help with path report

Anonymous

I am trying to determine if my path report is mostly good or mostly bad. I go for a post op check on the 23rd and want to make sure I have all my questions ready to go. Had wire-guided excisional biopsy for micro calcs near chest wall.

Surgeon said, biopsy negative but they did find LCIS. He called it fortuitous since they didn't find anything else with it.

I am going to interview both surgeons and oncs while I make up my mind on preventative care.

Here is the path report>

Architectural pattern: solid
Size of LCIS: 2.4 cm (approx)
Histologic type: LCIS
Necrosis: Focally present
Calcifications: present
MaRgins: Negative
Distance from closest margin <1mm (deep margin), remaining margins are at least 0.5 cm from LCIS
Additional findings: Fibrocystic changes asociated with calcifications
     Sclerosing adenosis and usual ductal hperplasia
E-cadherin stain shows negative staining in LCIS and supports the diagnosis.

Any thoughts are appreciated!

Jill

DocBabs

Hi Jill,I have /had tthe same pathology.It's good. I'm followed by an oncologist on a regular basis and I have mammo , ultra sound and MRI spaced out at 6 months.Onc visits with breast exam every 3-4 months. I also see my gyn for pelvic ultrasound every 6 months.There was some talk about taking Tamoxifin but I have a past medical history of pulmonary embolism so that was turned down.LCIS is not a cancer . It's a change in the cells that may or may not ,sometime in the future, go on to become a cancer. The rate is very low.Careful follow-up is a reasonable treatment plan.

Barbara

.

Anonymous

Jill-----I was diagnosed with LCIS over 7 years ago and I also have family history of bc (mom had ILC); I do high risk surveillance of alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months, took tamoxifen for 5 years, and now take evista for further preventative measures. I am doing well and haven't had to have any further biopsies since my lumpectomy. While I don't feel "lucky" (I think "fortuitous" means fortunate or lucky)  to have LCIS (we have our own set of special challenges and issues), I do feel very fortunate to not have invasive bc and all that goes along with it. Feel free to PM me anytime.

Anne

Anonymous

Thanks for the info. I was thinking that it was leaning to the good side, siince it wasn't atypical tissue or anything. I do have an aunt with breast cancer diagnosed a couple of years ago, but she is 86. 

 I think the surgeon meant fortuitous or lucky in that they found it so now they know to watch carefully for developments. Had I not needed the biopsy, it might have been worse by the time they found something.

I think I am also going to begin taking Brevail proactively.

 I'll let you all know how things progress. I was all set for mastectomy when this all started, but may rethink that. Glad to know I have the time to make that decision.

Anonymous

fluff----sent you a PM. LCIS cells are atypical---it is a step further along the bc spectrum than just atypia (ADH or ALH), with double the risk. What is Brevail? and how does it work?

anne

mountainmomof3

Jill,

Make sure it's classic lcis and NOT pleomorphic.  The pleomorphic kind usually has calcifications and is more serious than classic.  It's treated more like dcis.  I would get a second opinion on the path report.  I was diagnosed with pleomorphic lcis last May and had a double mastectomy in Sept.  Was stage 0 and no lymph node involvement, so no chemo, rads or tamoxifen.  PM if you want.

leaf

I agree with mountainmomof3.  I would definitely want to know if its classic LCIS or pleomorphic LCIS.  That may make a big difference in treatment.  (Yes, all the treatments are controversial, but pleomorphic even more so.  Pleomorphic LCIS may be more aggressive, and some treat it more like DCIS.)

Different pathologists and different places can define these conditions differently, but this website says classic LCIS does not have necrosis.  http://pathologyoutlines.com/topic/breastmalignantlcis.html  (I had type A classic LCIS.  There is also a type B classic LCIS.)

Anonymous

Hi all, thanks for the responses. I actually called the pathologist as I don't see the surgeon for follow-up until next week and decided to by-pass the middle man.

