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Topic: Anyone living with LCIS for 25+ years, no PBM, no cancer?

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

Posted on: Mar 29, 2018 09:00PM - edited Mar 29, 2018 10:29PM by Lea7777

Lea7777 wrote:

Just wondering if you are out there. Did you take any anti-estrogen drugs? Annual or biannual screenings? Please share your thoughts on managing the condition and dealing with the risks, or anything else.

There are actually probably many women that fit that category. But they are completely unaware of it.

Thank you.

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Mar 30, 2018 03:19PM leaf wrote:

25 years ago would be about 1990. At that time, I think most of the LCIS women would have been advised to get bilateral mastectomies. (They didn't have enough information about the outcome of LCIS women who did NOT have bilateral mastectomies.) Pathologists were just starting to consider there may be various types of LCIS. I think that tamoxifen and other antihormonals had only been used in women with invasive breast cancer at that time. I think no one had done studies with anti-hormonals for high-risk women who had never had invasive breast cancer.


Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 30, 2018 05:00PM Lea7777 wrote:

Thank you Leaf. Your complete response ironically reveals the very incomplete knowledge about living cancer free for years with LCIS.

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Apr 4, 2018 11:33AM NicolaSue wrote:

Yes it's quite scary isn't it - on the one hand LCIS isn't cancer so you could just forget about it. On the other hand no one really knows what is going to happen long term. I'm one year out from my LCIS diagnosis and I've opted for nothing other than annual surveillance. Granted that surveillance is at a specialist cancer hospital (I'm in the UK). I can't say I feel entirely comfortable but I don't see convincing justification, in my case, for anything else.

LCIS diagnosed Spring 2017. Vacuum excision biopsy. First follow up mammo 2018 - clear
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Apr 7, 2018 08:36PM Laleesa wrote:

Hello everyone! I wanted to share the story of my mother in law who everyone in the family told me how she beat breast cancer without chemo. I was impressed but being a nurse also curious as to what type she had and how far it progressed. Well, she never liked to speak the details of it to me, all she said was "they wanted me to cut off my tits and I did not." When I showed her my pathology report that baffled most people (the lcis within the fibroadenoma) she just smiled and said "I know excatly what this is, I have it!" She is now 83 with no other incidence of breast cancer. She does have other health issues but breast cancer isn't one of them.

I hope this helps. It did help me when I was first diagnosed in February of this year.

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Apr 7, 2018 10:02PM DearLife wrote:

Hi Lea

My story is the other way round. I was diagnosed with LCIS 20 years ago after an irregular mammogram and two biopsies. But I was told it was not cancer and not to worry about it. So I didn't. My records stayed at the back of my medical file.

In January, I was diagnosed with early stage ductal carcinoma and DCIS. Only then did I remember that I had a copy of the path report from 20 years ago.

I wish I had known enough to monitor this more closely, but as someone on this forum kindly told me, I did have 20 worry free years without major surgery or side effects from meds.

We know more today about LCIS. It definitely increases the risk of BC in future. But I am not sure I would have done anything differently, other than seek out more frequent screening.

One day, soon I hope, there will be simple blood tests to detect very early cancers and this will help all of us.

Good luck with your decisions!

I've looked at clouds from both sides now. Joni Mitchell Dx 12/1/1998, LCIS, Right Dx 1/9/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 2/25/2018 Lumpectomy: Left; Lymph node removal: Sentinel Dx 3/1/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/16/2018 Femara (letrozole) Radiation Therapy Whole-breast: Breast
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Apr 8, 2018 09:22PM Lea7777 wrote:

Best wishes, DearLife. I appreciate all the responses.


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