LCIS diagnosis

DawnO

Hello LCIS forum!

A suspicious finding on my yearly mammogram led to a follow-up with magnification. That one showed microcalcifications which of course led to a stereoscopic needle biopsy. Well the results of that are in and showed LCIS. I also have four complex sclerosing lesions (the largest is 2.6 cm) with LCIS and microcalcifications. Now I'm scheduled for a partial mastectomy next Tuesday, June 14th. My Dr. is concerned about the possibility of malignant cells hiding within the lesions. She mentioned the possibility of the double mastectomy but feels that would be overkill for now. Then she talked about Tamoxifen but the side effects make me nervous. My pre-op blood work is done and I've spoken with the anesthesiologist so I'm as ready as I'm going to be. All of this has happened in the course of a month and there's so much information to take in that I'm feeling really overwhelmed right now. The Dr. told me that our next steps depend on what she finds in the surgery and what comes back on the pathology report a week later. Like everyone here , I'm really bad at waiting.

Thank you all for sharing your stories and questions. Gathering information has truly helped calm my frazzled nerves.

Dawn O.

Breathe_Now

Hi DawnO,

It is a dizzying amount of information to take in and process in order to make life changing decisions. I would vacillate between being calmed by research and then overwhelmed to the point of getting dizzy.

I'll be thinking of you on Tuesday and I hope that everything goes as anticipated.

Anonymous

Dawn-----I was diagnosed with LCIS nearly 13 years ago, and my risk is further elevated by family history of bc (mom had ILC); I had a lumpectomy, took tamoxifen for 5 years, and now take evista for further preventative measures. I continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. I have been very fortunate, tolerated both meds well, and haven't needed any further biopsies or lumpectomies in all these years since. I pray everything goes well tomorrow and that you get good benign findings.

Anne

Breathe_Now

Hi DawnO, thinking about you and hoping you are doing ok.

DawnO

Just quick update. My surgery went well and, according to my surgeon, almost exactly as planned. I'm home and resting with some very effective pain meds available as needed. Now the wait for the pathology results begins. My surgeon says that she should have them by my follow-up appointment next Wednesday. I have to try to wait patiently but I'm nervous and more than a little scared of the results. My doctor has said that our next steps depend on these results and I can't seem to stop my mental gears from grinding. I'm not sleeping well and I know that I need to rest to heal from this surgery and to be able to deal with whatever may come next. For now I'm trying to stay calm and surround myself with positive people that can help me keep things in perspective. Everyone here on this forum has been so kind and supportive that I wanted to say "Thanks". You've been a great help during a rough time.

Fingers crossed here! 😀

Breathe_Now

Glad you are on the mend, DawnO. I know how nerve wracking waiting for results can be, I was so anxious I was getting dissy and I resorted to breathing into a bag a few times. Have you check out the waiting for results forum?

https://community.breastcancer.org/forum/62/topics...

DawnO

I received a call from my surgeon's office Friday afternoon. She wanted to let me know that she got "clean margins" in my surgery on Tuesday. It'll still be this Wednesday before the pathology report that tells us the specifics about the growths that she removed comes in. We've discussed the possibility of an upgrade based on this report so I guess Wednesday is the big day.

Still nervously waiting.,

Dawn O

Breathe_Now

Clean margins are good. Bet it feels like Wednesday is a long time to wait, Hang in there.

DawnO

Well, good news for now. There was no cancer detected in the post surgical pathology. Now because of the LCIS I'm to be on close monitoring (my Dec mammogram is already scheduled) and my BS wants to put me on tamoxifen. I know it can reduce overall risk but I have some conerns about side effects. My maternal grandmother had multiple strokes and blood clots run in my family. I mentioned my concerns to my BS and she said if I got a blood clot that I could just stop taking it. Seemed a little dismissive to me but maybe I'm just being overly sensitive. Plus, isn't tamoxifen only effective in preventing ER+ cancers? My BS gave me the prescription but I don't know yet what I want to do.This whole process has been so stressful, maybe I just need to let my head clear a bit before I make a decision. Any thoughts?

MelissaDallas

Dawn, I answered you on your other thread, but you are right. You don't have to decide right now. It is not an urgent situation. Take your time to think it over and evaluate.

