Yearly Breast MRI for LCIS

From what I read and NCI guidelines, I believe MRIs are a "to be considered" but not necessarily recommended annual follow up. It depends on your doctor and what other risk factors you have. I'm not doing them right now.

Kris - I'm glad to see your post.

I had lumpectomy for invasive ductal and DCIS in 2001. That was before they were doing breast MRIs. Tumor was detected via ultrasound and did not show up on mammo. I have heterogeneously dense breasts. Several years after surgery, they began (at a breast center in Atlanta) doing annual mammo/Ultrasound and MRI. Insurance did cover it but later it became more of a problem getting it covered due to change in insurance company. We have moved around some and various states have various guidelines. We moved to NC 3 years ago and I began having problems getting all three tests ordered. One oncologist (Duke) said mammo and U/S the other (Wake Forest) said mammo and MRI. Because my cancer was detected via U/S and did not show up on mammo, I'm uncomfortable not having ultrasound and don't see why I cannot have something I am perfectly willing to pay for. It is, after all, my body...!

I decided to go with the mammo and MRI because I assume the MRI will show things that the U/S will not...haven't really gotten a good answer on whether or not that is true.

Anyway - here is the thing.... I recently read that there have been studies showing that the MRI contrasting agent has been found to stay in brain tissue and could cause problems. Now I'm having anxiety about that. I've not found any information on this site concerning that but was lucky to find your post. I'm thinking I will now just do the mammo and ultrasound. I've also read about Breast-Specific Gamma Imaging (BSGI) which uses radioactive tracing agent which isn't "supposed" to stay in your body for very long.

I would be interested to see what others think and/or have heard about this recent development with the contrasting agent.

Awb, here's a link to a thread about it: https://community.breastcancer.org/forum/73/topic/...

This looks like good news! There is a new MRI technique that doesn't use a contrasting agent and it takes less time. It is called DWIBS-MRM.

Here is a link to the press release. https://www2.rsna.org/timssnet/media/pressreleases/14_pr_target.cfm?ID=829

You aren't the only one who is confused. I'm confused about it, and I certainly see little consensus about it in Pubmed papers.

They don't understand how it confers its increased risk. When LCIS women go on to get invasive breast cancer, the subsequent invasive breast cancer is in an area that OFTEN looked normal by imaging. Of course, we don't know if there was LCIS there, because in order to diagnose the LCIS we'd have to remove it.

LCIS (in spite of the name lobular carcinoma in situ) is not normally considered breast cancer. Thus, often people now refer to both LCIS and ALH as lobular neoplasia (which means abnormal cells.) Almost everything about it is controversial, and you will probably find different opinions about most everything by different researchers/doctors.

Despite the fact that its name includes the term "carcinoma," LCIS is not a true breast cancer. Rather, LCIS is an indication that a person is at higher-than-average risk for getting breast cancer at some point in the future. For this reason, some experts prefer the term "lobular neoplasia" instead of "lobular carcinoma." A neoplasia is a collection of abnormal cells. http://www.breastcancer.org/symptoms/types/lcis

The reason why there is the discrepancy is that LCIS was originally described by 2 prominent pathologists in 1941. So it was discovered by looking at tissue samples under the microscope. Since it looked analogous to DCIS, they named it LCIS, but they didn't know anything about its natural history (in other words, how many people would go on to get invasive breast cancer, DCIS, etc.) Up until about the 1990s, it was fairly routine for LCIS (and nothing worse) women to get bilateral mastectomies because they thought almost all of them would get breast cancer if untreated (like DCIS.) So, from these mastectomy specimens, we do know that LCIS is normally multifocal (meaning there are multiple spots of it in a breast), and often bilateral (in both breasts).

Almost everything about LCIS is controversial because it is so difficult to study. It is not RELIABLY detectable by any imaging or clinical exam (though it may be). In most cases, LCIS is found when they are doing a breast biopsy for some other reason. LCIS is often found not AT the site of a 'suspicious area' (in other words, at the calcification or suspicious mammogram or ultrasound or MRI area) or at the lump, but adjacent to it. We don't know how many people are walking around with LCIS and don't know it, because they normally can only diagnose it from a breast biopsy sample. It is rather unusual. (DCIS was discovered roughly ~1890, and LCIS about 50 years later in 1941.)

As I mentioned, just about everything about it is controversial. Obviously, I'm not a physician or research scientist, but when you ask your doc(s) do not be surprised if you get a variety of opinions.

This paper suggests that LCIS found at the margins of a biopsy for invasive breast cancer did not increase the relapse rate. http://www.ncbi.nlm.nih.gov/pubmed/16329136 as did this paper. http://www.ncbi.nlm.nih.gov/pubmed/18506537

This paper opines that LCIS does increase the risk. http://www.ncbi.nlm.nih.gov/pubmed/11346867. This paper opined there was more recurrence when LCIS was at the margins, but this was a study of only 38 patients. http://www.ncbi.nlm.nih.gov/pubmed/20727142

Many studies are small, because it is unusual. I have seen some studies that are described as 'long term' studies when they last 2 or 5 years. Hopefully, I'll be living with LCIS for more than 2 or 5 years, since I've known I've had it since 2005. But I haven't had any abnormal breast issues since about 2007 or so, and have not gotten anything worse than plain classic LCIS.

Obviously, your ILC is much more serious than your LCIS. Your radiation treatment and hormonal therapy are more than would usually be prescribed for LCIS by itself (alone). (They normally don't do radiation for LCIS alone.) The usual options for LCIS alone are surveillance alone, to try to catch any breast cancer early; surveillance plus anti-hormonals, or bilateral mastectomies.

Feel free to ask questions. There are a lot more questions than answers in this field, but we have to start somewhere.

Best wishes.

