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All TopicsForum: LCIS (Lobular Carcinoma In Situ) → Topic: Diagnosed with LCIS

Topic: Diagnosed with LCIS

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

Posted on: Mar 16, 2017 09:09PM

HollySinger3 wrote:

This is my first post. I was recently diagnosed with LCIS and Atypical typical lobular hyperplasia. I had a lumpectomy and my surgeon sent me to an oncologist to start some type of hormone therapy. I have had many biopsies since 2004. (2 simple cyst drainage, 1 mri biopsies for calcification, 5 ultra sound guided biopsies and 3 open excision biopsies due to high complex cysts with blood, radial scars, and a typical lobular hyperplasia cells.) I was also diagnosed with atypical lobular hyperplasia cells in my right breast back in 2007. Now back to my current diagnosis in 2-27-17. I now have extensive LCIS and Atypical lobular hyperplasias cells found in an excision biopsy. The oncologist now wants me to start on a hormone therapy. I had an emergency partial hysterectomy the day my daughter was born but still have my ovaries. They are doing blood work to see if I went through menopause because that will widen my options of what type of hormone therapy would be best for me. I am scared of Tamoxifen because I have a family history on my mom's side for strokes. I myself get vascular migraines. The only breast cancer history is a paternal Aunt who got bc in her 70's, another paternal aunt that had ovarian cancer in her late 60s. I'm so confused and don't know what I should do. The oncologist is also ordering me a bone scan and wants a mri done. I feel like there is something still lurking in my left breast because it's still so sore and I feel lump like cysts. My left arm pit also hurs but I don't feel any lumps there. I see my breast surgeon again tomorrow and I'm going to see if I can have a mri sooner than later. My lumpectomy was over a month ago. Does anyone have any advice for me. I'm so worried and feel helpless. I just hope I'm making right decisions about hormone therapies. She wrote down 5 possible choices even though she like tamoxifen the best it seems. Thank you.

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Mar 16, 2017 10:00PM Moderators wrote:

Hi Holly-

We're so sorry you've joined us here, but we hope you find the support and advice you need during this time. Have you tried reading through or posting in our Hormonal Therapy forum? Lots of knowledgeable members there who may be able to offer some insight: https://community.breastcancer.org/forum/78

We hope you find some guidance!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 17, 2017 10:28PM awb wrote:

Holly--I would wait and see what the MRI says. If they find you are post-menopausal, you will also have the option of evista or aromasin I was diagnosed with LCIS over 13 years ago and my combined risk is further elevated by family history of ILC (my mom). I took tamoxifen for the full 5 years, and have taken evista on and off of over 7 years now, fortunately. i tolerate both meds well with minimal SEs. Both tamox and evista have a risk of stroke and blood clots, but it is very very low, <1%, and you can lower that risk even further by taking a baby aspirin a day. Aromasin is an AI, which has its own set of SEs. So its all a balancing act, risks versus benefits. To me, the risks of the meds are extremely low compared to my risk of invasive bc .

Anne

"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 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Mar 18, 2017 07:13AM HollySinger3 wrote:

Thank you Anne for your reply.  I saw the surgeon yesterday and I will not be having a MRI until June.  My lumpectomy area will take until then to heal.  My oncologist said she will prescribe Arimidx for me since I'm post menopausal and I have a family history of strokes etc.  I have a scheduled bone scan on Friday 3/24, then I will give this one a try. I'm trying to trust the doctors advice and give it a try.  I just hate taking medication for which there are so many side effects for. 

Thank you for your reply.  I'm sorry you had to go through all that you did.  Holly.

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Mar 18, 2017 07:15AM HollySinger3 wrote:

Thank you for the suggestion I will definitely read those posts.  Holly.

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Mar 19, 2017 11:07AM NicolaSue wrote:

Holly, similar position to me. It's scary and I'm still taking it all in. LCIS diagnosed about a month ago. Last child was 2014 and cycle was all over the place but Caeaerean was 4 hours so possibly damage to ovaries thus went on hormones to regulate cycle. Now have been advised to take chemoprevention but like you can't know which drug is best until menopausal state established. So last Tuesday I stopped taking any external hormones and I'm just waiting to see what happens. I am struggling with the seriousness of this all and yet on other days tell myself it's not cancer but a warning of it potentially. I'm in the UK so we don't have as much surveillance as you I believe. I'm paying to have an MRI privately as this wasn't routinely offered to me. Sue

LCIS diagnosed Spring 2017. Finding my way slowly.
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Mar 19, 2017 11:08AM NicolaSue wrote:

Holly, similar position to me. It's scary and I'm still taking it all in. LCIS diagnosed about a month ago. Last child was 2014 and cycle was all over the place but Caeaerean was 4 hours so possibly damage to ovaries thus went on hormones to regulate cycle. Now have been advised to take chemoprevention but like you can't know which drug is best until menopausal state established. So last Tuesday I stopped taking any external hormones and I'm just waiting to see what happens. I am struggling with the seriousness of this all and yet on other days tell myself it's not cancer but a warning of it potentially. I'm in the UK so we don't have as much surveillance as you I believe. I'm paying to have an MRI privately as this wasn't routinely offered to me. Sue

LCIS diagnosed Spring 2017. Finding my way slowly.

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