and other appointments.  When I needed to schedule the first surgery with them (the initial re-excision), they needed to move the date because it was Columbus weekend.  I gave them a date two weeks later, and they said to me that that was too long to wait.  They wanted to reschedule me for two days before my initial appointment.  In the end the surgeon kindly kept me on her schedule for Friday of Columbus Day Weekend.

  • clarecy
    clarecy Member Posts: 31
    edited August 2013

    Hey deb1973,

    I think with 0.9mm margin it cannot be accepted by any doctor (e.g. my formal surgeon said for him it should be above 5mm). I have no idea if there's still DCIS in my breast, but I think I'm ok to wait for a few weeks.

  • clarecy
    clarecy Member Posts: 31
    edited August 2013

    Hi  TarheelMichelle

    Thanks a lot for encourging me. Hope all goes well with you!

  • clarecy
    clarecy Member Posts: 31
    edited August 2013

    Hey Beesie,

    Thank you for letting me know your story. I will be patient. Hope all goes well with you.

  • clarecy
    clarecy Member Posts: 31
    edited August 2013

    Hey Sandie,

    Thanks a lot!!!

  • ballet12
    ballet12 Member Posts: 981
    edited August 2013

    Hi Clare, the 0.9 mm margin is close, and it will be addressed by surgery, or if in the unlikely event it can't be addressed by surgery near chest wall, then radiation boosts.  They do this all the time. Only three weeks now.  Best of luck to you!

  • deb1973
    deb1973 Member Posts: 96
    edited August 2013

    ballet, Thanks so much for the explanation. That is such a good policy and it is nice that you can share your experience of MSK to make it easier for others to navigate.

    clarecy, I am glad you are in such good hands and wish you all the best for a speedy treatment and recovery.

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