He said it is classic LCIS, not pleomorphic. Said pleomorphic cells present much differently and went on to explain the difference...I couldn't write fast enough to get it all down. It is type A, not type B. I also asked him that if you had to have LCIS would you rate this as low, medium or high risk. He said with everything he looked at, he would put it at low. He seems to have good credentials, at a university hospital and is a professor and published.

So, I am making appointments with surgeons and oncologists tomorrow, both in the university setting, big practice and small, and decide how I want to proceed. I want a doctor that will also work with me on complimentary nutritional supplements in conjunction with whatever protocol I decide on. 

My best friend is a nurse practitioner who has also had some minor breast issues and is very educated on this. She is going with me to all my appointments. My cousin is a pharmacist at a university hospital and has also worked with Novartis and is very knowledgable of the top docs and approves of the ones I have chosen to meet with.

So...I feel like I am doing all I can to make some educated decisions.

I decided to get a colonoscopy today to just add to or reduce the stress, whatever the report turns out to be, so off I go.

 Jill

leaf

I'm so glad it came back classic type A!  It sounds like you have a great support system.

You'll probably read this after you come back, so I hope your colonoscopy went well.  A former doc said colonoscopies save more lives than mammograms do.

Luckily, you will have time to decide what surveillance/treatment is best for you.  Let us know how it goes, OK?

beacon800

Hey Jill your post is interesting.  I did not know that classic LCIS could exhibit necrosis.  Mine did too but I also had focal areas of PLCIS which is what I presumed caused the necrosis.  You are doing all the right things and I am sure you will be fine.  I imagine your doc found the LCIS "fortuitous" in that it is usually not found except by accident and therefore treatment is delayed.

DocBabs

There really is no treatmant required for LCIS . I think he's using fortuitous in this case to mean chance and the fact that it's not cancer. 

leaf

Maybe different pathologists have somewhat different definitions for classic LCIS and pleomorphic LCIS?  I know I've seen statements that say the lesion of interest (in other words, the lesion that prompted the biopsy) is often not *at* but *adjacent to* the LCIS area.  Maybe there isn't a consensus.  I don't know.  Maybe some of the Pleo LCIS women know?

KellyMaryland

Hi all.  There was a July 2010 article in the Archives of Pathology and Lab. Med. (sorry, I don't know how to link it here) that speaks to LCIS "variants" as PLCIS and LCIS with necrosis.  My PLCIS was found adjacent to the area of benign fibrocystic changes that was excised.  No mention of necrosis.  Am having a bilateral mastectomy on Jan. 26th and will report back with my pathology details.....we should start our own research group on pleomorphic LCIS...

All the best,

Kelly

Anonymous

I did forget to mention that once I settle on a doctor for follow-up, I am going to request the slides be re-read just to make sure.

Colonoscopy went fine. All clear. I should be more worried about that as both parents had it. Mother caught early and just had a resection and has been fine since. Father had cancer of the duodenum (rare) and it did not present until it was too late to do much

Anonymous

I had mastitis in the same breast, in the same general area of where my incision is, when I was nursing my daughter 22 years ago. Had to stop nursing then. About 8 years or so after that, on a routine mammogram, they called me back to do an ultrasound on a spot in that area that they ultimately decided were milk ducts that had fused themselves together and nothing to worry about.

That was 14 years ago.  Wonder if there is some kind of connection? I didn't find a lot on in researching.

mountainmomof3

I find the mastitis connection very interesting.  I also had mastitis, twice, while breastfeeding -- pretty sure it was the same side as the plcis.  Glad you're getting the slides re-read. 

Anonymous

Well, here is the update. I settled in on Chase Lottich, who is wonderful. She ordered an MRI, which was completed and they saw another little spot right by the first. So, they did an ultrasound bipsy. The report came back completely clean.  Yay!  But no...

 She conferred with the pathologist and did another reading and feels that since there is lcis in the area, they may have missed the samples they were trying to get.

 So...it is another surgical biopsy on January 27. This will be the first one that she does (the first one was done by a general surgeon with 50% of his practice in breast surgeries).

