LCIS and PASH

WellnessWoman

First, as a newbie on the list, let me thank all of you for your postings.  Your tidbits in the the "Not Yet Diagnosed but Worried"  helped me especially while awaiting the diagnosis of my excisional biopsy.  And the discussions on the LCIS forums helped me be prepared for my post-op visit today. 

The excisional biopsy was done after core biopsies had revealed PASH (pseudoangiomatous stromal hyperplasia) for an approximaly 1 1/2 cm lump.  At first, I wondered why bother with further surgery,  if the initial core biopsies were negative for cancer.  The surgeon and radiologist apparently felt that this was a prudent next step, due in part to the ultrasound findings and perhaps family risk factors.  And now, with the LCIS found, their wisdom is all the more appreciated.  

So, my question to this kindly aberrant-cell sisterhood, is:  how many of you out there have both the PASH and LCIS diagnoses.  And, of those folks, how many would never like to ever see again a pathology report with a word greater than six letters or two syllables!  (Just B9 is fine).  

The tumor I had was a nodular PASH, and apparently not as rare as previously thought. To have both PASH and LCIS, though, seems to give a different sense to the notion of 'being special.' And when spelled out in full--oh, boy, that's when any sense of "warm fuzzies" disappear from the verbal reassurance that you don't technically have cancer.  

So, ladies, do any of you out there have these two multisyllabic combos?  Were you intimidated by the terminology?  Did you devise any humorous nicknames for these two diseases to make them less scary?   

leaf

Welcome to the LCIS forum - I'm sorry you have to be here, and even more sorry you have something more unusual than 'just' LCIS. I don't have PASH; I do have the garden variety of classic LCIS.  The terminology was awful at first.

  I'm so sorry you have to be 'extra special' in a way that no one wants to be 'extra special' - that means you have to spend more time at non-breast cancer specialists explaining what LCIS and PASH are.  (I had one doc protest, "But lobular carcinoma in situ has carcinoma in its name!'; another trainee asked after my careful explanation that LCIS is not cancer, "And what organ is this in?")

I'm so glad you're trying to deal with this with humor.  Until you have some sense these conditions will affect you  (Will you be one of the women who have continuing issues coming up with their breasts/ How will this affect your life?/ Will you immediately get invasive advanced breast cancer or some other life-changing condition?) its very hard. We all want to be ready for whatever is ahead for us; we want to have some control over our future.

The worst thing is to feel that you are alone.  But we are here.  Even though I don't have PASH and many of the other people here don't have PASH, I can try to 'put myself in your shoes' and hold out my cyber hand to you.

piscesdragon

I'm "extra special" too.

Although I was not diagnosed with PASH, I did have DCIS, LCIS, ADH and ILC in both breasts! Given that diagnosis, I don't know which 'tribe' to join  and I've never found anyone else with the same sort of 'alphabet soup'.

Needless to say, after two failed attempts at clean margins, I had a double mastectomy late last June. The specialists decided NOT to do chemo or radiation but I am on tamoxifen for the next 4.5 years.

WellnessWoman

 Dear Leaf :

    I wonder  what would have happened if you told that trainee, with a straight face,  that the organ LCIS comes in is  "flat feet."  Maybe he would have scrambled off to the library for one interesting literature search.  

      Thanks so much for the reply.  You really have been an amazing part of this cyber support group. And now,  I guess you've branched out to being an educator-- for those up and coming trainees as well as doctors needing awareness of this uncommon diagnosis. 

And for PiscesDragon, thank you for the response and the real eye opener. Yes, this is one part of life where being special isn't the news for which we were hoping. And I'm glad to hear that you had the definitive intervention and have parted with those unwelcomed,  cellular miscreants.   

Yes, Leaf, humor seems to help.  When I was having the dreaded wire-placement for the biopsy, there was an absolutely wonderful mammography technician at my side.  I was pretty scared, waiting in the wheelchair to be poked and prodded without the benefit of the IV sedation. My pulse no doubt went up  more when I was told  we were switching rooms-- from the ultrasound to the dreaded mammography machine. Having a needle advanced, while being compressed from a 3d into a 2d world,  was not an image I was looking forward to.  

