Topic: ATM, the new BRCA?

Forum: Genetic Testing — ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Apr 13, 2016 08:13AM

Posted on: Apr 13, 2016 08:13AM

greenmeadow wrote:

I was diagnosed with DCIS in February 2015. No breast cancer in my family, but multiple other ones, prostate, lungs, pancreas (father), bladder, throat. My genetic testing came back with this high risk for breast cancer due to a fairly new discovered gene mutation called ATM. Same gene is responsible with pancreatic cancer. I understand from my doctors that they don't know a lot about it so far but they treat it as BRCA. Anybody else sharing the same mutation?

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Apr 13, 2016 08:32AM melissadallas wrote:

Here's a thread:

There are some other discussions too. Try the "search" function on the menu

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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Jul 20, 2016 07:06AM Lovebird65 wrote:

I just got back genetic testing positive for ATM gene. Am waiting to meet with genetic counselor and researching like crazy. Will post as I get info.

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Jul 30, 2016 07:54PM meredamon wrote:

My testing came back with the ATM result as well. Haven't met with my Dr as of yet but am anxious because there doesn't seem to be much info out there about it. What I have read has suggested that 1 in 300,000 have an ATM variant. I am 58. My mother died of breast cancer at age 62 from an "aggressive type". Her cancer was found after a routine mamo at age 60. I am scheduled for mamo next week because of symptoms I had a couple of months ago but have always had annual mamos since age 40. Now I'm reading that radiation isn't tolerated well if you have the ATM???? Worried.

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Aug 8, 2016 09:50AM Novmoon wrote:

i was diagnosed with left IDC and was supposed to have lumpectomy and radiation. Surgeon advised genetic testing and I was told the ATM was positive and could not have radiation. Ended up having bilateral mastectomies with tissue expanders for reconstruction. Just saw oncologist and awaiting test results to determine if chemo is warranted.

Dx 5/2016, IDC, Left, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 7/7/2016 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 10/1/2016 Femara (letrozole)
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Aug 28, 2016 02:52PM meredamon wrote:

Mammogram and ultra sound was normal. Understanding that the ATM variant is being studied but is not considered the new BRACA. I spoke with a person at the testing center. They would test other family members for the ATM variant, without charge, if were to develop cancer. My children would have a 50/50 chance of also having the ATM variant.

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Oct 12, 2016 07:06AM Summermac wrote:


I'm new here. I'm 28 and my genetic testing came back positive for the ATM Gene Mutation. I work at a state of the art cancer center in Jacksonville, Fl and have met with some of our top oncologists! My choices have really come down to mammo/MRI every 6 months for the rest of my life and then also discussed prophylactic bilat mastectomy - which is what I am doing.

The guidelines for the ATM gene mutation is ever evolving, but depending on where you go, there are educated people on the mutation. It's still new, so the guidelines aren't 100% clear.

Best of luck to you!

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Feb 26, 2017 10:06PM sftlm wrote:

I too have tested positive for the ATM gene mutation - found out two weeks ago. I never gave much thought to cancer before....just thought that most people encountered some type, you treated it and then moved on. I had a very small DCIS at 53 with a lumpectomy. Two years later my brother (age 54) fell and broke a rib and it was discovered that he had metastasized prostate cancer throughout his body. He died two months later. As I began looking back at my family I remembered that the same thing happened to my Uncle who passed at 54 - same thing he woke up blind one day and found out that he had metastatic prostate cancer. I started looking back and saw that all of my family members ( although my Mother passed from Parkinson's Lewy Bodies) had either breast or prostate cancer, with the only other living relative being an Uncle who is in treatment for prostate cancer.

After my brother passed I thought I had really overlooked the gift I was given when with the discovery of the earlier cancer and began to look for some one to assist me with more testing. Finally after a year I found Dr who said I should have an MRI. The MRI found one suspicious "bubble" on a lymph node. After biopsy, the surgeon notified me that my previous pathology report show inconclusive clear margins. He recommended a mastectomy - for some reason I asked for a double. During surgery they found 10 cancerous lymph nodes and two additional Lobular tumors.

Just got over a Pseudomonas infection with TE removed and now I have seroma in my left armpit 3/4 the size of a golf ball.

I feel like I am living a Clint Eastwood movie - "How lucky do you feel?"

Sorry so long - I needed to vent...

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Feb 27, 2017 05:13PM traveltext wrote:

That's an interesting family history of cancers sftim. Prostate and breast cancer do go together and family members with one will often find a relative with the other. My mum died young with bc, and I got it three years ago aged 63. Last year I got prostate cancer. Fortunately, I've been well treated for both and am NED.

My genetic test showed I had an unknown variation of the BRCA gene. This ambivalent result means everyone in the family has to remain alert for cancers, but not necessarily take prophalactic treatment.

Chemotherapy 3/6/2014 Other Chemotherapy 3/6/2014 AC + T (Taxotere) Chemotherapy 3/10/2014 FAC Hormonal Therapy 4/16/2014 Surgery 7/1/2014 Lymph node removal (Left); Mastectomy (Left) Surgery 7/23/2014 Lymph node removal (Left); Mastectomy (Left) Radiation Therapy 8/8/2014 Whole breast: Left breast, Lymph nodes Radiation Therapy 8/22/2014 Whole breast: Left breast, Chest wall, Lymph nodes Hormonal Therapy 10/24/2014 Liquid tamoxifen (Soltamox) Hormonal Therapy 10/30/2014 Hormonal Therapy 11/1/2014 Surgery 5/8/2022 Radiation Therapy Surgery Surgery Surgery Hormonal Therapy Surgery
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Mar 1, 2017 05:35AM CassieS wrote:

I also have the ATM gene mutation. Diagnosed with bilateral bc at 32. Double mastectomy and chemo. Finished chemo in 2016 and doing well now! Seems hard to find out what is appropriate for follow-up monitoring, however, especially given the gene mutation. I haven't ever had a full body scan/PET scan or anything, but do go in for checkups every 4 months. What protocol are the rest of you following?

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Mar 1, 2017 08:19AM shycat wrote:

I have "variants of unknown significance" for both ATM and BARD1. My ATM variant was the first time that particular variant was reported in the database so no one knows what to make of it. My MO offered additional screening for pancreatic cancer (e.g., ultrasounds every six months), but I passed. Que sera, sera.

shy Dx 1/7/2014, IBC, Left, Stage IIIC, Grade 3, ER+/PR-, HER2-, FISHISHCISH Chemotherapy 1/16/2014 AC + T (Taxol) Surgery 6/2/2014 Mastectomy; Mastectomy (Left); Mastectomy (Right) Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Radiation Therapy 7/14/2014 Breast, Lymph nodes Hormonal Therapy 3/27/2015 Aromasin (exemestane)

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