LCIS excision recommended

Chocolaterocks

hi very new to this- had mammo w/ calcifications, two areas - had poorly done stereotypic biopsies in 2 places recommendation (2BC doctors) is excision with this diagnosis- many of you are so far along with this process and are so amazing.

Any advice?

49 years old - spouse, 2 teenagers...

mother is alive had spindel cell carcinoma at 62 (major radical at 62 w/ chemo.....)

looking for a great doctor

Jewish parents

some other  relatives had breast cancer

healthy living....

 thanks for the assistance.

Prayers to all.

leaf

Almost everything that concerns LCIS (including the name) is controversial.  One of the problems with LCIS is that there are so few people who have LCIS and nothing worse.  (There are about 7 times more people diagnosed with DCIS than LCIS.)

Most women who get LCIS (and nothing worse) on a core biopsy get surgical excisions.    The purpose of the excision is NOT to remove the LCIS, but to try to ensure there is nothing worse going on in the area.   Different studies get different numbers, but roughly 10-30% get 'upgraded' to DCIS or something worse (in other words invasive.)

http://www.ncbi.nlm.nih.gov/pubmed/20637429

http://www.ncbi.nlm.nih.gov/pubmed/18517282

http://www.ncbi.nlm.nih.gov/pubmed/17460455

However, this study opined not all LCIS needs to be excised. http://www.ncbi.nlm.nih.gov/pubmed/17214794

They don't try to excise all of the LCIS because usually LCIS is multifocal (meaning there are many spots of it in one breast) and is often bilateral (in both breasts).  The only *reliable* way to diagnose LCIS is by biopsy; it normally doesn't show up in mammograms, ultrasounds, or reliably by MRIs.   To 'remove all the LCIS' they'd  have to biopsy all the breast tissue in both breasts, which essentially would mean bilateral mastectomies.

Up until about the 1990s, they used to routinely do bilateral mastectomies on all LCIS women.  They stopped doing this ALL of the time when they found radiation + lumpectomy was usually as effective as mastectomy for early invasive breast cancer.  To some breast surgeons, it seemed it was too aggressive to do more surgery than they were doing on their invasive patients.  

http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5

SInce your mom had breast cancer, you may want to consider inquiring about genetic counseling (usually done at a major institution) to see if you are interested in genetic testing.  Women who are of Ashkenazi heritage usually have an increased risk of BRCA mutations.  Genetic counseling is usually done before AND after testing.  The genetic counselors should not pressure you for or against testing.  You may want to check with your insurance company before you do genetic testing because if no one in your family has been previously tested for BRCA, it can cost roughly $3-5K.  I got genetic counseling, paid for it out of pocket (<$400), and decided not to have testing since my insurance wouldn't pay and I'm at low risk for BRCA.

I think the vast majority of posters on this LCIS forum who have LCIS and nothing worse do get the area excised.  But there is some controversy.  You will probably be given many choices.  You need to do what is best for YOU, not what is best for anyone else.

Chocolaterocks

Thanks for the advice- so the bottom line is after I got through the excision I will know more.

Genetic testing - I should look into my insurance and see if its a provision.

thanks so much.

lago

I had no history of breast cancer in my family. I am Ashkenazi Jewish. I had the test done not only to find out if I needed to worry about ovarian cancer for myself but also for my sister, nieces, nephew and brother. (BRCA also has an increased risk for prostate cancer). If I had tested positive I would have encouraged my sister & brother to do the same.

Since you have two children and a history of breast cancer in your family you may seriously want to consider this. I got the codes from the genetic counselor and called the insurance company myself. They covered mine. If they do not your genetic counselor might be able to fin
d some financing for you through the company that does the testing.

I would also recommend if you can to do it before surgery. If you test positive you may consider a BMX. Best to go into surgery once not twice.

leaf

Yes, most women do choose to get excised so they are more certain of their diagnosis.  (DCIS and invasive cancers are normally treated differently than LCIS.) 

Genetic counseling/testing can take some time.  For me, it took 2 months , but it took a month to find all the family information they wanted. (I only had counseling, not testing.)  I've read some posters who said they have been able to pay extra to get faster testing results.

I think most LCIS women do an excision first.  On the other hand, you have a more significant family history than most LCIS and nothing worse women, so may be more at risk for a BRCA mutation.  (Overall, about 15% of breast cancers are thought to be from a single inheritable genetic mutation.)  

So you have a whole bunch of decisions to make - or at least decide whether you want to decide now or later.   If you do decide to have PBMs and delete the excision step, then you have lots of decisions to make sooner, including whether or not you want reconstruction, and, if so, what type.

