LCIS-BC or not BC

rabrams

I am at the end of my journey from DM. Was diagnosed July 2008 with LCIS, did research for a year before deciding of DM, Sept. 2009, because the "just watch it" didn't work for me.  So now when people ask about my DM, the question always comes up, did you have Breast Cancer?  While i know LCIS and DCIS are not invasive, it is still considered STAGE 0.  This forum has been a gold mine of information and support, and i'm so happy to have stumbled on it.  So for all you out there with LCIS, what do you say?

Anonymous

There is a LOT of controversy in the medical community about LCIS as I'm sure you already know. Technically and pathologically it IS a non-invasive bc (in-situ stage 0). I was diagnosed almost 7 years ago, had a lumpectomy, took tamoxifen for 5 years, now have been taking evista for over a year, continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. My oncologist stated emphatically that it IS breast cancer, just a non-invasive type. (my pcp, gyn and bs all consider it bc as well). I just explain to people (if they ask, which they usually don't) that I have a non-invasive type of bc that doesn't require chemo or rads, but I am monitored very closely and I take meds to hopefully prevent an invasive bc in my future. (you could explain it by telling them you had a non-invasive bc that put you at high risk and you had the BPMs in order to decrease your risk as much as possible.)

anne 

rabrams

Hi Anne,

I thank you for your imput.  I am glad to hear from someone who chose not to have the surgery, and glad to hear your results so far are positive.  I had had 3 biopsies in 7 years with the last one showing the LCIS, and when consulting my oncologist with the option of tamoxifen, i have a family history of clotting, so my choices were to be monitored every 3 months or have the surgery and not have to think about.  For me it was the absolute best decision i made, mentally could not take it any more.  Thank you for the info on bc vs. not bc.  that makes it easier to hear from others.  It is amazing how educated we get when we have to, and some people out there are so naive that they open their mouths with opinions when they don't have the correct answers, so i'm glad that your doctors, and my doctors are on the same page with that.  All the best for continued health.   

Randi 

suzieq60

Randi,

LCIS is not breast cancer - it is misnamed. This site explains it perfectly http://www.breastcancer.org/symptoms/types/lcis/

Sue

rabrams

Sue,

Yes i've read many many articles that say that same thing.  But then why do so many doctors disregard that and the fact that more often then not women with LCIS either have PDM or wind up with BC at a higher stage?  Many articles state that LCIS/DCIS are stage 0.  I guess it really doesn't matter, abnormal cells or not, since they are not invasive the term not cancer is said.  

Everyone has their own opinion about it, and that is why i put the question out there. thanks 

suzieq60

I have extensive LCIS left in my breast after a lumpectomy for pleomorphic ILC. I asked my new surgeon yesterday if she would have tried for clean margins on the LCIS and she said again that it is not cancer and it's ok to leave it there. Obviously I was at a high risk to get invasive cancer which has been proven but there is no reason to expect the LCIS left in there to do anything. My oncologist also says that LCIS is not the same as DCIS and that it's ok for it to be there. So I have 3 doctors (including my original surgeon) all saying it's not a problem for it to stay there. I would have gone for a mastectomy if they thought it was necessary. There are certainly reports of over reaction to LCIS among the medical fraternity.

rabrams

I agree, not all doctors think alike as no two women will make the same choices.  As long as we all stay healthy that's all that matters, and are all comfortable with the decisions that we make.

rabrams

I have to add one more thing, i don't agree that abnormal "things" should be left in the body, i guess the percent of breast cancer where you live is not as great as is here in NY, where it is becoming an almost epidemic. All of my doctors, felt LCIS is a ticking time bomb ready to go off and why risk it.  i once read a story, a pilot says to the passengers that the plane has a 25% chance of crashing, would you still get on the flight?  I wouldn't, and that is what LCIS basically is , a 25% chance of becoming invasive.  That much of a gambler i'm not, not worth the risk,  so we all look at it differently, and any literature you forwarded was dated from 2008 in those articles, I would still tend to say that LCIS is a stage 0 cancer, case and point on this web site.....

