Need Help Preparing for Upcoming Appt. with Dr. Lagios

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dazedandconfused123
dazedandconfused123 Member Posts: 61
edited January 2016 in IDC (Invasive Ductal Carcinoma)


Hi folks!

I am overwhelmed and would appreciate some guidance. I have posted my detailed diagnosis below. I am scheduled for my consultation with Dr. Lagios this week. I had decided to get a second opinion with him after my second diagnosis of DCIS this year. I am at a major cancer center in Miami and am comfortable with my surgeon.

At my post op appointment with my surgeon last week, I was informed that I have both DCIS and IDC. I am having a hard time wrapping my brain around the IDC diagnosis. I was hoping to forgo partial radiation when the diagnosis was simply DCIS but now I doubt that is possible. If I do need radiation, I want to do it this year for insurance purposes. Sentinel node biopsy is scheduled this week. I am concerned about Tamoxifen as I already struggle with depression and fibromyalgia.

I am looking for feedback regarding how best to prepare for my appointment with Dr. Lagios.

1. Is it unusual to have 2 biopsies / lumpectomies within 6 months?

2. Was IDC there all along or was it new growth (its grade 3)?

3. Do I need rads?

4. Do I need tamoxifen (I believe Lagios is not a supporter)?

5. How should I best monitor my situation going forward?

Thanks!

DIAGNOSIS SUMMARY

1st Diagnosis:

1/13/15 Biopsy: DCIS intermediate grade, solid and cribriform types, with foci of central necrosis and calcification. ER (3+, 3), PR (3+, 3). (Right, Stage 0, Grade 2, ER+/PR+)

2/15:Oncotype type score: 15; Genetic Testing:Negative

3/17/15 Lumpectomy (wire guided).Negative for residual DCIS. No radiation recommended; I declined Tamoxifen.

2nd Diagnosis:

8/18/15 Mammogram, ultrasound:6 month follow-up.

10/12/15 Biopsy:DCIS intermediate grade, solid and cribriform types in association with calcifications. ER (3+, 3), PR (3+, 3).(Right, Stage 0, Grade 2, ER+/PR+)

Not enough tissue to run Oncotype score. Surgeon will attempt to run Oncotype test by sending tissue after my upcoming lumpectomy.

10/23/15 Bilateral MRI:Nothing suspicious other than the area biopsied.

11/24/15 Lumpectomy (wire guided). IDC: 6mm, Grade 3, Stage 1, ER+, PR+, HER-.DCIS:Minute Residual. Negative margins.

12/08/15 Sentinel node biopsy scheduled.

12/14/15 Partial radiation scheduled - 5 days, twice a day.

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Comments

  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited December 2015

    Bumping - anyone??

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited December 2015

    Well, I do not have very much information for you, but did not want your post to languish all alone.

    Yes, it is unusual to have a second lumpectomy so soon, but yes, the lesion was probably right there all along, just not visible to mammography. Most of us had an MRI before surgery to help identify any otherwise invisible problematic areas, and it does not appear that you had this imaging? I am happy that you now have had an MRI and can be confident that no problematic areas remain.

    I am confused about your upcoming sentinal node biopsy--I'd thought this was only possible when the tumor was still present.

    And yes, I'm guessing that Tamoxifen will be recommended, both because of your high grade DCIS and your (luckily tiny) IDC.

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  • dtad
    dtad Member Posts: 2,323
    edited December 2015

    dazedandconfused Hi there. I know you are comfortable with your surgeon but if your looking for feedback something seems off. The sequence of testing and the multiple biopsies are confusing to me. Why didn't you have a preoperative MRI the first time. Obviously the other areas of concern were there at the time of your first lumpectomy. Why didn't you have rads the first time? Was that your choice? Also why are you having a sentinel node biopsy now? I don't know where in Florida you live but IMO you should be treated at a university based teaching hospital. Im glad you are getting a second opinion however. Good luck and keep us posted....

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited December 2015

    Just want to add a bit of clarification: Someone with a great deal more knowledge than I have just told me that it is not uncommon for sentinel node biopsies to be done after a lumpectomy. They can even be done after a mastecomy, with the injection cleverly placed in an area that will still identify the correct node or nodes (I had two sentinel nodes, others have sometimes three or thereabouts). And yes, even with that tiny, tiny invasive bleep, the sentinel node biopsy is standard procedure. You will be relieved when it (most likely) comes back nice and negative.

    As to whether you need rads, both your surgeon and Dr. Lagios will be able to offer their thoughts, phrased as general information, but when you meet with your radiation oncologist, that is where you will have the opportunity to really grill him or her about statistics, benefits, side effects, and so on.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited December 2015

    Hi Brookside VT,

    Thanks for your reply! An MRI was not offered for the first DCIS diagnosis. Both surgeon and radiologist did not feel it was necessary and I don't believe it is standard for a case like mine. I requested an MRI after the 2nd DCIS diagnosis and it was performed. I'm guessing an MRI may have prevented the 2nd diagnosis and treatment.