 I told her not to quit until she finds it. I am also not feeling that I can be lucky three times in a row. I am glad for the thoroughness and the 24 hours of happiness I felt yesterday.

leaf

Oh &%^*(, fluffqueen.  Its good to be happy for at least 24 hours. 

I'm not trying to tell you what to do, but I do want to share my story.  I told my breast surgeon to be thorough when she did my surgical excision (after LCIS was found on my core biopsy.)  

I had 2 biopsies within 2 weeks of each other a year after my surgical excision, for a spot that was shrinking on tamoxifen.  I was sooooo afraid.  But both came back benign (1 scar tissue, one ALH.) The scar tissue biopsy was INCHES away from my excision scar, so I guess the breast surgeon did go all over my breast.  (The bs refused to look up her surgical report, even though the radiologist said he'd ask her.)

Well, another year later (2 years after my surgical excision), I got a 2nd opinion at a major institution. I have a weak family history.  They said no MRI screening for you.  Too much scar tissue.  Not even a *baseline* MRI where they would promise not to do any biopsies from what they saw.  Too much scar tissue.  Just want you to consider benefits and risks.  Its hard to find the balance between the two.  So maybe there is some point where there is *too* much thoroughness, and you may want to discuss with your surgeon some guidelines when they will be *too* thorough.....

Holding out my hand to you.

Anonymous

Thanks. When I met with her today she and the pathologist just didn't feel comfortable that they had gotten the right tissue samples. I agree with you on too much. However, I also asked her about the ultrasound one. The first one had to be done surgically as it is on the chest wall, and it didn't make sense to me to be able to do an ultrasound one when it is literally right by the first spot. She felt it would be much less invasive, and it was, however, I think it might have been smarter to just go in and do it surgically the first time.

The place I am going was granted a three-year, full accreditation designation by the National Accreditation Program for Breast Centers (NAPBC), a program administered by the American College of Surgeons. This distinction is the first for a comprehensive health network in the state of Indiana. Accreditation by the NAPBC is only given to those centers that have voluntarily committed to provide the highest level of quality breast care and that undergo a rigorous evaluation process and review of their performance. So I feel like I am in good hands there.

Also, she was the first female surgeon to graduate from Duke, and is highly thought of by virtually everyone I talk to including my closest friend and nurse practitioner. In addition, they just lured Robert Goulet, Professor of Surgery and Medical Director of the IU Breast Care and Research Center, at the IU School of Medicine to their facility, which apparently is huge.

That is a long way of saying I think I am getting good care and it is a good team of people. I had just hoped I had a final diagnosis and could make a decision and move on. Now, another two-three weeks of waiting. Gives me two more weeks to keep working on my bc thesis I seem to have started. However, I had been focused on LCIS, now I am not sure what to study!

I might go to Florida next weekend and just bake in the sun for a few days first. At least I will look nice and tan for this THIRD biopsy.

Thanks for your help. It is nice to have a voice of reason.

leaf

It sounds like you are in excellent hands, fluff.  Florida sounds like the place to be! Keeping my fingers, toes, and eyes crossed for you!  Let us know how it goes, OK?

Chocolaterocks

Hey Leaf and all,

I had my 2 surgical excision biopsies last week, finally. All my braca testing was negative. Today I went to get the stitches out and was suprised that I have a huge scar since it was such a big biopsy. The surgeon  did the biopsy after the 1st surgeon  did miss both areas of calcifications in the stereo biopsies which showed= adh, lcis, pash.  Anyway, today she told me that the complete path report is not back  and she called the pathologist who stated that there is a very large area of lcis and one area is pending.  I guess it will be a couple of more days. She stated my risk  increases to  5 to 6 times greater than the average for developing true cancer. Thoughts?

I am pleased that after all this time atleast I am making some progress....

Anonymous

I don't think I will be a lot of help. Leaf is very knowledgeable. I had a surgical biopsy for microcalcifications on 12/3 that were on the chest wall. That showed LCIS but the other was nothing. Then met with different docs, settled on one, who ordered an MRI. Had that done on 12/29. They saw another little spot right by the first (about 1/2 cm). She tried an ultrasound biopsy which came back perfectly clear, but now she and the pathologist feel that perhaps they didn't get samples of what they needed.So, now I am having another surgical excision on the 27th.

