LCIS now with a BIRAD 5 from MRI

Anonymous · October 2009

I was diagnosed with LCIS in July 09. Since then I met with the oncologist here. He was concerned by something he felt in breast, even though the surgeon felt this is simply post trauma surgery, brushed it off and was told just come back and see him in 1 year. I was then sent to Surgical oncologist in Toronto on Sept 21/09 who was reviewing everything, slides, reports, images etc. I was very happy about this, since it seemed she was being very thorough. She even sent me for mammogram and MRI on Sept 28/09. Yesterday I was scheduled for US guided biopsy, and if they couldn't see the enhancements by US, I was then scheduled for MRI biopsy today, which I am very glad about, but yesterday I asked the technician what was seen on mammogram and/or MRI, and what was my BIRAD score. She told me there were enhancements seen and it is a BIRAD 5. All I keep thinking about is this BIRAD 5, and what this will all mean? I am terrified. I realized they really don't know anything for sure, until it is seen under microscope, but this doesn't sound good. They also said that there are now enhancements also showing on my left breast, BIRAD 3 and to do MRI in 6 months.

Has anybody else had a BIRAD 5 on MRI and it turn out ok? I won't get my results until Oct 26 when I have to go back to Toronto again.

I keep thinking how I have been told, there is not a big rush in making decisions with LCIS, I have time. Am I already too late?

Take care

Cathy

leaf · October 2009

MRIs tend to have a higher false positive rate. I have seen several people here who had BIRADS 5 mammograms who ended up having benign biopsies. So there is hope.

I know I was freaked out about this too. I had my core biopsy in Dec 2005 which showed LCIS, then my excision in Jan 2006. I started on tamoxifen in July 2006. Meanwhile, I was having lots of mammos and ultrasounds. They found this thing under ultrasound which was shrinking with time, inches away from my excision scar. LCIS women are more prone to ILC than the general population. ILC is usually quite sensitive to tamoxifen. I had a 2 biopsies in Feb 2007, one of which was for this 'thing'. It turned out to be scar tissue, inches away from the excision scar. The other biopsy was benign too.

Did you have a breast excision after your biopsy? As you probably know, anything is possible with breast cancer. But I think if your biopsy was surgically excised, and if you do indeed have a malignant lesion, you would be unusual. Most figures I've seen say that about 25% of the excisions after an LCIS diagnosis at core biopsy show something worse than LCIS. But there is controversy about whether or not all LCIS people should be excised. http://community.breastcancer.org/forum/95/topic/702563?page=2#idx_41

Of course, I wish you the most boringly benign results.

hrf · October 2009

formykids, sorry you are going through this. There is still a good chance your results will be benign. When I was going through dx, I did have a BIRAD 5 identification on u/s....and it turned out to be ILC

Anonymous · October 2009

Leaf

I had ALH after stereotactic biopsy,(Mar 09) then LCIS after lumpectomy/excisional June 09. Originally one doctor thought this MRI enhancement was result of surgical trauma, and oncologist was concerned that it was a totally different area of concern. It would appear that this most recent MRI is confirms the oncologist's concerns.

This is what is written on the report of the MRI I had on Sept 28/09

IMPRESSION:
1. Segmental area of non-masslike enhancement in the right lower
outer quadrant posteriorly to a lumpectomy site. This is
suspicious. Ultrasound correlation is recommended even if
unlikely to find a target for biopsy. If not sonographically
visible, MRI guided biopsy is recommended. BI-RADS: 5

There is a moderate amount of scattered fibroglandular breast
tissue.
High degree of moderate intensity background stippled and
heterogenous parenchymal enhancement.

Parenchymal distortion in the right outer breast in the nipple
line related to previous lumpectomy with very mild enhancement in
the scar area. Posteriorly and inferiorly to the lumpectomy site,
in the lower outer quadrant, there is an area of intense
segmental non mass like enhancement with wash out, measuring
approximately 5.4 x 3.9 x 0.9 cm (image 70). It has high T2
signal.

In the left lower outer breast, there is also an area of
progressive segmental mild to moderate intensity enhancement.

No suspicious lymphadenopathy.