Anonymous

Dawn----most, if not all, LCIS is thought to be ER positive. Unless you have a personal history of blood clots or stroke yourself, or a blood disorder which makes you prone to blood clots, the fact that your grandmother or other family members had blood clots or strokes doesn't impact your ability to take tamoxifen. (blood clots and strokes are not hereditary, with the exception of clots from a specific disorder). Great news, no invasive bc !!! I was diagnosed almost 13 years ago with LCIS, my risk is further elevated by my mom's history of bc (ILC). I took tamox for 5 years, I have been alternating mammos and MRIs every 6 months for many years, and taking evista for about 7 years now. My new oncologist feels strongly that I no longer need to stay on the evista, and that I don't need to continue with the MRIs any more, she feels the 3-D tomosynthesis mammos are just as good for me, since I have no breast density. (an added benefit from prolonged tamoxifen, it decreases breast density, so mammos are much easier to read.). Like Melissa said, there is no rush with LCIS, you can take your time researching, having 2nd opinions if you want, think it over and just let it settle in, before making any hard and fast decisions.

anne

leaf

FYI: 'Clean margins' have little relevance in LCIS, because normally there are multiple spots of LCIS in a breast, and it is often bilateral (in both breasts). They know this because prior to about 1990, the routine treatment for LCIS was bilateral mastectomies, and they could look at the mastectomy specimens.

Unfortunately, the only reliable way they can detect LCIS is by removing it and looking at in under the microscope, so there is no reliable way of removing all LCIS. Even if you have bilateral mastectomies, they cannot remove 100% of the breast cells. It is unusual, but some women who have bilateral mastectomies have gotten breast cancer recurrences, even if the cancer hasn't traveled to the lymph nodes or beyond. (LCIS by definition is NOT invasive. LCIS is enclosed by the basement membrane in the breast. LCIS cannot travel beyond the basement membrane where it is enclosed in the breast. If it has penetrated the basement membrane in the breast, then, by definition, its invasive breast cancer.)

So, unless perhaps you have had bilateral mastectomies, probably most LCIS patients have multiple spots of LCIS still in their breast(s). These spots of LCIS are normally not detectable by imaging, so they can't remove all of them because they don't know where they are.

Since roughly a minority of LCIS women go on to get invasive breast cancer in the future, obviously there are many spots of LCIS that NEVER progress to become invasive breast cancer.

Mimi42

I'm new to the forum! I was just recently diagnosed with LCIS and I'm waiting on results from an excisional biopsy! Nervous about the wait! I guess I'm afraid there maybe more going on that we don't know about! It's just scary! Has anyone else found out they have more invasive things going on since being diagnosed?

Moderators

Mimi42-

We want to welcome you to our community here at BCO. We're sorry for what brings you here, but we hope you find these forums to be a source of support and encouragement as you begin down this road. The waiting for answers is truly one of the hardest parts, and the not knowing can be very scary. Just know that you're not alone, and we're here for you!

The Mods

leaf

The people that are diagnosed with more extensive stuff (like DCIS or invasive) are probably not going to pick up your question since you're asking on the LCiS forum. The women that are diagnosed with DCIS or invasive probably post on the DCIS or invasive forums.

Almost everything concerning LCIS is controversial.

Papers differ, but if you have classic LCIS, then roughly 20% of women who are initially diagnosed with LCIS on core biopsy find they have something worse (i.e. DCIS or invasive) if/when they get excised. Some papers opine if the imaging strictly correspond with what they find on pathology, that you don't need to excise, but, as with almost everything LCIS, that's controversial.

Its more controversial to estimate what the lifetime risk of breast cancer is (i.e. long term risk) for classic LCIS. Unless you have an extensive family history, thus are at risk for a BRCA mutation, or have had extensive radiation (i.e. radiation TREATMENT to the chest for cancers such as lymphoma), then most people get numbers like a 30-50% lifetime risk. But they don't know these numbers well AT ALL. We have very poor ability to predict which woman will get breast cancer and which woman won't.

So, statistically, you have a good chance (roughly 80%) they will NOT find anything worse (than your present LCIS) after they do your excision. But you won't know until the result comes back. Hang in there. Many people feel distraction helps. You don't want to rush the people doing the analysis so they make a mistake, because they're the ones who are diagnosing you.

Waiting is awful, and you may be a psychological wreck by the time you get your results, but it probably won't make much clinical difference (besides your mental health.) We all know how hard it is to wait. Hang in there.

Kells

my plan for my LCIS will bilateral prophylactic mastectomy. I'm over this stress. I go in sept for more mammogram and. MRI. Good luck