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Topic: High risk - differing of opinions

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

Posted on: Mar 15, 2018 12:42AM

heidibear wrote:

Hello.  I am 40 yrs old & was told that I have ADH after an excisional biopsy (grouped calcifications on first mammogram.)  The breast surgeon in the area is on sabbatical so a general surgeon completed the procedure.  He strongly recommended tamoxifen & stated pretty much all the factors I found in my research on this great website (ie 4 to 5 times risk, more of increase due to my age, etc) & also advised my next mammogram would not have to be for another year.  He also told me I have a 50/50 chance of developing breast cancer - which appeared to be more of a shot in the dark.  I also knew from my research that there are risks with tamoxifen so I asked to be referred to an oncologist.  I had that appointment yesterday.  Ultimately, after using a risk calculator, she did not recommend tamoxifen & advised that I am actually low risk with a .6% chance for developing breast cancer within the next 5 yrs & 1% point lower than general population for lifetime risk even considering the ADH.  Next mammogram recommended in a year.  I have an incomplete family history, but the MO did not seem to be concerned about that.  My mom had a benign biopsy in 2005 (early 50's at time) & has not been back for another mammogram since - I have been getting on her about it & I think she is afraid to have one now with everything I am going through.  My grandmother's sister had breast cancer & there have been other cancers on my mom's side of the family.  My dad's parents died when he was young (both heart attacks I believe) & the 7 kids were dispersed across the country with relatives & did not keep in touch.  I have been really struggling with this - my husband thinks I should trust the expert (MO) & not worry.  He also recommended a second opinion if it would keep my mind at ease.  To compound things, by husband was diagnosed with melanoma in January & started immunotherapy treatments last month - needless to say the stress has been unbearable at some points.  We have an 8 & soon to be 12 year old.  My daughter (almost 12 yr old) point blank asked me if I had cancer after I had my excisional biopsy (due to her father's recent sentinel node biopsies & finding out he has cancer.)  I have been honest with her & trying not to give too many details that will make her worry even more.  Has anyone experienced this?  I am at a loss.

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Mar 15, 2018 02:36AM - edited Mar 15, 2018 02:36AM by Moderators

heidibear, welcome to! We understand the decision it's not easy... so we hope you get some help from other members soon who have gone through similar experiences. In the mean time you can read much more about Getting a Second Opinion at the main site, including why, where and when to get them, and what to expect.

Best wishes, and let us know how you're doing!

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Mar 15, 2018 03:03AM - edited Mar 15, 2018 03:22AM by farmerlucy

heidibear - Gosh, when it rains it pours, huh. Sorry about all the angst in your family right now. Re: ADH. When ADH was found along with ALH my breast surgeon sent me to a renowned genetic counselor. That appointment was amazing and insightful. I would suggest that you try to get an appointment with one in your area. Conversely, when my onc recommended full panel genetic testing, and my insurance would not pay for it I self paid $249 for the Color Genomics test. While the actual test results were helpful (no variants found) the best part was that my $249 included a phone conversation with a genetic counselor. My biggest worry right now is my daughter's risk. The CG counselor was able to recommended a university hospital and a genetic counselor in my daughter's area.

I think for your general surgeon to tell you that you have a 50/50 risk is a bit aggressive. From what I've learned ADH on it's own does convey a slightly higher risk, but not that high. I hope you can get some answers soon.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Mar 28, 2018 12:52PM heidibear wrote:

Sorry for the late response, but thank you for the reply.  I am pursuing a referral to a genetic counselor.  I appreciate the information. 

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Mar 29, 2018 05:06AM mustlovepoodles wrote:

I am suspicious of your doctor's 50% prediction. BRCA 1 & 2 mutations convey a 40-80% risk; PALB2 suggests a 35- 58% risk, depending on family history. Those are all pretty rare. I have never seen ANY research that says ADH raises your risk anywhere close to 50%.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/19/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/3/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Jul 9, 2018 12:01PM - edited Jul 9, 2018 12:04PM by Lea7777

Mayo did a study, replicated by Vanderbilt, published in The New England Journal of Medicine Dec 31, 2014


"The researchers were able to give an even more accurate estimate of risk by incorporating information from a patient's pathology specimen. They found that as the extent of atypia in a biopsy increased, as measured by the number of separate atypia lesions or foci, so did the woman's risk of developing breast cancer. For example, at 25 years post-biopsy, 47 percent women with three or more foci of atypia in the biopsy had developed breast cancer, compared to only 24 percent of women with one focus."

"Instead of relying on a statistical model, our study provides actual data of breast cancer cases that occurred in a population of women with atypia. These absolute risk data are preferable to a hypothetical model," says Amy Degnim, M.D., co-lead author and a breast surgeon at Mayo Clinic."

"Based on these results, the research team recommends that women with atypical hyperplasia be recognized as having significantly increased lifetime risk of breast cancer and thus be candidates for screening MRI. Moreover, anti-estrogen medications like tamoxifen have already been tested in clinical trials in women with atypia and shown to lower their risk of breast cancer by 50 percent or more."

I have a Mayo appt. several months from now and I want to find out more about this study. This study also indicates it may be valuable to ask how many foci are found in the biopsy.

When I originally read the article, linked above, it was formatted differently and included the graph shown here. Now that graph is absent in the linked article.

These #s are higher than what I had expected and the level of risk definitely has my attention.

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Oct 24, 2018 05:24AM cattledoglv wrote:

I wonder if it matters if you have ADH in both breasts? I’ve read this study as well and it seems the most comprehensive. My first dr put me at the same risk as anyone else in the population using her silly computer calculations which I accepted initially. Those vastly underestimate risks for women.She was just a general surgeon tho. Breast drs up to date on this info seem to take it much more serious.

ADH Rt 8/17 ADH Left 5/18 Surgery 8/24/2017 Lumpectomy: Right Surgery 5/18/2018 Lumpectomy Surgery 12/26/2018 Lymph node removal: Left, Underarm/Axillary

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