     In an attempt to allay my unrest (and hide my fear), I shrugged and said that I didn't get a good sense of the 'feng shui' of that  first room anyhow.  The technician had a good belly laugh out of that one.   She seemed to take the cue from there on, providing some cute anecdotes and other well-appreciated distractions when needed.  Despite the needle being advanced about 5 cm for the guide wire placement while in the machine,  minimal discomfort was felt.

   Admittedly, with kindly, talented health care providers like her, the road ahead seems less daunting.

 The next step is the MRI screening, genetic counseling, and possibly Tamoxifen. And the "cognitive reframing" for those long-winded, highfalutin terms. For starters,  maybe instead of "LCIS,"  what about  "lobularly challenged? "  And for the PASH,  since presumably much of it has now met its fate in formaldehyde, I'll consider my PAST.  No sense of keeping more diseases around than necessary!  

Chocolaterocks

Wellness Woman,

Leaf does a great job, originally I had LCIS and also pash was included. I had very early breast cancer and was encouraged by the forum to keep pursuing diagnosis which was ILC. Good luck and hang in there. Chocolate

WellnessWoman

Thanks for sharing that.  It's great that this community does such a great job supporting our quest to wellness. 

KellyMaryland

I had PASH with my PLCIS, though no one seemed interested in the PASH once the PLCIS was identified.  Sorry you are joining these ranks but happy to be here for you.

Kelly

Crescent5

I do not have PASH, but I do love your term lobularly challenged! I have ALH, LCIS and PLCIS. I had no idea my boobies were so active.

I think with any of this stuff, we have to do as much research as we can and learn how to weed out the garbage. It's imperative to find (or keep) a dr who is right for you. If your dr doesn't get you, or doesn't seem to understand the issue, seek another opinion. My first dr was obnoxious, but the moment I first met with my 2nd dr, I knew I was in very good hands. I have to learn to trust what she tells me, but I also do my research if something doesn't sit quite right.

leaf

Thank you for your very kind words, though its you who are going through this new diagnosis.  I love to hear how other people choose to handle their very different situations, and make their own very unique treatment decisions. 

I can't blame the poor trainee - coming out of school he must have just been swimming in info, trying to figure anything out: information overload.  I'm so glad he was honest and open enough to ask rather than pretending to know something that he didn't. 

I love it when people know the boundaries of their knowledge.   Its hard to know the boundaries.  I've been caught many times on this.  I often do not realize how little I really know about a situation,  that I just forgot important factors, and how solid (or not) is our evidence regarding one treatment/decision or another.

WellnessWoman

     Thanks, everyone.  Like many, I came to this forum confused, scared, and feeling very alone.  I'm so grateful to learn that I'm not alone in this new journey.

     Leaf, in terms of the boundaries of knowledge, the term,   lobular carcinoma in situ, creates confusion.  Carcinoma is cancer.  Carcinoma is a pathology term, describing potentialy invasive  little buggers. In general, cancers have the potential for being the nasty, cellular punks, invading neighborhoods they don't belong. But some cancers, like LCIS, are the more  suit-and-tie variety that are more well-behaved, less intrusive, but visitors nonetheless that overstay their welcome.

        Even advanced clinicians, not in the breast field, may be confused as to why a patient would say that they don't have or had a cancer, and yet have a diagnosis that clearly by its name indicates otherwise.  

    Perhaps a more useful, biologically and linguistically appropriate term would be "a  low grade, non-invasive cancer, unlikely to be associated with further  invasion."  Then, to further  clarify,  "LCIS is also a  risk factor for women to develop other, more invasive (higher grade) breast cancers."

    For us,  newly diagnosed with a "carcinoma,"  this helps reinforce the facts that 1) "Clean margins"  aren't relevant; 2) surgery isn't needed immediately to cut out all the tumor; 3) testing isn't needed to find out all the spots where it exists.  

     Instead, we are now women charged with the task of risk factor monitoring and modification.  MRI, ultrasounds, and mammograms are for screening for far less welcomed tumors appearing.  They are not for monitoring the LCIS itself, since that's not the disease that would likely cause us harm.  Its the unruly relatives we don't want stopping by. And if the risk is high enough, the meds or even bilateral mastectomies are warranted to prevent those unruly relatives from ever showing up or getting rid of them if they do come unwelcomed. 

   KellyMaryland indicated with PASH, once diagnosed with PLCIS, the PASH was of no interest.  In many respects, once diagnosed with LCIS or PLCIS, these tumors themselves are not of interest.  Its all the other risks associated with them that are. LCIS and PLCIS is a cancer we can live with---their bad cousins are the ones we prefer to live without. 

