Just diagnosed and confused ??

Hey Shirley,

I am sorry you have had a diagnosis that has led you here, but you are in a great place for info and support.  These forums are filled with caring women, and some of them are very informative.  I am sure one of them will come along shortly to advise you.

 Your info does seem confusing and contradictory.  I would start by calling the doctors office and speaking to a nurse or the doctor and asking for verification on the actual diagnosis.  It seems the Doctor is saying that you have DCIS, but the pathology only lists LCIS.  I went online and read a little bit and have included a quote from a BC research article.

"Emerging data suggest that these flat epithelial atypias(meaning the columnar cell change) may be neoplastic lesions that represent the earliest form of low-grade DCIS. "  I think...and I am totally not an expert....that maybe you have this early form of DCIS and also LCIS. 

I would most definately call your surgeons office to confirm.  They should take the time to explain it to you in a way that is understandable!  It is your right to be fully educated, not to just have to take their word for it. 

Hopefully some of the other ladies on this forum will chime in soon.  There is a member named Leaf who is very very knowledgable and informative.  Maybe you can private message her?

The lumpectomy for me was simple and easy.  Actually was easier than the MRI guided core needle biopsy.  You go to sleep, you wake up.  I had a needle localization exisional biopsy, and really the only thing I had was some slight soreness.  If I did not bump the area afterward , there was no pain.  I had steristrips on it for about a week and a half then they came off in the shower.  There is a ton of bruising though sometimes!  All colors of the rainbow for a while.  It depends on how big the area is, whether or not there is a visible "dented" area afterward. 

One good thing is that you have time.  So try to relax and breathe, even though it may be hard.  DCIS and LCIS both are diagnoses that will allow you to take the time to research, ask questions and learn about them first. 

Thoughts and strength to you until someone else comes along with more info!

Misty

Shirley,

Are you being seen by a breast surgeon?  I am kind of surprised at your treatment.  Pretty much everything I have read and seen on this forum, and learned from my Breast surgeon says that DCIS is treated with lumpectomy and radiation.  LCIS is excised to make sure there is nothing else hiding in the area ie: DCIS or invasive bc.  My surgeon did want to make sure he had clean margins, but some on here have noted that with LCIS it is not so important to get clean margins because LCIS is usually multifocal meaning that it is probably in other areas of the breast and possibly both breasts. 

Tamoxifen is an estrogen blocker.  It is most definately one of the options for LCIS.  From what I read on here, alot of the women take tamox. for LCIS.  Side effects can range from person to person.  Some women have had no major side effects, and some women have found it so miserable that they stop.  I have decided that due to my family history and other things making my breasts "busy"  that I will have a bilat. prophylactic mastectomy in June.  I will be having reconstruction. 

 Usually LCIS is treated with one of these options....high risk monitoring...mammo and MRI alternating every 6 months, or with Tamoxifen, or with prophylactic mast.  If you are not seeing a surgeon who specializes in Breast....I might get a second opinion.  I am going to PM one of the other ladies on here and see if she has ever heard of your treatment option.

The columnar cell lesion info was very confusing.  I did not research that prior to today because it was not in my pathology.  There were alot of links to it today though, I just read a few.

 I hope this helps. 

Misty

I would agree with Misty----you need to get a detailed copy of your pathology report and find out your exact diagnosis.  It sounds like you could possibly have both DCIS and LCIS; they are both in-situ bc's, but are different and treated differently.

Anne (I do high risk surviellance and meds ---5 years tamox, now evista-----I'm high risk due to LCIS and family history of ILC)

Thanks for your post Leaf!!  It seemed really wrong to me to, but I thought maybe it was just me.  Shirley if it were me,  I would definately get all path. reports and go for a second opinion with a breast cancer specialist before getting any of this done.

Do you have a physical copy of your actual pathology report?  That is what you deserve and need.  Don't settle for someone's interpretation of your pathology report. 

One of the IMPORTANT parts of your pathology report are details about what kind of LCIS or DCIS you have (if that's what you have.)  Many places now give information about the grade or type of LCIS and/or DCIS.  DCIS has always had many different types.  They now usually describe LCIS as classical, or pleomorphic, etc.  or its type as A or B, or something about its potential aggressiveness. Pleomorphic LCIS is QUITE uncommon; they first 'discovered' it around 2000 http://www.ncbi.nlm.nih.gov/pubmed/11117786  (I'm not sure of who/when described it first), whereas classic LCIS was 'discovered' about 1941, and DCIS around 1900.