I also assume you have *classic* LCIS.  There is also the more unusual pleomorphic LCIS (PLCIS) , which is thought to be more aggressive.  Since PLCIS was discovered more recently (in the late 1990s/early 2000s), they know much less about PLCIS.  (See other threads in the LCIS forum if you do have PLCIS.)

I know you have a LOT to take in, learn, and decide.  We're here if you need us.  Best wishes to you.

Chocolaterocks

hey thanks for all the advice,

 left my regional area and went to a highly recommended breast surgeon who stated that there was nothing left to excise at this time after reviewing all the films pre and post

recommended tamoxifen w/ a rx and in no more than a month to have a contrast and no contrast mri before doing anything else to obtain a baseline

 I am going to call my insurance company and see if I qualify for genetic testing.

 also think that I feel more comfortable with this that having general anethsia next week for an excision

also classis lcis

learning so much and so grateful for all the information.

thanks all

I hope i can give back.

Rshep9101

Hey, I understand your frustration completely.  I have recently been DX with ALH and have to have an excision biopsy.  Did your sterotactic biopsy remove most of the concerned cells?  My surgeon also suggested the Genetic testing due to my sister's positive genetic test.  She seemed to think I could be working on getting the testing done during the waiting/biopsy process. Any idea how long it takes to get the genetic testing completed?  Good luck with your  MRI and Tamox

 Leaf : Thanks for your response earlier I have been scanning the boards and I gotta give you props for all your research references.  I am in school and a science major so since this began I have been reading studies and journals looking for info and stats.  Question... Does the pathology report always specify the type of LCIS that is found?  Do the treatment suggestions vary accordingly?

Chocolaterocks

hi I had two pathology reports and two biopsy's at the same time and the diagnosis of bio 1 is atypical cells

 bio2 stated multilple cells seen foci with lobular carcinoma in situ and that is it

the city doctor thought that in the biopsy that they removed so much that there is nothing to look at.

spent an hour on the phone trying to coordinate getting pre authorization (i have blue shield ppo) pre approval for mri? next call will be for genetic testing so its a problem  so my answer to

rhsep is that my biopsy ( okay I watched intently) removed approx 2 plus tablespoons of tissue and the cells were in the sample- so irhsep is there anything left to take

did they see it in the markers? which is why I need to have the mri contrast and non contrast

good luck

 still not sure what to do with the tamox?

take care.

leaf

PsychologistChild1000: I would be surprised if your insurance co would NOT cover genetic testing (if your policy covers any genetic testing): you fulfill the US Preventative Task Force recommendations for BRCA testing:

http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical

Ahh- I found the ACS sponsored study that opined that in some situations, surgical excision is not necessary for LCIS. http://www.ncbi.nlm.nih.gov/pubmed/18348299

Since LCIS is usually multifocal (there are usually several spots of it) and often bilateral (i.e. found in both breasts), then they can't assure you that they 'removed all of the LCIS spots in your breasts' (unless you had bilateral mastectomies).  If there are clean margins well around the spot, then they may have more confidence they removed THAT spot of LCIS.

From what I understand, they now think most of the LCIS risk is NOT associated with the particular spot of LCIS. The associated risk for developing invasive breast cancer after a diagnosis of lobular neoplasia is multicentric, bilateral, and equal in both breasts. Lobular neoplasia itself may transform into invasive carcinoma, although the frequency of this occurrence is unknown. Thus, lobular neoplasia is a risk factor for invasive breast cancer and may be a precursor lesion in unusual circumstances. http://www.ncbi.nlm.nih.gov/pubmed/16687097

  Almost half of the women who subsequently get breast cancer after an (LCIS with nothing worse) diagnosis get breast cancer in the opposite (contralateral) breast. http://www.ncbi.nlm.nih.gov/pubmed/16110014 The LCIS is a marker for increased risk throughout all the breast tissue.This is obviously a difficult area to study.  LCIS is a weird disease.

Pathology reports differ.   My first one was full of detail; my 2nd opinion was not and was about 10 words long.  If your pathology report doesn't describe the LCIS (at least to say if its classic or not) then you may want to ask your doctor to ask the pathologist for more details.

Just about EVERYTHING concerned with LCIS is controversial.  If you have PLCIS (pleomorphic), which is an unusual type of LCIS, then you may desire some more aggressive treatment.  But there are no definitive studies about PLCIS to my knowledge.

