Dr. Lagios - Need help preparing for Upcoming Appt.

dazedandconfused123

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!

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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.

ballet12

It will be interesting to hear what Dr. Lagios has to say at this point. You are no longer low risk (my read of your previous path report with the intermediate grade and central necrosis suggests that you weren't low risk then either). I would be surprised if Dr. Lagios doesn't recommend radiation. Don't know what he would say about the hormonals, but even though I don't take them (by choice after DCIS grade 3 only), you are now in a different category with the IDC. You are also awaiting the sentinel node biopsy prior to complete staging. Best of luck to you. This is tough to go through so soon after the initial diagnosis.

dazedandconfused123

Thanks ballet12! It has been tough. I was hoping for more responses.

percy4

Hi Dear - I consulted with Dr. Lagios, and was very happy I did. During the phone consult, he explains everything. Your questions are good, and he will also offer opinions about questions you may not have thought of. I was also diagnosed upon lumpectomy with DCIS only, and then they found a microinvasion of IDC (less than 1 mm) upon lumpectomy. I was on the fence about rads. Often, he doesn't recommend them. In my case, he concurred that I needed them, as my margins were clear but close. So at least I had peace of mind, then, about doing the rads. He told me I did not need anti-hormonals. Your IDC is somewhat larger, so I don't know what he will say to you. I do believe, however, that you will be comforted by having used an outside expert in the field, and you will understand more about your situation, which has turned out to be more serious than you'd thought, but which, truly, is very treatable. Please keep us Posted, be strong, and realize that many, many women have ultimately done just fine in your situation. I send you my good thoughts and blessings.

dazedandconfused123

Thanks percy4! Yes my IDC is 6mm.

CAMommy

I think with the inclusion of IDC you no longer have DCIS, you have invasive. You will be treated for the IDC which does put you in a higher risk class. I do not believe any doctor would say you don't need rads unless you were getting an mx. Same for tamoxifen. Once you cross the line to invasive, tamoxifen is much much more important. With just DCIS it is primarily for the other breast, at least according to my Mzo.