Join Us

We are 224,380 members in 83 forums discussing 163,518 topics.

Help with Abbreviations

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 06:57PM

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.

Log in to post a reply

Page 1 of 1 (11 results)

Posts 1 - 11 (11 total)

Log in to post a reply

Nov 18, 2020 07:43PM 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
Log in to post a reply

Nov 18, 2020 08:13PM 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.

Log in to post a reply

Nov 19, 2020 07:54AM 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
Log in to post a reply

Nov 19, 2020 08:40AM - edited Nov 19, 2020 08:41AM 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
Log in to post a reply

Nov 19, 2020 09:53AM 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.

Log in to post a reply

Nov 26, 2020 12:31PM - edited Nov 26, 2020 04:44PM 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!

Surgery 11/5/2020 Lumpectomy: Left, Right Dx 11/13/2020, LCIS, Both breasts Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 27, 2020 10:59AM 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

Log in to post a reply

Nov 27, 2020 06:53PM 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)
Log in to post a reply

Nov 28, 2020 06:39PM muska wrote:

Hi Peggysmom, I completely understand your hesitation and concerns. One question i would ask your oncologist, if you do bilateral mastectomy and assuming post-surgery pathology does not change your diagnosis and staging, will they still recommend hormonal treatment or will the surgery be the end of it?

Speaking of direct to implant reconstruction, I am not sure any plastic surgeon could be 100% certain because a lot depends on the tissues status after the mastectomy surgery and they never know until it's over.

I had a confirmed case of cancer in one breast before surgery but it was tiny in size and I was considered a good candidate for direct to implant. There was no indication of lymph nodes involvement before surgery and nothing was seen on scans. Pre-surgery staging 1a. They found macromets in lymph nodes during mastectomy on the cancer side and very extensive LCIS on the non-cancer side. After the surgical oncologist did her best to remove two tumors one of which was very close to the chest wall, the plastic surgeon could not do direct to implant because the tissues were too damaged. It all eventually ended well but very different from what was expected.

I remember I had a difficult time deciding whether to even do the left side at all because there was no cancer and no diagnosed LCIS. Looking back I understand it was a disaster waiting to happen and am very glad I didn't have to continue frequent monitoring, biopsies, etc.

Good luck with your decision!

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
Log in to post a reply

Nov 29, 2020 08:54PM peggysmom wrote:

Hi, thank you for your reply! I did meet with a genetic counselor who went over my results "Variants of unknown clinical significance" on BRCA2 and PALB2 genes- she stated that 97-99% of the time these variants turn out to be nothing. It was helpful having the testing done and speaking to her. Thanks so much for your support!

Log in to post a reply

Nov 29, 2020 08:59PM peggysmom wrote:

Hi muska- Thanks for sharing your experience, it helps me understand why the PS may not do direct to implant. It just seemed that he totally discounted it from the get-go for my "size" of breast. Thank you also for sharing about your extensive LCIS, your story helps me make my decision! I'm ready to move forward with BMX and will be seeing a 2nd opinion PS about possible reconstruction.

My surgical oncologist did say the treatment plan will differ based on the path from mastectomy, so radiation, chemo, and anti-estrogen therapy is off the table only for now.

Thanks again, I appreciate your sharing and am glad eventually it all ended well for you!

Page 1 of 1 (11 results)