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Topic: Any LCIS people here?

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

Posted on: Mar 28, 2018 02:58PM

Laleesa wrote:

I have my first MRI since my lumpectomy on Monday. I am so nervous. My lumpectomy was supposed to be a benign fibroadenoma and ended up being a fibroadenoma with LCIS. I had four needle biopsies in the fibroadenoma that did not reveal the LCIS, so I am afraid of the MRI and what that may reveal. Is this normal? Also I want to do the prophalactic masectomy with reconstruction and my surgery is dependent upon the results of the MRI. I am so nervous. Anyone else with LCIS that had similar experiences?

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Mar 29, 2018 12:57PM Mammabear wrote:

I chose the mastectomy with immediate reconstruction for LCIS but it is an individual choice and there are lots of factors to consider. It was the right decision for me, but there are other options. Usually with LCIS you have plenty of time to make a decision so do lots of research, get all of the information you can.

Dx 2/10/2017, LCIS, Left Surgery 4/9/2017 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 4/10/2017, LCIS, Right
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Mar 29, 2018 06:48PM Lea7777 wrote:

To answer your question, yes. As to what to do, I have not yet decided, having been diagnosed in Jan of this year.

I'd like to extend the title of this thread "Any LCIS people here" to "Any LCIS people who were diagnosed 25 years ago and never developed cancer here?"

Laleesa, I think your fear is very normal and justified. Best wishes with the MRI.

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Mar 30, 2018 09:14AM Laleesa wrote:

thank you all for your replies! I want to share with all of you that my mother in law was diagnosed with LCIS 25 years ago! She tried the medication and got very sick she decided to take her chances and didn’t nothing! She is now 83 and never had breast cancer!

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Mar 30, 2018 10:50AM Lea7777 wrote:

Thanks for the MIL info, Laleesa. May she live many more years cancer-free!

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Apr 4, 2018 09:35AM NicolaSue wrote:

That's great to hear Lalessa. I'm living with LCIS and doing nothing (other than surveillance).

LCIS diagnosed Spring 2017. Vacuum excision biopsy. First follow up mammo 2018 - clear
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Apr 4, 2018 03:30PM Laleesa wrote:

I was diagnosed in February just got mri results and there was only a 5x5x6 mm that appeared to be benign oncologist said it didn’t have to he biopsied but kind of hoping it would be. I am having trouble deciding what to do. It is still so new to me and the rating to adjust. Leaning towards masectomy with reconstruction but also worried about infection and other surgical risks.

Thank you all for your replies!

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Apr 5, 2018 04:00PM AbundantlyblessedbyGod wrote:

HI Laleesa -- I'm a bit confused. Does the oncologist think there is no cancer?

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Apr 7, 2018 06:38PM - edited Apr 7, 2018 06:38PM by Laleesa

AbundantlyblessedbyGod The MRI report felt it looked benign, but I still have the LCIS and that issue remains.

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Apr 20, 2018 08:50PM Kerri_Oz wrote:

I have LCIS/ALH in one part of my right breast and a complex fibroadenoma in another part. I had an MRI to see if there was anything suss about my lymph nodes, which there wasn't, thank goodness. It did show high background enhancement, though, which is another indicator of increased risk of cancer. I've chosen to have a BMX. For me, the worry of extra screening and all that entails is just too much. I did not deal well at all with the one mamo guided core needle biospy and 2 ultrasound guided ones. Also, I would prefer have the surgery now, while I'm still fit and healthy, rather than waiting til I have cancer and need chemo, radiation and nodes removed. Of course, I may never get cancer even if I keep my breasts, but the risk is higher than I am comfortable with. It's very much a personal decision, and you need to do what you're most comfortable with.

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Apr 21, 2018 07:51PM Lea7777 wrote:

Best wishes to you Kerri Oz and thank you for providing us with your background and thought process.

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Apr 21, 2018 09:30PM Mammabear wrote:

I went through the same thought process in deciding to have the bmx just over a year ago. On the plus side, I have just realised that I would have been on 6 monthly checkups if I hadn’t had the mastectomy, so I have avoided a mammo, mri and probably two ultrasounds that I would have had if I hadn’t had the surgery. I am happy with my decision. However, I know from the statistics that only a small percentage of people with LCIS decide to have the surgery.

Dx 2/10/2017, LCIS, Left Surgery 4/9/2017 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 4/10/2017, LCIS, Right
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May 8, 2018 07:31PM Corah wrote:

2 years ago (2016) I was diagnosed with LCIS, ALH, fibroadenoma, calcifications or as my Surgeon said "very busy breasts'. Had a Mamo, Usounds, Mri that led to biopsy and lumpectomy and advised to have yearly checkups of Mamo & MRIs.

Last year (2017) I found a lump that bought my yearly checkup a few months earlier, this ended in mamo, Usound, biopsy. I asked the surgeon about DMX and he advised to wait for findings. It was another Fibroadenoma and only my GP rang me weeks after to say it was nothing.

I decided that I was only going to do the MRI every second year as my surgeon pointed out that they will pick up areas and that most likely will be investigated and I needed to be prepared for that.

In Australia some Doctors are not keen to do DMX for LCIS. I have talked to the surgeon who explained the process of a DMX to me and from this I have decided that I will wait and see what happens at each yearly checkups, in the way of, USounds, Mamos, MRI, Biopsy and after 5 years of this, I recon there will be a pattern forming and then I can make a better informed decision (and hopefully they will agree) ... Its not the testing or procedures that bothers me, its the waiting for the calls, the anxiety and the constant mental mind battle that this whole process brings. As LCIS puts us in a 'no mans land diagnoses' it is often not understood, not a priority and we come down the list for urgency...


Just had my yearly MRI on Monday, so this years mental mind game begins again, the waiting by the phone for a couple of weeks, then the 'should I ring' or 'will they think I'm over reacting'

Dx 10/12/2016, LCIS, Right, <1cm, ER-/PR-, HER2- Surgery 11/6/2017 Lumpectomy: Right
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May 15, 2018 02:19AM bdc wrote:

In 2016, after a BL Lumpectomy they found LCIS in both breast. Given this information, I opted for BL mastectomy. My sentinal nodes were clear, but there seven areas of LCIS in my breast. I did this becasue I could not imagine going through the worry every six months, not to mention the expense a MRI every year. I had an immediate reconstruction, but I now have an encapsulation of one breast. My post op education was absymal at best. My thoughts for you, go with your heart and do what your heart and your doctor adivse. I am happy with my choice.

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Jul 13, 2018 05:36PM awb wrote:

Lea-----I was diagnosed with LCIS 15 years ago, had lumpectomy, took tamoxifen for 5 years, evista for about 7 years, had breast MRIs for many years, now just yearly 3-D mammos, breast exams twice a year, and I'm doing fine. Hardly even think about it anymore. There are definitely pros and cons of both surviellance/ anti-hormonals versus BPMs, you just have to decide for yourself how much risk you can live with. Both my oncologist and the genetic counselor told me most of the risk calculators overestimate the risk of LCIS. and that it is likely in the range of 20-30% increase, so I'm going with 25%.


"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 14, 2018 08:49AM Lea7777 wrote:

Perhaps even less than 25% for you, AWB, with the years of chemoprevention!

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