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Topic: newly diagnosed LCIS ADH and FEA

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

Posted on: Jul 13, 2020 04:49PM

everythingwillbefine wrote:

Hi,

I just got a diagnose of LCIS ADH and FEA for the right breast.

I also had another biopsy for my left breast because the 2nd opinion doctor ordered MRI and that showed a lot of lumps on my left breast and so I had a biopsy on the left breast with them and that result has not back yet.

I am so worried now.

I know I will have surgical biopsy for the right breast to see if the margin is clean. Are they going to also test for Grade 1, 2, 3 also?


Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 13, 2020 06:34PM - edited Jul 13, 2020 06:34PM by MelissaDallas

If the surgical biopsy does not show an upgrade to DCIS or invasive cancer they won't. LCIS, ADH and FEA aren't graded like invasive cancer or DCIS is, as far as I know

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Jul 13, 2020 06:49PM everythingwillbefine wrote:

Thanks MelissaDall.

So you are saying DCIS will be graded?


Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 13, 2020 07:28PM Beesie wrote:

DCIS, although non-invasive, is considered to be Stage 0 breast cancer and is graded. LCIS, FEA and ADH are high risk conditions and therefore are not graded (to my knowledge).

I am not overly familiar with LCIS but with ADH (and LCIS?) I didn't think that the excisional biopsy was done to achieve clean margins but more so to ensure that there isn't any DCIS or IDC in the area.

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Jul 13, 2020 07:48PM everythingwillbefine wrote:

Ok thanks Beesie.

How much the chance it will be DCIS and IDC in the surgical biopsy findings after diagnosis of LCIS?


Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 13, 2020 07:58PM Beesie wrote:

With ADH, approx. 20% of cases are upgraded; I was one. I believe it's a similar percent with LCIS but I don't know. Hopefully someone else will come by who knows.


Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Jul 14, 2020 07:46AM - edited Jul 14, 2020 07:47AM by everythingwillbefine

My biopsy report from right breast.

I am still waiting for the biopsy report from my left breast.

My question is what does it mean by

  • Lobular carcinoma in situ (LCIS), classic type, with pagetoid spread into the ducts --- What is pagetoid spread into the ducts.... is this bad??
  • Background breast tissue with sclerosing adenosis, fibroadenomaous change, pseudoangiomatous stromal hyperplasia (PASH), usual ductal hyperplasia, and microcysts. ----- What is pseudoangiomatous stromal hyperplasia (PASH.....is this bad??

Thank you I am stressed out.





Final Diagnosis

A. Right breast, upper outer quadrant, posterior, with calcifications, stereotactic core needle biopsy (BI-RADS 4B):

  • Focal atypical ductal hyperplasia (ADH) arising in a background of flat epithelial atypia (FEA), see note.
  • Lobular carcinoma in situ (LCIS), classic type, with pagetoid spread into the ducts.
  • Background breast tissue with sclerosing adenosis, fibroadenomaous change, pseudoangiomatous stromal hyperplasia (PASH), usual ductal hyperplasia, and microcysts.
  • Microcalcifications are associated with FEA and benign breast tissue, including sclerosing adenosis.

B. Right breast, upper outer quadrant, posterior, without calcifications, stereotactic core needle biopsy (BI-RADS 4B):

  • Breast tissue with fibroadenomatous change, pseudoangiomatous stromal hyperplasia (PASH), columnar cell change, usual ductal hyperplasia, stromal fibrosis, and microcysts.
  • Microcalcifications are associated with benign breast tissue.

Note for part A: Multiple additional deeper levels were examined on A1.

JENNIFER L. PINCUS, MD

(Electronically signed by)

Date Finalized: 07/13/2020 15:34 PM

I, the Attending Pathologist, attest by my signature that I have

personally reviewed and examined this case, grossly and/or microscopically,

and have made or confirmed the diagnosis(es).

Clinical Information

Clinical Procedure: Right STX with and without calcifications UOQ posterior

Clinical history: Abnormal mammogram

Specimen/Gross Description

A. Received in formalin, labeled with the patient's name and designated on the container as "right STX with calcifications, UOQ, posterior," are four cores of tan-yellow tissue ranging in length from 0.3 to 3.0 cm and averaging 0.4 cm in diameter. Some cores have been previously inked blue. The specimen is submitted in its entirety in cassette A1.

