LCIS on biopsy - just had MRI, have questions

Beacon, MRI is very sensitive for picking up invasive disease. It's so sensitive that some oncs don't like to use it b/c of the high false positive rate. It's not 100% fool proof, of course, but it's more likely to pick up something benign than it is to miss something malignant.

I was dx after papilloma excision.  Next appt with bs is 9/30.  I wish he would have scheduled me for mri for other side now that plcis found in rt.  Seems like a long wait until next appt.  He was going to bring dx to board for discussion.  Most likely will have the 3 options:  careful monitoring, tamoxifen, or bmx.  I'm not crazy about going on tamoxifen.

With LCIS and nothing worse, the goal of an excisional biopsy/lumpectomy after a core biopsy/fine needle biopsy shows LCIS (and nothing worse) is NOT to remove all the LCIS.

The goal of an excisional biopsy/lumpectomy after a core/fine needle biopsy shows LCIS is to help make sure there isn't something worse going on in the area.

The goal of an excisional biopsy is NOT to remove all of the LCIS for several reasons.  It is not possible for a surgeon to remove all the LCIS without doing a mastectomy. The reason: LCIS usually does NOT show up in mammo or ultrasound, and it does not reliably show up in MRI.  The surgeon doesn't know what to excise.  So they would not be able to remove all the LCIS unless they biopsied every part of your breast, which would be a mastectomy.

Its also not a goal to remove all the LCIS (for patients with LCIS and nothing worse).  In patients that have LCIS and nothing worse, and subsequently get breast cancer later, the breast cancer often occurs not at the site of LCIS, but in normal-appearing tissue.  The risk from LCIS is bilateral, so, unless other information becomes available, they usually recommend bilateral treatments (if any.)  LCIS and nothing worse confers an increased risk of breast cancer to BOTH breasts.

LCIS is a weird disease.  They don't understand why.

LCIS (and nothing worse) is different than DCIS, and is treated differently.

Well, it depends on your comfortable zone of risk.  You may be at somewhat higher risk in the year or so after your excisional biopsy for LCIS because it is possible they could have missed something more severe going on.

While this thread gives you some idea how poorly we understand the risk of breast cancer, even for 'the average woman' who has never had breast cancer http://community.breastcancer.org/forum/47/topic/692321?page=1#idx_8

Based on the findings of this study, 10 years after an LCIS diagnosis, about 7% of women will be diagnosed with invasive breast cancer. http://www.breastcancer.org/research_genetics_111005.html
and in this paper about 1.2%/yr http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum 

You can never be completely safe.  We don't know when we will be killed by a meteor.  We could have the sun not come up tomorrow morning, though that would be extremely unlikely, but possible.

<2% per year, even if it is a rough estimate, is a fairly low risk in my book.  Most surgeons want you to really be comfortable with a decision for PBMs, because it is permanent, of course.  

I had mammo-guided wire insertions (because I had 'suspicious calcifications'.)  I don't want to scare you, but I had a rotten time with the wire insertion.  However, you must take into consideration that I had PTSD at the time (and didn't know it) from multiple traumas and a dysfunctional family starting shortly after birth.

I did a survey here after my excision to find out how people fared with regard to pain.  I asked people to grade their pain on a scale of 1-10, 10 being the worst pain imaginable. These were my survey results (in mid-2006).  (I think that most of the time the 'injectable anesthesia is the injection a local anesthetic into the breast, not an IV pain killer.  I was told after that they can't give injectable IV analgesic at my facility for wire insertions because they don't have an RN available to monitor you.  I don't know how it goes at other facilities.)

Injectable anesthesia before wire insertion and pain score <=4/10: 19 people (50%)

Injectable anesthesia before wire insertion and pain score >4/10: 7 (18%)

No injectable anesthesia before wire insertion and pain score <=4/10: 3 (8%)

No injectable anesthesia before wire insertion and pain score >4/10: 9 (24%).

In my case, I knew if I would have told him I was in pain, I would have cried, and if I cried I would have moved.  (I was instructed to 'not move a muscle' throughout the wire insertion and check of the wire placement.  I don't know how long this lasted, but it felt like about 1.5 hours.)

If I have to have another one, I will take some nonverbal instrument, such as bells, to ring in case I have pain.  I will tell the radiologist shortly before the procedure starts. That is my psychology.  Many people told me I should have just told him I was in pain.  But I couldn't do that without moving my chest. We all have different psychologies.  Differences need to be respected.

So most people do OK with wire insertions.  No one should have a painful procedure, even if it happens once in a million times.  They should ask you if you are having pain.

beacon800 and LeeMcC : I've had alot of similar experiences/results as you two (and many others probably).  My area of LCIS was large too (5 cm) along with Radial Scar, Sclerosing Adenosis, Columnar Cell Change & Apocrine Metaplasia and Dr's have been surprised at the amount of LCIS WITHOUT something INVASIVE in addition.  For which I was RECOMMENDED by my ONCOLOGIST to have radiation, so I did.  My slides were re-read too & they also found Atypical Ductal Hyperplasia, Atypical Lobular Hyperplasia.  I've also had 2 separate lumps come about in my right breast and have had two lumpectomies in it, one at 3 o'clock which also came back with Columnar Cell change and Apocrine Metaplasia and one at 1 o'clock. I also have dense breasts (and now lots of Scar Tissue which makes them hard to 'read), and I'm Small Breasted not even a B so now after two lumps removed there's hardly a breast at all.  I've also been told the LCIS and/or something Invasive will occur in the right breast as well.  1 Dr. even said I'm playing Russian Roulette!  And that he doesn't even see 1 case of LCIS per Year.  So I have 3 Dr's recommending bi-lateral mastectomy.  (I've had one Grandmother with Uterine Cancer, one Grandfather die of Lung Cancer and one of Bone Cancer)  I've also had Severe Cervical Dysplasia for which I had a Leep and D&C (and 3 weeks ago had a Hysterectomy with a 'Complication' a CUT Bladder).  I'm pretty scared about Not having a mastectomy, but have many issues happening currently and struggle with the decision.  I wish everyone good health and wellness. 

LeeMcC :  Thank you.  I'm gonna be 40 in 5 days.  I have a 3 year old tho' that I'm so fearful of what will happen in the near future.    When I met with the Plastic surgeon discussing mastectomy, he also said I'd have to do the DIEP at least for the left side which was radiated.  And could do tissue expanders on the right side.  (But then I wonder how 'Similar' will they appear afterwards?  But they're not the same now anyhow after 5cm being taken out of the left and it's lopsided, and two 3 cm areas out of the right there's not much of a 'boob' there anyhow.)  I wish I could be as confident to make my decision.  Good luck to you. You will be in my prayers.

Hi Kolette  --- Did the BMX pathology report say there was anything there besides LCIS? Even though I'm confident in my decision to have bilateral and reconstruction, I'm so interested to see what actually is found (more LCIS? more cancer?). So glad to hear you are healing well and looking to move forward.  I've decided on DIEP, and I'm getting it scheduled tomorrow -- hopefully for mid-September.

Lee