BRCA Gene Mutations and male BC

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GreenHeron
GreenHeron Member Posts: 85
edited June 2014 in Male Breast Cancer

Hi gentlemen,

I am struck by the stress this all puts on our relationships, an how your stories mirror those of the women on these boards.  Cracks get bigger, everything magnified, lines crossed, people over the edge.  Everything gets more intense.  I am SO glad you have good support systems.  Mine saved me as much as the chemo.

That said, I have a question, which you may or may not be able or willing to answer...

I was tested and found to have a BRCA2 mutation genetically, and I have two sons.  I was told that their risk of bc is doubled, although still low.  Have any of you had genetic testing done and know your status (and most importantly, feel comfortable sharing if you do?) Do you have family histories? I know that when they are of age, I will tell them about the gene, but am looking to understand, both quantitatively and qualitatively, what to tell them.  They watched me go through treatment, so I want to get this right.  The gene came down through my Dad, but there was no family history there (predominantly male tree...).

Anyway,

Wishing you strength and peace,

Flashdif

Comments

  • Larry44
    Larry44 Member Posts: 53
    edited September 2007

    I have not had genetic testing done.  I have no children so the information would be of no value to me or to my doctors.    I researched and learned that men with an abnormal BRCA1 or BRCA2 gene  have about a 6% chance of getting bc during their lifetime.   I would not have a prophylactic mastectomy with only a 6% chance of getting bc and knowing that most bc caught early is successfully treated.

    I have been urging all men to do monthly self breast exams as any man can get bc.  Men are not screened for breast cancer during routine physicals.  Please don't worry about the possibility that your sons might someday get breast cancer, it is not very likely even if they have the abnormal genes. 

  • GreenHeron
    GreenHeron Member Posts: 85
    edited September 2007

    Gary,

    Thank you for your response.  I know that I would teach my kids, gene or not, to be proactive and check themselves and insistent with their doctors. 6% is not enough for me either, especially since none of the men in that family developed bc.  I would pray that if my children (now 11 and 14) grow up to have children, and the the genes are passed down, science will have made detection and treatment routine and easy.

    Not that living presently isn't a great gift, but I'd have preferred to learn the lesson in an easier manner!~

    Take care, wishing you health and joy,

    Flashdif

  • beth1225
    beth1225 Member Posts: 1,061
    edited September 2007

    Not to throw grease on the fire, but if you have any relatives at all, you might want them to know you had breast cancer if there is some kind of family history of bc, ovarian and/or prostate cancer.  My father had bc, as well as his mother, all of her sisters and two of his cousins.  We were all tested on that side of the family and are BRCA2+.  There is also an increased chance of BRCA 1 or 2 if there is an Ashkenazi Jewish background, even if it may have been great-grandparents.  There is an increased risk among African-Americans as well as people of Icelandic descent.  I have done a lot of looking into this and have found a lot of information at FORCE, www.facingourrisk.org, in dealing with the gene mutation.  If nothing else, maybe a consult with a genetic counselor is in order.

    I have one son of my own and my brother, who is also BRCA2+, has both a boy and a girl.  All of them are underage so we will wait until they are 18 at least to let them know about the inherent risks.  My cousins are also BRCA2+ so they have to make a decision with their kids. 

    I also thought I would mention that my uncle, again he is BRCA2+, gets a mammogram and exam at Fox Chase Cancer Center yearly.  Surveillance is the key.  I have done all of the prophy surgeries as well.

    Beth

  • GreenHeron
    GreenHeron Member Posts: 85
    edited September 2007

    Beth,

    I'm sorry if I wasn't clear.  I've done the genetics, done the surgeries, notified the cousins, sibs, and mother, the entire gambit. I did all that.   I just haven't told my boys, as 11 and 14 are too young to do anything about it anyway. And, as I have NO FAMILY HISTORY (it came down a predominantly male line with no cancers) I was trying to understand my boys' risk. 

    Today is my birthday, and I'm sooooooooooo grateful to be here.  Celebrate today, wherever you are, it is GOOD here.