Maybe they are trying to 'interpret' your pathology report for you?  DCIS is much more common than LCIS (even garden variety classic LCIS.)   37,692 DCIS and 4490 LCIS patients differed  (1988-2001 SEER data) http://www.ncbi.nlm.nih.gov/pubmed/16604564.  So there are about 7 times more DCIS patients than LCIS patients. Since docs are coming from THEIR perspective, not YOUR perspective, surgeons see many more DCIS patients than LCIS patients.  So, just on a statistical basis, I think again it is likely  (though not certain) that you have LCIS and not DCIS, since the lab insisted you have it in your lobules.  But of course I do not know that until I see an actual quote from your pathology report. 

Unfortunately LCIS terminology changes.  There is little that is certain about LCIS (including its name).

It is common to have multiple diagnoses in breast pathlogy specimens.  (I have several, including sclerosing adenoma, ALH, ductal hyperplasia (not atypical), and classic LCIS  in my  pathology report(s) in the same breast.)

It is possible you may have DLCIS (ductal-lobular CIS).  According to this 2002 paper, DLCIS is another name for pleomorphic LCIS. We reviewed 10 cases of pleomorphic lobular (ductal lobular) carcinoma in situ (PL/DLCIS) of the breast and compared them with 14 cases of pleomorphic lobular carcinoma in situ (PLCIS) found in association with invasive pleomorphic lobular carcinoma. http://www.nature.com/modpathol/journal/v15/n10/abs/3880650a.html

If I was in your shoes, I would get another opinion, from a breast surgeon.  There are several 'red flags' (or at least pink flags) that make me concerned that you are not getting the best care from this doc.  All doctors are only human, but your surgeon has made several assumptions/errors, I think.

1) I don't think he really reviewed your pathology report before he called you telling you had DCIS but its lobular carcinoma in situ. Now maybe he means you just have LCIS, but I'm not sure.  When a doc calls a patient to tell them what you have, he needs to communicate this CLEARLY.  If they don't know what you have, he should communicate this clearly too.

2) He seems to be confused as to the proper treatment of what you have.  I am not an expert on DCIS, but from what I understand, if you have DCIS and/or LCIS and nothing worse (i.e. nothing invasive), they do NOT do lymph node removals on excisions (unless the patient insists) or unless they have some STRONG evidence you have invasive breast cancer or are doing a mastectomy.   The reason why this is important is that ANY messing with your lymph nodes puts you at higher risk of lymphedema.  Lymphedema can happen DECADES after breast surgery.  See the Lymphedema forum. The more lymph nodes you have removed, the greater your risk of lymphedema.  IF you do have pleomorphic LCIS (which would be quite unusual), I wouldn't want anyone but a breast surgeon doing my surgery.  

I would be quite concerned of someone insisting on removing my lymph nodes if all I have on my report is LCIS or DCIS, and there is no strong evidence of the possibility of invasive cancer.  In situ cancer by definition has not crossed the basement membrane (that encases the lobules and ducts) thus cannot get to the lymph nodes.

They used to take out breast specimens, freeze them, and during surgery look at them to see if they include invasive cancer.  They don't often do this often anymore - freezing can damage the cells (unless more time consuming procedures are done), and so its harder to see what the cells look like and make a definite diagnosis.  These higher risk breast lesions are hard enough to diagnose by a pathologist as it is - it doesn't need further complication by freezing the sample.  Normally invasive cancer is easily distinguished from non-invasive.  But it can be difficult to tell what kind of non-invasive condition you have.

3) His mention of radiation.  That is, of course, a standard treatment of DCIS, but not of LCIS.   The only place I've seen treating LCIS with radiation are from  France. http://www.ncbi.nlm.nih.gov/pubmed/15691636, http://www.ncbi.nlm.nih.gov/pubmed/9769400

If you do have DLCIS (pleomorphic LCIS), you should be seeing a breast specialist, at least.