B. Received in formalin, labeled with the patient's name and designated on the container as "right STX without calcifications, UOQ, posterior," are multiple cores of tan-yellow tissue ranging in length from 0.3 to 2.7 cm and averaging 0.4 cm in diameter. The specimen is submitted in its entirety in cassettes B1 and B2.

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 14, 2020 03:21PM everythingwillbefine wrote:

how do you cope with the stress?

I feel my anxiety level is beyond my capability and I cried all day

My kids are young and I want to see them grow

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 14, 2020 03:53PM everythingwillbefine wrote:

I am still waiting for my biopsy result from last Wednesday which was done at the 2nd opinion hospital....It's been a week almost. I am so sick of waiting and not knowing is killing me.

How big the chance is that with the right side of LCIS / ADH / FEA, my left side is stage II or above invasive?

Thank you for all.

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 14, 2020 05:34PM everythingwillbefine wrote:

My report from left just came back

DCIS with intermediate grade

I will have a talk with the surgeon on 7/20

I am towards with double mastectomy on the left side.

I am thinking to do a double mastectomy since my right side has LCIS

what do your ladies think?

Also I am not sure whether I want to do an immediate reconstruction or just go flat.

And what is the recurrence rate in the future?

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 14, 2020 07:24PM Lea7777 wrote:

Everything will be fine, Sorry you find yourself in this situation. In keeping with your screen name, a diagnosis of DCIS is not invasive cancer, so you have an excellent, overwhelming chance that everything will be fine. You're already in better shape than your July 14 question of whether you think you might be Stage 2 or above. You are Stage 0 with DCIS.

Probably a better place to seek advice in your situation is the DCIS forum on this site.

The management trend is away from surgery for LCIS and DCIS. Of course, you and your doctors need to make a decision that you're comfortable with and that fits with your genetics (genetic testing would be a good idea for you) and your overall physical situation.

"And what is the recurrence rate in the future?"

I assume you mean after mastectomy, since that is what you are considering. After mastectomy, this study shows an overall 1.4% recurrence of DCIS over 10 years. But remember DCIS is not invasive cancer, so the 1.4% does not refer to invasive cancer, only DCIS. Your doctor may be able to give you more specific information based on your particular situation.

Mamtani A, et al: Impact of age on locoregional recurrence after mastectomy for ductal carcinoma in situ ± microinvasion. 2019 Society of Surgical Oncology Annual Meeting. Abstract P47. Presented March 29, 2019.

Located:

https://www.ascopost.com/issues/may-25-2019/locore...

Specifics from study where the older you are the better the odds:

"Although the 10-year rate of locoregional recurrence was just 0.2% of women older than age 50, said Dr. Mamtani, the rate increased to 2% in women between the ages of 40 and 49 and 4.2% in women younger than age 40. Overall, the cumulative 10-year incidence of locoregional recurrence was 1.4%."


what do your ladies think?

With any surgical decision, I'd get second opinion. I have done that personally with every abnormal mammogram. If there is a high risk breast clinic near you, that may be a good place to get another opinion.

Good luck to you.



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Jul 14, 2020 07:57PM LiveLoveLaugh2020 wrote:

Everything it’s a very personal and difficult decision. You have to do what you think is best for you and something you will be able to live with.

I was diagnosed with DCIS and at first was set on a lumpectomy. Took me weeks to decide on bilateral Mx. Multiple reasons, mostly my age, not wanting to do rads or tamoxifen. I will be very honest it was not an easy road and I had many difficult days but I am very happy with the decision I made.

My “normal” boob was full of LCIS. So that just made me even more comfortable with my decision. I had a bilateral nipple sparing mastectomy and I’m very happy with my results for the most part. The only negative so far is rippling.

I wish you the best going forward. If you need anyone to talk to I’m here :)

DCIS Dx @ 34 - Bil NSM 09/2019 - Bil implant exchange with FG 01/2020.
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Jul 14, 2020 08:19PM - edited Jul 14, 2020 08:21PM by Beesie

"The management trend is away from surgery for LCIS and DCIS."

