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Topic: ADH with ALH

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jan 25, 2008 02:41AM

missz wrote:

I had an excisional biopsy of a 1 cm mass in May. Not cancer but both ALH and ADH present. Recommended was a screening schedule of alternating mammos and MRIs every six months. My insurance company is refusing to cover the MRI. I am trying to find every avenue of what it means to have both- seems to definitely elevate risk. Any advice? My family history isn't too scary- but mom with colon cancer at 55 and grandmom with BC at 70. Insurance will cover me if I test positive for BRCA - but I truly believe that would be enormous trouble with insurance later.

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Jan 25, 2008 04:03AM - edited Jan 25, 2008 04:05AM by leaf

Yes, it does elevate risk, but the amount of risk may be difficult to assess.

I have LCIS, ALH, and DH ( the DH being without atypia), and a weak family history. Grandmom had postmenopausal bc, aunt (other side) had postmenopausal bc.

The ACS recommendations for MRI are in this article. caonline.amcancersoc.org/cgi/c...
This is their recommendations
Insufficient Evidence to Recommend for or Against MRI Screening
Lifetime risk 15–20%, as defined by BRCAPRO or other models that are largely dependent on family history
Lobular carcinoma in situ (LCIS) or atypical lobular hyperplasia (ALH)
Atypical ductal hyperplasia (ADH)
Heterogeneously or extremely dense breast on mammography
Women with a personal history of breast cancer, including ductal carcinoma in situ (DCIS)

This is probably why your insurance company is refusing.If you want to find some information about the risk of bc in a study, you may find this interesting.
community.breastcancer.org/top...

It is the SOLE reference given in the ACS paper about MRI screening.

Note that at Sloan Kettering, even for women with LCIS, which almost certainly imposes a higher risk for bc than women with atypia only, the monitoring is yearly mammos and biannual clinical exams.

BTW, I went for genetic COUNSELING (not testing), and she opined that my risk for BRCA was about 2%, which is about the risk of an average Ashkenazi Jewish woman.

As you see from the conversation, I was told I shouldn't have MRI even as a baseline from a major university due to too much scar tissue.

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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Jan 25, 2008 06:28AM cayenneblue32 wrote:

My sister was just diagnosed with ALH, and because of the fact that I have bc, they will be doing the screening your doctor recommends (Mammograms and MRI's, alternating every six months) I don't believe her insurance questioned it, but maybe that's because of my diagnosis.

From what I've read, and what they have told her, and because of the ALH and my diagnosis, her chance of developing bc is 45% for lifetime risk! Definitely something that an insurance company should pay to monitor.....

I'd see if your doctor can intervene at all - for you to have both ALH and ADH, I would think that would certainly raise your risk, and need to be monitored. (and I am a strong supporter of MRI's, since my second lump was only found on an MRI (which wasn't even recommended by my doctors), and not seen on the mammogram I had just had two months prior)

Theresa 

Dx 3/24/2006, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Jan 26, 2008 12:27PM missz wrote:

Thanks ladies! My doc went to war and got it approved. Love him.

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Jan 26, 2008 12:35PM cayenneblue32 wrote:

Excellent!!

Good luck and I'll be sending CLEAR vibes your way!!  Let us know when you'll be having your scan so we can be there "virtually" with you!

Theresa 

Dx 3/24/2006, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Jan 26, 2008 01:40PM awb wrote:


missj----ADH and ALH are both precancerous conditions;  they are said to raise your risk by 4 to 5x, or about a 20 to 25% risk.  (I don't think it is raised any further by having both conditions rather than just one or the other).   Most often,  biannual breast exams and yearly mammos are the recommendation, but some docs are now starting to also recommend tamoxifen for prevention of an invasive bc in the future. (depending on any other risk factors that you may or may not have).  You're lucky to have had MRI recommended; I have  a much higher risk (LCIS--8 to 10x--and mom had bc) and it took me nearly 3 years to get my oncologist on board with MRIs.  I've had no problems with insurance coverage, but I'm sure that's because of the elevated  combined risk.
 Talk to your doctor about your overall risk and the risks and benefits of preventative meds.  The good news is you now you know ahead of time and can be vigilant and proactive.
"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 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jan 28, 2008 12:18PM missz wrote:

Screening is tomorrow morning. Crossed fingers.

I found studies indicating that both conditions did elevate risk, but others were inconclusive. I will just keep a close watch on the ta-tas.  I am not taking tamoxifen- too many side effects and I want to get pregnant soon.

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Jan 28, 2008 06:48PM Peaches70 wrote:

The other factor in whether MRI may be recommended is density. If you have very dense breasts, MRI is often used.

Dx 1/25/2007, LCIS, Stage 0
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Feb 3, 2008 12:00AM missz wrote:

Clear!! Thank G-d. Thanks everyone......

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Feb 3, 2008 03:25PM awb wrote:

that's wonderful news! Just remember to keep up with your breast exams and mammos.

"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 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Feb 5, 2008 07:28AM cayenneblue32 wrote:

Wonderful news!!

Make sure they test you at least yearly!  Like I wrote in my message above, my sister who tested positive for ALH has been told by two separate doctors that her lifetime risk (with my history thrown in) is 45%.......  

Theresa 

Dx 3/24/2006, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-

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