Widespread ADH, mucocele-like lesion, bloody nipple discharge...

Lotusconnie

Hi all,

I first came here in Feb 2009, when I was 31, diagnosed with fairly widespread ADH and mucocele-like lesion. 

I accidentally felt a lump in my right breast in 2008 and later found to have a fibroadenoma by core biopsy. I had an excisional biopsy of the fibroadenoma in 2008 and found to have ADH outside of the fibroadenoma. Then in April 2009, when I seek 2nd opinion at Dana-Farber, mammogram showed loosely clustered microcalcifications. A 2nd excisional biopsy showed fairly widespread ADH.  

I have been having screening mammograms and MRIs about once a year since 2009.

From 2009 to 2011, I had to have 5 cycles of treatment for infertility including 3 rounds of IVFs...It was quite painful as I knew large doses of hormonal treatment were not good for my breasts, while I want to have kids. We are really grateful that, eventually I got pregnant naturally on my own in 2011 when I started a busy job. 

Before I delivered my first child in 2012, I had bloody nipple discharge in the 3rd trimester. It was unilateral. I had to wait till after delivery to have mammogram and MRI. 

This year I am pregnant with my 2nd child, and my due date is in Dec. I felt axillary lumps, one on each side. I had ultrasound last week which showed a small dermal mass with nearby lymph nodes in the axillary area bilaterally. I had a similar dermal mass on the right side in 2012. However, this time the dermal mass does have some concerning features like it has blood vessels and no clear tract to connect to the skin. Without biopsy, nobody can be sure what it is. Currently, as the nearby lymph nodes appear to be fine, my surgeon is not planning to do FNA on the small dermal mass. I will have MRI postpartum next Jan, and see him and the high risk clinic doctor soon after the MRI.  

I am 36 now. My life risk is 40% by Gail risk model. As you can imagine, PBM, tamoxifen, or screening tests every 6 months (which I should be doing) have been on my mind for quite some time. To go through all the above events has been scary. 

Frankly, I am hesitant about PBM which is a major surgery. My work schedule did not allow me to consider it either (I was in a residency training program). Although I totally agree how regretful I would be if I will be diagnosed with IDC. Since it is a major surgery, I am on the fence about it at current stage. I am still thinking about it. I will need my doctors' help on that.

However, my biggest concern is that I cannot catch BC early enough by screening tests due to dense breasts. For example, I developed axillary lumps, which could be Stage III BC or above with lymph node involvements already. Due to my relatively young age and supposely stronger hormonal status especially during pregnancy, that will promote a poorer prognosis. This kind of thoughts saddened me so strongly...rushing into my mind, such as "I cannot see my children grow up"..."I have only a few years to live"...etc. 

I am leaning towards tamoxifen starting next year after I deliver my 2nd child. I just hope that I could still have the chance to take tamoxifen, before my current issues would turn into IDC...Keep my fingers crossed.

One of my friends told me before - "try to manage your anxiety as much as possible". I am telling myself of this, slowly, repeatedly. Take one day at a time.

farmerlucy

Lotus - I am sorry for all the angst, especially at such a magical time in your life. I know how onerous the high risk screening can be, I did it for almost twenty years. Tamoxifen sound like a very good choice, especially since I learned on these boards that it can reduce breast density in just six months. You might check in with awb, she had LCIS and a scary family history, took Tamoxifen, and is now taking an AI preventively. She has not had invasive.

I take Tamoxifen, and while I don't like taking it, I'm glad it is available. My DD is high risk, and if something comes up on her screening in the future, I would seriously implore her to try the Tamoxifen.

Don't let your mind carry you away to the worse case, it only robs today of its joy. Come back and let us know about the new little one!

Lotusconnie

Farmerlucy, thank you very much! I read your reply several times. Thanks a lot.

Lotusconnie

Hi, farmerlucy and all,

I had my second son in Dec. We are doing okay. I planned to have breast MRI this month, however, the radiologist would rather me to wait after my period resumes, due to the effects of lactation. And my breast surgeon agreed.

Now I am waiting to see my doctor at the high risk clinic next week. I will ask if she can order a mammogram for me. I read about the topic of "Selective estrogen receptor modulators and aromatase inhibitors for breast cancer prevention". I fit with two of the criteria as below.

1. Age over 35 years with a history of lobular carcinoma in situ (LCIS), ductal carcinoma in situ (DCIS), or atypical proliferative lesion of the breast (atypical ductal or lobular hyperplasia).

I have widespread ADH, as well as other atypical changes. I am 36.

2. Women between 35 and 59 years with a Gail model risk of breast cancer ≥1.66 percent over five years

My calculated risk is 1.8% over the next five years (Of course when it occurs, it is 100% instead).

 

So I will also ask if my doctor is willing to put me on tamoxifen now, instead of when I reach 40 as we discussed previously. My only problems are the side effects and whether I can handle them or not.

Any input is appreciated!

 

 

 

farmerlucy

Thanks Lotus for the update! Congrats on the new little one! How wonderful! It sounds like you have excellent docs following you. Your plan sounds very well thought out. I encourage you notto read too much about the Tamoxifen side effects, try it for yourself. If the hot flashes are too severe a low dose antidepressant can help. I'm wishing you NO side effects AND freedom from anxiety. Take care and let us know how you're doing.

Lotusconnie

farmerlucy,

Thank you very much! I hope so. I really feel there is always a lot of wisdom in your words.

I will need to go through the imaging tests first, before I talk about prevention. Keep my fingers crossed...I guess the anxiety before imaging tests and biopsies are so common and strong among us all on this board. Thanks for the support everyone is giving to each other.

Connie

Lotusconnie

I saw my breast surgen and medical oncologist at the high risk clinic last Friday. Basically they said that it is not "if" but "when" I should start taking tamoxifen. My MO prefers me to start at age 40 or 45. Eventually we reached at a common point that I will continue with the high risk screening tests for now, and start tamoxifen in a few years...Just hope this plan would work...keep my fingers crossed.

I had a mammogram with tomography and bilateral ultrasound today. Thankfully, it was fine. This BCO forum has got me through a lot of nights when I feel anxious and lonely...especially for the several nights before today.

I wanted to get some input from anyone who is undergoing high risk screening with MRI with IV contrast, alternating with mammogram.

I would like to discuss about the risk of nephrogenic systemic fibrosis (NSF) developed from the IV contrast gadolinium. I understand that it is rare, that with normal kidney function it should be okay. However, it has been in my mind when I think of MRI with contrast every year, hopefully for quite a long time. That is a lot of IV contrasts. I don't know if it makes sense to have mammogram every year, but MRI every 2-3 years instead due to the gadolinium issue? Or I am too cautious? Given the benefit over risk ratio that MRI is very sensitive and could potentially catch disease early?

Prayers to everyone here.

 

 

farmerlucy

Lotus - yikes! Here is a thread re: MBI/BSGI a new screening option for dense breasts. Purported to be about 1/3 the cost of an MRI. I emailed the companies to find the closest machine to me (three hours) but may be worth it to travel. I had my fifth MRI today, I've never given a second thought to the testing. Best of luck! I'm glad your docs were so helpful.

https://community.breastcancer.org/forum/73/topic/...