Waiting to meet with oncologist after BMX

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shannonW
shannonW Member Posts: 186
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

After a mammogram, us, and biopsy I was dx with DCIS right  breast(caught very early but extensive extending from my chest wall to nipple) 2/8/11. I met with the general and plastic surgeons and had BMX w/ TE's on 2/25/11(the left was elective b/c I'm a worrier). I'm meeting with the oncologist for the first time on 3/8/11 to go over all results. For some reason I'm really nervous. The SNB looked ok during surgery so no other nodes were removed. The radiologist said it was a intermediate grade DCIS Stade 0 cancer. But I've not been told any other info as of yet re: grade #,receptive type, etc. Is this normal NOT to know any of this info yet? Or will I get it all when I see the oncologist post surgery? I just wonder how many DCIS patients were later told it was more than DCIS after meeting with the oncologist and getting all the results?

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  • horse-n-around
    horse-n-around Member Posts: 79
    edited March 2011

    Hi Shannon,  I had to ask  to get all the information and get a copy of the pathology report to really understand it.  It seems as most DR try to "dumb it down" to the point they really don't tell  you much of anything except the bare bones minimum.  

      The thing is, unless someone does a bunch of research (like most ladies here on the forum) you really wouldn't know what all the mumble jumble would be if they told you).  Laughing

    The big thing is, don't be afraid to ask for specifics! 

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

    shannon- I know how nerve wracking it is waiting for that pathology report.  You and I had similar scenarios- DCIS right breast, BMX and TE's but mine was a year ago.  It is possible that even with the mammograms, US and MRI's they can still find more cancer but the majority of the time it is just additional DCIS that was too small to detect.  That's what happened in my case.  I had been given a choice of lumpectomy or MX.  Something told me to go with the MX.  BS said I had made the right choice since they found multiple areas of DCIS never detected.  (Actually, she said my right breast had been "busy" like it had an active social life or something!)  Anyway, had I gone with the lumpectomy I would have been right back in again for a MX before too long.  I know it sounds crazy, but I was kind of glad they found more because then I could stop second guessing my decision.  Good luck with your appointment. 

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  • Jelson
    Jelson Member Posts: 1,535
    edited March 2011

    shannonW -

    I had the luxury of living within walking distance of the hospital where I had my lumpectomy. If my BS hadn't sent me the pathology results as I had requested, I could have strolled up the block and gotten them myself. Can you get them before your appt with the oncologist? then, as JBin OK advises, you could educate yourself prior to your appt. and have questions ready. If not, realize that you are going to get a lot of impt (and probably very optimistic) information at this appt. and you might not be able to absorb it all - and you won't have to. Explain to the doctor that it is a lot to take in and ask about the office procedure for making another appt or calling with additional questions. 

    I don't think you know less than others at this point. 

    Take care

    Julie E

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  • rc778
    rc778 Member Posts: 56
    edited March 2011

    Hi Shannon...Same situation here.  DCIS dx this past Nov with a BMX with TE's in Dec.  Got my pathology from my breast surgeon 10 days later.  Get a hard copy so you can be somewhat familiar with the terms.  These discussion boards and this site's info on pathology reports were great resources for me.  Write down your questions and maybe take someone with you to the onc.  It is overwhelming and having another set of ears helps.  My path showed DCIS with no invasion.  I also got my path results sent to another hospital for a 2nd opinion which was an easy process...just had to fax some forms and provide insurance info to 2nd hospital.  Think positive and good luck! 

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  • shannonW
    shannonW Member Posts: 186
    edited March 2011

    Saw the onco today and it was all good. Well, "if you have to have cancer" good. The final patho said "no invasive cancer seen". Since I had BMX there's no need for any further treatment. He took the time to explain everything on the report. Interestingly it said I had Paget's Disease of the nipple which from what I've read is a rare cancer, like 1-2 in 100. But it's all out and clean margins. Yeah!! So now the continuing process with these expanders and eventual implants. Not fun at all, but happy all the same.  So my final stats are:

    DCIS w/Paget's disease, 3cm, stage 0, grade 2-3, 0/2, ER+/PR-

    I'm not sure how everyone gets this info at the bottom. :)

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