Diagnosed with LCIS

HollySinger3

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.

Moderators

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

Anonymous

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

HollySinger3

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.

HollySinger3

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

NicolaSue

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

NicolaSue

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

Ali84

H, Holly and Sue. I know about the anxiety that comes with LCIS, and what to do. I'm sorry you both have this stress.

I was diagnosed with LCIS with atypical hyperplasia 11 years ago at the age of 47. I had an excisional biopsy at that time. I was told then that I needed no further follow-up other than regular mammograms. Since I have extremely dense breasts I also added ultrasound. Last two years I noticed a dent in the same breast as the LCIS - mammograms and ultrasound clear both years. But because it seemed to be getting more pronounced, I was told that I should add MRI. I did genetic testing in order to see what my risk was in order for the MRI to be approved. Though I tested negative for an extensive number of genes that are linked to developing breast cancer my personal lifetime risk was 60%, mostly based on the LCIS, Atypia, and a family history, paternal aunt and her daughter, my cousin, if I add in the factor of my extremely dense breasts it brings it up as high as 85%.

High enough to add MRI to my screening regime. Did that in Dec. and on the way home got a call from my doc, yikes!, that there was a suspicious 4.5 cm tumor in the same breast. MRI guided biopsy then lumpectomy. Benign thank god, but a whole host of fibrocystic changes, (radial scar, papillomas, hyperplasia, calcifications). Because of my dense breasts none of these were seen on either 3-D digital mammogram, or the ultrasound, even when I've had diagnostic, two years running. The large tumor was causing the dimpling.

It has been a hard decision but I've decided to get a Prophylactic Mastectomy with immediate Diep Reconstruction. I am scheduled for May 25, at NOLA. I have seen a number of doctors here in the san francisco bay area, and in NOLA. None of them thought I was being overly aggressive, though I do have the option to be carefully watched on tomoxifen with screening every 3-6 months and annual MRI and thought very seriously about that, though I get migraines too so that's a concern.

The thing is that this last business started in December, and the surgical biopsy wasn't until end of March. That was three months of worry before I knew it was benign. So whether or not I ever go on to develop breast cancer, I will have to be watched so carefully that I will surely be undergoing more biopsies over the years since anything that lights up on the MRI will have to be removed to be sure. More waiting, more stress. Not for me.

I know it's very scary because sometimes it all just seems like guesswork, and it's all very subjective. The thing to remember is that you have time to figure out what to do. LCIS is not cancer, but a marker that you are at an increased lifetime risk. There are lots of factors that factored into my decision, not just the LCIS. Genetic testing is helpful. Talking with a top breast specialist or two (or 6 like I did !), asking for review by a tumor board etc. are places to start. Just be proactive.