LCIS found after elective mastectomy

lynnms3

I just had an elective LMX after a complex cyst tested positive for atypical cells.  Prior diagnosis in 06/12 was multifocal ILC on right side which resulted in RMX on 07/12.  Dr recommended a lumpectomy after the atypical cells were found in a complex cyst on the left side by I insisted on MX instead.  There is no way I was starting to do lumpectomies only one year after the first diagnosis.  The pathology from the second masectomy found a single focus of LCIS.  My original ONCO type came back a 5 and I have been taking a half dose (10 mg) of tamoxifen due to pretty bad side effects.  My question is anyone in a similar situation?  This LCIS finding just reaffirms to me that I made the right decision by having the second masectomy.  What do you think my risk of this coming back is in either side?  Is anyone else in the same situation with terrible side effects from tamoxifen?  Anyone taking a half dose?

Anonymous

How long have you been on the tamoxifen? And what SEs have you been having?  It often takes a few months for the body to adjust to it.  (I was diagnosed with LCIS almost 10 years ago and took tamox for 5 years and now take evista; my mom had ILC many years ago and also took tamox for 5 years). I don't know what the risk is of reoccurence after BMX, what does your oncologist say?

anne

lynnms3

Hi,

Thanks for getting back to me.  I started tamoxifen in 08/12 and took 20 mg for over two months.  Went off while I had radiation until 11/12.  Felt horrible during those first months.  Basically every side effect listed I had. Severe bone and muscle pain, cramping, headaches, dry skin, leg cramps, hair shedding, etc.  When I went back on it in 11/12 I started and half a dose and tollerated it pretty well.  I tried to work up to 15 mg a few times but the side effects started to kick back in.  My oncologist said that she could live with 3/4 of a dose (15 mg) since I am only 5' 2" and 110 pounds but that there have been no studies done on anyone taking less than a 20 mg dose.  I have not been getting my period.  What is your follow up with regards to mamograms and ultrasounds?  I assume I do not need them since I have had the bmx.  Have appt with surgical oncologist in two weeks to review full pathology.  Just talked to his nurse today.

leaf

While I can't find any studies that look at low dose tamoxifen after BMX, there are studies that suggest that low dose tamoxifen has a beneficial effect after excision (not BMX or MX) in ductal intraepithelial neoplasia. http://www.ncbi.nlm.nih.gov/pubmed/23532115 .I don't know what the actual article says, but they just talk about 'breast events' as an endpoint.   I don't know what exact dose they mean by 'low dose', but studies suggest that both low dose and even topical tamoxifen can  affect biomarkers in the breast.

This Cochrane study suggested that tamoxifen was beneficial in ER+ early stage breast cancer women (this is NOT of LCIS) irrespective of tamoxifen dose. In the trials of about 5 years of adjuvant tamoxifen the absolute improvements in 10-year survival were 10.9% (SD 2.5) for node-positive (61.4% vs 50.5% survival, 2p<0.00001) and 5.6% (SD 1.3) for node-negative (78.9% vs 73.3% survival, 2p<0.00001). These benefits appeared to be largely irrespective of age, menopausal status, daily tamoxifen dose (which was generally 20 mg), and of whether chemotherapy had been given to both groups. http://www.ncbi.nlm.nih.gov/pubmed/18843611

This paper said Pharmacokinetic and pharmacodynamic (surrogate end point biomarkers) studies showed that a lower dose of tamoxifen (such as 5 mg/day) does not affect the drug's activity on several biomarkers of both cardiovascular and breast cancer risk.http://www.ncbi.nlm.nih.gov/pubmed/11795343  These aren't the hard endpoints (recurrance of breast cancer or survival rates), but those studies would require a lot of time and a large number of patients, especially in lower-risk women (as opposed to women with more advanced disease.)

Crescent5

I do not understand your question, I'm sorry! We have somewhat similar stats so I think I should try. Is your concern distant metastis? If that's the case, the lcis finding doesn't matter. The ILC presence trumps that.