Can you help with what this means? The only part that I understand is the BIRAD 5, which I understand to mean 95% suspicion for malignancy. I have now had the MRI guided biopsy (Oct 16/09).

As always, appreciate your help and input.

Cathy

leaf · October 2009

I have never actually had a breast MRI (my 2nd opinion at an NCI-certified breast center said 'I had too much scar tissue' after my excision, but that's another story....)

This report is actually describing in very concrete terms, what the see on the MRI images. Its like if they saw a photo of your face, they would be describing the shape of your head, the color and texture of your hair, your complexion, the color and shape of your eyes, nose and mouth, the presence or absence of any freckles or moles.

They then make an opinion about further imaging and biopsy. I'm so glad you had your biopsy.

I think they are concerned that your breast shows ILC. That's because LCIS women are at higher risk for ILC than the average woman. (The incidence of ILC in the average population is about 10-15%, whereas the incidence of ILC in LCIS women is more like 35-45%.) The reason why I say this is because ILC normally forms sheets, not lumps. That means its harder to detect (good thing you had an MRI). They think this may because most ILC cancers do not contain a receptor called E-cadherin. E-cadherin is thought to be like Velcro, and stick adjacent cells together.

The MRI false positive (when your MRI imaging says its probably cancer, yet you end up NOT having cancer) rate can be changed by different settings on your MRI machine. http://www.ncbi.nlm.nih.gov/pubmed/19515584

Now the reading of an MRI can vary a LOT between individual radiologists. That means that for one MRI, one radiologist may call it malignant, and another may call it benign or suspicious. In this one 2006 study, their kappa value was 0.48 http://www.ncbi.nlm.nih.gov/pubmed/16714457

What does kappa mean? Kappa means how well 2 radiologists agree, corrected for by chance. If they had perfect agreement, the kappa value would be +1. If their agreement rate was no better than that of chance, then the kappa value would be 0. If no one ever agreed, the value would be -1. http://www.dmi.columbia.edu/homepages/chuangj/kappa/

A kappa value of 0.48 means that the radiologists agreed more times than not, but its only about half-way there. So, if this study is correct, another radiologist who came along and read your MRI imaging may well rate your MRI as only suspicious, or benign.

As a comparasion, this recent, randomly selected study on mammograms found a kappa value of about 0.8 for mammography. http://www.ncbi.nlm.nih.gov/pubmed/19523854

This 2009 study says "MRI is more sensitive than mammography in screening women with suspected or proven inherited mutations of the breast cancer genes. The addition of MRI in screening this population detects 8-24 additional cancers per 1000 screens, but also significantly increases a woman's risk of being recalled for investigation or surgical biopsy for false-positive findings." http://www.ncbi.nlm.nih.gov/pubmed/19413520 (emphasis mine)

This abstract lists some MRI features they found that were characteristic of their ILC diagnoses. (small sample size)http://www.ncbi.nlm.nih.gov/pubmed/18800196

Some studies try to estimate how much LCIS increases one's risk of breast cancer on subsequent breast cancer diagnoses.

For example, in this 2006 Li study that uses the SEER database (so its database is large - at least large compared to most LCIS studies) http://www.ncbi.nlm.nih.gov/pubmed/16604564 - follow the links at the upper right to get a free copy of the report - they excluded women who were diagnosed with cancer within 6 months of their LCIS or DCIS diagnosis. (p. 2 or p. 2105 in the .pdf version, lower left hand corner.) This is to try to help exclude cancers that may have been present, but somehow missed at the LCIS/DCIS diagnosis. I don't know how often this happens - can't find any data on it.

This is an abstract for the 180 LCIS patients in the 2003 NASBP study. http://www.ncbi.nlm.nih.gov/pubmed/14716756 (follow links on the right to see a free copy of the article.) In it, you can see that about 10% of the LCIS patients had invasive cancer during the 12 year study. 2 patients (1.1%) died of known breast cancer during the study.

I hope these numbers can give you some idea about the relative probability of things, as well as some idea of their uncertainty, given the lack of information we have about LCIS.

I know you are completely frightened. Of course, I hope this will just be a horrible scare that goes away after you get your results. We will be here no matter what happens.

