Re-checking 2nd opinion pathology reports LCIS etc

I was diagnosed with LCIS a few days ago.  The path report says the diagnosis is supported by positive staining for calponin and smooth muscle myosin and negative staining for e-cadherin.  What does this mean?

I'm scheduled to visit a surgical oncologist next week.  I think the definition of LCIS is so ambiguous in that I have cancer in site that isn't invasive YET it's not cancer BUT it will be treated like cancer. 

I'm sooooooooo sad = (

MelissaDallas is correct.  LCIS is not considered cancer and is not treated as cancer.  For some time pathologists have been trying to get the medical community to adopt a term they believe is more accurate, "lobular neoplasia"….which is indicative of an abnormality and is considered a marker for elevated risk.  If you get asked if you do (or ever had) cancer and if your diagnosis is limited to only LCIS, the correct answer is "no" (i.e. for purposes of medical history, insurance etc.).  Ask your doctor lots of questions and take notes.  There is tons of good background info on this forum and plenty of people with the same condition here.  You are not alone.  Chin up! 

The path report says the diagnosis is supported by positive staining
for calponin and smooth muscle myosin and negative staining for
e-cadherin. What does this mean?

I am not a pathologist or physician.  But these stains are used to help the pathologist diagnose LCIS.  I certainly don't understand everything in this slide show, but they do use these stains to help diagnose LCIS.

In this slide  show, it looks like calponin can help tell the difference between LCIS with  extensive sclerosing adenomas and invasive breast cancer.(p.19).  They are also looking at calponin when comparing DCIS and LCIS (p.13)

http://www.ucsfcme.com/2010/slides/MAP1001A/01Rabb...

E-cadherin is associated with ductal features.  I picture it like Velcro: it helps cells clump together.  Ductal carcinomas (IDC) are typically positive for E-cadherin: their first symptom is typically a breast lump.  Lobular carcinomas (ILC) are typically negative for E-Cadherin; they more typically present as a breast thickness, and form sheets. (p.7-9)  For details, you can try to understand the slide show.  (I certainly don't totally understand it, but it does have interesting pictures.)

Just about everything about LCIS is controversial.  'Cancer' implies uncontrolled growth. Some people also 'define' cancer as able to metastasize and kill you.  If 'normal' cells are on one side of the spectrum and 'cancer' on the other, there are many cells that are inbetween, not clearly normal and not  clearly cancerous.  Its normally easy for a pathologist to tell the difference between plainly normal and plainly cancerous cells, but there are cells that have features of both.  Most people do feel that LCIS is NOT a cancer; LCIS cannot metastasize or kill you.  It just puts you at higher risk of invasive breast cancer.  Unless you have other risk factors, such as an intense family history, such as a 1st degree relative (such as mother, sister, daughter, father) with breast cancer  (especially before the age of 50) or ovarian cancer, or were treated with radiation for cancers such as lymphoma, the majority of women with LCIS will _never_ progress to anything worse than their present LCIS; they will never get breast cancer let alone die of breast cancer.  There is little long-term information about how much risk LCIS confers to patients, but in this blurb from the NCI, they cite that 11 breast cancers were found in 182 LCIS women over 5 years. (6 of these 11 cancers were invasive, the others were probably DCIS.)

http://www.cancer.gov/cancertopics/pdq/treatment/b...

This does NOT mean that these 6 women with invasive breast cancer died. These 6 women underwent breast cancer treatment just like any other woman with breast cancer.  Overall, is 2013, they estimate about 230,000 women in the US were diagnosed with breast cancer, and about 40,000 died. That means that a lot of women who get breast cancer (even invasive breast cancer) die of something other than breast cancer.

http://www.cancer.gov/cancertopics/pdq/treatment/b...

LCIS just puts you at higher risk for DCIS or invasive breast cancer.  The majority of LCIS women will never get DCIS or invasive breast cancers.

clairdelune,  you said "I do understand LCIS is not cancer but I find it so frustrating that it's treated 'as if it were cancer'."

But it's not treated that way.

If you had cancer (even DCIS, which is even more of a borderline "maybe it's cancer but maybe it's not cancer" condition), you would require surgery to remove the entire affected area and you would need to continue to have surgery until clean margins were achieved.  LCIS, like ADH and ALH, which are other high risk conditions, doesn't need to be removed. It can be left in the breast. When you have surgery for LCIS, ADH and ALH, the purpose of the surgery is to ensure that nothing more serious than those conditions is going on. 

