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Topic: 10 cm span on LCIS. Big decision to make

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Nov 18, 2020 07:57PM

peggysmom wrote:

In a nutshell: baseline screening mammogram demonstrated a nearly 3 cm area of architectural distortion and two groups of pleomorphic calcs, in total mamograpy the area of concern spanned 6.7 cm. Tomo Bx of distortion = LCIS (classical type).hv

MRI demonstrated abnormal NME inolving nearly the entire right upper outer quadrant spanning 10 x 7 cm.

Two sites of calcs were biopsied yielding LCIS Florid and Classical type.

Tumour Board, no real consensus as it was a "tough case".

Genetics results demonstrate VUS on BRACA2 and PALB2. Even more "grey area"

There will be no good cosmetic outcome from excising 10 cm.

Options discussed: A unilateral mastectomy or oncoplastic surgery and contralateral reduction with 5-10 yrs of anti-estrogen rx and close surveillance. Obviously post-surgical changes in both breasts makes surveillance that much more difficult for the interpreting radiologists, not to mention the anxiety associated with q6 screening. Last option bilateral mastectomy for future risk reduction, which seemed to be the most favored option.?

I'm having a really hard time wrapping my head around bilateral mastectomy for no tissue proven diagnosis of cancer. BTW Lympoh Nodes look good on imaging, but a sentinal node will be biopsied at surgery given the extent.

Anyone else have or know of someone who had such extensive LCIS? It's shocking really. Because I cant even simply have an "excisional biopsy" of 10 cm there will be no breast left. If it was cancer, or definite BRCA mutation the decision would be so much easier.

Feeling sad. and confused. and overwhelmed. and scared.

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Nov 18, 2020 08:43PM ajminn3 wrote:

I had 7cm of DCIS upon initial diagnosis. Imaging and biopsies couldn’t find anything invasive, but my breast surgeon repeatedly told me she rarely saw such extensive DCIS without some kind of invasive component hiding somewhere (not to scare me, but more to prepare me if they found something more). A lumpectomy would have been disfiguring and for a multitude of reasons I personally chose a bilateral mastectomy with immediate reconstruction. The did a sentinel node biopsy and to my surprise, there was 3mm of er+|pr+ her2+ IDC on 1 of 3 nodes. They never could find anything within my extensive DCIS that was removed. Being it was a unique case, it was brought to the tumor board and I ended up doing chemo, targeted treatment, rads, and hormone treatment. Not an easy path and certainly not one I expected with an initial DCIS diagnosis!

This initial diagnosis and decision stage was one of the hardest for me. The decision is so personal. I wish you the best and am willing to answer any questions you have.

Dx 12/2019, DCIS, Left, 6cm+, Stage 0, Grade 2 Dx 1/2020, IDC, Left, <1cm, Stage IIA, 1/3 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 18, 2020 09:13PM peggysmom wrote:

Thank you so much for sharing, I appreciate it. I do have 1 question, you chose bilateral mastectomy with immediate reconstruction. Would you have changed the order of operation (i.e. delayed reconstruction) to accomodate the need for radiation? Were your implants affected by the radiation?

I too am expecting invasive disease or my sentinel node to be positive (my surgeon said she will only take 1 node) and am wondering if I should wait and see final pathology (in case I need radiation) before reconstruction.

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Nov 19, 2020 08:54AM ajminn3 wrote:

For me personally, I would not have changed the order. So far, beyond some skin tightening on my radiated side, my implant has “survived” radiation. I do acknowledge that could continue to change as time goes on since I’m only 3 months post radiation. I have not done anything cosmetically beyond the implants. I could do some fat grafting, increase my implant size, nipple reconstruction, etc, but for me personally I do not plan on doing anything for quite a while. I am satisfied with what I have for now. I have 3 young boys (6, 4, and 2), teach elementary special education, and have an active lifestyle so for me personally, cosmetic look isn’t as important as limiting number of surgeries and being able to remain active.

Dx 12/2019, DCIS, Left, 6cm+, Stage 0, Grade 2 Dx 1/2020, IDC, Left, <1cm, Stage IIA, 1/3 nodes, ER+/PR+, HER2+ Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 19, 2020 09:40AM - edited Nov 19, 2020 09:41AM by MinusTwo

I didn't have LCIS but I did have radiation after a recurrence & ALND surgery. My implant(s) not only survived radiation but are still happily giving no problems 9 years after placement and 7 years after radiation. The only difference as ajminn says it that side rides higher & tighter now.

Edited to say - the difference isn't very noticeable in clothes but my PS did say he could "Fix" the saggy one. Not interested in more surgery.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 19, 2020 10:53AM peggysmom wrote:

Thank you both for that info- and it sure sounds like your plate is full! Bravo to you and all the other strong Women posting on this site.

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Nov 26, 2020 01:31PM - edited Nov 26, 2020 05:44PM by datagirl

Your diagnosis sounds similar to mine. I had 6 cm areas of calcifications on both sides. I had 3 needle biopsies that showed ADH on the left, and ALH and a sclerotic lesion on the right. I then had to have excisional biopsies on both sides and they took out about 2 cm of tissue on each side. Long story short, I was finally diagnosed with ADH and LCIS on the left and LCIS on the right.

My care team said I don't need additional surgery and they don't consider LCIS cancer, but they recommended that I take tamoxifen. I've been on it for a couple of weeks. I admit I am worried it might turn into something down the line, but I'm happy with my decision.

Did you go to a doctor that specializes in breast surgery? I would get a second opinion before agreeing to bilateral mastectomy when you haven't actually been diagnosed with cancer. Of course this is only my experience and everyone is different. Good luck whatever you decide!

Dx 11/13/2020, LCIS, Both breasts
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21 hours ago peggysmom wrote:

Thanks for sharing and good luck with your decision about Tamoxifen.

The issue with my breast is i cannot undergo a 6 or 10 cm excisional biopsy it would be disfiguring and there is bx proven Florid-type LCIS. My first plastics consult was disappointing, i want “one and done” immediate reconstruction - direct to implant and he didnt feel comfortable with that

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13 hours ago hnsquared wrote:

peggysmom....I know all these decisions are difficult to make especially when you are still getting your head around the diagnosis. I saw you are considering which type of surgery and you commented that it would be easier if you were brca2. I also saw you have the palb2 genetic mutation. I also have the palb2 genetic mutation. I don’t know if you have met with a genetic counselor but I highly recommend doing so. The palb2 mutation raises the risk of a breast cancer diagnosis including another diagnosis. It also has a slight increased risk of ovarian and pancreatic cancer. Also a higher risk of male breast cancer if you were male and have the mutation. Once I talked to the genetic counselor for me the decision to do the BMX was easier.

I’m sorry you are going through this

Dx 2/20/2020, IDC, Left, Stage IB, Grade 2, ER+/PR+, HER2- Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/21/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 11/11/2020 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Herceptin (trastuzumab)

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