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Topic: Have any men had genetic testing for breast cancer?

Forum: Male Breast Cancer — For men who have been diagnosed or are at high risk.

Posted on: Feb 4, 2016 12:30PM

Moderators wrote:

We are looking to get stories from men who have had genetic testing. Have you ever had testing? If so, what were the results? Would you mind sharing your experience with us? If so, please send us a PM, or share it here!

Thanks so much!

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Feb 5, 2016 03:55AM Traveltext wrote:

What led you to do the testing?

My mum died age 41 of BC, so when I was diagnosed aged 64 I wanted to know if I had inherited a genetic predisposition which I could have passed to my daughter, who has a daughter.

What were your results, and what choices have you made based on the findings? 

A single BRCA1:c.135-62T>C sequence variant was detected in the BRCA1 gene. The clinical significance of this variant is unknown. 

Was payment an issue?

No, the government paid for the test.

Have you discussed these decisions with your family? 

Yes. My daughter has joined a regular screening program. My three brothers don't want to be tested. 

How did the results change you? 

Not at all.

What decisions where made based on the information? 

Since the result was ambivalent, no decisions could be made. 

What suggestions would you have for others?

Get tested if you have a family history of BC so that your kids, and their kids, are aware of their risks.

NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Feb 5, 2016 09:41PM oddducklady wrote:

My husband had genetic testing after first diagnosed in Feb 2014. I brought up the subject and pushed for the consult with the geneticist. Not sure if my husband was even aware of the possibility as he was still dealing with the shock of the diagnosis. I felt badly about doing so as I believe it gave him something else to worry about but I felt strongly it needed to be done for the sake of his daughter and granddaughter. Medicare and/or our insurance paid for it. The entire panel he had done was negative which was a relief so it didn't impact treatment decisions at all. I agree with Traveltext that it is important to get tested.

Traveltext- I think your answer was written out a lot better then mine! Good job.

Husband has MBC. Dx 2/12/2014, Stage IIIC, Grade 2, 13/24 nodes, ER+/PR+, HER2- Dx 2/12/2014, IDC, Stage IIIC, Grade 2, 13/24 nodes, ER+/PR+, HER2- Surgery 3/3/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 3/21/2014 AC Chemotherapy 6/7/2014 Abraxane (albumin-bound or nab-paclitaxel) Dx 9/25/2015, IDC, Right, Stage IV, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 10/12/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/11/2016 Lymph node removal: Right Hormonal Therapy 4/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Lymph nodes Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Feb 6, 2016 02:06AM Traveltext wrote:

Thanks ODL, but just copied it from my other post on a BCO thread asking for genetic testing stories.

Reading your husband's treatment history I can see he was diagnosed at the same time as me. Sorry to read about round 2 and I trust the recent surgery went well. Was hormone treatment offered the first time round?



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Feb 6, 2016 12:06PM oddducklady wrote:

Traveltext- My husband was started on Anastrazole after he completed radiation. I sure wasn't expecting the reoccurance, well, at least not so soon. Took us by surprise. I know for me I was just beginning to relax and breath, start looking forward and planning again. Sure not expecting for the MO to find a tumor in a lymph node on the opposite side. I have to feel lucky that cancer does not appear to be anywhere else so the MO keeps saying the outlook is good. It was hard to see him go through chemo again. He had so many serious complications the first time. Surgery went well but the drain was a pain (last time he had it for almost 8 weeks-this time it plugged up and needed to be removed so now we get to deal with that). Just the waiting to heal and start radiation. The plan is for him to start Tamoxifen after radiation. I see you are taking it. I'm hoping that the side effects are not too bad. You'll have to let me know what to expect! It sounds like you are doing well and I hope that continues!

Husband has MBC. Dx 2/12/2014, Stage IIIC, Grade 2, 13/24 nodes, ER+/PR+, HER2- Dx 2/12/2014, IDC, Stage IIIC, Grade 2, 13/24 nodes, ER+/PR+, HER2- Surgery 3/3/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 3/21/2014 AC Chemotherapy 6/7/2014 Abraxane (albumin-bound or nab-paclitaxel) Dx 9/25/2015, IDC, Right, Stage IV, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 10/12/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/11/2016 Lymph node removal: Right Hormonal Therapy 4/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Lymph nodes Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Feb 6, 2016 02:49PM Traveltext wrote:

It's great that the recurrence was confined to one node and I believe, like your MO, that the prognosis is very good. So start planning again!

I started on Tamoxifen after rads and have not experienced any side effects at all. In fact, I've never felt better.

NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Feb 10, 2016 05:01PM - edited Feb 10, 2016 05:06PM by myman

My husband diagnosed in 2013 and underwent extensive genetic testing due to rampant familial cancers. His mother passed away from breast cancer and his was the exact histology. He was tested for BRCA1, BRCA2, Lynch Syndrome, APC, BMPR1A, CDH1, MLH1, MSH2, MSH6, MUTYH, PMS2, PTEN, SMAD4, SKT11, & TP53.

Much to our suprise all tested normal. We were sure this was the smoking gun as to why a perfectly health young man would develop breast cancer. It makes me wonder if there are other genes that have not yet been identified. Its just so coincidental.





