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Topic: I don't understand....

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Jan 30, 2008 08:03AM

Kimber wrote:

this whole business of LCIS. It is so difficult to explain to anyone. I just found out from my oncologist that the tissue removed was "multi-focal" and I need either re-excision or possibly a mastectomy depending on the results of my genetic testing, which SHOULD be in soon. I am reading LCIS is not usually found by itself? Isn't it usually bilateral?? My oncologist told me that in the last year much more has been learned about LCIS and they are not calling it a "marker", they are calling it a stage 0 cancer. With my strong family history and the fact that the surgeon "didn't get it all", now I am more scared than ever. The oncologist's voice seemed to take on a more urgent tone. Maybe I imagined it? Does anyone have any experience with this? I've read all the medical stuff, I would like to hear from someone with LCIS or experience with it. I am also amazed at the reactions of people. The ones you expect to understand are completely oblivious and the ones you would never think are right by your side......

Venting again.....
Thanks for all your help, support and info ladies!

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Jan 30, 2008 08:56AM kcq wrote:

Hi Kimber-

I had ILC and LCIS.  ILC=Invasive Lobualar Carcinoma is the acutal "cancer".  LCIS=Lobular carcinoma in situ is a "pre-cancer".  The way that my surgeon, family practioner and onc explained it is this---I had ILC stage IIb cancer.  But along with those cancer cells were found LCIS which are the pre-cancer cells.  I was told that with the LCIS, this shows that there is a chance that you could develop ILC in your breast.  Some women just have the LCIS and are watched.  I was told that because LCIS was found that yes, I could develop cancer in my other breast.  HOWEVER-it would not be the same cancer that was found in my left breast.  If I developed cancer in my right breast, it would be its own cancer, not spread from my left breast.  So, LCIS really means that you have pre-cancer cells that should be watched and it means that you are likely to develop ILC.  Hope this helps.

Kim Dx 5/1/2007, ILC, 4cm, Stage IIB, 1/4 nodes, ER+, HER2+
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Jan 30, 2008 09:00AM Lolita wrote:

I had LCIS in addition to a small invasive cancer.  My cancer specialists, even those at the same hospital,  were all over the place on whether the LCIS needed to be excised completely or just radiated completely.  It was not bilateral in my case, although its a predictor bilaterally. 

Dx 10/25/2007, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Jan 30, 2008 10:16AM wishiwere wrote:

LCIS and DCIS (both stage 0) or precancerous, are when the cells within the duct or lobular are confined within those systems and haven't gone outside them.  IDC and ILC are when these cells have moved outside the ducts or lobules and are then considered infiltrative or invasive.  It's at this level I-IV that the cancer can spread outside the breast to the lymph nodes and beyond.  This site's page explains it better: http://www.breastcancer.org/symptoms/diagnosis/invasive.jsp

This is NOT to say that LCIS and/or DCIS won't later become IDC or ILC.  ILC I've read is more apt to be spread to the other breast than IDC, but it's not much of a greater risk.  Both can do this.

This is why most often if you have IDC you'll have some component of DCIS and the same is true for LCIS and ILC.  One becomes the other eventually and you'll have both in different stages.  I hope this explains it.  At least this is what I've read and come to understand.

I've got/had both IDC with DCIS (initial tumor I was checked for) and ILC with LCIS (which was found with and MRI before surgery).  B/c of this second tumor (even though smaller) and b/c it was in another quadrant of the breast, I had no other option but to do a mastectomy. 

My understanding of multifocal is that it means more than two or more tumors in one quadrant or more.

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 30, 2008 10:21AM wishiwere wrote:

multifocal breast cancer (mul-tee-FOH-kul brest KAN-ser)

Breast cancer in which there is more than one tumor, all of which have arisen from one original tumor. The tumors are likely to be in the same quadrant (section) of the breast.

multicentric breast cancer (mul-tee-SEN-trik brest KAN-ser)

Breast cancer in which there is more than one tumor, all of which have formed separately from one another. The tumors are likely to be in different quadrants (sections) of the breast. Multicentric breast cancers are rare.