Anonymous · October 2009

Thanks Leaf. So if I am understanding this correctly, the BIRAD 5 is likely for suspicion of ILC and not likely IDC or even DCIS. If this is correct, this would be an absolute worst case scenario. I am trying to find any positive in this and the only thing I can conclude, is that if it does turn out to be ILC, that would be that it is early detection? Or is it? It would then appear that this did not show up on mammogram or ultrasound and therefore who knows how long it has been there. The other thing would be it doesn't appear to be in the nodes, if I am reading the report correctly "No suspicious lymphadenopathy". I understand I may be jumping ahead here, until they have the results from pathology, I won't know for sure. But the facility I am at in Toronto has alot of experience in this area. I am feeling just numb by all of this. I was able to get CD's of the images from the facility, I just wish I knew someone who could look at them and see what they think. When I look, I just see this really white looking area, that seems consistent with the area they are describing.

Thanks for the information.

Cathy

leaf · October 2009

"So if I am understanding this correctly, the BIRAD 5 is likely for suspicion of ILC and not likely IDC or even DCIS. "

No, I didn't mean to give that impression. I was certainly unclear. It still could be IDC, ILC, DCIS, LCIS, or something less risky than that, including inflammation, unknown junk, etc.

The worst case scenario would, of course, that you could have an advanced cancer and die of it. That is not very likely, both because from MRI it doesn't look like you have lymph node involvement, and because they didn't find anything worse than LCIS in your excision 3 months ago. One paper opined that a 65 day doubling time was an aggressive rate, so if you have an invasive cancer 3 months after an excision, that an incredibly short time; it would be really, really unusual. In the NSABP study, only 2 out of 180 people died of known breast cancer in 12 years.

I'm into (almost) never saying never.

In the Port et al MRI study of 378 LCIS and AH patients over 5 years, all the MRI- detected cancers were stage 0-1, and all the non-MRI detected cancers were stage I-II. There were no stage III or IV cases, and I believe there were no breast cancer deaths during the 5 years of this study (I don't think so anyway.) http://www.ncbi.nlm.nih.gov/pubmed/17206485

Since most LCIS women are followed quite closely, they usually are not diagnosed with advanced cancers. While ILC is known as the 'sneaky one', your lack of lymph node issues showing up in MRI would suggest (but not prove) you don't have lymph node involvement and that IF you did have cancer it would be early stage.

The other paper I was talking about was trying to show that when one radiologist says an MRI is cancerous, in that one paper, there was far from total agreement with another radiologist looking at the same MRI films.

I'm sorry about my lack of writing skills. It is not meant to confuse, but it does.

I think another LCIS regular here got an MRI BIRADS 5 rating, and ended up with a diagnosis of LCIS and nothing worse.

samiam40 · October 2009

I had an MRI in December, which showed a suspicious abnormality rated BIRADS 5. I had previously been diagnosed with LCIS and ADH in 2002 and had a clean mammogram and ultrasound immediately prior to my MRI as well as for the previous 6 years. Unfortunately, my MRI-detected cancer ended up being stage 2 IDC. It was Stage 2 because the size of the tumor exceed 2 cm; there was no lymph node involvement. I did always think that the close monitoring of my situation would mean it that if/when I got BC, it would be DCIS or Stage 1 IDC.

Hopefully, yours will turn out to be not cancer at all. If it is, though, remember it is not the end of the world. I have been through surgery, treatment and have a good pronosis.

Anonymous · October 2009

Cathy----my initial screening mammo was a BIRADS 4, then became a BIRADS 5 after the diagnostic mammo, and I ended up with LCIS as the final diagnosis (after stereotactic core biopsy, then excisional biopsy) with nothing more serious found. So there is always hope--I pray you get good news soon.

Anne

macksix6 · October 2009

Formykids many of us post about our specific situations which most of the time are all different. Although we are very diligent about reading and researching we are not trained medical doctors. I feel that people posting should refrain from expressing their opinions on dx and interpretation of pathology results. That should be left to the trained professionals. Call your Drs if you don't understand your results. If your Dr is not helping you find one that will or consider a second opinion from another Dr.

leaf · October 2009

Thank you, macsix6. That is very true. I am not a physician, and I am not anyone's doctor. I cannot diagnose anyone, and I was probably going very much out on a limb to try to speculate.

