DCIS or not DCIS??

Options
Tanwhite
Tanwhite Member Posts: 13
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hello!!

I hope everyone is well. 

I've been on this board for a few months and now I finally feel like I have something to share. I would also like to get some feedback. 

So...back in Jan I felt pains in my left breast. I went to my GYN and she wrote a 'script to have a mammogram plus ultra sound. I live in NYC so I went to Lennox Hill Radiology where they foud thru the ultra sound and later core needle biopsy - Intraductal Papilloma. Their recommendation was to have it removed so I went to St. Lukes Roosevelt and had the tumour removed Feb 7th. 

When I returned Feb 28th for a post op follow up  my breast surgeon explained the pathologist found intermediate grade DCIS - which was removed during the surgery.

She said my course of treatment would be 5-6 weeks radiation and 5yrs Tamoxifen. 

A quick note, my mother (late 50's)  and 1st cousin (early 40's)  both had breast cancer. 

I was not happy with her recommendation so I went to Sloan Kettering for a 2nd opinion. I sent all my mammography images, pathology slides and written reports for their review. 

Well I'm glad I did because today I just found out there was no DCIS. The pathologists are very puzzled by St. Lukes findings and think possibly there may have been a missing path. slide. The good news is whether there had been DCIS or not because of the size, 1mm,  radiation would not have been recommended. 

So either way I would have had good news today. Both hospitals agree that I had florid hyperplasia and I should be monitored but there is no need for further treatment. Clearly the Tamoxifen is off the table. 

I do feel at ease but there is a nagging feeling that I'm going to get another call saying "oops we found another discrepancy"

I know it may be pointless to call St. Lukes or even my now former breast surgeon there but I want an explanation. Am I being ridicullous? Should I just count my blessings and move on.

I also just want to add that over the past few months this website has been a godsend. Thank you ladies for sharing your experiences and your thoughts. 

Be well!

· Share on FacebookShare on Twitter

Comments

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

    Tanwhite, it's great news, but I'd be wondering too. Sometimes it happens that one lab identifies something as DCIS and another lab identifies it as being ADH... that can happen, particularly when the area of concern is very small.  But it sounds as though in your case Sloan Kettering didn't even find ADH.  So what did the pathologist at St Lukes see on your slides?

    Personally, I think I'd want to talk to the breast surgeon, explain what Sloan Kettering said, and ask if she has a suggestion as to how to resolve and/or explain this discrepancy. 

    · Share on FacebookShare on Twitter
  • Tanwhite
    Tanwhite Member Posts: 13
    edited April 2013

    Thanks for your reply Beesie...

    My report from St. Lukes where I had my surgical biopsy found the papilloma and usual hyperplasia. Above I incorrectly stated florid hyperplasia was found. That was actually found during my inital core needle biopsy at Lennox Hill. They found small fibroadenoma as well. 

    The doc I spoke with at Sloan said the pathologists were very puzzled because it seemed when reviewing each of the path slides from the surgical biopsy there is a jump from hyperplasia to DCIS. He said there should have been evidence of atypical hyperplasia which was why he I thought I was missing slides.

    I'm going to take your recommendation and speak to the breast surgeon...clearly something was amiss and she should be aware.

    Thanks again!!

       

    · Share on FacebookShare on Twitter
  • danawp
    danawp Member Posts: 99
    edited April 2013

    Very puzzling.  Good luck.  Keep us posted.  I just had surgery at Sloan last week, and I think they are great, but I would definitely want the discrepancy explained!

    · Share on FacebookShare on Twitter
  • SJW1
    SJW1 Member Posts: 244
    edited April 2013

    Tanwhite,

    Wonderful that you don't have DCIS.

    However, if you will always wonder, you might ask your doctors at Sloan to send their pathology report to St. Lukes for review and an explanation. If you don't have a copy of both reports, you will also definitely want to request those as well. That way you can compare them yourself and also keep them for future reference.

    Best,

    :) Sandie

    · Share on FacebookShare on Twitter
  • Tanwhite
    Tanwhite Member Posts: 13
    edited April 2013

    @Thank you Danawp

    @SJW1, Sloan will be sending a report to St. Lukes, I'm going to wait a week and then give them a call. 

    Maybe its wrong to feel this way but I want to explanation. At the very least I'd like to understand how they came to their diagnosis and find out what the protocal is for opposing opinions.  I don't want to make a stink but I think it should be brought to their attention that a pretty serious error has been made. 

    ok, well thats my 2cents..I wish you ladies all the best. 

    hugs!!

    Tanya

    · Share on FacebookShare on Twitter
  • ballet12
    ballet12 Member Posts: 981
    edited April 2013

    Yes, Sloan-Kettering always sends their pathology report (second opinion review) back to the originating path lab.

    I would definitely speak with the surgeon.  What an awkward situation you are in.

    I would see if you can be followed either by a surgeon at MSKCC (Sloan-Kettering) or whether you might be followed in their high risk clinic, given all the craziness you've been through.  "Usual" or even florid hyperplasia that isn't atypia (ADH), is usually not considered high risk (and isn't on their list of typical patients that they follow), but given the seeming discrepancy of your diagnosis, I would still think they might treat you as high risk.  I have been very happy with MSKCC.

    Best of luck!

    · Share on FacebookShare on Twitter
  • proudtospin
    proudtospin Member Posts: 5,972
    edited April 2013

    I went through a nasty 3 months on a dif healh issue with nut ball but highly recommended docs, going over the top with vague diagnosis

    I finally had a second opinion from a totally dif hospital (took my scans from the first place with me) the second hospital said why are you here?  Go home and stop spending your money on co pays

    for me, it was all about docs all wanting to find a reoccurance of my 5 year ago diagnosis and treatment for DCIS.  I did all, the onco is fine with me so now I need to learn how to cope with all the other docs in this world!

    · Share on FacebookShare on Twitter
  • Tanwhite
    Tanwhite Member Posts: 13
    edited April 2013

    Hi Ballet12, 

    Acually Sloan is going to continue monitoring me under the "high risk" clinic. 

    Haha! I do feel awkward about bringing this up with the BS but its important to let her know what happened and why I will not be back. 

    Wish me luck!

    Thanks!

    · Share on FacebookShare on Twitter

Categories