Time for a formal Hello!

Hi Jill!  I can't be of much help since I was only dx'd with LCIS & ALH three weeks ago.  I meet with the Oncologist tomorrow.  No nipple pain for me!  Personally, pain in my nipple would scare me.   Good luck with your follow up MRI.

Hi Jill. I was diagnosed with PLCIS after an excisional biopsy for what was thought to be a fibroadenoma. I did not have the pain that you've described.  I have to agree that LCIS is controversial and a bit maddening.  Since diagnosis I've heard a variety of medical opinions about what LCIS is and isn't.  In the end, I was put on an every three month imaging schedule (which of course sometimes led to other biopsies) and the anxiety became more than I wanted to deal with and I had a preventative bilateral mastectomy two months ago.  I wish you well as you navigate this breast disease and am happy to help in any way I can.

All the best,

Kelly

Hi there!  I'm sorry you had to join this community, but I'm glad you're here.

I'm so sorry you are going through breast pain.  I wouldn't wish that on anyone.

Have you read websites such as the Mayo about breast pain?  Unfortunately, it says that breast pain is common,  and they usually can't find a cause.  http://www.mayoclinic.com/health/breast-pain/DS00760

Unfortunately, LCIS (without anything worse) is not common, so there are few studies, and what we know is often older data.   There is little that is NOT controversial about it. (One 2006 paper found about 7 times more DCIS patients than LCIS patients in their SEER-based study.)

The subject of breast cancer risk evaluation is in its infancy, to say the least, at least for an individual.  When I was trying to find out my risk of breast cancer having LCIS and nothing worse, I came across this article.  It supported what my GP thought - that we really don't know (perhaps with the exception of women with BRCA or a strong family history) WHICH individual women in a group will get breast cancer. http://jnci.oxfordjournals.org/content/98/23/1673.long   If its this hard to predict breast cancer in the general population, just think how hard it is for a small group of LCIS patients.

So we are all individuals and make our own choices.  I do not think it is ANYONE's place to judge what treatment a person chooses; I only would hope it is an informed opinion (checking out both reason and emotion, knowing a rough estimate of her risk, and her estimate of the risks and benefits of each choice.)  

Hi Jill,

I live in Bountiful - haven't found anybody from Utah on here - so welcome!!  When I was diagnoised last year with ALH - I took my mom (who had breast cancer) up to the Huntsman Cancer Center - she was tested for BRCA (negative), the genetic counselor figured my risk of getting breast cancer at some point was 40%.  The surgeon sent me to an oncologist who wanted me to take Tamoxifen for 5 years.  I have had several fibroadenomas - no pain, all removed.  The surgeon said they would monitor me closely (MRIs) and anything suspicious would need to be biopsied.  I decided I didn't want the worry every time I had a MRI, and I wasn't too excited to take Tamoxifen so I asked if masectomies were an option - she said yes - so that's what I had - and I have been very pleased with the outcome.  No Tamoxifen, no mammos or MRIs and a lot less worry.  I had surgery at St. Mark's and loved my surgeon and plastic surgeon.  I was able to have nipple/skin sparing masectomies.  Let us know how your MRI turns out -

Hugs from Utah - Valerie

Jill, I was diagnoised January 2010 at age 49 (took a few months to think about the options), and on May 6 it will have been a year since my first surgery, had the exchange surgery in October.  Let me know if you have any questions.

Valerie:  I had my pbm on 4/18/11.  Friday I go to the PS for the start of the fills. I was just wondering when you had the exchange surgery, did you have drains and how long was the surgery.  How about the recovery after exchange.