However, from my personal experience, I have NOT found that all 'trained professionals' know what they are talking about. I went for a 2nd opinion at an NCI-certified Cancer center about my LCIS and nothing worse. I wanted more information about my bc risk. The first person I saw was an NP that started out with "Here we use a breast cancer risk tool called the Gail model." I finished her sentence by saying, "which specifically excludes LCIS." http://www.cancer.gov/bcrisktool/

Then, the breast surgeon came in. I asked her. She said, "Your lifetime risk of breast cancer is somewhere between 10% and 60%, but probably closer to 10%. To get a more accurate number, you would need to go to journals." Well, as you probably know, the lifetime risk of the 'average' (i.e. mean) woman is more than 10%. That risk would certainly increase with my LCIS and ALH diagnoses.

And I had read all 200+ abstracts about LCIS that are listed in Pubmed. That's why I was asking her. This consult did lead me to find out how poorly they understand risks for breast cancer. One medical journal editorial termed risk for breast cancer (for the Gail model) as 'better than the roll of a dice - but not by much." http://www.ncbi.nlm.nih.gov/pubmed/17148770

My oncologist, who has been in practice since at least 1980, and is the head of his department, said he had only seen a 'handful' of LCIS (and nothing worse) patients. My breast surgeon's first sentence to me, before she even asked about my family history, was "If you want bilateral prophylactic mastectomies, I will fall over in my chair." Her later comment was "I don't want to do any further proceedures on you." I like my oncologist because he is comfortable in saying what he does and does not know. That's what I want in my health providers.

So, speaking ONLY for myself, I have certainly found that some of MY medical professionals do not know what they are talking about, at least for some of my 'unusual' conditions. (I'm a hospital pharmacist, if that has any relevance.) Your experience may, and probably is, very, very different.

Of course, everyone has different needs and has different circumstances. I DID go 'over the line', and I thank you for pointing that out.

trishm01254 · October 2009

Leaf,

I think I speak for most of us with LCIS that we appreciate the way you share your research. I had asked my surgeon if my Type B LCIS increased my risk over the classic Type A and he said he never heard of Type B. Argh!

Keep on posting!

leaf · October 2009

Thank you trishm. I learn from all of you! And I especially appreciate when people tell me I went too far, or are wrong. Its hard to tell someone that, and that's the first step to doing something better. I know I can get angry too, so I do have things I need to work upon....

upcreek · October 2009

Thanks leaf for all your knowledge and help that you have given us. I for one appreciate it!

Anonymous · October 2009

Leaf I want to thank you for "going out on the limb" in trying to help me better understand this report. You are always a wealth of knowledge and information and I am so grateful to you for that. For some of us, reading and hearing some of the terminology used, is like a foreign language, so any help in understanding things better ultimately helps us to make wiser choices. I think anybody who comes to these boards, totally understands that these are not doctors making a diagnosis, but only sharing their experiences and knowledge based on research or information they have obtained. Each of us, has to weed through all of the information we are given, no matter where it is coming from, including the doctors, who sometimes know less than alot of people on these boards. For me, knowing I had a BIRAD 5 has made me very anxious and scared, but until the results of the pathology are in, I continue to wait to find out my diagnosis.

Thanks Cathy

leaf · October 2009

Thank you Cathy. Hang in there! Golly, we all know that's hard to do! We'll be here no matter what.

cleomoon · October 2009

Cathy wishing you benign results. Hope it's just scar tissue from your excisional.

((HUGS)) to Leaf....my calm in the wind.

Anonymous · October 2009

Hi Ladies

I just received my results and unfortunately not good. The doctor told me that the original site is confirmed as classic LCIS. The new enhancement, that I just had the biopsy for BIRAD 5 on MRI, came back as Pleomorphic Lobular Carcinoma in Situ. She explained that this is something new in the Breast cancer world and that the treatment for it is consistent with treatment for DCIS. So although I went to this appointment scared for the absolute worse case scenario, (ILC), this wasn't what I have wished for as best case scenario.

