Just diagnosed with lcis but treat like dcis

Jgab

I received final pathology report dictated from two pathologists stating I was diagnosed with lcis with dcis like features. Meet with surgeon on Tuesday. I am a nervous wreck and don't know how to proceed. I also have augmented breasts. Anyone have similar situation or advice

leaf

Of course you're a nervous wreck.

I'd try to get a (paper) copy of your pathology report. There are several types of LCIS. (I'm not sure if EVERY pathologist agrees with this classification, but here's a slide show from 2012 that lists different types. http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh...)

It sounds like you may possibly have something like LCIS with necrosis. Or perhaps you have pleomorphic LCIS.

If you haven't been excised, then at least the UCSF slideshow recommended excision, and I'd be prepared to have your surgeon recommend excision. I'd try to get familiar with the terminology so you can understand what the breast surgeon is talking about.

I only had classic LCIS, but they only excised about 2 tablespoonfulls of tissue, which just made a slight dent in my breast (I have a B cup), and it filled in with time. The scar has been almost invisible since year 5.

They don't have much information about the LCIS variant types because they were only recognized about 20 years ago, and even classic LCIS wasn't recognized until the 1940s. But in long term studies, and we don't know how many LCIS people in these long term studies had LCIS variants, probably less than half of them went on to get DCIS or invasive breast cancer.

I know you're very afraid now, but there's a good chance that you will be fine. Just make sure you get treated or followed, whatever you choose. (The only thing I would NOT recommend is that you just drop the ball and not get followed at all by any physician after this diagnosis.) If you don't like what your breast surgeon says, then get another opinion from another one. There's no one right answer for everyone in breast cancer.

Let us know how it goes, OK?

Jgab

After breast MRI, it appears to be rather widespread. I am scheduled for bilateral mastectomy on Monday, March 7. The MRI showed abnormal enhancements, but no masses or tumors. I am trying to put my faith in my surgeon, radiologist, and Doctor. But I know ultimately it comes down to final pathology. They have had many images of my breast from several mammograms, ultra sounds, and MRI. I am trying to stay positive for my family and myself. My plastic surgeon said much of my work is done since I have a pocket from my previous augmentation. Has anyone had bilateral after cosmetic augmentation? Thank you for replying and your concerns:

QKA12

I too was recently diagnosed with LCIS as well as atypical lobular hyperplasia. I had a lumpectomy to remove area where needle biopsy was done and no cancer was found but a significant amount LCIS was. I tested negative for the brca 1 and brca 2 and I have no history of breast cancer in my family. I am really at a loss as to how to proceed. My doctor told me my risk of developing invasive breast cancer is 50% with a higher risk of developing it in the breast that lumpectomy was performed on. Most people I talk to or read about have the gene mutation or a family member who had cancer but with me it is just the two things mentioned above. My surgeon said that if I was his family member he would recommend the preventative double mastectomy becasue his concern was elevated with the amount of LCIS they found during the excision. I am going for a second opinion and I know I have some time to consider this surgery. I am only 48 and he did say the risk increases slightly each year - about 1% so in 20 years that is a pretty significant risk. Also because I am likely to develop invasive breast cancer it could lead to removal of lymph nodes and other issues. I am really uncertain as to how to proceed and was hoping someone else had this issue and could lend some thoughts

Moderators

Hi QKA12-

Welcome to BCO! We want to direct you to our High Risk for Breast Cancer forum, where you'll find lots of information regarding prophylactic procedures and treatments, and how many of our members have come to the decision to pursue or hold off on them. There are obviously a lot of factors to consider, and it's a very personal decision, but hopefully you'll find some guidance and support that can help you!

Please let us know if we can be of any assistance!

The Mods

Asante314

For straight LCIS there are three paths of treatment.

high level surveillance

high level surveillance Plus hormonal therapy.

prophylactic mastectomy..

