DCIS after ADH? ER/PR status?

BostonLex
BostonLex Member Posts: 28

Thank you everyone in this forum! I have leaned so much from you in the last few days after my diagnosis on April 27.

I had 2 mammograms in 9 month that were suspicious. An MRI showed two masses in Feburary. I then had an MRI guided needle biopsy which showed ADH (the strange thing was that only one mass was seen during the MRI guided biopsy, my BC thinks that mass disappeared was related to my hormon cycle and should not be a concern). In April, I had an excisional biopsy and that's when I was diagnosized with DCIS. I met with my BC yesterday and I was told my DCIS is estimated to be smaller than 1 cm since 3 slides out of 10 showed DCIS with 1 slide showing positive margin. However, I havn't got my ER/PR status yet. How soon after surgery did your doctor know the ER/PR status? I feel those were important for me to know the risk of recurring for me. I also discussed the possibility for biomarker testing, P16, COX-2 Ki65 etc., but my BC doesn't think those would be conclusive. I have also requested my pathology slides be reviewed by the same person who reported the ADH. Do you think I should request the slides be reviewed by a person from a different hospital? I'm scheduled to have a partial mastectomy in two weeks. I'm leaning towards not to have radiation and tomoxifen if all margins are clean, however I couldn't convince myself to ignore the other mass showed up on my first MRI? I'd really like to hear all comments for me to make an educated decision. Ella

Comments

  • sweatyspice
    sweatyspice Member Posts: 922
    edited May 2010

    If whatever showed up on the first MRI disappeared on the second MRI, it was probably a false positive brought on by fluctuations in your hormones during your menstrual cycle.  Don't worry about it. 

    The only reason ER and PR would be important, as I see it, is if you were willing to take Tamoxifen to reduce your recurrence risk.  I think you should discuss those probabilities with your surgeon and/or an oncologist.

    I'd guess it would probably take a few more days to get the ER PR status after the preliminary path report from the biopsy comes in. 

    I might be misunderstanding your post, but it seems like you're concerned about whether you have ADH or DCIS or both.  I'd want second opinions on the slides until I was confident that there was some agreement regarding what disease/diseases I was dealing with. 

    No one really wants to do rads or Tamox.  Don't try to make a firm decision until after the definitive surgery when you know exactly what your situation is.  Right now, you're still in the information gathering stage.

  • BostonLex
    BostonLex Member Posts: 28
    edited May 2010

    Thank you, Sweatyspice! Yes, I'm still in disbelief that I have DCIS. My Breast surgeon is requesting another pathologist in the same hospital to review my sildes. Is there any reason I should send my slides to another hospital? 

    It sounds like I have to go through the partial mastectomy before I know my exact situation.

  • sweatyspice
    sweatyspice Member Posts: 922
    edited May 2010

    If it will make you feel more confident, have another institution take a look at your slides.  

    Do whatever you need to do so that you're comfortable with the decisions you'll have to make. 

    Don't worry about the time.  If you wanted to, I'm sure you could re-schedule the partial mastectomy.  Yes, if it's DCIS you should treat it - and while you should discuss this with your Dr to be sure - I seriously doubt there would be a medical problem delaying a few more weeks, or month, to make a decision you were comfortable with. 

    Or as comfortable as you're ever gonna get, anyway. 

  • SJW1
    SJW1 Member Posts: 244
    edited May 2010

    Ella,

    You might want to have Dr. Michael Lagios review your pathology slides. He is a renowned DCIS expert and pathologist who has a breast consult service that any one can use. He also was one of the two doctors who invented the Van Nuys Prognostic Index, which is a predictive tool that can be used to calculate if your risk of recurrence is low enough to reasonably omit radiation. 

    Pathologists frequently disagree with each other. When I had DCIS, my post lumpectomy pathology report said that 5 out of 6 of my margins were positive, which meant I needed a mastectomy. Thankfully I consulted with Dr. Lagios and he disagreed. I was not only spared a mastectomy, but he calculated my risk of recurrence, based on the Van Nuys Prognostic as only 4 percent. He therefore said that radiation would be of very little value to me. He also said that tamoxifen would not reduce my recurrence risk significantly. 

    From your profile, it sounds like you might also be a good candidate for omitting radiation, if you are comfortable with that.

    If you want to contact him, this is his website:

    http://www.breastcancerconsultdr.com/about_dr_lagios.html

    Take your time in making these important decisions. With DCIS you have the luxury of waiting as long as you need to feel comfortable.

    If you have other questions or need more info, feel free to send me a private message. I will be happy to help you in anyway I can.

    Best wishes,

    Sandie

  • sweatyspice
    sweatyspice Member Posts: 922
    edited May 2010

    I just wanted to add that ADH and DCIS can be very similar looking, DCIS being at a slightly more advanced stage.  Pathologists can disagree on which category they consider the specimen.

    I'd get as many opinions as you need to feel confident about which you have, or whether you have both, and what it all means, treatment wise.

    I have no strong opinion one way or the other on Lagios, but if you don't choose him I do strongly suggest you have your slides looked at by a pathologist at one of the major NCI designated cancer centers.  Are you being treated at one of the cancer centers now?  You definitely want someone who sees a LOT of breast cancer slides to look at yours.  And you may want more than one second opinion from more than one additional institution.

    It seems like this might be a judgment call between whether you have Grade 1 DCIS  (sort of like DCIS lite) or ADH.  What exactly the differences in treatment recommendations would be, I'm not sure.

    I had Grade 3 DCIS, and although several institutions looked at my slides while I was surgeon shopping, there was never a question about what my slides meant - everyone agreed on that much!   I have to say that while the surgeons disagreed about what kind of surgery was best, at least knowing that there was consensus about my slides gave me some amount of peace of mind.

  • magic03
    magic03 Member Posts: 2
    edited May 2010

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