From my research, the risk is much higher for breast cancer if you have lcis, which is why they want to do another surgical biopsy on me. They want to make sure they didn't miss it on the ultrasound biopsy.

With just LCIS, there are basically three options and you have to weigh which is most comfortable for you. Watch carefully, or take tamoxifen and watch carefully, or bilateral mastectomy. All the docs I met with felt mastectomy was way too radical. However, when you read this site, it would feel like almost everyone is doing that. The good news is that you know, and have time to make a decision on what you want to do, assuming nothing more is involved. I don't know what pash is.

My specialist said that with conditions like LCIS, we are at the precipice. Thanks to more sensitive machines, doctors how have access to all this new discovery of tissues, etc., but still wading through how to address the information most effectively for the patient.

So you had two biopsies in one week?  Ouch! My surgical incision is about 2 inches, but I had some bruising, not a ton. It was glued shut so no outside stitches, just inside. My ultrasound biopsy bruising is HUGE. I am wondering if I overdid it or something afterward. Even the doctor was a little surprised at my post op today.

I have been doing tons of other research, but as of today, I guess I am going to stop until I have an actual diagnosis. I have made dramatic dietary changes, and have some questions to ask regarding supplements as soon as I know if it really is just LCIS or some form of cancer.

I hope your news comes back positively or you.

Chocolaterocks

FluffQueen1

any stats that you have I would appreciate- the scar goes from my nipple outward and is 3 in long on my 36a ..... I wish you the best.  Waiting for final report.... Really thinking that based on my age under 50, my mom had bc invasive ductal, adh, pash, lcis and spindel cell carcinoma, aunt with bc, great grandma with bc at young age and father's mother with bc am I putting off the inevitable? so any data would be appreciated. Many thanks and prayers.

Anonymous

Here's a few things I have looked at. Not sure any are totally what you need. I am certainly no expert. Based on your family history, it seems good that you are BRCA negative. I have not have the testing done yet. I have two aunts with bc, one diagnosed in 1951, age 42. She had mastectomy and radiation and lived to be 92. Another aunt was diagnosed at 86. Still living. Mother is currently negative at 82. I will have testing done at some point for my daughter's sake, but for now going to wait for diagnosis as at this moment I am not sure how the information can help. I either have breast cancer or I don't. I am 55, and if I only have LCIS will consider tamoxifin and a hysterectomy that I probably should have done a couple years ago anyway, especially since I am still having periods which is probably causing this whole problem. If it is any form of breast cancer, it will take a lot of convincing for me not to have a mastectomy. I don't have father's history as my father was raised by his stepfather and I have no connection to his real father.

I would send a note to leaf as she has tons of information. I had two pages of questions that I faxed to the doctors I met with the day before our meeting so they would be prepared. Had good conversations with both. Are your doctors/surgeons breast specialists? Mine is now, but original surgeon wasn't, although 50% of his practice was with breast surgery and I feel he gave me good information.

I think it will be hard for you to research much until you have the final diagnosis. I'll be sending prayers your way.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314428/

http://cancer.stanford.edu/breastcancer/lcis.html
http://www.ncbi.nlm.nih.gov/pubmed/17182661
http://books.google.com/books?id=KW9esgo759EC&pg=PA1120&lpg=PA1120&dq=lcis%2Balternative+therapies&source=bl&ots=SIWpb3ty4c&sig=jEUBc5H6XOUXl4WHWAbztobWHhI&hl=en&ei=GWEETcmKF4ylnwf4wKjlDQ&sa=X&oi=book_result&ct=result&resnum=5&ved=0CC8Q6AEwBA#v=onepage&q&f=false

http://www.ncbi.nlm.nih.gov/pubmed/17720953?ordinalpos=2&amp;itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

leaf

Problem with LCIS is that it is so unusual.  I have LCIS, ALH.  I have a weak family history.  I was given lifetime 40% from a genetics counselor, 30% (without tamoxifen)  from my onc, and, from a major institution "10-60% but probably closer to 10% than 60%.  If you want more accurate numbers, you'll have to go to journals."

