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Topic: LCIS SURVEILLANCE SIX MONTH CLUB

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

Posted on: Mar 4, 2021 04:36PM

---faithhopelove--- wrote:

Hi Everyone,

I was diagnosed in 2011. I did Tamoxifen for five years with routine MRI/Mammogram every six months. Sometimes the MRI would result in a biopsy but to date no cancer. However, lots of call backs and additional biopsies as I'm sure you all can relate. I have been told I have dense breast fibrosis. Recently after having concerns with the Gadolinium among other things I requested to stop doing MRI and replace it with ultrasound. My Doctor supported that decision but recently I moved and my new doctor believes ultrasound as a tool for surveillance is not helpful. This doctor suggests I come in for a breast exam twice a year and mamo once a year. I feel slightly apprehensive moving forward. I'm 55 years old now. Would anybody care to share what they are doing? Thank you!


Dx 4/2011, LCIS, Right Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 4, 2021 05:47PM LivinLife wrote:

Just want to welcome you faith! My situation was totally different... I'm hoping others will come along soon who have had similar or somewhat similar experiences... Best!

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Mar 13, 2021 04:35PM light1candle wrote:

Hello faithhopelove. I was diagnosed with LCIS in 2017 and have been pursuing the increased surveillance since then (no chemoprevention as yet). I have been doing the 6 month rotation between mammo/clinical exam with other imaging. In my first year, I did do an MRI, but had an adverse reaction to the gadolinium (hives) that my BS said would require me to need prophylactic treatment with something like Benadryl before future MRI’s. She also was becoming concerned about the possibility of brain deposition of gadolinium in her high risk patients who take yearly screening MRI’s. With that in mind, together we chose to switch me to an alternative form of ultrasound imaging which is offered at my hospital. It is called SonoCine, and is an automated whole breast ultrasound (AWBUS) technology, a screening ultrasound which covers *all* of *both* breasts. It is not the same as the targeted diagnostic US that we have probably all had for particular areas of concern. Though there are different “brands” of AWBUS technology, I suspect it is not very widely available - my hospital is the only one in the St. Louis, MO area with SonoCine.

I know that no imaging technique is 100% accurate, especially with lobular tumors. But I feel more confident and relaxed using two different types of imaging, and so far, so good. I would, however, go back to having an MRI if something of concern showed up that warranted that particular kindof imaging.

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Mar 13, 2021 04:55PM MelissaDallas wrote:

One note as to light1candle’s statement:

“I know that no imaging technique is 100% accurate, especially with lobular tumors”

That is true, but LCIS is not an obligate precurser.Frequently women with LCIS who go on to develop cancer don’t develop lobular cancer.. They often develop ductal cancer or DCIS.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Mar 13, 2021 06:13PM light1candle wrote:

Hi MelissaDallas. Yes, I know that DCIS and ductal tumors are possible, even the more common cancers in women with a prior LCIS diagnosis. But my comment above was in relation to problems with imaging for high risk screenings. My understanding is that ductal cancer cells tend to clump and form lumps which are more likely to be felt or seen on mammography or ultrasound. Lack of e-cadherin can cause lobular cancer cells to form single file columns or sheets of tumor which cannot be easily felt or seen on imaging until they are much larger. Women call ILC a “sneaky” cancer because it so often evades early detection, so it is the thought of ILC that gives me more anxiety about the possibility of being missed by my 6 month screenings

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Mar 13, 2021 06:58PM - edited Mar 13, 2021 07:15PM by thedisgruntledpatient

I too was concerned about gadolinium, but I've done a lot of research and, while it has been shown to deposit in the brain of some individuals, it hasn't been shown to cause cancer or some other malady. As a Radiology Today article says, “if there is an effect, it must be mild, given that 'upward of 400 million doses of gadolinium agents have been given since we started using them almost 30 years ago, and if there was something toxic, we would have seen it by now.'"

I did read in the EU they've restricted the use of certain linear types of gadolinium because they deposit more often, but not the macrocyclic kind. I plan to ask for the macrocyclic for my next MRI.

Meanwhile, mammography has been proven to have drawbacks, namely that it can induce breast cancer in certain individuals (Google: Breast Cancer Induced by X-Ray Mammography Screening? A Review Based on Recent Understanding of Low-Dose Radiobiology). Dense breast tissue also absorbs more radiation than fatty tissue.

Given the radiation exposure of a mammo, and the greater sensitivity of an MRI, especially with its ability to see more in dense tissue, I'd much rather have an MRI than a mammogram. I too have heard good things about SonoCine ABUS, but statistically MRI is better than US for finding abnormalities.

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Mar 15, 2021 05:52PM light1candle wrote:

Hi thedisgruntledpatient. I appreciate the reminder that most of the preventative imaging has some risk attached to it, even mammograms. I still feel comfortable with forgoing the MRI’s for the moment, though the imaging itself may be the most detailed and complete that I have had. There is another factor with the MRI contrast that I think it is important to consider - one’s renal function. It is the kidneys that help to filter and excrete the gadolinium contrast. At my hospital they actually do a blood test before your MRI to be sure you have adequate kidney function, and they won’t do the contrast MRI if you don’t. In my own case, I have impaired kidney function, though not so much as to exclude me from the test. But enough that I think that it is another reason to be wary of it, unless I really need it. For now, I am more comfortable with the mammogram alternating with a SonoCine ultrasound

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Apr 16, 2021 08:17PM ---faithhopelove--- wrote:

Thank you light1candle. I found your information very helpful regarding the AWBUS. I have already mentioned it to my provider. Just not sure any place near me does it. I appreciate you letting me know.


Dx 4/2011, LCIS, Right Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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