The options for me would be wide excisional biopsy and it would be necessary to get clear margins, unlike LCIS, where it is not required to get clear margins, followed by radiation. If they were not able to get clear margins further surgery would be required until they do, and if they don't, mastectomy would be required. With this scenario they would not take any nodes, and it is possible they may find ILC. OR unilateral mastectomy, they would have to check nodes with this route, and it would not be necessary to have radiation afterwards. But I suppose if they did find ILC, it could require further treatment.

My head is just spinning and I am so confused as to what to do. When I read through the PLCIS thread on here, it sounds like there is even more confusion with PLCIS then there is with classic LCIS and I thought that was bad enough. People that have gone for second opinions, to some of the top cancer centres all seem to be saying something different.

My feeling is I just want this out as soon as possible, which could happen doing the wide excisional. If I were to go the mastectomy route, which I don't know that I am mentally or knowledge wise prepared for, this would be a much lengthier process, especially if I were to try to do reconstruction at the same time. If I were doing mastectomy, I would want reconstruction at the same time. Although the doctor I met with, didn't come right out and say what she thought I should do, I got the impression, she thought wide exisional first and try to save the breast. I asked her if she thought it medically necessary to have mastectomy and she said that is a personal preference. Although she did say it wouldn't be necessary to have bilateral, just to remove the affected breast. If clear margins could be achieved, the breast could be saved. If clear margins were not achieved, at least you could say you tried everything you could and then go ahead with mastectomy.

I just wanted to thank everyone for their well wishes and support through all of this. I would appreciate any information or knowledge anyone might have about PLCIS. It doesn't seem like there is a whole lot of information about it, the books that I have don't even mention it?

Thanks Cathy

cocoapuff · October 2009

Hi, I am home with two sick kids today and I was checking the posts. I haven't posted before but I just wanted you to know I read your post and I feel for you. I am sorry that your results were not good. Sometimes that happens but hang in there with us and we will get through it. It may be hard to find the information you need about PLCIS but there are some excellent people here that can help you far more than I can. I just wanted you to know I am thinking of you.

lisa

covertanjou · October 2009

I am so sorry to hear about your dx. I do not know enough about PLCIS to help you, but I do think that you have a good dr. From what I have read about PLCIS, it is best to treat it as DCIS, and this is what your dr is doing.

2timer · October 2009

I'm sorry about your dx too.

I don't mean to sound ignorant but I gather from what youi've told us that while this PLCIS is much more serious that LCIS it's still in situ, so it's curable with treatment. It sounds like a very early cancer with very good survival rates. Breast cancer is very scary at any stage but you have to keep in mind that you are probably considered a stage 0.

Kimber · October 2009

Cathy,

I too am sorry for your diagnosis. It sounds like you are in good hands. You have a lot of decisions ahead of you.....take a deep breath....you have time to weigh all your options.....please know that we are all here for you.

hugs,

Kimber

Anonymous · October 2009

Cathy---- I don't think they know really how much more worrisome PLCIS is than classic LCIS, but I'm glad to hear they are being proactive and treating it more like DCIS. Praying you get clear margins with a lumpectomy and that if you need radiation that you tolerate it well.

anne

leaf · October 2009

Sheesh. I'm so sorry you got an additional diagnosis. I bet you're in shock. I'm glad it sounds like they are encouraging you to treat this more aggressively than classic LCIS.

Who would want to make decisions like this?

Its especially difficult when even the top people cannot agree on the best treatment. When faced with a decision where there is no clear, correct choice, one person said to take all the time you need - check out your heart and guts and brain; make as many consults as you need. Make the best decision you can. Then don't look back. You will have made the best decision you can.

Thinking of you.

OG56 · October 2009

I am sorry to hear that you did not receive "the best news" also. I too had classic and pleomorphic LCIS. I finally went to Sloan Kettering after 2 MRI guided biopsies (both breasts) sent my slides to Cornell, then to Sloan and I ended up with 2 excisional biopsies one for each breast and they did get clear margins on the PLCIS, they don't do radiation for any type of LCIS. I was very conflicted while in the midst of all this drama but I am 2 months out since surgery and feel a little more clear headed and calm. In 2008 I had IDC. I wish you the very best and try not to let fear drive your decision, of course easier said than done I know.

Anonymous · October 2009

Thank you for all your kind words and thoughts.

