2 Cancers

CelineFlower

Ok a little background...

Diagnosed with IDC in right breas

a biopsy was done on left breast.. but i never got(or just didnt remember) getting results..so today at chemo i asked for a copy of the resutls

I am to exhausted... to do research.. could someone pls help translate the pathology for me ?

My nurse would not discuss it to much saying that the doctor should have told me...she did say that , the one in the left is less worrisome then the IDC in the right breast.. and also said the LCIS probably grew alot slower and had been there longer...but also said they were 2 different cancers

So here it is..

Lobular Intraepithelial neoplasia (ALH-LCIS SPECTRUM)

An ECADHERIN STAIN IS CONFIRMATORY

i know that LCIS is....but not the other stuff..does er/pr/her2 matter?

god damn cancer... i hate this ....

MelissaDallas

The AlH is atypical lobular hyperplasia, one step down from LCIS, so it is just another high risk factor lesion. Not cancer yet

Beesie

Celine, I'm responding to your PM but I'll start off by saying that I don't know a lot about ALH or LCIS. My other editorial comment is that you need to be talking to your oncologist about the implications of this, and not talking to the nurse, who I'm not sure has all the right information.  

From what you say is in the pathology report, it appears to me that your diagnosis is not clearly LCIS - it's somewhere on the ALH - LCIS spectrum. As MelissaDallas said, ALH is a high risk condition. And even LCIS these days is not usually considered to be breast cancer; it's been redefined as being a high risk condition. This is because in most cases the LCIS cells do not evolve to become invasive cancer; instead, the presence of LCIS is a marker for the possible future development of breast cancer anywhere in either breast. This is different from DCIS, where invasive cancer develops right from the DCIS cell. What's significant about lobular intraepithelial neoplasia is that it's often found in both breasts, and if breast cancer develops, it might develop in either breast. So despite what the nurse said, it could be that the BC that was in your right breast was in fact indirectly related to the presence of lobular intraepithelial neoplasia in your left breast, in that the lobular intraepithelial neoplasia signified that you were at risk to develop breast cancer in either breast and in fact you did develop BC in your right breast.

All of us who've been diagnosed with BC are considered to be higher risk than the average woman to be diagnosed again. Of course most women are diagnosed only one time, but our risk of a second diagnosis is a bit greater than average. So this is what I think you need to ask and discuss with your oncologist: How much additional risk, if any, does the lobular intraepithelial neoplasia confer on you, above and beyond the risk you now have from having been diagnosed with BC one time? 

I hope that's at least a bit helpful. And I hope that anyone with LCIS who knows LCIS a lot better than me will chime in and correct anything I might have misstated.

Cowgirl13

Celine, your doctor should have gone over your pathology report with you--whether it was your surgeon or your oncologist.  Please call and make an appointment for your doctor to go over it with you.  Not his assistant.  You will feel so much better after you have done this.  So i'm hoping you check back in and let us know you made the call.  Hoping for all the best for you, sweetie.

It does get better--much better.

Lizie

CelineFlower

my onc is useless ... and my surgeon is on vacation... im seeing him the 11th of march after chemo ends..,

but i guess ill have to corner my onc... anytime ive brought up the subject of reoccurence he daftly avoids it and when i asked about "score" he acted like he had no clue what i was talking about....

I couild tell on the nurses faces that the doc should haver told me about this...

I feel with their push for "breast saving surgery" they either omitted on purpose or thru neglect to give me full disclosure about my chance of reoccurence..

I am angry.. and... scared

but ill get to the bottom of this

thank you for your pov's it is most helpful

Beesie

Celine, if you think your oncologist is useless, then ask to see a different oncologist. If you were in a small town at a small hospital and there was only one oncologist, then you wouldn't have much choice, but in Montreal that's not the case. Many people change oncologists to find one with whom they 'fit'.  This is going to be a long term relationship, so you need to have an oncologist that you are comfortable with. And you need to have an oncologist who answers your questions to your satisfaction.  

A surgeon's expertise is surgery; you need to be talking to an oncologist about these issues. I think in your shoes what I would do is talk to my family doctor, explaining my concern and discomfort with the oncologist and asking if he could assist in getting me in to see a different oncologist. 

beacon800

It must have been so disturbing to see this path report without your doctor giving you a heads up.  I can just imagine how that would feel - quite panicking - at least I would panic.

However, it's not that bad.  It's not cancer.  LCIS is not cancer.  LCIS is sometimes called "lobular neoplasia".  ALH is when the odd looking cells don't full up the lobule sufficiently to qualify as LCIS.  So they are finding stuff that is between atypical lobular hyperplasia and LCIS on you.   That is not a very serious finding, especially now that you are in treatment for the IDC.  Pretty much that ALH-LCIS finding would require you to have increased surveillance and possibly take tamoxifen or other hormonal.   No doubt you will be having increased surveillance and a hormonal anyhow and nothing will need to be done special for this other finding.  keep that in mind, it's not cancer and it won't change your treatment plan, unless you decided to do a bilateral MX for prevention, which normally would not be recommended, but is an option for some, just like it would have been in your IDC treatment options.

So really, it does not do anything different for you.  Don't focus on it too much.  (((hugs)))

leaf

I think Melissa, Bessie, and beacon have given you good information. 

There is a lot of controversy about LCIS. I would add is that most docs now think that *some* (not all) LCIS lesions probably do become invasive breast cancer.  Other LCIS lesions will never become invasive cancer in the patient's lifetime.  Many docs feel this way because some (not all) LCIS lesions are clonally related to a nearby invasive breast cancer. http://www.ncbi.nlm.nih.gov/pubmed/17380381

As Bessie said, the LCIS may have existed before your IDC. LCIS is usually an incidental finding  when doing a biopsy for some other reason, often suspicious calcifications.  Often LCIS is found not *at* the site of the, say,suspicious calcifications, but adjacent to them.

Lobular neoplasia encompasses both ALH and LCIS.   Some papers have even referred to LCIS, at least in its early years, as being moderate risk, not high risk.  One ACS paper about MRI screening (http://www.ncbi.nlm.nih.gov/pubmed/17392385) opines

While lifetime risk of breast cancer for women diagnosed withLCIS may exceed 20%, the risk of invasive breast cancer is continuousand only moderate for risk in the 12 years following local excision.⁴⁶

  (Unfortunately the free version of the paper was moved or removed.)

There is probably a lot of controversy, but, for example, this paper opined that  invasive breast cancer who also had LCIS could be treated without regard to the LCIS; the LCIS did not affect the recurrance rate in their sample. http://www.ncbi.nlm.nih.gov/pubmed/10699897 I have not looked at other papers with a different point of view.

Of course, its really important to get the opinion of your oncologist about your particular situation.  Most  things regarding LCIS are controversial, and your onc will undoubtedly have a better idea about the 'big picture' than I do.

CelineFlower

Thank you everyone for leading me in the right direction...

and as easy as it would seem to be, to change onc's ...im not having much success.. but i am see him tomorow and will tell him myself i guess... not a big fan of confrontation, but we have done all we can... spoke to his boss... etc..

so i guess its up to me

I am trying to put together a list of questions to ask him... 

could use some help if anyone has suggestions..

this one is defiently on the list.. thank you bessie

How much additional risk, if any, does the lobular intraepithelial neoplasia confer on you, above and beyond the risk you now have from having been diagnosed with BC one time? 

so unfair to have to make all these decisions while in treatment... sigh