Monitoring of LCIS
Comments
-
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
-
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
-
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.
-
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
-
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
-
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. http://caonline.amcancersoc.org/cgi/content/full/57/2/75
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.) http://community.breastcancer.org/topic/47/conversation/653988?page=1#idx_25
My gyn said a childhood friend of hers who got bc was unhappy with her consultation at this same institution.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team