Lolita

My surgeon thought it would be alright to leave the LCIS without clean margins and did not think she could get it all, anyway.  My radiation oncologist insisted that it all had to be removed.  I wound up getting a bilateral.

rabrams

Lolita, thank you for your imput, and sorry you had to have the bilateral.  

MistyJ

Hey rabrams,

I say that I have cancerous type changes in the cells in my lobules because that is what the definition is, but that they are not able to invade other parts of my body.  However they do put me at a higher risk for developing invasive cancer later so I have decided to do the prophylactic bilat. mast. with immed. recon TE's.  I tell people that with LCIS I may not ever get cancer, but there is a high chance that I might....and I do not want to gamble in favor of not.  I love my DH, my daughters, my family and life way too much to wish later that I had opted for surgery.  If I don't get CA, I will spend my life constantly being imaged, examined, poked and prodded, and nauseous each time with worry.  And God forbid I ever have to wait the week out for biopsy results.  If I do get CA....well then I get surgery AND chemo AND Rads.  I will do everything in my power NOW to be preventative not reactive later.  Leaving LCIS does not mean you will get cancer.  The excisional biopsies are to rule out other things hiding that are not picked up on the monitoring.....and if you read enough of this site....you will see that it happens frequently. I have done enough research on it all to know that they can not tell us anything for sure, only what they think to be the statistic. I can find you just as many studies that say it is dangerous as those that say it isnt.....possibly more.  But we have what are called options for a reason, it is what each individual person feels comfortable with.  Reports of overreaction does not make sense really............what reports?  Studies reports, opinion reports......and based on what....the overreaction you speak of is preventative BM I presume...so who is to say the person would not have developed cancer?  I watched my sister die from BC at 18, so things happen that people say don't.  I personally feel....once again~personal decision~ that by having a PBM for LCIS I am giving up such a small thing and gaining such a large thing!  If I choose between a car that has a 25-40% chance to wreck and hurt me or a car that has a 90% chance to keep me safe...hmmmm.......no brainer to me.  rabrams I guess I had more to say than I thought at first

rabrams

Thanks Misty,

You have said everything i've thought prior to my sugery, and glad to know our thinking was alike. It was a no brainer, and i hope for all those who choose to not do the surgery for LCIS, have no problems in their future.  I appreciate the feedback 

Glo53

Hi everyone,  I too was diagnosed with extensive LCIS & ADH recently and I don't have history of BC.  I had a biopsy and lumpectomy, my surgeon was great and I can't even tell it was done. I don't think I can go through an MRI or Mammos every 6months and a utrine ultra sound too.  I'm on Tamoxifen right now and no side effects but am worried about going on anything else. Now I'm being monitored for BC and utrine cancer every six months. I'm sure if I continue this route I too will have more biopsies. I have my family who are behind me 100%. That is why I am thinking of having a bilateral mastectomy. I wonder if people think I'm jumping the gun when I don't have BC but I think why wait until I have it.

rabrams

Hey Glo53,

Your not jumping the gun, your being proactive, i think that is what most of us with that diagnosis have done, especially if tamox, was not an option.  It is a personal choice of what you can handle.

thank you  

leaf

Actually, the posts you see may not be representative of the entire spectrum of patients who have  LCIS (and nothing worse.) Most people who have no trouble with their therapy or treatment stop posting.

Although this is a small study in 2005, it said Fourteen patients (35%) were placed on a selective estrogen-receptor modulator. Eleven patients (28%) had bilateral mastectomy. Three patients had unilateral mastectomy.  http://www.ncbi.nlm.nih.gov/pubmed/15862506

In this 2004 study of high risk patients (so there are other patients here besides LCIS) Fifty-seven of the women who were offered tamoxifen (42%) took the drug.http://www.ncbi.nlm.nih.gov/pubmed/15112259

I can't find more recent studies than this that talk about LCIS choices.  This was before Li's opinion that LCIS may in some small circumstances, be a nonobligate precursor in a small number of cases in 2006.http://www.ncbi.nlm.nih.gov/pubmed/16604564

Of course, one should not think that the most popular choice of a group is the best choice for you. We all have our own individual strengths, weaknesses, desires, and goals.