2013 - IDC, Stage 2/3, 2 matted nodes positive. Mastectomy, lymph node removal, Chemotherapy Dose Dense ACTG, radiation, tamoxifen
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Feb 10, 2016 06:13PM Traveltext wrote:

myman. That is strange, especially for a young guy. There are, however, many genetic variations that don't have a history attached to them, since genetic testing is a relatively new science.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Apr 7, 2016 11:17PM pops wrote:

Yah  My daughter did the  paperwork  and  set up the  appointments and  I just showed up.  No genetic factors were found.  I was exposed to all sorts of  bad chemicals

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Jun 2, 2016 06:30AM Charles_Pelkey wrote:

My uncle died of breast cancer. My father died of pancreatic cancer. When I was diagnosed with breast cancer, the alarm bells went off and I was tested. The result was that I am BRCA2 positive (specifically, the 8765delAG mutation).

Both of my kids - one son, one daughter - have asked to be tested, even before the recommended testing age of 25.

Charles F. Pelkey Dx 7/27/2011, IDC, 2cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- Surgery 8/3/2011 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Surgery 8/9/2011 Mastectomy: Left, Right Chemotherapy 9/7/2011 AC + T (Taxol) Hormonal Therapy 1/14/2012
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Jul 28, 2016 03:49PM - edited Jul 28, 2016 04:01PM by Fiddleman

There's virtually no history of any cancer in my family that I know of.  My grandfather (paternal) died of lung cancer in his 70's, but he was a heavy smoker all his life. A maternal aunt died of myelogenous leukemia in her 60's.  That's it. I'm still having the genetic workup.  I have no children, but my brother has 2 boys and a girl. One of the boys has 2 daughters.  I also have several female cousins. I doubt that my cancer was inherited, but if there is a smoking gun they should know, as it may affect them.  At the very least, it may give my oncologist more clues as to how to conduct my thearapy.  I'm also in a clinical trial for a Mammoprint genetic test for the tumor itself.

Results from neither, to my knowledge, have come back, but I see my oncologist next Thursday anyway.  I hope he has something to discuss.    I was exposed to cigarette smoke up to age 27 (7 years as a smoker, the rest as 2ndary).  I was a biology teacher (formaldehyde, xylene, benzene and other nasty chemicals), my father was an industrial worker (asbestos) and I spent summers in the sun (the shore and summer camp) before there were sunscreen products.  I've spent some time trying to figure out how I got this beast, berating myself for personal choices I made long ago.  But I've decided that's a rabbit hole I'm no longer entering.  It's not important (at least for myself) how I got this.  The important thing now is how do I fight it and beat it back into it's own rabbit hole.  Will post here again, once I get more information.

Dx 5/23/2016, IDC, Right, 2cm, Stage IIB, Grade 3, 3/22 nodes, ER+/PR+, HER2- Dx 10/11/2018, IDC, Right, Stage IV, metastasized to lungs/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 10/17/2018 Ibrance (palbociclib) Hormonal Therapy 10/17/2018 Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Surgery Lymph node removal: Right; Mastectomy: Right Chemotherapy CMF
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Jul 28, 2016 05:07PM Traveltext wrote:

Genetic factors make up around 10-15% of MaleBC cases if you are BRCA2 positive and quite a lot less for BRCA1. That leaves a huge percentage for "other" reasons, including, of course, environmental. Good to have the genetic test, though, since there are obviously people who would be interested in your result. My 43-year-old daughter has joined a regular screening program. My three brothers don't want to be tested. There's some more HERE on the new MaleBC site Rob and I have built. You will see a genetic survey there that might be something you could do. It's a Boston researcher and she's desperate to get more guys doing the survey. You're right though, there's only so much beating yourself about as to the causes, since you will likely never know for sure. Anyway, with good treatment, wou've got an excellent prognosis.



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Oct 22, 2016 05:05PM tymann7 wrote:

I was diagnosed in April of this year of having IDC, in talking about family history with my oncologist, he suggested I have a BRCA test preformed. My sister and two aunts were diagnosed with breast cancer, so this information put me in a higher than normal risk class.

I have a twenty six year old daughter and thinking I may be a carrier was more traumatic than being diagnosed myself.

The doctor tested both the BRCA1 and BRCA2 genes and I was ecstatic to find out that neither one had any clinically significant mutation!

WHEW !!

I had a right breast lumpectomy last Monday, and can say everything went well, mass was removed with margins, also sentinal nodes showed no sign of cancer.

Regardless of what my results were, I will still be overcautious about reoccurence, early detection is the key to success!

Dx 4/20/2016, IDC, Right, 4cm, Stage IA, Grade 1, 0/2 nodes Hormonal Therapy 4/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/17/2016
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Feb 3, 2017 09:50AM cliff wrote:

I had the dna test done when I was diagnosed with breast cancer, negative results, I am now a lot more comfortable that I will not pass down breast cancer. Good thing too, My daughter just gave us our first grand child.

Dx 3/16/2016, IDC, Left, 1cm, Stage IV, metastasized to bone, 2/21 nodes, ER+/PR-, HER2- Surgery 3/31/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 10, 2018 03:13PM topdubu wrote:

I have been BRCA tested-negative. Three of my six sisters have also had breast cancer--negative for them as well.

Dx 9/2003, DCIS, Right, 1cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- Dx 9/2006, DCIS, Right, Stage 0, Grade 1, ER+/PR+, HER2- Dx 11/2016, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Hormonal Therapy 3/18/2020 Faslodex (fulvestrant) Chemotherapy Radiation Therapy Radiation Therapy Chemotherapy Chemotherapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Mastectomy: Right Surgery Hormonal Therapy Arimidex (anastrozole) Targeted Therapy Ibrance (palbociclib)

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