LCIS--close monitoring

Rosedew1951, I, too, am on Raloxifene to reduce my risk. I have decided not to continue the close monitoring due to the physical and emotional stress of the testing and repeated biopsies. So, I'm in the process of planning PBMs, probably in July. I saw the same Dr. ophelia is using. Remember that there are techniques being developed that many doctors have not even heard of, so definitely do your homework.

Anne

I'm new to the LCIS forum.  I was treated for Stage I, IDC, 100% ER+, but recently reread my pathology report and discovered that multifocal LCIS was in the 10x2x2 cm specimen that was resected.  I had a lumptectomy and radiation.  My docs never discussed this finding with me and I completely overlooked it on my path report.  I just had my first post tx mammo and exam and was given the all clear.  I got a little concerned when I was told prior to surgery I would have regular 6 month f/u, but now I was told 3 month f/u, that's what caused me to take another look at my path report. 

So, I've been completely freaked out by this LCIS finding.  I'm postmenopausal (previous total hysterectomy). I tried Arimidex and Tamoxifen and quit due to severe gastro SE's.  Now, I'm going to try Evista.  I need to call my doc and talk to him about the LCIS, but first I wanted to do the research. 

I'm attaching a link to an article I found about LCIS and DCIS. The article was published just before Evista was approved by the FDA for breast cancer. I've read a lot of other articles that have been referenced on this site. Thanks for all the info you gals have provided. 

www.lbbc.org/data/transcript-file/LBBCdcislcis06.pdf

Brenda

Thanks AWB for writing back to me.  I'll see my doctor for 3 month f/u in March and discuss regular 6 month mammos and US or see if MRI is covered.  I'm going to give Tamoxifen another try at a lower dose and tritrate up and see if I can tolerate it that way. 

It just really messed with my head, if you know what I mean, to go back and discover this.  I know there is no cure, but to discover this component 9 months after my dx really threw me for a loop. 

I feel like I have to find "another" new normal, when I was just starting to come to terms with the "other new normal."

Thanks again,

Bren

Hi Carrie!!

I had a total hysterectomy a few years ago ... I was on hormones until my dx .. and then they took them away from me! Duh! So, I've been in menopause for 9 months now. Edge posted on Gina's that there hadn't been any long-term trials done on Evista for LCIS, but that was my next plan of attack.  Check out his forum next time you're over there. 

Thanks for writing.  I've been a little down the last little bit about the whole new discovery.  I had 26 rads with 8 boosters on the left ... hopefully that killed anything left on that side.  Glad to hear you didn't have any SE's from the Evista.

I think I'll call my PCP tomorrow and get started on it sooner rather than wait until March for my peace of mind.

Talk to you soon.

Love,

Bren

I was diagnosed with LCIS last year.  I was having mamo.s every 6 months to watch calcifications.  A stereotactic biopsy showed LCIS.  Subsequent surgical biopsy showed multi-focal LCIS and ADH (atypical ductal hyperplasia).  I had an allergic reaction (rash) to Tamoxifen, so I had to discontinue it.  Because I had an ovarian cyst, which my gyn. thought was most likely benign, I opted for a total hysterectomey/oophorectomy.  A month after that, my next mamo. showed my LCIS had progressed.  Three oncologists recommended prophylactic mastectomy. 

 Dr. Joshua Levine and Dr. Robert Allen (www.diepflap.com) performed an IGAP (free flap from buttock tissue) breast reconstruction.  Surgery was really long, but results are great.  Recovery was easier than for my hysterectomy.  Dr. Allen invented the IGAP procedure, so he's a real pro!  Dr. Levine couldn't have been more wonderful!

The articles that I have read say that most LCIS is multifocal, and usually bilateral (from mastectomy specimens I assume.) But from what I read, that doesn't matter much, because LCIS puts BOTH breasts at risk, even if there was LCIS only in one breast. (The articles I've read have given figures than range from about 65%-35% to 50%-50% between the two breasts.) Thus, they usually don't recommend treatment for only one breast. Its often found not at, but adjacent to, an 'area of suspicion'. Its a weird disease.