====

on paper choice two = here take this pill to decrease your chances and we will watch it all very closely seems like the simple choice, if we were just the sum of a final line in a pathology report. a diagnosis code of D05.00

But we are not the sum of our medical diagnostic coding

We are individuals, each with our own histories and futures.

Seeking another opinion to hear another breast surgeon's opinion and reasons for that opinion is invaluable. I met with a few BS and MO which (?un) fortunately for me all stated BMX was the best rec for ME. The BS who is performing my surgery this month said I will probably never be 100% certain all day every day of my choice, but I would know when >75% of the time i was settled, then it would be time.

Jgab, I can not help with the prior breast augmentation, but understand most of what you are going through. Those darn "abnormal enhancements" ultimately led to my final decision. Seemed I would be on a path of biopsies every 6-12 months. BS requested a repeat MRI 4 months after my lumpectomy and was not happy with the extent of enhancement. That was her final straw to say, they have to come off (ok she was wonderful and did not use those words) An independent BS, expressed equal concern and her discomfort with any other choice. So 3-14 I am having my BMX as well. I am having SNB on the side with the enhancement as well.

Sorry each of you are walking this path.

asante

Jgab

aascante314,

Were you diagnosed with straight lcis? Does it show up on your MRI. I drive myself mad with worry as to what the abnormal enhancements are on my MRI. They keep assuring me all my other images were clear, but my fear just becomes debilitating.

So your Bmx will be one week after mine? It has seemed like a long wait! Just want to get there....and not at the same time!

Best wishes and praying for you:)

Jer

Asante314

Jgab

a pesky leaky nipple dc led to diagnosis of a probable papilloma. u/s and mammo were clear, but 6 months later when I returned to the BS (her PA had seen me initially and rec observation) I was told I needed the papilloma excised.

BS wanted repeat mammo/ u/s as 6 months had passed, and suggested MRI. She warned it could open a pandora's box, and indeed it did. There was a significant amount of enhancement in the same breast, but diffuse. core needle bx was + LCIS. The radiologist said it was diffuse, so chose a random spot to take the biopsy, but did not place a marker - a choice she later regretted.

So I had a ductal excision, then wire guided localization to mark the initial bx spot for the lumpectomy. The lumpectomy was LCIS, but present again diffusely on every slide.

The BS was happy for pure LCIS, but remained guarded about the amount of enhancement. SHe consulted w radiology, and they decided to repeat the MRI in 3 months. She wanted time to allow post op healing, for things to calm down. An overseas trip delayed the MRI to 4 months. At follow up, she was not happy with the continuing degree of enhancement. I did meet with two other BS who also had the basic "wow" response - not something ever stated previously about my small droopy breast (breast fed child). They all rec BMX. I am going to have SNB on the first side as well.

I debated the SNB, and asked about marking the first node and going back in, my BS was not a fan of this. She will have pathology access in the OR to review the few nodes she does remove. hoping all negative, or she will perform a axillary node dissection as well.

Due to work, life I put off the BMX 5 months. The BS all were fine with that time frame, but if I waited an additional moth, I would have to repeat the MRI. Why bother, that was stressful each time. So going in just under the wire.

I understand wanting to get there, but not. I have been counting down for 4 months. seems like only yesterday I was 6 weeks pre - op and thinking well, the time left is equal to the time I scheduled off from work.

Weird feeling of being excited to get it over with. Not like Christmas morning, but can't wait for it to be here. I think it is more so it will be behind me, and recovery with hopefully good pathology in front of me.

Jgab

Assante314,

I completely feel the same way. I just want it to get here with good pathology. My bs is also doing sentinel node dissection. I am so up and down with my emotions. My doctor initially thought I would just have a lumpectomy, but my MRI proved differently.

