Accidental LCIS Diagnosis

• Welcome marketingmama!

I received my incidental LCIS diagnosis last year when having an intraductal papilloma removed. I understand the ticking time bomb feeling. For me, it took close to a year to pass. I've been through one round of MRI/ mammo follow up, and with each I needed further review. After the MRI, I was scheduled for an MRI guided biopsy of a suspicious spot. I was back in the MRI and being prepped for the biopsy the following week when the radiologist decided it was just an inflamed cyst and canceled the biopsy. Six months later, I needed an ultrasound after my mammogram. According to both the radiologist and my breast surgeon, I have "busy breasts", full of cysts. I believe that once you've been through the full cycle, you'll start to feel more comfortable about your diagnosis and recognize that it really is a blessing to be watched so closely.

I chose to take Tamoxifen. I've been on it for 15 months and am tolerating it well, but everyone responds differently. At 53, I hadn't had a single indication that I was nearing menopause before Tamoxifen. I had several months of bad hot flashes and foot cramps shortly after starting, but feel completely normal now.

Good luck with your journey, and remember that no two people follow identical paths or react in the same way.

Hi marketingmama :

I actually received my LCIS diagnosis after I was diagnosed with ILC of the left breast. I had an MRI to make sure that everything was ok with the other breast. When I saw the breast surgeon for the surgery consultation (had a double mastectomy on July 15th), he said LCIS was a strong risk factor for developing breast cancer in the other breast. That he would have recommended a double mastectomy with that finding alone. Felt I had the LCIS before I developed the ILC.

Once I knew I had breast cancer in one breast I knew I wanted a mastectomy. I wanted a double so that I would not have to worry.about developing cancer in the other breast. So it worked out for me. Now that it has been almost six months things are better ( not ideal but better).

As mentioned above, everbody's cancer is different. You will have more information after the MRI. The most important thing is doing what feels right for you after you speak to your doctors.

Sending hugs and good.wishes your way. 😊

Barbara

marketingmama---if you do end up on tamoxifen, make sure you check with your doctor first about the meds you already take. I think Effexor is the only anti-depressant that doesn't interfere with tamox. (but I could be wrong, so definitely check with your doctor about it). As for the "instant menopause": while tamox does have some SEs that mimic some symptoms of menopause (mainly hot flashes), it does NOT cause menopause itself. (It blocks estrogen from the receptors in the breast tissue, it does not decrease the amount of estrogen you have (the AIs decrease the amount of estrogen). Everyone tolerates it differently, you could always try it and stop if you can't tolerate it.

Anne

There's more than one antidepressant that's ok to take with Tamoxefin. I take Pristiq, and have had no problems.

I can really relate to your current distraction/fixation. When I was diagnosed last year, I found myself spending several hours a day researching, reading and printing every relevant article I could find on-line. I still search weekly, but it's no longer all consuming and I can go days without even giving it a thought. I also have a high pressure job and my focus eventually shifted back to the work at hand.

Jeannie

If you feel there is a possibility you may want to take tamoxifen, then I think its totally reasonable to talk to an oncologist. I hear that at some places, breast surgeons prescribe tamoxifen to LCIS patients. While my breast surgeon did not offer tamoxifen, I felt much more comfortable going to an oncologist.

I went to an oncologist for my tamoxifen, because in general, oncologists are trained more in (nonsurgical) medications than are surgeons. (I should say that in general surgeons do not have a great reputation for handling non-surgical issues, just as medical internists/oncologists do not have a great reputation for handling surgical issues.)

I took 5 years of tamoxfen, and I was on sertraline the whole time. At my 2nd opinion NCI-certified cancer center, they said that their LCIS patients are offered tamoxifen.

Since we have little if any idea how LCIS increases the risk for breast cancer (at minimum when LCIS is not clonally related to a subsequent breast cancer), then I think we can't be sure how tamoxifen decreases future breast cancer risk in LCIS patients.

I'm no expert, but I gather that its still somewhat controversial how important the CYP interactions are, particularly since many people are not tested whether or not they have the CYP2D6 wild-type enzyme. (I certainly was not tested, and I don't read much about people's CYP2D6 status on this forum.) http://www.ncbi.nlm.nih.gov/pubmed/14652237 I chose to select sertraline for my mental health issues as its not as strong a CYP2D6 inhibitor as paroxetine. It sounds like the drug interaction message has not always hit clinical practice though, at least in this study in the Netherlands. http://www.ncbi.nlm.nih.gov/pubmed/23760858 Note, also, that for most drug-drug interactions, only a PORTION of patients get the interaction; not everyone experiences the interaction.

Also, it may be less relevant whether or not you have the correct level of the tamoxifen metabolite, because tamoxifen is not ESSENTIAL for LCIS treatment, but is 'only' an option.

Since they can't agree as to how much LCIS increases one's risk of breast cancer, at least for any one particular individual, then the relevance of interactions becomes less well known too. When LCIS patients go on to get breast cancer, the breast cancer often occurs at a place in the breast that looks totally normal on imaging. So tamoxifen may work in a different way for LCIS patients than it dose for DCIS or invasive breast cancer.

So, what I'm trying to get across, is that, like in almost everything concerning LCIS, there is murkiness or controversy.

My bad. I meant to say 'When LCIS patients go on to get breast cancer, the cancer often occurs at a place that lookeD normal on imaging (when the LCIS was discovered).'

Clear surgical margins are not considered essential, based on the fact that subsequent invasive cancer can occur in either breast. -http://www.cancernetwork.com/oncology-journal/chal...

You are right: the object of the screening for LCIS is to detect breast cancer early.

I am one of the unusual LCIS patients in this forum (I gather) in that I only get twice-a-year clinical exams and yearly mammograms (This is what the NCCN recommends (with or without antihormonals, or bilateral mastectomies; unlike awb I have only a weak family history.) I completed 5 years of tamoxifen. I started out with imaging every 6 months or so for the first few years, mainly because at my institution, even if a biopsy is benign, they want to follow up with imaging in 6 months.

They often do much more frequent imaging at first because its difficult/impossible to detect breast cancers early on that may be present in a different location at the time of the LCIS diagnosis. They estimate most breast cancers (with the notable exception of the rare inflammatory breast cancer) have been in the breast for some 5-10 years (not a typo) before they can be detected by ANY means. Since I was diagnosed with LCIS almost 10 years ago, if I had invasive breast cancer present when I had my LCIS diagnosis, it would almost certainly be detectable by now.

Since you've had your uterus removed, blood tests can tell you if you are pre or post menopausal.  If you are post, than AI's (aromatose inhibitors) are another option, so you may want to research those drugs also. If you chose to not do any drug, there are natural ways to try to reduce your estrogen such as losing weight and avoiding plant based estrogen such as soy. There's a thread on here on this topic. 

Hello everyone,

I was diagnosed with LCIS 2000 at age 37, I had a screening mammogram that showed micro calcifications and the subsequent resection showed the LCIS. My 41 yr old sister developed invasive DCIS at the same time. We are both well after 14 years however another sister developed DCIS and invasive papillary carcinoma currently. My first sis was tested for BRCA and was neg. My second sister is going to have genetic testing also so we will see where we will go from there. Incidently I have an older brother that passed from Prostate cancer and our father, age 71 of pancreatic.

Since I was diagnosed with LCIS I chose to step up survillance, have yearly mammo's had one MRI about 8 years ago and am vigilant about self breast exam to pick up any changes early. I chose to not take Tamoxifen. The first few years were nerve wracking but it got better with no problems as years moved on. I would recommend being informed and continued close monitoring.

Best of luck everyone!