At that time, I did not know how little we understand about risk factors.  Even for women who are eligible for the Gail model http://www.cancer.gov/bcrisktool/ (LCIS women are immediately excluded), one paper opined that *for individual women*, the model was 'better than a coin toss, but not by much.' http://jnci.oxfordjournals.org/content/98/23/1673.full.pdf

Thus, we can know quite well what the breast cancer risk is for a group, but have very little clue what the risk is *for an individual*.  The Gail model specifically says it should not be used for treatment decisions.  If they know this little about the Gail model, then you know how little they know about predicting risk for LCIS patients.

One of the biggest studies recently was the Li et al study http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full.  They report their risk in a different way.  I'm not that good at statistics to know if it is possible to convert rate (cases/1000 person-years) into % lifetime.  I'm sure % lifetime contains more assumptions, such as one's lifespan and age at diagnosis.  (If you get diagnosed with LCIS and nothing worse for the first time when you are 55 years old, you need to subtract some risk because you can't have already been diagnosed with invasive breast cancer at age 40.  Also, as you age, you need to compensate for people dying of other causes - if they had not died of other causes they may have gone on to get breast cancer.)   I also can't find in this study of the LCIS women who went on to get invasive breast cancer, what stage of breast cancer they got.

In this very small Port et all study, none of the atypical or LCIS patients got diagnosed with anything worse than stage II. http://www.ncbi.nlm.nih.gov/pubmed/17206485

In this old study (2001) very few of the women opted for tamoxifen.  (43 high risk women of whom about 20% had LCIS, only 2  opted for tamoxifen.)  http://www.ncbi.nlm.nih.gov/pubmed/11508619

In this Chuba et al paper covering women 1973-1998, women with LCIS (and nothing worse) who were subsequently diagnosed with invasive breast cancer were diagnosed with somewhat less advanced disease than those who did not have LCIS diagnosed first.  For example, about 5% of the non-LCIS patients got diagnosed with tumors >5cm, and about 2% of the LCIS patients were. http://jco.ascopubs.org/content/23/24/5534/F1.expansion.html.  Note that this was a study of women from 1973-1998. (Up until the 1990s, the 'usual' treatment of LCIS was bilateral mastectomies, because they didn't know the natural history of the disease.  When it was found that lumpectomy + radiation was an option for many early stage invasive breast cancers in the mid-1990s, many breast surgeons thought that bilateral mastectomies was too drastic a solution for LCIS women (unless, perhaps they have a significant family history and thus may be BRCA positive.) If you have a significant BRCA1 or 2 mutation, your lifetime risk of breast cancer can be upwards of about 60-90% depending on your mutation.  But only about 10-15%of breast cancers are thought to be from inherited single mutations.  About 70% of women who get breast cancer have no obvious risk factors (besides being a woman.)

Ilovechocolate: I've seen papers that opine that the extent of LCIS does NOT make a difference in your risk.  Most cases of LCIS are multifocal (meaning it occurs in many places in one breast) and is often bilateral (in both breasts). Problem though: we don't know where the LCIS is in a breast unless we biopsy it or look at mastectomy specimens.   So in order to 'remove all the LCIS', they'd have to essentially do bilateral mastectomies.  I've read papers that say that most (not all) of the invasive breast cancers that LCIS women get occur not *at* the LCIS site, but at sites that previously looked normal.  So, for many women its 'action at a distance'.   On biopsy, much of LCIS is not found *at* the mammogram lesion, but adjacent to the lesion.  LCIS is a weird disease.

Certainly once you are excised (if you chose to be excised) there is no rush to make your decision.  I was and am terribly angry at my breast surgeon because when she walked in the door (knowing my LCIS on my core biopsy, but before asking about my family history), her first words to me were: "If you want bilateral mastectomies, I will fall down in my chair."  She refused to do any more surgery on me after my excision.  I feel 'cheated' because I was not allowed to consider that option.  Obviously you are not going to get a bilateral mastectomy if you can't find a surgeon to do it, and you probably won't do it if your insurance won't cover it. 