Both of these were taken from:

http://www.cancer.gov/Templates/db_alpha.aspx?CdrID=349392

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jan 30, 2008 11:01AM Kimber wrote:

Thank you, wishiwere, that helps me explain it to my family. I am concerned because I originally had two spots biopsied and one came back as sclerosing adenosis and the other as pseudoangiomatous stromal hyperplasia or "PASH". The first one was not surgically biopsied but the one they considered PASH was, and was sent to Mayo and came back as LCIS, which I am NOW told is "multi focal" - so I am wondering if my first pathologist mis-read the original core needle biopsy, and I actually have more than one spot of LCIS or something worse. Do MRI's show everything or can something be hiding??? I don't know, it's all so hard to understand and even harder to explain.

Thanks for your help.
Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Jan 30, 2008 11:04AM - edited Jan 30, 2008 11:43AM by leaf

I have LCIS, ALH, DH (not atypical) and (as far as I know) nothing more. If you have invasive cancer, then your situation is different. There are different studies that say different things, but *some* studies say that if you have invasive bc with LCIS that breast conserving therapy is an option. But, as awb says below, the situation with invasive with LCIS is different from LCIS and nothing worse.

IF you are BRCA positive, then the risk of breast cancer is almost certainly higher than the risk you get from LCIS. So these statements below will probably not apply. (ie BRCA will 'trump' LCIS.)

I don't think there is hardly ONE aspect of LCIS that does ***NOT** contain controversy. I have found papers that support the 'other' view in almost all the aspects below, including papers that say it should be called LCIS and not lobular neoplasia.

One of the problems is how you define cancer. Cell growth characteristics is a CONTINUUM. So different people define cancer differently. Some define cancer as only if its not invasive, some define it as neoplasia, etc.


The NCI website www.cancer.gov/cancertopics/pd...
states that LCIS is more properly termed lobular neoplasia (which also contains the continuum of ALH.) It also opines that there is no evidence it needs to be excised to the margins. It opines that most oncologists consider LCIS as *benign*. Whenever I tell my non-oncology docs this, they roll their eyes and say "But it contains the word carcinoma". It was given its name BEFORE they knew the natural history of the disease. It looked like it was DCIS except in the lobules, so they thought it was like DCIS. But it isn't. And there is more CONTROVERSY.

More recently, there is a trend for people opining that *in some cases* LCIS may be a *NON-obligate* precursor to cancer, which means that *SOME* (probably small fraction) of women with LCIS may progress to have breast cancer.www.ncbi.nlm.nih.gov/pubmed/16...

It is almost impossible to find the *true* incidence of LCIS (and nothing worse) because it is often (not always) only detectable from biopsy (as opposed to imaging.) So we don't know how many women are running around with LCIS and don't know it. The incidence is probably increasing, but that may be due to more women having mammos, and biopsies. www.ncbi.nlm.nih.gov/pubmed/12...

Before the, say 1990s, they used to routinely do bilateral mastectomies on women with LCIS. They didn't know the natural history of LCIS. But when they started doing lumpectomies for some women with invasive cancer, most breast surgeons didn't want to do more extensive surgery than this on women with LCIS.

The risk that LCIS poses to a particular woman is also controversial. My onc estimated it might be 1% per year. If this is true, since most women are diagnosed with LCIS in their 40s or 50s, *most* (meaning the majority) of women with LCIS will *not* get breast cancer (ie DCIS or invasive bc), even without any treatment. I have been given lifetime estimates as low as 10% (ie no additional risk at all - and this from a major institution (!!) to, in a risk calculator, which adds all risks together, >85% (this is probably an invalid calculator, not supported by comparasions with populations.) It is documented that *most* (ie more than 50%) of the cancers that LCIS (and nothing worse) women get IDC. But LCIS women get many more cases of ILC **than the general population would get*. (In other words, in the general population, about 10-20% of breast cancers are ILC, whereas in the women with LCIS, the incidence of ILC (of the women with LCIS who do get breast cancer) is more like about 40%.

I don't have time at the moment to get the data that shows the mulitfocal and multicentric incidence. (These were obtained from the days when women had bilateral mastectomies, I think.) But it doesn't really matter, because even if you have LCIS in ONE spot in ONE breast, it puts (to some degree) BOTH breasts at risk. That's why bilateral treatments are normally recommended.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 30, 2008 11:21AM awb wrote:

Kimber----LCIS  is very unpredictable, but the one thing about it that IS predictable is the controversy.  (over what it is, what to call it, what the risks are with it, who will go on to an invasive bc in the future, how it should be treated, etc....)  I've had LCIS for over 4 years by itself, without an invasive component, which is a very different situation from having it along with ILC or IDC. (once an invasive bc is diagnosed, your treatment is targeted at the invasive bc). 