My oncologist said that treating cancer was like looking at a pitch black enclosed room with a flashlight.  It is very hard to see the 'whole picture'.  You hopefully will be given several different options. If you 'hold the line' with LCIS and nothing worse after excision  (if that is what you choose, and I'm not trying to imply you  have a choice in your diagnosis :-) )  then there is no rush in making your decision about what to do.  But that's why they often give cancer patients options: there is often no one 'inscribed in stone' treatment.

Do check with your insurance co before you engage irreversibly in something more expensive (I'm thinking in particular MRIs or PBMs); they may or may not approve your choice, and I don't want you to have any financial surprises.

Make your decision based on YOUR heart and YOUR intellect and YOUR situation; don't base it on what other women have chosen. Do your homework, and look at all the risks and benefits of each choice.  Be an informed consumer, however you define that. You are the main person who will have to live with your decision. They have done studies, and the people that post on online support groups tend to have more 'energy' than others - i.e. they may be have a more difficult situation, or have an unusual situation, or considering a more aggressive course.   Many women who are at higher risk, after they have their treatment choice in place, usually go on with their lives and stop posting.  So the number of people that choose one option or another may not be equally represented on this board.

Chocolaterocks

Wow Leaf

you are amazing - I have researched so much since reading your reply and as always the more I  read the more  I learn and question

I can have braca testing its  covered and I will have it with in the next week-  I think its important to all in this process  to assist with decisions

2nd I have read all the studies and current research going on  and I am not sure, but its good to know they exist and keep that in mind- thanks for directing me

3rd I think I need either a hematologist or an oncologist to further advise and assist in case I do decide to go the tamo way not sure though

4th I sought a 2nd opinion through a cancer center and have my pathology slides sent for review so now I need to get there expert opinion to see if anyone said more than lobular carcinoma in situ - multi focal.... ......do I get the ratings for positive er or negative..... need to know so LEAF you are right-  ask the pathologist thank you LEAF

5th this is such a challenging place to be  -those of us who are fortunate to learn from your experience are really lucky- thank you for giving back.

I am also learning that with LCIS you have a little bit of time and its a process,  I need to have the breast mri contra/ no contra 7 days after my period- so its a process....

thank you. 

leaf

Of course, you're quite welcome.

Glad you are choosing to go with the BRCA testing.  Its what I would have done if I were in your shoes.

My excision pathology report gave my ER and PR ratings. (I did not get a pathology report of my core biopsy.)  The receptor stainings were done on my Core Biopsy samples, and were not repeated at my excision.  Mine was ER positive and PR negative. These were done in 2005.

I guess in subsequent years, they sometimes measure ER alpha and ER beta.  This paper opines there may be a difference between the two. http://www.ncbi.nlm.nih.gov/pubmed/18243688 Maybe they just measure ER alpha and ER beta in invasive specimens, or only in clinical studies situations; I don't know.  

However, its dangerous to make generalizations.  Most LCIS studies are on small groups (<100 patients). In this paper, 3 cases of PLCIS were ER negative, and they opine the PLCIS was in the setting of classic LCIS. http://www.ncbi.nlm.nih.gov/pubmed/20727019

In this study, 50/50 LCIS patients were ER alpha and ER beta positive. http://www.ncbi.nlm.nih.gov/pubmed/17543077

In this study, 98% of the LCIS specimens (some of these also had invasive) were ER positive. http://www.ncbi.nlm.nih.gov/pubmed/15830138

Best luck as you go through this journey.  I couldn't have made it without the sisters on this board.

Chocolaterocks

Wow I am glad you responded

My doc told me today I don't qualify for the testing- insurance won't cover it"

I think she is wrong because when I spoke with my insurance customer service rep.- she said it would be covered- so I need to call....... and see who is right- I hope I am- Why not?

2nd I called the cancer center outlet facility ( disappointment because it was was doctor who was disappointing) but I had my slides sent to them and they were supposed to go to the "mother ship" and so I called and asked for their report. I am hoping for what information you (LEAF) you have provided me. Now Leaf the doctor told me that with this diagnosis you do not get a breakdown??? Is that true. I thought it would be helpful to know- am I er positive.....?

Who do you believe.

In the beginning of Dec I have an appointment with another cancer center (the real thing) and I am sure I should keep this. I will check out the latest place you are sending me- gosh thanks.

Are you able to let me know what part of the country you are in? thanks

DocBabs

Psychologist child1000, I just re-read your post and I'm still a liitl confused by it. You had calcifications and 2 poorly done biopsies? What made them poorly done?Unless I missed something , what did these diagnosis show?LCIS?If you were a friend of mine this is what I'd tell you to do. Find an oncologist at a major hospital and let him /her monitor your situation.You need one person to coordinate any and all future testing, to keep an eye on all results, and facilitate any special needs( I'm thinking about genetic testing here). I have LCIS and when first diagnosed the oncologist that I saw wanted the testing done but insurance would not cover it.Shortly afterwards several first cousins statred showing up with breast, uterine and other cancers. All these people were under the age of 50.Somehow after repeated calls to my unsurance company by my Oncologist, they agreed to cover the test.Your background of having Jewish parents is significant when dealing with BC.How much so needs to be determined.