At 51 yrs. old I was just diagnosed with LCIS 2 mos. ago when I had a lumpectomy to remove two areas that had two different types of cells that could lead to two different types of bc.  Since my mother died of bc at 56 and one of my four sisters was diagnosed with ovarian cancer last year, I decided to do a breast MRI and BRCA testing.  The MRI found the two spots I mentioned above, the lumpectomy revealed the LCIS as well.  Thankfully or not the BRCA testing came up negative.  I was glad to see the comments above from women who decided to get mastectomies.  I was beginning to think I was the only one thinking that way.  I noticed that the oncologists I've seen recommend tamoxifen and close monitoring while the surgeons seem to lean toward mastectomies.  I think I will go with the Raloxifen until I find a surgeon and PS that I feel comfortable with.  Since LCIS is only found through biopsys or lumpectomys until it becomes cancer I think I'll opt for the bilateral mastectomies.  I've watched too many family members go through chemo., radiation and death to even wait and watch.  I pray that each of our decisions is the right one for each of us.

TT,

I was diagnosed and treated for IDC a year ago.  This past December after taking another look at my pathology report, I found that I also had multifocal LCIS and DCIS in the resected tissue.  I had a lumpectomy and radiation for the IDC tumor.

Now, I find myself wondering what I should do about the LCIS situation.  I consulted with a medical researcher on another b/c website about LCIS to get his opinion.  I'll copy his response here for you.

I hope this helps you in some way. 

Your questions are excellent and your concerns if not alarming quite justified and prudent. So I'll try to untangle the issues below and provide for you a way to think about these matters b based on the best balance of the evidence to date.

LCIS
First the facts, briefly: for stage I-II breast cancer such as yours, local recurrence occurs in approximately 10%-20% of patients treated with BCS (breast-conserving surgery, aka lumpectomy), which is significantly reduced by postoperative radiotherapy, but the reduction is primarily a reduction of ipsilateral - not contralateral - breast tumor recurrence.

As to LCIS, its biological significance as a "risk indicator" versus a "breast cancer precursor" has been a matter of considerable debate. Note that the risk indicator nature of LCIS is not in dispute - in fact, it is widely accepted that LCIS confers a modest increased risk of development of invasive carcinoma of about 1 to 2% per year, with an 8-year risk of about 4.4 - 4.7%, 10-year risk of between 7% and 8%, a lifetime risk of 30 to 40%, and a relative risk of breast cancer of 8 to 10-fold.

Now, as to the balance of the latest evidence, it suggests:

1. That LCIS is both a risk indicator and a non-obligate precursor of invasive breast cancer; what this means is that LCIS should be considered a predisposing determinant of risk for subsequent invasive disease in either breast, but as a non-obligate / non-inevitable precursor the development of subsequent invasive carcinoma is not assured, although its risk is elevated, and the invasive carcinoma, should it develop, is not necessarily assured to be of lobular histology.
2. Nonetheless, as a preneoplastic state from which progression may not be inevitable, LCIS is in general a reversible condition of low biologic potential and typically slow progression to invasive cancer if any.
3. Local recurrence risk (LRR) varies somewhat with tumor size, with tumors > 3cm sustaining higher risk, and with young age (< 50) being an independent significant factor.
4. Risk reduction with unilateral mastectomy is only modest, and it is for this reason that PBM (prophylactic bilateral mastectomy) needs to be considered an option for selected patients, based on the cumulative weight of all risk factors.
5. The landmark NSABP P-1 Study established that progression to invasive disease seems to be significantly inhibited by the use of tamoxifen.

A Warning
Now. although the standard of care with LCIS is currently close follow-up together with chemoprevention via tamoxifen, the recommendation of your PCP to deploy the other SERM, raloxifene (Evista) instead of tamoxifen is in error and wholly against the evidence, and would lead to a false and dangerous illusion of preventive value: as decisively shown in the recent STAR trial, one of the largest breast cancer prevention clinical trials ever conducted, raloxifene (Evista) is of no significant benefit of risk reduction in LCIS; while tamoxifen was been shown to reduce by half the incidence of both LCIS and DCIS, raloxifene (Evista) did not have any appreciable effect on these diagnoses. And this result confirms data reported earlier in 2004 from the large CORE study of raloxifene (Evista). And, unlike tamoxifen which is chemopreventive in both premenopausal and postmenopausal women, raloxifene (Evista) is sanctioned, and of value, only in the postmenopausal setting.