If you are interested in bilateral mastectomies, then I would encourage people to use the 'search' function and look at both the incidence of post-mastectomy pain syndrome, and of lymphedema.  I didn't know about these potential pitfalls when I was first diagnosed with LCIS in 2005.  I assumed everything would be the same except I wouldn't have breasts.  I didn't realize the entire area would probably be numb. I just want people to know both the risks and substantial benefits.

I personally think for me that it is certainly reasonable for persons who have PLCIS and people with classic LCIS who have a significant family history (thus may have a significant BRCA mutation) to *consider* (not necessarily have)  bilateral mastectomies.   But even some women with a significant BRCA mutation choose not to have bilateral mastectomies, and never get breast cancer.

It may seem that 90%+ of LCIS women get bilateral mastectomies if you look at the posts on this forum.  But I don't think that is true.  It has been shown that people who have extra 'energy' tend to stay on a support group - they have a particularly difficult problem, are choosing a very aggressive therapy; they have a deep reason for being there.  Women who choose watchful waiting tend not to spend the energy to stay long term on a support group.  But that is a very valid option.

When you are first diagnosed, you don't know if your excision will show you have something worse, and you don't know if your 6 month mammogram and ultrasound will show you had pre-existing breast cancer.  When I was first diagnosed, I was getting ultrasounds and/or mammograms every 3 months.  Now, I am getting clinical exams every 6 months, and yearly mammograms, and that's it. (I'm finishing my 5 years of tamoxifen.)   I have never had a breast MRI.  I will be seeing a new onc for my next visit (my old onc retired), and I don't know what her view will be. 

We are all different people, with different circumstances, needs, and personalities.   I only want everyone to make  ****INFORMED*** choices (both their head (facts) and their heart (feelings).) 

Anonymous

Amen sister! Leaf, I knew you would have good info to pass on. Right now I am just going to try to get the ultrasound bruising healed up to be ready for the next surgical one on the 27th, head to Florida for a few days next week and then I will be cute and tan for my next surgery, and she can see my swimsuit line for the surgery.

When I quizzed my specialist on whether she would do a mastectomy if I chose that route, she said absolutely, but encouraged me to think about it carefully and not rush into a decision.

I love chocolate....let us know how your path report turns out.

Chocolaterocks

Thanks- I figure if they don't call me by Friday- I am getting out of work early and I will go and pick it up. The waiting is so long and painful..Let you know Wow- interesting Leaf that it does not matter (studies) how much LCIS you have- I did not know that. thanks.

Chocolaterocks

Leaf nd Fluffqueen-

hi, I want to thank you for the help- Leaf you have been great. I called today and asked for the final report.  The Rn called back and asked if I was driving. No. She informed me that I have  Invasive Lobular Carcinoma 5mm in addition to LCIS.  I return to the surgeon tomorrow. So after all these months I am moving on. I will let you know how it goes.  thanks and prayers to all.

Chocolaterocks

Results

ILC 5 mm  2nd area is LCIS

removed but with only 1mm to spare

ER positive

Hr- negative

State 1B

recommendation

either 

Lumpectomy w/ radiation/ tamox

or double masectomy

both will require node removal and outcome will determine if futher treatment is necessary- chemo

 4 out of 11 blocks show extensive LCIS

Surgeon agrees that double masectomy is a good choice- need to make some decisions....

based on age, extent, all the family member with bc....

take care and prayers to all.

leaf

I am so sorry for your more serious outcome.  My heart goes out to you.  Please know you are not alone.  We are all holding out our hands to you.

Anonymous

Ilove chocolate.....Prayers coming your way. I always try to look for something positive and in your case it is very small, which is a very good thing. Given your family history, it is so good that this was found now. You can decide your treatment and live a long happy life.

I should know my diagnosis around Feb. 1 after surgery on the 27th and will update then.

Keeping you in my thoughts and prayers.