Just dx'd and considering options

Mykidsmom

To tell you the truth, I am very surprised to be writing w/ this question. I just found out yesterday that I have LCIS. Initially I was pleased, at least my dx is still IS and not invasive. After all the tests and bx's over the past 6 months, it is good news. My surgeon tells me that LCIS essentially means that I have a 1 in 3 chance of invasive BC, which may be a little higher for me due to my family and personal history. The treatment is close observation - MRI's 1 x year and mammo's 1 x year (actually, I already get mammo's 2 x year due to worrisome findings on my mammo's). And regular BSE and professional exams. In addition, I should take tamofin for five years.
 
Here is my concern. My mammo's always indicate very dense breasts (I am 54, so I guess that is not going to change). My BSE and professional exams are not clear because of lumpy, cystic breasts. Tamoxofin increases the risk of hot flashes (something I dealt with for years and just finally got over and started sleeping three months ago) and the risk of endometrial cancer. I have a personal hx of uterine polps which have required surgery twice, so endometrial ca definitely concerns me!
 
So... I am wondering. Do I want to keep my breasts? My husband and I would both prefer that we take the best approach to keep me around, the breasts are not critical for our lifestyle.
 
I did not talk to my surgeon about this yesterday, I was still trying to digest the news. I will see an oncologist in a couple of weeks and can discuss it w/ him then, but I am still trying to get my arms arounds a dx of LCIS and trying to determine what is means to me. Initially I think I will try close observation, but I am definitely considering a proph. mast. And I am not very sure about taking tamoxifin. Sorry this is so long, I am still new to this dx.  - Jean

amberyba

I understand how you feel, I am so thankful that you have Insitu, I too have dense breast and they are very difficult to examine, almost don't want to examine because you are always feeling something different.

I am trying to figure out why your doctor is wanting you to be on tamoxifen, are you premenopausal? It sounds like you have been through HOt flashes...the treatment for BC is more precise and helpful now adays, but while you are making your decision, know that many BC gals go thru with all their doctors reccommendations and some do not.

I too have a strong Family history...

My sister had invasive and has been in remission for 9 years and refused the hormonals even though she was strongly er/pr+.  My cousin couldn't complete chemo either and has been in remission for many more years than my sister. She was very quiet about her BC and didn't tell many family members.

I have weighed the use of tamoxifen quite a bit, It really only helps my BC recurrence by a small percentage, so after much consideration I have decided to use it for at least 3 months, and based on lab work and menstrual symptoms to decide from there....I am taking CoQ10 to hopefully help with side effects.

One thing that helped my sister to decide about a mastectomy was that her doctor told her that if the cancer is going to come back and has no breast tissue to grow in then it goes to the lungs or other places. and that the breast was a better place to have it come back. My surgeon didn't totally agree when I shared this with him and when I mentioned my sister doctors name, his face lit up, because he knew and seemed to respect this doctor. Having a mastectomy or lumpectomy has no guarantees when you consider recurrence.

I had invasive DC, and had the partial mastectomy with radiation, my oncotype score was so low that chemo was not needed, while going thru radiation, I wished that I had had the mastectomy. the pain and swelling of my BC breast, and also fear of the side effects of radiation were overwhelming, now 2 months later I am glad I kept my breast.

So, it is a very emotional decision. My husband was and is very supportive in helping me make decisions. My faith has been my strength as well.

One thing for sure is that you will be closely monitored. I examine my breast daily now, especially after reading about Susan Weed, and her recommeded breast health. I limit time that I wear a bra as much as possible, I do find odd lumps now and then and I do have pain and swelling from surgery and radiation therapy, but I see my onc every 3 months and he will examine me and keep a close Eye on things as well.

LCIS is tricky, but I think having IS give you good options, and that you are 54 I think is good. I am 43 and my sister was 32 on dx.

HOw lage or small was you LCIS? and how were your hormone receptors?

Good luck on your decision and remember that you don't have to rush on any decision, research all your questions and ask a multitude of questions, I think it is wonderful when you are able to have time to read up on issues before you go to your oncologist.

God Bless,

Amber