Multifocality
Multifocal disease describes cases in which two or more discrete tumors can be detected clinically, radiographically, or pathologically in the same breast; the term multicentric is used to describe multiple independent primary tumors in one breast, in contrast to multifocal which describes multiple tumor nodules derived from a single primary tumor and that occur close (in the same quadrant as the primary tumor) to the primary lesions. Multifocality is well-established as a significant risk factor for local recurrence, largely because it is thought to represent intramammary spread, but this is in part dependent on whether it is a case of multifocal LCIS versus multifocal DCIS: currently, the significance of multifocal LCIS differs from multifocal DCIS, as there is considerable doubt as to the malignant potential of the cells in LCIS, but nonetheless the multifocal LCIS incurs non-obligate elevated risk of local recurrence, which may not develop inevitably, and which may be countered by effective preventive intervention, either chemoprevention and/or prophylactic surgery.

Breast Density
Dense breasts - breast that are highly fibroglandular and so contain proportionately less fatty tissue - is one of the most consistently established factors for elevated breast cancer and recurrence. The stock explanation which you quoted from the mammography report, is that "underlying breast tissue is dense, limiting mammographic sensitivity" suggesting that the elevated risk is largely consequent to compromised detection, but in fact the risk is known to be wholly independent of this: carcinoma in breast fatty tissue is exceedingly rare, as it commonly embeds in the connective tissues (lobes and ducts) and collagen structures of the breast - even if it were perfectly detectable without error, the risk remains since dense breasts simply contain far more "at risk" structures.

The good news is that breast density can be appreciably reduced if not wholly eradicated by various effective interventions: robust physical exercise, minimal near-null consumption of alcohol, and a low-(saturated) fat diet as lifestyle interventions, and calcium (1500mg/daily in three divided doses as the citrate or phosphate salt, not carbonate) and HD-D3, that is, high-dose Vitamin D3 (3000 IUs/daily) as nutritional interventions, all can appreciable reduce breast density, and therefore, associated risk.

Surveillance
Given breast density, and the elated risk of LCIS and multifocality, mammography should be supplemented by MRI, which is demonstrably superior in detecting multifocal lesions, and in detecting any potential malignancy in dense breasts. I typically advise an "interleaved" scheduling - both yearly, but one (either) six months after the other rather than at the same time, assuring no more than six months before another surveillance is scheduled. In addition CBE (clinical breast examination) is of value if not rushed and in the hands of an expert.

I am unaware of any compelling evidence that surveillance more frequently than at the six month point is of material benefit, but should you want to "simulate" it, ultrasound scheduled at at least one 3 month point may provides some modest extra assurance. (As to calcifications, being declared benign, the only concern would be a rare malignant foci hiding among the benign calcifications, but a multimodal surveillance program of mammography, MRI and intermittent ultrasound is the best means of addressing any such small eventuality).

Final Thoughts
The elevation of risk by the combined factors of LCIS, multifocality, and breast density (and possibly age, although I am unaware of yours in this case) motivates (1) both robust surveillance as I outlined above, (2) possibly surgical prophylaxis in the form of BPM (prophylactic bilateral mastectomy) and/or (3) some component of oncoprevention. As to one form of prevention, namely chemoprevention, here, assuming tamoxifen has proved intolerable, and knowing that raloxifene (Evista) is of zero benefit as I indicated above, your options - assuming you are not already postmenopausal - are ovarian ablation, either surgical as oophorectomy, or medical, as ovarian suppression via LHRH/GnRH analogs like goserelin (Zoladex) or leuprolide (Lupron) to induce a true menopausal state which then makes you a candidate for aromatase inhibitor chemoprevention (and of course if already postmenopausal, then AI therapy is motivated).

Hi TT,

No, about the radiation.  My tumor was small, a little under 1 cm.  My surgeon removed an area about 10x4x2 cm on my left breast, upper outer quadrant.  That breast was bigger than the other one, so now they're about the same size.