If you had cancer and you had a lumpectomy to remove the affected breast tissue, it would be highly recommended that you have radiation therapy afterwards.  Some women choose to opt out, but I'd guess that probably 98%+ of women who have a lumpectomy for DCIS or invasive cancer do have rads.  Rads might even be recommended after a mastectomy, if the surgical margins are close or if there is nodal involvement.  Rads is not required or recommended or considered beneficial for those who have LCIS, ADH and ALH.

If you had invasive cancer, it would be necessary to check your lymph nodes for cancer, so you would need to have a sentinel node biopsy - which, believe me, is not a pleasant surgery.  Women with DCIS who have a MX usually have an SNB too, because of the risk that invasive cancer might be found hidden in with the DCIS.  Not requiring an SNB is a really big thing, since the removal of any number of lymph nodes puts you at risk of lymphedema. Once you've had nodes removed, the risk to develop lymphedema stays with you for the rest of your life, and lymphedema is a condition that once developed, can be controlled but never goes away. 

If you had invasive cancer, it would be assessed whether you need chemo.  And with HER2+ invasive cancer, Herceptin is likely to be another recommended treatment.  Both of these treatments can be very difficult physically and both come with the potential of long-term side effects.

So the good news is that LCIS is not treated as if it were cancer.  The only 'cancer' treatment that is offered to someone with LCIS is hormone therapy, and that's because separate from it's benefits in treating cancer, hormone therapy has been proven to be effective at reducing the risk of the development of breast cancer in women who are high risk.  Breast cancer patients and LCIS, ADH and ALH patients may all be prescribed Tamoxifen, but for very different reasons based on different clinical trial results and different FDA approvals. 

All of that is not to downplay the frustration and confusion about LCIS, or the difficulty in dealing with a LCIS diagnosis.  I started with a biopsy that showed ADH, and then had a surgical biopsy that found DCIS and a microinvasion of IDC.  Although I know logically that it would have been much better if I'd only had a high risk condition like ADH, sometimes I think I'm lucky that I had the DCIS and particularly the microinvasion, since it made my diagnosis so much more clear and it gave me fewer choices. It also means that I'm not waiting for the shoe to drop - at least not for that breast.  For the other breast, yup, I'm kind of in that same boat, since my risk to be diagnosed again, having had breast cancer once, is about the same as someone who has LCIS.  So I do understand the frustration of being high risk.  But ultimately I'd rather be high risk - and diligent with my screenings and hopeful that I never will develop breast cancer (again, in my case) - than have breast cancer.

"Lucky" is certainly a relative term, isn't it? 

I do sometimes use the term, both for those who have DCIS (or DCIS-Mi, as I do) and those who have high risk conditions, but probably it's more accurate to say that these types of diagnoses are "not as bad as it could have been".  Or maybe "the better among some bad possibilities".  

Re oncologists.  Your first stop is a surgical oncologist, who will discuss whether or not an excisional biopsy would be advisable.  Your next stop is a medical oncologist, who would be the doctor with whom you would discuss hormone therapy.  The surgeon just deals with the surgery.  The MO deals with managing/reducing risk and any post-surgery treatments.

Hi Beesie,

I met with the Surgical Oncologist this morning.  Surprisingly she wasn't well versed with my path report.  She said that ALH and LCIS were essentially the same and treated the same and when do you want to schedule surgery.  I am extremely disheartened that she didn't question the path report (i.e., "at least ALH, can't rule out LCIS").  I thought we would 'discuss' different options.  I ended up telling her that I was thinking about a 2nd opinion from (a very experienced pathologist in breast tissue) from Vanderbilt.  She didn't like that one bit.  She said it was law that she obtain a path prior to surgery (and was leading me to think it was only from her department and not from another source ... regardless, I didn't want to get into an argument so I didn't question further).  

I asked questions and didn't receive answers.  Questions such as:

Q:  Why wasn't the nodule in which the ALH/LCIS identified? Since neither of those dx were the reason for the nodule (ALH/LCIS being incidental findings, etc.)

Q:  The nodule was smaller then any one of the four 12 gauge core needle biopsies taken ... it was eradicated along with material surrounding it ... why go in for more??  IF ALH/LCIS is contained in lobules  ... why go exploring for more and more and more?

She said I was a great candidate for an MRI and could have this done yearly as my breast are so dense.  And now ... they'll be even denser (sp?) with track/scarring.

I'm very sad & frustrated.  And I feel like no one will commit to saying one thing or the other.  And let's all rush to surgery b/c it's so much easier then dealing with the unknown.  As she said "25% of biopsies are upgraded in status".  