Often LCIS is found to be multifocal, multicentric and bilateral ---meaning basically that it could be found in multiple areas of either breast; they are both at equal risk.  Another difficulty with LCIS, is that it is not usually detected by mammo, US, or MRI, and not felt on a breast exam. It is usually found incidentally, when they are in there already looking at something else of concern.
 They used to immediately recommend BPMs  (since LCIS can theoretically be everywhere and anywhere), but now feel that LCIS can just be monitored closely since it is non-invasive.  I am closely monitored with mammos alternating every 6 months with MRI; also see oncologist every 6 months for breast exams on opposite schedule, so actually "seen" by some method every 3 months. I also take tamoxifen in hopes of preventing an invasive bc in the future. (I also have family history of ILC--mom--now a 21 year survivor!) Do I sometimes have doubts about doing this? Of course, we all 2nd guess ourselves, it's hard not to with this uncertainty. But this is what I've chosen for myself as the best course of action for ME--some others would not want to  live with the risk and choose BPMs.  We all have to  do our research and with the help of our medical team, hopefully make the best decision we can about our own situation. Please feel free to PM me if you'd like to talk more.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Jan 30, 2008 12:06PM lollybeth wrote:

It is all very confusing.  Unless you have invasive cancer, the research and all the statistics are controversial and trying tom make decions based on them can drive one insane.  When I was diagnosed at age 45 with LCIS in my left breast, I was presented with three options: Prophylactic bilat mast; tamoxifen; or "heightened" surveillance.  I chose the surveillance.  During the following two years, I had several more suspicious scans, two necessitating  biopsies, one of which resulting in an infection, the other in a painful seroma.  I was ultimately diagnosed with DCIS in my right breast last August and opted for bilat mast with reconstruction.  Ultimately, there are quality of life issues that are rarely addressed by the research.  Even the American Cancer Association's materials tend to frame the question in terms of mortality, rather than addressing issues of recurrence and the physical and emotional costs of "surveillance."  At a certain point, I think you have to listen to what your gut is telling you and go with it.  It is possible to have peace of mind, even if it doesn't seem that way now.  Good luck to you.

Dx 7/7/2007, DCIS, 2cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+
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Jan 30, 2008 12:20PM Kimber wrote:

lollybeth,
Thank you - I am so confused right now. I see a lot of women on here that have LCIS and end up with something more invasive. I am not sure that I can handle surveillance. I am a "right now" kind of gal.

How did you surgeries go and are you happy with your result?

Thanks to all for your info. I know I will have all the answers I need when my genetic tests come back and I talk more with the oncologist and surgeon, but right now I cannot stand the waiting.

Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Jan 30, 2008 04:09PM lollybeth wrote:

My surgery, which was August 22nd, went fine.  I had no complications.  The things that were bad that surprised me were the REALLY painful injection of material to prep me for the Sential Node Biopsy -- though it lasted about 10 seconds -- and the truly crushing pain I felt immediate following the mastectomies in my sternum.  I was imagining I'd have pain where my breasts were, but the nerves were all severed there, so I had no pain there.  That was unexpected and alarming , cause I sort of thought I was having a heart attack.  Well, of course I wasn't and that pain subsided very quickly.  Sleeping was challenging, but I felt pretty good within 72 hours.  I was lucky and only had drains for a week.  Once they were out, things improved rapidly.  I drove after about 2 1/2 weeks and went back to work after 5 weeks.

I had immediate reconstruction with tissue expanders and a alloderm lining.  I left the hospital with about 200ccs of saline in the expanders and a clevage!  I have been expanded to 450ccs (on my body that's about a full C which is what my owns breasts were) and will receive 400cc implants on February 13th.  I am leaning towards silicone even though I tend to be pretty risk averse.  I don't know whether I will have nipples, etc. yet. 

As far as whether I am "happy"....  I am thrilled to have gotten rid of my cancer and any real threat of getting it again.  In all honesty, I have not thought about cancer for several months.  I feel very good about my decision to choose mastectomy.  I think I still have a pretty positive body image, even though my breatss had been my favorite body part.  There is no way to replicate them and I know that I will be disappointed with my reconstruction if I think about it always in relationship to my natural breasts.  Because I had both removed, I don't have the "matching" issue.  I think that I will be happy, or at least satisfied, with my results because I think my expectations are reasonable.