I have healed beautifully from radiation.  I'm about 9 months out.  I had areas of numbness under my arm from the lumpectomy and SNB, but has all healed now.  I don't have any lumps in my skin at all the color is great.  My areola is darker than the other one and the skin is a little tougher than the other one, but that's the only difference.  I was very careful all throughout radiation to slather on Aquaphor three times a day and keep my skin covered in the stuff all the times.  I did burn and get a rash though ... fair skinned. My breast did get kind've swollen with rads, kind've plumped up a little. That went away about a month or two later.

I think if you have any lumpiness it would be from the lumpectomy not the radiation.  But that's just been my experience.

With radiation, it can take many months for your breast and skin to completely heal internally.  Externally, I healed quite quickly. 

Keep posting and let me know how you're doing. 

Keeping you in my thoughts,

Bren

Hi Anne,

You can write to Constantine with your questions.  I'll get the link for you.  I believe he was previously a medical researcher on this site. 

http://www.websitetoolbox.com/tool/post/nosurrenderbreastcancer/vpost?id=2426130

I hope this works.  He has his own forum on nosurrenderbreastcancer website and will answer all your questions.  He's also been great with consulting with some of our members and their oncologists and their treatments, even with another member who has mets and sees my oncologist!

Bren

HI I AM NEW TO THIS BOARD I HOPE I EXPLAIN THIS RIGHT.

I HAD A MAMMO DONE BACK IN DEC 2007 THAT FOUND SOMETHING SUSPICIOUS AND RECOMMENDED I HAVE A BIOPSY DONE IN FEB THE SURGEON SAID THERE WERE TWO AREA'S AND SHE WAS'NT SURE IF SHE HAD TO DO TWO INCISIONS BUT IT TURNED OUT TO BE ONE INCISION. I HAD THE SURGERY IN FEB 2008 THE PATHOLOGY REPORT CAME BACK THAT IT WAS BENIGN CLACIFACTIONS BUT ALSO LCIS. SHE RECOMMENDED AN MRI WHICH WAS DONE IN APRIL I THEN GET THE RESULTS AND WAS TOLD I NEEDED AN ULTRA SOUND WHICH WAS DONE IN JUNE AND IT WAS FINE BUT BECAUSE SOMETHING SHOWED ON THE MRI THEY STILL FEEL I NEED AN MRI BX BIOPSY. I KNOW THESE MRI'S SHOW ALOT OF FALSE POSTIVES COULD IT BE POSSIBLE WHAT THEY ARE SEEING IS THE OTHER AREA THAT THE SURGEON WAS CONCERNED ABOUT THAT HAD ALREADY BEEN BIOPSIED. I AM REALLY AT MY WITS END WITH THIS. NOW I'M SCHUELED FOR THIS  JUNE 25TH. FOR THIS MRI BX

THANK,

IRISHEYES28

According to the American Cancer Society, there are ****SOME**** circumstances where they feel it is OK to NOT excise LCIS after it is found on core biopsy. http://community.breastcancer.org/topic/95/conversation/702563?page=1#top



However, there are still many breast surgeons who ***would*** recommend excision both when these rather strict guidelines are met, and for all the other cases.



In this paper that nash posted http://www.asbd.org/images/asbd_advisor_issue2_2007.pdf

about 50% of the breast surgeons ALWAYS excise when LCIS is found on core, about 8% NEVER do, and the rest are inbetween (see table 1.)



LCIS very often does NOT show on mammogram, ultrasound, or MRI, and is often ONLY found on biopsy.



Some papers have indicated that **IN GENERAL** maybe 20% of excisions of LCIS show something worse than LCIS on excision. This is important, because anything worse than LCIS almost always requires further treatment. I don't think there is any agreement under what circumstances they should excise and what circumstances they should not. Maybe the particular type of LCIS makes a difference, and maybe not. I chose to have mine excised, but your decision may be different. I got a lot of scar tissue from my excision, which makes mammos and MRIs hard to read now.



It is ultimately YOUR decision- it is YOUR body.

hi helene,

i was diagnosed with lcis jan o9 its been so hard and all I have done is montioring.. NO tamox can u give me a call i would love to talk with you.  It seems like people either do PBMs or tamoxofen.. My number is 9143916764.

thanks

christine