I've looked on youtube, of all places, and they show beautiful examples of slides with LCIS.  There is no reason why it couldn't  be diagnosed ... for goodness sake ... .  Here is one such video http://www.youtube.com/watch?v=RrlRMBL8xpk

I hope this is a decipherable writing ... I'm too upset to even think straight.  

Thank you for your continued contact!

This website and everyone's postings have proved invaluable to me.

Kind Regards,

Clairdelune

= /

This is a good article:

http://ajcp.ascpjournals.org/content/138/1/72.full

Bless you Beesie = )

Yup, you are correct in your understanding that the biopsy was to check on a specific nodule.  The pathology report from the biopsy doesn't explain what that nodule was.  The report, and I quote, says "At least atypical lobular hyperlasia, cannot rule out lobular carcinoma in situ."

That is why I want to make sure which it is before going in for more removal.  Vanderbilt should have my biopsies by early afternoon.  Hopefully finding out what the nodule was may help to determine the rx of ALH or LCIS.  

I want to make an informed decision.  I could cry b/c as I was leaving the office yesterday the surgeon said the other 2 nodules looked cystual  in nature ... which means they could have had a FNA perhaps or nothing.  They were diagnosed as duct ectasia (non-remarkable).  

The person who did the ultrasound said I should wait b/c the margins appeared very clear, etc.  But when the radiologist came in and started going on and on ... I got so scared I was like .. do what you want ... help me!  I made a snap decision and I regret it.  From now on I will be informed.  Once they say those words 'poss cancer' ... all reason seems to go.

Ahhhh, Monday night quarterbacking = /

Hi Clairdelune,

My core needle biopsy pathology report has similar uncertainty, stating that the “differential diagnosis” includes ALH [with ductal involvement] and LCIS, which I now understand presents two possibilities, but not necessarily both.  It is my understanding that ALH and LCIS are distinguished by pathology only on the extent of involvement of the affected lobule(s), so it may be difficult to definitively state whether the lesion meets the criteria for LCIS, particularly in cases that are ‘borderline’ or in which the affected lobule(s) are not fully represented in the needle biopsy. Since I will have an excisional biopsy to confirm there is nothing worse hanging out nearby, I expect to get the final diagnosis from the larger sample. If no more ALH/LCIS or anything else is found (first I will do the happy dance!), I may also send my core biopsy slides for a second opinion to try to get a better estimate of my increased risk. Best of luck to you!

Since ALH/LCIS can't be detected by regular screening methods, I wonder
how it is detected when it becomes 'invasive' and whether or not it
transitions to a fast moving cancer.

Unless you have other risk factors (such as BRCA positivity, radiation treatment for lymphoma, etc), the majority of  ALH/LCIS women will never go on to get anything worse (in other words, DCIS or invasive.)  Of those that do go on to get DCIS or invasive breast cancer, they will get detected like any other DCIS or breast cancer - detected by mammography, clinical exam such as lump or thickness or dimple, ultrasound, or MRI.  If there are other methods in the future that rival our present imaging studies, or another way of detecting breast cancer is the future, I'm sure they will be employed too.  From clonal studies, its thought that a minority of LCIS lesions actually themselves become something worse  (??maybe 1 out of 10???).  When LCIS women go on to get something worse in the future, it often appears in areas of the breast that previously looked normal under imaging.  Most LCIS women who go on to get something worse get DCIS or IDC.  You can't die of DCIS alone.

LCIS women are known to be at higher risk than women in the normal population, so they are monitored more carefully.  If LCIS women don't get bilateral mastectomies, the strategy is to try to detect breast cancers as early as possible. Antihormonals are an option that seem to decrease the number of ER positive breast cancers. Antihormonals are not for everyone; bilateral mastectomies are not for everyone; surveillance is not for everyone. Most women who get breast cancer do not start out with having LCIS.  Yet over half of the women initially diagnosed with invasive breast cancer end up dying of something other than breast cancer. The average age to get breast cancer is in one's 60s.  There is no right option for everyone with LCIS; everyone is different. 

I don't know; I'm not a radiologist. I highly doubt if there are rules that apply to every radiologist. Some radiologists may choose not to give a mammogram a BIRADS rating.  I would assume in a radiology report, the radiologist would normally say things like whether or not there is something suspicious.  If, for some reason, they can't make a judgement, they might recommend how to proceed, sometimes depending on the clinical exam or the history of the patient.  (They may not have access to all of the patient's history, or have time to access it all.)