My husband of 23 years, who was a HUGE fan of my breasts, was not that thrilled with my choice.  It took him a few weeks into my diagnosis and having his butt kicked by some friends and mental health professionals to finally "get" that it was my body and my choice.  He still misses my breasts, more than I do I think.  But then again, they weren't trying to kill him...!

Best of luck and post again so we know how you're doing.

Dx 7/7/2007, DCIS, 2cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+
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Jan 30, 2008 05:17PM femme wrote:

Kimber - at some point you just have to be kind to your psyche and body and let go of all the urgency and panic you are feeling now. You WILLl get all the info you need and the right answer will ultimately fall into place. Do what makes you happy now. Walks, movies, eating comfort food, seeing people you like etc. Try to lead as normal a life as you can now Also, try to be of help to other people, friends and family who need your opinions and imput with THEIR problems now.. Believe it or not, it WILL distract you and help you feel more normal while you are going through this gathering of information.

The body/psyche is a wonderful machine. You can mull things over just so much and then you need to leave it alone (while still collecting all the info that you can). Most importantly you need to have faith in your gut reactions and the rightness of your feelings.

i am ultimately having a PBM on Feb 12th. I had a excision biopsy on Nov 9, 2007 and was diagnosed on Nov 13th with LCIS. Then I became a hunter and gather until I knew what was right for me. Be kind to yourself and try to let in the sun during this period.

I find that taking very deep slow breaths and then exhaling very, very, slowly helps me after 4 or so breaths. You'll see, it will come together, Kimber.
femme


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Jan 31, 2008 07:43AM Kimber wrote:

Thank you so much ladies for your info and personal stories. I know I need to try to just live my life right now and stop reading into and second guessing what doctors say and worrying about the wait. I just want to know what I am in for and what to prepare my family for. I have a 10 and an 11 year old and I need to somehow prepare them, and have help lined up when I need it.

Thanks again - I appreciate your help and information. I know I'll get through it!
Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Jan 31, 2008 08:55AM kajo wrote:

The ones you expect to understand are completely oblivious and the ones you would never think are right by your side......

I can relate to this,  no one can truly understand what you are going through until they have walked in your shoes.  I wanted to warn everyone about this stuff, how I found it and educate them. They don't seem to want it or care about it. Don't want the details. They say they got it all and then you will have radiation and its all done. My children are married and involved in their own lives and I have had to reflect back in my own life to understand this. Try not to be angry with them. I have made a diary on my computer with a password, where I can let it all out. 1st diary in my life. The ones that stand with me are my husband, my mother, brother, neighbor, 2 friends, my step son and his wife have been exceptional which is completely shocking.

I have had to remember this "Forgive them for they know not what they do."  I hope I have helped you, just reading yours helped me more.

Thanks,

Kajo

Kajo Dx 12/5/2007, 1cm, Stage IB, Grade 2, 0/9 nodes, ER+
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Jan 31, 2008 10:36AM Kimber wrote:

Kajo,
Thanks - it never occurred to me that I would help anyone here. All I do is whine.

I actually have kept a diary for years, and instead of writing (hopefully nobody will find the books and books full of my private thoughts if something ever happens to me....:) I now keep one on my laptop that is password protected so I can vent about things like my in-laws who live 10 min away and don't even so much as call to see how my appt at the oncologist went. But I also try to write on a daily basis what I am thankful for, and I have a lot to be thankful for. EXCEPT THE WAITING!!!!

*smile*
Kimber

Strong family history, Prophylactic Bilateral Mastectomies 1/19/2010, Under "reconstruction" for 6 months.... DONE! HAPPY! Dx 1/15/2008, LCIS, 6cm+, Stage 0, ER+/PR+
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Jan 31, 2008 03:36PM femme wrote:

Dear Kimber and Kojo,
I have found that if I just try to do what is right and allow people to be themselves, it is easier to live in this world. People do surprise us and people are so very complex in their histories and psychological makeup. I am greatfull for all the good wishes that are coming my way and I do not dwell on people who have not been there for me. I do not know their full stories.

I like this quote attributed to Philo of Alexandria:
"Be kind, for everyone you meet is fighting a great battle."
femme

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