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Topic: Monitoring of LCIS

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

Posted on: Feb 21, 2008 10:16PM

clredick wrote:

Hi, I was diagnosed with LCIS in 9/06. It was discovered after a breast reduction during routine pathology testing. All of my mammograms had been normal.  The surgeon who told me about it said it was nothing to worry about, but my PCP sent me to an oncologist. He seemed to think I should just "keep an eye on it"; but I told him that I wanted to take tamoxifen, so he prescribed it for me. The only followup they recommended was yearly mammograms (the one in 9/07 was fine). I just discovered this support group - some of the posts mentioned MRI's. I am wondering what kind of follow-up most people with LCIS have? Does it depend on whether or not you have any other problems?

Thanks,

Cheryl

Dx 9/6/2006, LCIS, Stage 0, 0/0 nodes
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Feb 22, 2008 05:09AM Peaches70 wrote:

If your LCIS had been discovered as part of a biopsy due to a suspicious mammogram, you probably would have had excisional biopsy, followed by: either close monitoring (which can mean nothing more than yearly mammo and clinical exam), medication (tamoxifen or Evista), or, in some cases, prophylactic mastectomies. The last is rare, usually the decision of the patient, and not always decided on right away.

I have had my last 3 mammos 6 months apart. That is somewhat unusual, but is based on my diagnosis last Jan., then another suspicious mammo in Aug. I just had another mammo. If nothing was found (I haven't seen the results yet), then I may go back to 1 year. It kind of depends on your comfort level and the advice of your doctor, based on your particular risk factors. If you do not have a breast specialist/surgeon, you might want to get one.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Feb 22, 2008 06:41AM lucky32 wrote:

Cheryl, I'm so sorry you had to join us. You will find a lot of support here. Like you, I started out seeing just my surgeon, who did not specialize in breast surgery (although she did a lot of it). She saw me every 6 months, with a mammo once a year. She also prescribed tamoxifen for me.

That was in 2001. As time went on, I began to think that I really needed a specialist, so I began researching and found a high-risk breast program at an NCI Comprehensive Cancer Center. I still go there, and I now have a yearly MRI in addition to the mammo. My oncologist is directing a research study, which I am also in, and we get some information that way, too.

I agree with Anne that you may want to see a breast specialist. You mentioned an oncologist, but you'll probably want to find a breast oncologist--someone who only sees BC patients. LCIS is not well-studied yet, and you want the most up-to-date doctors handling your care. My doc's PA told me that she thinks every LCIS patient needs to be seen at a university med. center, because that's where the research is done. Of course, this isn't possible for everyone, but I think it's worth it if you live close enough to a place that takes your insurance.

Here is a list, by state, of NCI-designated Comprehensive Cancer Centers:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

If you see one that might be a possibility for you, you can give them a call and ask if they have a high-risk breast cancer program. If they do, it would probably be worthwhile to talk to someone in that department to find out what they can offer.

Hope this helps--I wish you the best of luck.

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Feb 22, 2008 03:12PM awb wrote:

Cheryl-- for the first 3 years after my diagnosis with LCIS, I was monitered by yearly mammogram, took tamoxifen, did BSEs, was seen for CBEs 3 times a year (once by gyn; twice by oncologist).  I  did not feel comfortable with imaging studies only once every 12 months, so for the past year and a half I have been alternating MRIs with mammos every 6 months for closer surveillance. From the posts on this board, I think that is becoming more common.  It took me 3 years to convince my oncologist, since he feels that MRIs have too many false positives. But I told him I would rather take the chance of a false positive (actually, I've  already had some findings that they feel are benign but are watching closely--I go for another MRI and mammo in 3 weeks), then not have the MRI and risk missing something.  We have to be our own advocates--good for you for insisting on tamoxifen.  PM me if you'd like to talk.

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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Feb 22, 2008 11:58PM clredick wrote:

Thanks for the thoughtful and helpful replies. As it turns out there is a NCI cancer center in my area. I don't know if my insurance would pay for it, but I can always try to talk them into an outside referral since they got rid of their breast clinic.

Cheryl

Dx 9/6/2006, LCIS, Stage 0, 0/0 nodes
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Feb 23, 2008 02:57AM - edited Feb 23, 2008 11:09AM by leaf

I have LCIS and ALH, and went to an NCI certified cancer center (a major institution), and was told I should not get any MRIs for screening 'because I have too much scar tissue', not even a baseline.

The MRI guidelines from the ACS say that it has not been established whether or not LCIS patients should be screened with MRI. caonline.amcancersoc.org/cgi/c...

I have issues with the ACS statements about LCIS, including their sole reference for LCIS (the Port study), which I believe does not necessarily support their data. (see my previous rant if you are in for it.) community.breastcancer.org/top...

My gyn said a childhood friend of hers who got bc was unhappy with her consultation at this same institution.

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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