I have been trying to find any information I can get my hands on about PLCIS, and it does not appear an easy task. I thought trying to understand LCIS was bad enough, this seems even more confusing with different opinions. I am guessing because it is a relatively new thing.

I even had a lengthy conversation with one of the pathologists at our hospital yesterday, who had not even heard of it. Yikes, that's scary. I explained how I understood they tested for it, and he agreed that they should also be aware of this. So likely, I can only assume there alot of women who are diagnosed with DCIS, are actually PLCIS.

Still trying to make a decision on excision with clear margins vs mastectomy. I just don't know what to do.

Cathy

macksix6 · October 2009

Cathy I am very sorry that you have been Dx with PLCIS. However, the good news is that you have caught this early. I was Dx with PLCIS in my right breast. I had two excisional surgeries but failed to get clear margins. I consulted with two oncologists and they both told me that like DCIS, PLCIS needs to be removed to clear margins since it is felt to be a pre-cancerous condition. If the area is small and they can get clear margins then they can do a lumpectomy. If not a mastectomy is recommended. I had a bilateral mastectomy (left prophylactic) with immediate diep reconstruction on Sept 24th. My path report indicated my PLCIS was extensive throughout my breast. I feel great, my breasts feel much like my old ones and I have a tummy of a 16 yr old. Best of all this is behind me forever. PM me if you have any questions

covertanjou · October 2009

Cathy,

I went in today for my 6 month mammo after finding calcifications that lead to an excisional and a LCIS/ADH/ALH dx. I have been prescribed tamox (still not filled), and I understand your confusion and fear. I told myself that if this mammo is clear, I may take the tamox or simply follow the careful monitoring route. However, I decided that if something else comes up (LCIS again, more calcifications, another biopsy) I will ask my doctor for a mastectomy. I can't and don't want to go through countless biopsies.

I have been doing a little research on PLCIS and most doctors now believe it should be treated like DCIS http://journals.lww.com/ajsp/Abstract/2008/11000/Pleomorphic_Lobular_Carcinoma_In_Situ__PLCIS__on.16.aspx

http://www.ncbi.nlm.nih.gov/pubmed/18769331

I hope that this info helps. Please PM me if you wish, and know that all the women here are supporting you and your decisions.

Mary

Anonymous · October 2009

Thanks covertanjou and macksix6

macksix6 I am happy for you that you have been able to come to terms with the decision you made and can hopefully like you said put all of this behind you now. I sense that most women who have had to make this very difficult decision, once made they are glad they did. For myself, I think it could end up where the decision will be made for me. If I decide to go the excisional route and they aren't able to get clear margins, the doctor has already said, mastectomy would be necessary.

covertanjou thanks for the article, I have managed to find some and it does seem to be that treating it like DCIS is the best recommendation at this point, based on the little they seem to know. Hoping and praying you get good results from your mammogram and as you struggle with the decision on whether or not to take tamoxifen.

Take Care

Cathy

Anonymous · October 2009

Hi

Yesterday I was finally able to get a copy of the pathology report from my biopsy. It indicates that they took 12 samples and I have the track marks on my breast to show for it. It says that there is ALH, LCIS-classic type, microcalcifications and PLCIS. It also says that the PLCIS has areas of Grade 1-2, Grade 2-3 and Grade 3. From what I can read about grading, this is really worrying me, because Grade 3 would mean it is fast growing. This would be consistent with why it appears to have grown so much already since I had the MRI in July. I think at this point I am going to have the wide excisional done, because I think this could be coordinated the most quickly and I just want it out. If it does come back with something more like ILC, or they can't get clean margins I will have no choice but to have mastectomy. Interesting though the doctor said to do a unilateral mastectomy which doesn't make sense to me, since LCIS does tend to go to both breast. And I do already have something that has shown up on the other breast, although rated as a BIRAD 3, recommended MRI in 6 months. This is really scaring me, but I suppose I should be thankful that the doctor sent me for the MRI in the first place since this was not even seen on mammogram or ultrasound.

leaf · October 2009

I don't understand why some docs recommend what they do either. I'm glad you've decided for now about your treatment. These are not easy decisions, I'm sure.

I think there have been some threads on the ILC board whether many people there have uni-masts.

Thinking of you.

LCIS now with a BIRAD 5 from MRI

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