I too had no further breakdown on my diagnosis other than AHD and LCIS.

I'm followed by the oncologist every 4 months, manual breast exams.Mammo, MRI and ultrasounds once a year but 6 months apart . Gyn exam with ultrasound every 6 months.I feel very comfortable and confident with this plan for now. I hope you can get to the same place .

leaf

I am *not* an insurance expert.  But it sure sounds to me that you meet the USPTF guidelines for BRCA testing, if you are of Ashkenazi Jewish heritage.  If your doctor or insurance company balks, then I'd take a copy of the USPTF guidelines in to show them. I think insurance companies can opt to not cover *any* genetic testing, though.  But if they do cover some genetic testing, it sounds like you have a basis to appeal.

Chocolaterocks

hello- everyday is a learning experience.  Learned so much from the insurance company and there are very strict guidelines.  However my policy has a clause that if it is recommended by a board certified hema or onco its covered. If the surgeon wants to they can write a letter asking for it.

So I need to pursue this further. I want it- I just learned that now only did my aunt, my mother, but also there grandmother (she died from it) had breast cancer- so I believe this test is warranted.

 Regarding  the care by physicians I am familiar with substantially below what is required in medical care and what is done.  It is not unusual to have a proceedure and have it not considered below the standard of care, but truly below what we as consumers should receive.  We as consumers need to recognize this and I would discuss it- not in a public forum.

let you know

thanks

Chocolaterocks

Hi All,

Here is my update and I am 49, and Ashknazi Jewish descent waiting for the results of BRACA testing

In my-  local town- I had 2 biopies with the dx of LCIS. I thought the biopsy was poorly done and they were, since then  I have had

bone scan- neg

Breast MRI with and with out contrast- probable benign

I managed to get my slideds and pathology sent to a major institution and here are the results:

The radiologist indicates that neither area of calcifications were gotten in the two biopsies and recommends mammogram and redo stereotactic biopsy

The pathologist at major institution indicates the following diagnosis:

LCIS

LCIS with signet ring cells

ADH

PASH

Columnar  cell changes

Fobrocystic changes

no evidence of microinvasion

My mom had cancer in 1995 at 62 and here is her pathology report:

Invasive ductal carcinoma

extensive areas of Spindle cell malignancy inviltrating the stroma

Aytpical lobular hyperplasia

LCIS

fibrocystic changes

microcalfications

Okay- my new institution- cancer center wants to start from the beginning despite having films and wants to do a mammogram only on 12/20

Frankly, I am mentally getting prepared and searching for a bilateral masectomy and reconstruction.

Also my maternal aunt had breast cancer (73) and their grandmother died young of breast cancer, and finally my dad's mom  (my grandmother) had breast cancer in her 80's.

Thoughts are appreciated?

thanks all

I love chocolate. 

leaf

Sooo, you have not had a surgical excision?

At this website, in their LCIS section, it says  Signet ring cells with mucin are common. http://www.pathologyoutlines.com/topic/breastmalignantlcis.html. 

They have a separate PLCIS section.  I didn't have any signet cells.  (I have classic LCIS.)  

I would strongly support that you eventually either have the area surgically excised, or bilateral mastectomy if that's the way you are heading.  I would want to be reassured that there isn't 'something worse' hanging around.

Your  BRCA results could have a strong bearing on this- if I was BRCA positive with a deleterious mutation, I'd be strongly considering mastectomy.  If I had a BRCA mutation of unknown significance, or BRCA negative, then I'm not sure what I would do.    Since all your familial cases of breast cancer (except your maternal grandmother) were probably post-menopausal, that would point away from a familial mutation.  On the other hand, you are Ashkenazi Jewish.  So I'm glad you're getting tested. Even if you test negative or unknown, that's a pretty significant family history.   I would strongly pay attention to what your genetic counselor says when you get your BRCA results.

Chocolaterocks

No, I have had the Breast MRI with/ out contrast- probable benign.  But when I learned officially that the calcs were missed,  and my mom had such terrible cancer I becamse really concerned.

Called Myriad today and learned that my braca was there and insurance approved. However, the doctor forgot to sign the order and it was sitting. I got that fixed.

Leaf, thanks again.