    In your signature it says 0/2 nodes. Can you tell me what that means?

    Thanks!

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited December 2015

    Hi dtad,

    Thanks for your reply! My husband agrees that something about my treatment situation seems off. I don't know if it is because of my treatment team, the confusing nature of DCIS treatment, or my desire to treat holistically that makes things so complicated.

    See my response to BrooksideVT above for why I did not get an MRI. I don't think MRI's are standard for DCIS but are for IDC.

    I was scheduled for rads after the 1st lumpectomy but decided against it for 2 reasons. 1) I did not want it unless absolutely necessary; 2) Surgeon did not think I needed it. She insisted I needed it before the lumpectomy. However, the lumpectomy pathology showed no residual DCIS meaning it was all removed during the initial biopsy. So she thought I could skip it.

    Sentinel node biopsy is only being scheduled now because IDC was not discovered until the pathology report from the 2nd lumpectomy. The nodes need to be tested to ensure it has not spread.

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  • ballet12
    ballet12 Member Posts: 981
    edited December 2015

    Hi Dazed, MRI's are often performed after the core biopsy and before the lumpectomy in DCIS, because they want to see the extent of the area, and even more importantly if there are other areas of concern in that breast or the other breast. My DCIS diagnosis was not made until after the lumpectomy (that path report), so I had an MRI prior to my subsequent re-excisions (required because margins weren't clean). You do raise an interesting question about radiation and why it wasn't offered the first time around. You may be right that you were presenting concerns to the treatment team about radiation and your desire to be treated holistically. At my facility (the one I switched to for the second and third lumpectomies), I asked the very experienced radiation oncologist if there were circumstances when radiation could be waived, and she said very few. She did study individuals with low grade DCIS (yours was intermediate at the time), and found that recurrences happened, just later down the line after the diagnosis (many years later). Anyway, I had the high grade stuff, so I just went for the radiation.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited December 2015

    Hi again ballet12! (again:))

    Thanks for your feedback.

    Perhaps if I had the MRI this whole 2nd round could have been prevented. My DCIS diagnosis was micro calcifications and no one seemed to think it was a big deal (including me). Not my surgeon, not the radiation oncologist and not my PCP. With a low Oncotype score and negative genetic testing, I felt very low risk. I am very proactive about my health but worry just as much about over treatment as under treatment.

    One of my questions for Dr. Lagios is if I should consider changing treatment providers.

    Thanks,

    Julie

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited December 2015

    The "0/2 nodes" in my signature means two nodes were removed and neither showed cancer. While technically this is correct, in actuality, 10 "isolated" cancer cells were found in one node. The wisdom out there says this finding is of no importance. It took me a while to wrap my mind around that, let me tell you!

    I do not find anything unusual in your treatment, except possibly the absence of an MRI before your first surgery. As you indicated, possibly this is the usual recommendation for DCIS.


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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited December 2015

    Dazed, I am wondering why partial breast radiation was recommended for you. Didn't you have malignancy in two separate areas? I would have thought that in a just-to-be-sure mode, they would recommend the shorter whole breast protocol.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited December 2015

    Hi BrooksideVT,

    Thanks for explaining what the 0 / 2 nodes mean.

    Last I heard I was still eligible for the limited partial radiation but that may change. Limited is partial breast and lasts 5 days And give twice a day. The whole breast radiation is actually longer at 4 to 6 weeks. I'm hoping I am still eligible for partial as I could save full breast radiation in case I need it in the future.

    Both areas of DCIS and the IDC have been in the very same area.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited December 2015

    i have never had a Breast MRI, just mammogram and ultrasound. I don't necessarily know if MRI is standard for everyone. I've been reading some articles which say that DCIS may be over treated. Some docs are starting to take more of a wait and see approach. It's a good thing that they were monitoring Dazed carefully

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    If my doc had waited to see rather than doing an MRI after DCIS diagnosis, I'd be sitting here with an unidentified, untreated, non-imaged, node-positive IDC in the non-DCIS breast.

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  • dtad
    dtad Member Posts: 2,323
    edited January 2016

    This is exactly why preoperative breast MRIs are necessary. Especially for women with dense breasts. Mine showed a second malignancy in a different area that both the mammo and the ultrasound missed. I was scheduled to have a lumpectomy before the MRI. I decided on a BMX after the MRI results. Obviously my life would have been in jeopardy without the MRI. IMO it should be the standard of care....

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited January 2016

    ksusan and dtad,

    Yes I am starting to wish I had a preoperative MRI after having three separate surgeries this year:( (2 lumpectomies, 1 sentinel node biopsy)

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