If I was in your shoes, I would certainly want an excision (lumpectomy), regardless of whether you have DCIS, LCIS, or DLCIS/pleomorphic LCIS.  If you have classic LCIS, they do an excision not to remove the LCIS, but to make sure you don't have something worse going on.  In about  20% of LCIS cases (the exact number differs with each study) excision shows 'something worse'. For example We found significant upstaging of pure pleomorphic LCIS (LCIS with nuclear grade [NG] 3), up to 25% in core needle biopsy (CNB) specimens, in an earlier study. The aim of the current study was to address the importance of pure classical LCIS (NGs 1 and 2) in CNB specimens along with clinicopathologic follow-up. In follow-up resection specimens, IC or ductal carcinoma in situ was seen in 18% (7/39), a high incidence of residual LCIS was seen in 69% (27/39), and other high-risk lesions, such as atypical ductal hyperplasia, were seen in 36% (14/39) of LCIS NG 2 cases. http://www.ncbi.nlm.nih.gov/pubmed/20395524

IF you have DCIS or LCIS or DLCIS, those cells look MUCH more like cancer cells than ANY of the cells described in columnar cell changes.  Presumably, your CIS cells (of whatever type) contribute MUCH more to your risk of cancer than any columnar cell change.  Here is a link to Stanford's description of columnar cell change. http://surgpathcriteria.stanford.edu/breast/columnar_cell_change/printable.html

Classic LCIS, the most common kind, is  strange in that even if you only have known classic LCIS in one breast in one spot, it puts not only that breast, but the other (called contralateral) breast at risk too.  One reason why the goal of excision is NOT to remove all the LCIS is because classic LCIS is often multifocal (occurs in many spots in one breast), and it is commonly bilateral (occurs in both breasts.)  They normally can't see LCIS on mammogram, clinical exam, or ultrasound, and MRI is not reliable in detecting it, so they don't know where your LCIS is unless they removed your whole breast to find out where the LCIS is.  They stopped ROUTINELY doing bilateral mastectomies on classic LCIS patients when they found that  many early INVASIVE breast cancers can be successfully treated with lumpectomy and radiation.  If you have a strong family history (especially first degree, or multiple second degree relatives with breast/ovarian cancer, especially if pre-menopausal), you need to get referred to a major institution for genetic counseling.  Only about 10-15% of breast cancers are thought to be inherited from a single hereditarily passed mutation.

So I would FIRST get a physical copy of your pathology report (if you don't have it already.)

I think it would be good to get a 2nd opinion, anyways, preferably by a breast surgeon.  If you don't like that doc, see another doc.  I can't stand my breast surgeon.  The first thing she said when I walked in (she read my LCIS diagnosis from core biopsy) was 'If you want a mastectomy, I will fall over in my chair.'  She hadn't even asked about any possible family history yet.

Leaf, thank you again for taking the time to help so thoroughly!  I even learned new things from your post!!  Which I love!  Anyway, I know it takes a good bit of time to research and post your answers and I really appreciate it!

Shirley please do keep us posted and I will be thinking good thoughts for you.  I hope this helps you, I am just concerned for you.

Hello rabrams! Thanks for sharing!  I am having PBM with imm. recon. in June for LCIS, so will be following your path soon. 

I am so thankful and happy that I found this forum soon after starting my journey down this road.

Leaf: LCIS is misnamed as it is really neoplasia not carcinoma. I freaked out when I read my pathology report and when I asked my oncologist about it he said LCIS is not the same as DCIS, so I looked it up. If it was pleomorphic, then that would be another story. I'm a bit uncomfortable about it still being in there but after all I've gone through with the chemo and radiation, I really don''t want to rush in to anymore treatment unless it's absolutely necessary. As they say LCIS is a sign of high risk for bc - well that's certainly been proven in me.

ShirleyFaye: Your internist sounds loopy. Tell her to come to this website and read about the different types of BC - that might sort her out. I'm glad you're getting another opinion. Actually it's interesting as LCIS is often only diagnosed when invasive cancer is found as in my case. How did you come to have this discovered?

Keep us informed on how you go.

Sue

Thanks so much for that Leaf, I read it, but in doing so I found this one http://www.ncbi.nlm.nih.gov/pubmed/11346867 and this one http://www.ncbi.nlm.nih.gov/pubmed/10699897 and this one http://www.ncbi.nlm.nih.gov/pubmed/7834439

I didn't have any LVI or calcifications so that was something. I am worried about my other breast and will have an MRI later this year. I was very lucky my pleomorphic invasive lobular tumour showed up on a mammogram - it was only just palpable to the surgeon who said you would have to know what you were doing to feel it. The bad part was that it was HER2+ve so I've had chemo and radiation.

I'm so glad I didn't panic and have a bilateral mastectomy, I'm sure close monitoring will be just fine.

Sue

Hi bec3, you may be able to find information on it or ask your question and get good info on the 'Alternative treatment' or 'natural girls' threads.  Being new you will be limited to only 5 posts a day but you can browse the threads and see what you find, making notes of all the questions that come up when you do so you can ask multiple questions in one post.  Hope that helps.