My oncotype was 6 meaning there's a 5% chance of recurrence with tamox. Anne is absolutely correct to ask how long you've been on it. I hate to tell you that 2 months is just the warm up. It takes a good 3 months for your body to start to get used to it. One year later, I sometimes forget that I'm on it. In fact, I welcome a hot flash now and then because I want to know tamox is doing something. I was miserable at first. I'm athletic, and for months, I was limping around like an 85 year old woman. Now you can't stop me.

Different manufacturers of tamoxifen can have an effect on SEs. I'm on teva brand, and I find it to be OK. Tried mylan, and it was OK too. I heard watson-barr was awful. Find out what you were on and perhaps make a change. I just asked my pharmacist to order mylan so I could try. I see the dude once a month now, so he knows me. He was cool and ordered it, but I didn't see much difference.

If I had to be off tamoxifen completely would I be OK with that? I think so. I exercise daily, and I know that also helps. I think if your onc's OK with split dose, it would be wise to try again.

I am so sorry about your dx, and I hope you recover well from your most recent surgery.

cleomoon

Did u have a mastectomy on the right side? Or just a lumpectomy?

lynnms3

Hi Leaf,

Thanks for all of the info. Sorry for the delay in responding to all.  Life is crazy in our house now and honestly sometimes I just need a break from thinking about all this!  I will be two weeks out from my mx on Tuesday.  Actually I am feeling great.  I went for a 45 minute walk today!  Taking only ibuprofen for discomfort.  Glad to be done.  I feel very free.

The tamoxifen is a different issue though.  I am back at my oncologist in July and she will probably not be thrilled with my efforts to get up to 15 mg (which she said she could "live with").   As I said earlier, I am small - 5'2" - 110 pounts.  Seems as though no real studies done on tamoxifen doses less than 20 mg.  Seems crazy that one dose fits all?  I have been taking 10 mg since 11/12.  prior to that 20 mg for a few months.  Hate the stuff.  I guess I will give it another go and try and get up to the 15 mg soon, once things settle down from the surgery!

lynnms3

cleomoon,

Right side - lumpectomy 1st - bad margins - then mastectomy. 07/12

Left side - elective mx 06/13 after atypical cells found in complex cyst.  After mx found one focus of LCIS on left side.  glad I insisted on the mx instead of the lumpectomy my surgeon first suggested.  I am done with worrying about this. 

lynnms3

Hi Crescent 5,

Good information.  Thanks.  I didn't even realize there was different brands.  I am also on Teva.  Yes I guess my concern is that it will come back in either breast even though I have had bmx at this point or will show up somewhere else.  I am also very athletic - I exercise pretty agressively almost everyday.  It is encouraging to hear that you are doing so well now on the tamoxifen.  I also felt horrible initially.  I am not joking when I say every bone and muscle in my body hurt right down to my finger tips!  I guess I will give it another try to at least get up to the 15 mg.  Do you get your period at all on the tamoxifen?  Mine is very sparatic.  A light period every few months.

Thanks for your well wishes.  I am actually surprised at how good I am feeling.  Much easier than the first one.  Just glad it is over. 

AnnBR

I had a UMX in December 2012, after I was diagnosisd with IDC. I asked my surgeon about a BMX, and he said that medically I did not need one, but if that is what I really wanted, he would do it. I decided just to have the UMX.



In Feb. of this year I made an appointment with a PS to discuss reconstruction options. Before I could meet with him, I was required to send my records, including my MRI, to their breast clinic. Their radiologist read my MRI and noticed two suspicious areas on my remaining breast and scheduled a biopsy for the following week. After thinking about it for a few days, I decided to forgo the biopsy and have my remaining breast removed. The surgery was performed in May and the pathology report indicated LCIS. I realize I may never have gotten cancer in that breast, but I am thankful I made that decision so I never have to worry about it again, or continue with mammos, ultrasounds, etc. Even my oncologist said I made a smart decision.



Watson is the brand of Tamoxifen that I am on, and I've gotten along just fine. The first month was rough, but apparently my body has adjusted to it.



Ann