DCIS lumpectomy margin showed ALH

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Yellowflower18
Yellowflower18 Member Posts: 2

Hello

I'm a new poster so please forgive me if I don't have everything correct. I've learned so much from all of you so courageously sharing your stories, fears, treatments...you truly have been a blessing during these crazy last few nonths. I was hoping for some insights and advice from anyone who may have been in a similar situation or know someone who has. My doctors so far aren't answering my questions as directly as I would like...my next steps are to call the pathologist and/or seek a second opinion. DCIS is a blessing and a curse when trying to decide treatment post op.

DCIS grade 3 ER/PR +. Lumpectomy with no lymph node removal. 6mm with clear margins but one margin had ALH with loss of ecadherin and cytoplasmic p120 expression.

My pathology report stated clear margins even with the ALH. My assumption is that the ALH was very tiny and clear margins were achieved around it, as well. But this is something I would like to confirm with the pathologist.

My googling, reveals that that ALH can be a marker for ILH. From what I've read ILH is more elusive and quite frankly scares me more than the DCIS. Which started out post biopsy as grade 1-2 with cibriform, pappilary and solid with no necrosis to post lumpectomy grade 3 cibriform, solid and still no necrosis.

My breast surgeon says that the grading is subjective. That if I didn't want rads, he would agree but probably recommend the genetic test for recurrence and probability of invasive cancer. He also doesn't think I will need endocrine therapy.

I just met with radiation oncologist, she's of the mind set that since I'm 46 and grade 3, whole breast radiation 3 weeks with 5 day boost. She doesn't support the genetic testing because she feels there's not enough statistical data to support the value of it.

The ALH scares me. I think I should have an MRI to make sure there's nothing else lurking out there before I start any kind of treatment. My breast surgeon told me not to worry about it and just move forward, they got it all and I'm cancer free. At my first appointment I explained that the biopsy doctor and nurse mentioned that I might need an MRI due to my dense breast tissue. He said no you don't your breast tissue is not that dense.

If my DCIS was just DCIS, even grade 3 no necrosis, I'd want the genetic test and if my numbers were low...I might forgo the radiation.

My concern with radiation is that if I use it now, I may not to be able to use it in the future, if I have a recurrence. Hoping that if I do it's just another straightforward DCIS. And at that point again lumpectomy and I would opt for the radiation.

And both docs tell me, you may never have anything again. From their lips to God's ears. But I have to make the best decision now for the next 30 years. And let's just say which I'm sure you all get, it isn't easy at all. Oh and the clock is ticking on getting radiation started. Lol. No pressure.

I apologize for the long post. Thank you to anyone who stayed reading it this long. :) Thanks in advance for any responses.

Comments

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited August 2018

    Hi Yellowflower and welcome. I had IDC/ILC, and of course I'm not a doctor. But here's what I've learned in my own research:

    It is not at all unusual for ALH to be found when DCIS, IDC or ILC are found. Your margins are considered clean even if there is ALH, since ALH is a benign condition.

    Having ALH (as I do) after surgery does increase your risk of recurrence somewhat; I don't think there are any good studies to say how much. And grade 3 is more worrisome than grade 1 or 2. But I'm sorry, I don't know what ILH is.

    At your age, honestly, I would do the radiation. A three-week course is shorter, with less risk of side effects.

    I'd certainly ask again about your breast density, and whether an MRI might pick up something unseen in either breast. But if two doctors concur you're in the clear you might wait six months for that.

    On genetic testing, do you mean the Oncotype DX test (which is done on the tissue you had removed) or the kind looking at your genes (which requires a saliva sample?) Both are useful but can be a pain to get your insurance to pay for. I ended up paying for the saliva-test myself and as I recall it was about $400.

    Hope that helps.


  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    When I had DCIS two years ago my husband wanted me to ask my RO if we shouldn’t save the radiation in case something returned. She said, “The goal is to not have that happen.” Then she said it would cut my probability of recurrence in half. At that point it was an easy decision.

    Both my BS and RO said I could get genetic testing done but they were sure it would come back negative. I haven’t bothered.Unless you have a strong family history, it probably isn’t worth it. (And there are no numbers, just yes or no to various genetic mutations.)

  • Yellowflower18
    Yellowflower18 Member Posts: 2
    edited August 2018

    Thank you both. Sorry for my typo, I meant ILC, not ILH.

    I had the brac1/2 tests before surgery. It was negative. No family history. I think my age was his reasoning for the test.

    My surgeon was referring to the oncoDCIS test. The radiologist said yes for the onco test for invasive cancer since it has some history and she was comfortable with the outputs. It was the oncoDCIS one she wasn't comfortable with. What is the saliva test? I've never heard of that.

    I think I've become comfortable with getting the radiation. I still want an mri for peace of mind. I will ask my breast surgeon again. My friend got me a name of another good dr at a different local hospital. I may get a 2nd opinion.

    Sometimes this is all just too much. Overwhelming.

    And I see the medical oncologist on the 28th. My breast surgeon doesn't think they will recommend anything. My biopsy pathology showed 100% er and pr. After my lumpectomy, he said they don't update those results. I had an IUD and had that removed. From everything I read, I'm expecting to take some kind of pill.

    Thank you again for your responses.

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