Do you mind me asking if you are sparing your nipples? My enhancement was quite widespread and I just fear what is in it:( I will keep you posted as my surgery will be one week before you! You will have great results with straight lcis:)

Jgab

Asante314

I am having nipple sparing. All the BS and PS felt this was fine, but one PS didn't think my shape was right for cosmesis. I even told the PS doing the procedure, well if I wake up and they are gone, it is ok, but I do prefer to keep them. The surgeons are planning an infra-mammary fold incision. The BS said if the nipples are too low, they may try a small crescent shape incision along the top of the areola to pull them up a bit. My enhancement is also very widespread, but the BS did not think the nipple was an issue.

You may want to read through the Feb 2016 surgery thread. great group of women. You will read how they fared both before an after, some with complications and variable pathologies, but supportive and helpful information. Biggest thinking is the many variables from surgeon to surgeon on such things as bathing, drains, physical therapy etc.

Jgab

I was unable to spare my right nipple. So I decided to just get rid of both for symmetry. What is the February 2016 thread

Asante314

under the topics:

"Surgery before during and after"

https://community.breastcancer.org/forum/91/topics...

hope that link works - should take you to the February 2016 surgery thread.

there is A march 2016 thread as well, I can add you if you like. just a group going through surgery each month.

Long day at work, sorry for delayed response

asante

CynthiaB

Hello to you!

I was diagnosed 3 years ago with LCIS in my left breast. I was monitored every 6 months but nothing showed up on my mammogram...nada, zilch. I got a painful cyst in my right breast and asked for an early check up (hoping they'd just aspirate the cyst and off I'd go) BUT, they found invasive lobular. I had a bi lateral mastectomy Nov 30, 2015....my cancer was Stage 1, no lymph node involvement. I cant' say the mastectomy was any fun but I didn't want to continue with on-going testing, waiting and worrying. I wish I had been able to catch it earlier, in situ, but now I had both breasts involved, right and left and the pathology in both breasts was crazy post surgery. Just one section of invasive cancer but atypical changes everywhere. No invasive in the original left breast but it was starting. Lots of changes, none of them good. I'm starting hormone therapy now (not excited about that) but hoping that this will be the end and no more recurrence of the cancer. I wasn't as aggressive about diet or hormone therapy before this became invasive but I'm not sure if it would have helped.....the doctors don't seem to know either. I opted for the most aggressive treatment because I didn't want the on-going worry. I wish you luck...I'm here if you need support (although I have a heck of time figuring out this website

Jgab

Cynthiab,

Did they tell you initially it was a simple cyst? I have three simple cysts in this area and it scares me. They have been ultra sounded several times. But now this lcis is a high bread and needs to go. My bilateral is on Monday. I am terrified.... I know I can handle the pain....but I feel bad for everyone having to deal with me. But I never want to have another mammogram again!

Jgab

InStitches

I totally relate to the concerns about background enhancement. I had a lumpectomy last year with DCIS and LCIS. I am now having problems in my right breast. 3d digital mammogram in January found a small rounded mass and a slightly irregular asymmetric breast density, both new in less than a year. Ultrasound found five small masses. Two were biopsied and found to be a number of elements including columnar cell change. My MRI came back with no findings and the background parenchymal enhancement was mild.

I, however, continue to be concerned about the new issues that have developed in this right breast. In addition the right breast has some concerning changes including skin puckering, a dimple and the beginning of nipple retraction. I am very concerned but my BS seems to accept the clean MRI. My next follow up is in June.

Peace and healing,

Nancy

mjh1

institches - considering your past history n the fact that MRI have a 10 ℅ false negative rate and now your new symptoms I would definitely ask for further testing and\or seek a second opinion from another BS. All the battery of tests that I had b4 my MX showed nothing on my right breast. However when final path came back I had dcis, lcis n atypical cells in the right.

InStitches

I called my BS's office yesterday and made an appointment for this afternoon to discuss additional views on the two areas that were identified on the 3D mammogram. I have a somewhat irregular focal as symmetric density as well as a small rounded mass. These are in the upper outer quadrant. I never had magnification or spot compression views and I think that needs to happen.

I appreciate your recommendation.

Peace and healing,

Nancy