This is true only for a small percent of DCIS diagnoses, those that are deemed to be very low risk, for example a diagnosis of a small single focus of grade 1 DCIS. Even then, the majority of breast cancer experts would still recommend surgery rather than watchful waiting. Only a handful of doctors fall in the "watchful waiting" camp, but they get all the press. In any case, given that her doctor is recommending a mastectomy, it's probably safe to say that everythingwillbefine's diagnosis does not meet any doctor's criteria for watchful waiting.

"After mastectomy, this study shows an overall 1.4% recurrence of DCIS over 10 years. But remember DCIS is not invasive cancer, so the 1.4% does not refer to invasive cancer, only DCIS."

No, not true. Numerous studies have found that approx. 50% of DCIS recurrences are still DCIS, but the other 50% have developed into invasive cancer by the time the recurrence is diagnosed. In fact some studies, but not all, have found that after a MX (versus a lumpectomy), the percent of recurrences that are invasive cancer may be significantly higher than 50%.

As an FYI, the recommendation for a MX for DCIS is not as unusual as it might seem, given that DCIS is non-invasive. The issue with DCIS is that because the DCIS cells are confined to the narrow milk ducts, as the cells multiply, the DCIS spreads out through the ducts. This is different from an invasive cancer, which tends to form a solid mass as the cells multiply. For this reason, it is much more common for someone to have a large area of DCIS (5cm or more) than for someone to be diagnosed with an invasive cancer that size. Hence the need for more mastectomies. This is also why the NCCN treatment guidelines specify the need for wider surgical margins for DCIS than for invasive cancer - with invasive cancer, removal of the mass is sufficient whereas with DCIS there is concern that there could be more DCIS in the duct beyond what was visible on imaging.


Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Jul 14, 2020 09:39PM - edited Jul 14, 2020 09:47PM by everythingwillbefine

thanks everyone for reply.

This is overwhelming information for me to digest in a few days. I am relived for now that the diagnosis is DCIS but also know that might change after the surgery.

i hope I can live long to see my kids grow. I melt down crying ask the surgeon whether I have 20 years as I want to see my kids grow and she said you have 40. That is the most beautiful words I ever heard I will remember it.

Does anyone know any high risk breast center in Chicago that you recommend? I like my 2nd opinion surgeon who is the head at U of Chicago. But I think another opinion would be reassuring

The place I went first was Northwestern but the mamo I did with them for the past 6 years never showed any abnormal on my left side. And they did not agree to order more imaging after I asked them whether I could have MRI or ultrasound for further look.

Thanks to this forum after I was told for biopsy of my right due to calcifications this site gave me the knowledge to ask for MRI or ultrasound. And thanks to my 2nd opinion doctor who agreed andordered the MRI and that was how my left DCIS was found!

I feel very grateful and thanks to the people on this website!


Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 17, 2021 07:36PM HGL4969 wrote:

Hi,

I was BRCA 1... and am 25 years out from all my original cancer which was different from yours. My surgeons et all were at Northshore Evanston. Everyone was amazing.. Dr. Katherine Yao; the head of the breast center did my surgery and the other drs that she works with (oncol. , etc) are equally as fine. I know it is all so overwhelming right now. This is the worst of it. Once you make your decisions and move forward on your treatment path.. it gets better. I will keep you in my prayers.


Dx 10/1996, IDC, <1cm, Stage I, Grade 1, 0/17 nodes, ER-/PR-, HER2- Surgery 11/16/1996 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 12/13/1996 CMF Radiation Therapy 6/13/1997 Dx 10/2009 Surgery 2/13/2010 Prophylactic ovary removal Dx 5/27/2011, DCIS, Stage 0, 0/1 nodes, ER-/PR-, HER2- Surgery 6/13/2011 Lumpectomy: Left Surgery 11/7/2011 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Surgery 5/5/2012 Reconstruction (left); Reconstruction (right) Surgery 9/20/2012 Reconstruction (left) Surgery 4/1/2013 Reconstruction (left)
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Mar 17, 2021 07:50PM everythingwillbefine wrote:

hi HGL,

Thank you very much for sharing the information of the doctors. I had my surgery done last year end of July at University of Chicago. I feel fine now and hope this will become forever a history.

Good luck to all of us.

thanks

Dx 7/7/2020, LCIS, Right Dx 7/14/2020, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 7/30/2020 Lumpectomy: Right Surgery 7/30/2020 Mastectomy: Left Dx 8/6/2020, LCIS, Right Dx 8/6/2020, DCIS, Left, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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