Dense breasts, LCIS, no kids.........Where to go from here?

SimplyAudrey

I recently had a myofibroblastoma resected from my right breast.  Sure enough, LCIS in adjacent tissue.  My docs are playing with calculators and report an assessed lifetime risk from 15 to 20% to greater than 85% - they don't see eye to eye evidently.

NO family history.  Mine is a "Tumor Board Poster Case".

SERMS are not an option - had a blood clot from OCs.  So, do I play the hypervigilant waiting game and do the digital mammogram/MRI , or do I pick door number three and go agressive with a prophylactic mastectomy?  Throw a known anxiety/panic issue (treated) on top of it and I'm a mess.  Whatever I do, Marvin the chain-smoking Anxiety Monkey that's jumping on my shoulder needs to go back in his cage.

Thanks to those who read this and choose to share their thoughts!

loriio

Hi Audrey.  There is an LCIS board that you can check out where there is lots of "lively" discussion.  It seems to me most people find the stats that support their decision.  The thing to remember is that everyone's pathology is different so there is no "one size fits all" approach.  Which really sucks.  I was diagnosed in March and spent quite a bit of time visiting different doctors.  Including a BS at MD Anderson in Houston.  In my case, all agreed what my best course of action is.  It sounds like you've seen more than one doctor and it's unfortunate there is not a consensus.  The biggest thing to remember is that you have some time to decide.  I recommend finding a doctor that you feel comfortable with and trust.  If you have friends that have had cancer, get opinions on doctors.  If there is a breast center at your local hospital, schedule an appointment with the nurse navigator.  Don't spend too much time on the internet.  At some point, you need to trust your doctor, and yourself.  LCIS is confusing.  I called it "no man's land" when I was first diagnosed because it's ridiculous to me that I was told in one sentence, "It's not cancer."  And the next sentence was, "You should consider Tamoxifen or a PBMX."  It's bizarre.  Just take your time, and make the best decision for you.

Best of luck!

Lori 

Blessings2011

SimplyAudrey - Welcome to the forum! I'm so sorry you are going through this, especially with your other issues.

Are your docs giving you only the options of hypervigilance vs Door Number Three?

I can't respond to the issue of LCIS, because I had DCIS in the left breast. But I also had a microinvasion of IDC (invasive cancer) there as well.

I was offered many options in the beginning, starting with a lumpectomy with radiation. But for MANY reasons (multifocal cancer - in two different places, Mom had BC, I had huge, dense, fibrocystic breasts that made mammos difficult and self-exams impossible, and my radiologist had her suspicions about the right breast) I chose Door Number Three.

I took an agressive stance for a small, early cancer. In December I had a bilateral mastectomy, with immediate reconstruction. (The right turned out to be a prophy.) I had no lymph node involvement and all my margins were clear. Right now my risk of recurrence is less than 1% - 2%. Losing weight has further reduced that risk another 23%. And once I start the Arimidex in the fall (no guarantee I will stay on it) that will reduce this tiny risk by another 50%.

 I had tissue expanders placed at the time of my mastectomy, and in September, once I've attained my goal weight, will have my permanent (perky!) saline implants placed.

I've never once regretted my decision. I went into the surgery with great peace of mind, and that has never changed. I know it was right for me.

For you, other options may be more appropriate. Read all you can, investigate all you can. There are SO many options out there, especially when it comes to reconstruction.

If you have an anxiety/panic disorder, then you are probably already taking anti-anxiety meds or seeing a therapist. If not, now would be a good time to start.

And give Marvin a big smack and send him back to his cage.

Wishing you the best!!!!

SimplyAudrey

Saw a medical oncologist today to discuss - she found a new "lump" in my left breast.  MRI here we come.

Probably not a game changer (she doesn't think it's serious), but I made a deal with myself if I needed another biopsy I am opting for a PBMX. 

One day at a time.  One step at a time.

~sigh~

Needinfo

I have recently been tested and positively for PALB2.  I too have started smoking after 15 years without.  I also have issues with depression.  I am completely alone now.  I lost my husband due to renal cell carcinoma about 5 years ago.  We did not have any children.  I do not have any family left so it is just me.  I run a restaurant where I have to depend on today's young work force and their lousy work ethics to get by and since Randy passed, even work is not the same.  They lie, cheat and steal from me if I am not there.  I have been physically abused by staff and am so tired of it all but the business I run was basically inherited and I have been working there since I was 11 years old.  Not a candidate for so much as unemployment, due to the incorporation of the business that brother's persuaded mother to do with business before she died.  Everything is just so unsettling in my life, it seems.  I try not to get on the pity pot but really getting tired of having nobody to talk to.  I appreciate that you are here to share what you can.  I realize that there is no right or wrong decision to choose from but just can't really wrap my mind all of this to make a decision.