You're very welcome!

Fibrocystic disease: Well, according to Dr. Susan Love, the famous breast surgeon, who tends to 'tell it like it is',

Fibrocystic disease is basically a meaningless umbrella term, a basket into which doctors throw every breast problem that isn't cancerous. The symptoms it encompasses are so varied and so unrelated to each other that the term is wholly without meaning. To an examining doctor, fibrocystic disease can be swelling, pain, tenderness, lumpy breasts (a condition not to be confused with breast lumps), nipple discharge, and basically any noncancerous thing that can happen in or on the breast.

To a pathologist, fibrocystic disease is any one of about 15 microscopic findings that exist in virtually every woman's breasts and never reveal themselves except through a microscope. They cause no trouble and they have no relation to cancer—or to anything else, except the body's natural aging process. Only one of these microscopic findings is a danger sign: It's called atypical hyperplasia, and combined with a family history of breast cancer, it can suggest an increased breast cancer risk.

You probably went to the doctor because you were having a problem with your breasts. You should talk with your doctor about that specific problem, not the meaningless term fibrocystic disease.

http://www.drsusanloveresearch.org/normal-breast-q...

They normally can not tell that you have LCIS by any macroscopic means (no lump, no mammography changes, etc.)

Calculating the true incidence of LCIS has always proved difficult as there are no specific clinical abnormalities, in particular, absence of a palpable lump, and, because most (but not all) LCIS is not associated with microcalcifications, it is often undetectable by mammography [25] [26]. When examining a pathologic specimen, there is no macroscopic features characteristic of LCIS to guide tissue sampling. The diagnosis of LCIS is therefore often made as an incidental, microscopic finding in breast biopsy performed for other indications. For these reasons, the true incidence of LCIS in the general population is unknown, and many asymptomatic women presumably go undiagnosed. In studies, the incidence of LCIS in otherwise benign breast biopsy is documented as between 0.5% and 3.8% [3] [27]. http://www.eusoma.org/Engx/Guidelines/Other/OtherS...

Since most LCIS do not present as a mass nor contain microcalcification, mammography and ultrasound do not appear to have a role in prospectively diagnosing LCIS. LCIS may be associated with contrast enhancement in magnetic resonance imaging (MRI) and may therefore be visible, but this is usually masked by enhancement secondary to concomitant fibrocystic change, hence reliable diagnosis may not be possible even with MRI. However, PLCIS, which more often show microcalcification will be picked up because of similarities in presentation with DCIS [25] [26]. http://www.eusoma.org/Engx/Guidelines/Other/OtherS...

It may not matter whether or not you have detectable LCIS in your 'good' breast:

Characteristically, LCIS is both multifocal and bilateral in a large percentage of cases. Over 50% of patients diagnosed with LCIS show multiple foci in the ipsilateral breast, and roughly 30% of patients have further LCIS in the contralateral breast [28] [29] [30]. Such multifocality in a clinically non-detectable lesion is one of the reasons why planning subsequent management has proven problematic and contentious. http://www.eusoma.org/Engx/Guidelines/Other/OtherS...

(If you are having trouble with these Eusoma links, I found them by Googling 'incidence LCIS' and looking for Eusoma. Its about the 6th item from the top.)

Best wishes,

Anne - a TECH was writing that an MRI is only useful for >20% risk?? I would think that would be somewhat audacious? Well, given the uncertainties in what 'risk' is, and the variety of answers I've been given in my prognosis, perhaps the Tech knows about as much as the insurance company does (in other words, is not much.)

I had 'suspicious microcalcifications' too on an annual routine mammogram. They found my LCIS on a core biopsy. But I suspect that my LCIS was not found _at_ the site of my microcalcifications. I know they were Xraying the sample they removed at excision, so I suspect my LCIS was not at the site of my calcifications, but near to them.

I've seen other articles that say that LCIS is sometimes/often found not _at_ the site of the lesion for the biopsy, but adjacent to it.

In this study, Of the 15 lesions with ALH, 13 (87%) were adjacent to (n = 12) or associated with (n = 1) microcalcifications,....Of the 10 lesions with LCIS, seven (70%) were adjacent to (n = 6) or associated with (n = 1) microcalcifications, and three (30%) were in or adjacent to masses. http://www.ncbi.nlm.nih.gov/pubmed/11161169 (emphasis mine). I know the number of subjects here are very small.

Perhaps, this, too, is controversial, especially considering the small number of LCIS diagnoses.

Best wishes with your screenings, anne.

Sheesh, anne- how frustrating! The tube of blood they draw for genetics looks like any other tubes of blood. (I'm not a blood drawer so I don't know the color of the top or the additives in the tube.) On another (non-bc related) genetics test, a phlebotomist came to my house to draw the blood from me!!! (I live in a city of roughly 100,000.) Obviously they have to ship the tube to the genetics company to get it analyzed, but the blood collection tube came in a shipping box to send the tube to the company. So on a purely physical basis, it seems like any phlebotomist could draw the blood. (I told them I was certainly physically able to go to a clinic or lab to get it drawn.)

I don't, of course, know about the insurance issues.

Hope your mom does fine with her eye surgery, your trip goes well, and you can get the answers you need.

My insurance company will cover one breast MRI a year. I have no idea why your dr would stop MRI's if u have LCIS. Get another opinion.

just reading this now.. Yes I had LCIS in both breasts found with Cancer on each breast in sequence.

I'm treated at Sloan Kettering.. NO MRI's, NO 6 month mammos. 2 subsequent bilateral cancers. Just mammo every year. Thought to be treated with hormone therapy. Worrying but go figure. I ask each onc I've seen again and again about LCIS.

Ok. Well my surgeon tells me not to worry. I read tons and can't figure. Hope that helps.