      For Piscesdragon and Crescent5, maybe we could  term our "alphabet soup" crew here as the  "active boobies." club.  Whether LCIS, ILC, PASH, PLCIS, ADH, we have a concoction of long-winded diagnoses that just make us special in our own mammary way. 

      And the point from IloveChocolate is well taken.  We do just need to hang in there--keep up with the monitoring and interventions as recommended.  We have 'active boobies' that need a little extra TLC. 

Crescent5

Wellness woman, you have an extraordinary talent with words. If you wrote medical journals, I would actually read them!

WellnessWoman

leaf

Almost every aspect of LCIS is controversial.

The NCI (and many others) say that LCIS should be really called lobular neoplasia. When this issue is addressed in the literature, most (not all, but most) authors think LCIS should more appropriately be called lobular neoplasia.

The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5  Some other authors disagree with this stance.  But LCIS was named by 2 prominent pathologists in the 1940s BEFORE they knew the natural history of the disease. (DCIS was discovered around 1900.) These pathologists in the 1940s thought that LCIS was analogous to DCIS because of the way it looked under the microscope.  They were wrong.  There is about 7 times less LCIS than there is DCIS. http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full

Unlike LCIS, they do try to remove all DCIS, because, while DCIS is thought to eventually become invasive cancer.  They don't normally try to do this with LCIS, because LCIS is not normally seen on mammogram, ultrasound, clinical exam, or reliably by MRI, so they wouldn't know where to excise. LCIS is also usually thought to be multifocal (occurs in several spots in one breast) and often bilateral (in both breasts.) If you excise the entire breast, that's a mastectomy.  LCIS is often found not AT the site of a lesion (lump, calcification, distortion, etc that prompted the biopsy), but often adjacent to this lesion. When LCIS women go on to later get invasive breast cancer, the invasive breast cancer often occurs in a place that was previously thought to be normal (by screening). No one has managed to actually study this directly, because in order to diagnose LCIS you need to look at the tissue under the microscope, which requires its removal, so its not present to turn into an invasive cancer.   In this 2008 paper, they found most (not all, but most) of the subsequent invasive breast cancers are clonally unrelated to the earlier LCIS. http://www.ncbi.nlm.nih.gov/pubmed/17380381  If an LCIS woman subsequently gets invasive breast cancer, most often its IDC, not ILC (though there is an increased incidence of ILC in the LCIS women who go on to get invasive breast cancer compared to the 'normal' population.)

When a person is initially diagnosed with LCIS and nothing worse, and an invasive breast cancer is subsequently found, it can be hard to know in the first few years if the invasive breast cancer was there at the same time as the LCIS, or whether the invasive breast cancer is due to the presence of the LCIS.) (ILC in particular is also known as 'the sneaky one'.)

So LCIS is a weird disease. Often its like 'action at a distance'.

This is different from DCIS. In DCIS, they want to remove it all, and women often get multiple surgeries to get 'clean margins'. There are many types of DCIS, ranging from quite aggressive to indolent.

There is controversy about the classification of LCIS and DCIS.  Some breast surgeons insist that both are cancer, some insist both are not cancer, and some insist only one of the two is breast cancer. Some insist that the term 'carcinoma' should only be applied to some types of invasive breast cancers. Some cells clearly look normal, and some cells clearly look cancerous, but there can be controversy inbetween.  (Different pathologists can use different criteria when classifying something as LCIS or DCIS or ALH or ADH.  That's why some people choose to get their slides reread.) Different prominent pathology centers can have somewhat different criteria for LCIS, and these criteria can change over time.

In this paper looking at SEER data,in this study, the incidence of subsequent invasive breast cancer (adding up the risk of both breasts) was actually  higher in LCIS women than DCIS women.  http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full  Since there are much fewer LCIS women than DCIS women, its hard to study.  Its also difficult because some authors include DCIS as a 'subsequent cancer', and others only count invasive breast cancers.

WellnessWoman

Thank you so much for the detailed response--and the reference material.  You really are incredibly knowledgeable about these matters.   I'm curious if there are any pathologists lurking in the forums that could weigh in on this.  

You are wonderful, Leaf, to take the time to share your perspective and knowledge.