If you read this forum, you may come to the conclusion that 90% of LCIS (and nothing worse) patients get BPMs.   I don't think that figure is accurate, at least for those with classic LCIS.

Best wishes to all regardless of their choice.

Anonymous

Glo--I just sent you a PM about the tamox and the evista (I have done both and tolerated them well with minimal SEs). It's a good idea to have a transvaginal US once a year if on tamox to monitor both the uterine lining and the ovaries; not necessary with evista. I do fine with the high risk monitoring (alternating MRIs with mammos every 6 months and breast exams on the oposite 6 months)--everyone is different with their ability to tolerate risk--whatever you choose, will have to be right for you. I think each person knows when enough is enough. Fortunately, I haven't had to have any more biopsies in almost 7 years since diagnosis. I'm not ready to go the route of PBMs, but if I ever have more issues, I would always seriously reconsider my options.

Anne

taraleec

rabrams:  Hi.  I'm sorry to hear you're going through this.  I was 36 when I found my 1st lump but I was 38 when it was removed; which turned out to be LCIS.  All of my Doctors were surprised at what it turned out to be for my age.  My ONC said LCIS IS CANCER - at its earliest stage.  I saw multiple Dr.'s.  A surgical oncologist I saw said it's cancer & I'd be playing Russian Roulette to leave it alone.  My GYN also said it's cancer, so did my General Surgeon and Plastic Surgeon.  And a handful of other Dr's as well, (also a few other Dr's said it's not cancer)  But being that the Dr's I trusted most, said that it is, I decided to have a Bi-lateral Mastectomy with Immediate Tram Reconstruction (Jan. 2010).  Also I have a young son and didnt' want to take chances.  After my Mast. there was more LCIS found in the original (left) side and (tho' I'd had several surgeries on both breasts prior)  there was more ADH found in the right side.  I'm not happy with my breasts, but at least I don't have that worry that an Invasive Cancer was to come.   But you are the only one who can make your decision on treatment, surgery etc.  I'll be thinking of you and keep you in my prayers. 

rabrams

Thanks taraleec,

Today i'm getting my tattooing done.  I have to say, i love my new breasts.  They are perfect.  I go back to ONC, next week, to see what follow up i will have in my future. Sorry your not happy with your breasts, but as you said no worries for future invasive cancer to come.  Best of luck to you as well. 

jenniferv

I would like to hear from those ladies who are 5 years out from Dx with LCIS and and are  doing MRI's and Dx mammos every 6 months - I also  am now 6 years out from dx - was on tamoxifen - then aromasin and now Evista - Onc has discharged me - Surgeon not sure what to do with me - OBGYN put me on Evista but will not recommend MRIs -  I will not consider Bilateral at this stage  of my life - I am 60 years of age with only  a risk factor of elevated cholesterol for a health problem - no family hx of breast cancer -   for me a bilateral is too aggressive - But I am intersested to know about continuing MRI;s after 5 years - I  have had no biopsies in 5 years so I am good - probably because of the medication - which is now changed -   would love to hear from some of you who went on Evista and what happened - 6 months out and 1 year later -  -

Anonymous

jennifer--I was diagnosed almost 7 years ago with LCIS, took tamoxifen for 5 years, and now take evista. I tolerate both medications pretty well overall. I continue with high risk surveillance with alternating MRIs and mammos every 6 months, and breast exams on the opposite 6 months, so I'm essentially checked by some method every 3 months. Why did they have you on aromasin--did you have invasive bc along with the LCIS?

anne