    Flash

  • spear98
    spear98 Member Posts: 1
    edited January 2008

    I am a 53 yr old female and a 3 year survivor of breast cancer. My course of treatment was a mastectomy and a helacious bout of chemo. My question is I have a 14 year old grandson who has found a lump in his right breast. He is quite frightened. I have tried to reassure him, but I guess I need reassurance! I am going to attempt to get him to Childrens Hospital for a check up. What type of response should I expect? Will our fear kind of be blown off, or should I expect empathy and some tests to outrule that something is going on there. His mother has had cervical cancer. My mother and 2 sisters have had breast cancer. Although he is a boy, I know there is male breast cancer and do not want to blow this off, but will the doctors? Thank you for listening...EXTREMELY concerned Grandma in Tennessee

  • Larry44
    Larry44 Member Posts: 53
    edited January 2008

    Spear98,

    I was 59 when I discovered a lump in my breast. My primary care doctor took it seriously, as did the surgeon he referred me to, so I was diagnosed correctly quickly. I have read stories from other men who have had trouble getting correctly diagnosed. I have no way of predicting how the doctor your grandson will see will react.

    I think it is very unlikely that your grandson has breast cancer as it is rare in males of any age and very very rare for females at his age. I would get it checked out anyway as it is possible that it could be either breast cancer or some other condition which would require medical intervention.  Try not to worry until he is seen as it probably is nothing which requires treatment.

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited February 2008
  • lobear
    lobear Member Posts: 2
    edited May 2008

    Hi- My husband was tested years ago BRCA2 and we watched for colon and prostate with vigor-  He ends up with breast cancer stage 2-  I urge you to have  mamamograms and do self breast exam and get those kids tested when they are older but at puberty have them start checking themselves.  I think almost 40% of all male breast cancers are BRCAs and the numbers are increasing.  Anyother help let me know. Harriet

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008

    My dh's mom died from bc...is he at a greater risk?

  • Larry44
    Larry44 Member Posts: 53
    edited June 2008
    Laura,

    My understanding is that your dh would be at greater risk of getting breast cancer if he inherited genes from his mother which put him at higher risk than the average man. The genes are the abnormal brca1 and brca2 genes but I think they may have recently identified others. It would take some looking but the increased risk for a man with the abnormal brca genes is not anywhere near as high as it is in women. My mother and her mother had breast cancer but I've never been tested as I have no children. I would not even think about a prophylactic mastectomy even if I was shown to have the genes.

    I think that all men should do a monthly self breast exam as any man could get breast cancer and men are not screened for breast cancer during physical exams. Also it is more likely that a man would find a mass in his breast than women do because men don't have developed milk glands and ducts which can hide a mass.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Hi Larry - I forgot I posted this! A belated thanks for the response. I just watched a segment on World News Tonight about a man and his daughter. He found a breast lump that turned out to be malignant. Then, as a preventative measure his 32 yr old daughter went for a Mammogram. Unbelievable! It showed a malignancy as well! They did chemo together! It's good that they tell stories like that one...more men will become aware. Hope all is well with you.

  • donnatom
    donnatom Member Posts: 12
    edited October 2008

    I am a one year survivor of breast cancer and doing well. That is I was up until last month. My husband was also diagnosed with breast cancer. Only 1% of males get breast cancer and he was one of the unlucky ones. It is even on the same side as mine was. He has already had surgery and it has not spread to his lymph nodes. He has such a neat sense of humor. He told every body while he was in the hospital  "I caught breast cancer from my wife". Had a few laughs over that. Thursday he will meet with the oncologist to determine what treatment he will have. We hope for the best. He said I am beating "it" and he can, too. All you ladies tell you husbands to examine their breasts ocassionally. It can happen. 

    Tom and Donna

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Hi...

              Male breast cancer is a rare condition, accounting for only about 1% of all breast cancers. The American Cancer Society estimates that in 2008, about 1,990 new cases of breast cancer in men will be diagnosed, and that breast cancer will cause approximately 480 deaths in men (in comparison, over 40,000 women die of breast cancer each year). Breast cancer is 100 times more common in women than in men. Most cases of male breast cancer are detected in men between the ages of 60 and 70, although the condition can develop in men of any age. A man's lifetime risk of developing breast cancer is about one-tenth of 1%, or one in 1,000......

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2008

    I have not had genetic testing, though I am looking into that.  No family history, except for two maternal great-great aunts who were dx at about 90yo.  I'm trying to find a way to convince my 19yo that he needs to be vigilant about self exams.  He took my diagnosis not very well, I think he's still in denial about how serious this is.  I have been researching the connection between colon and breast cancer.  I have family history of colon cancer, paternal grandmother and maternal grandfather.  My son had polyps removed at 3-1/2yo.  Can anyone give me some hints or tips on talking to him and getting him to accept this.  I have a very positive, survival attitude about this, but reality has to be recognized, I'm so concerned that if I'm not around later, there is no one else to push this subject and he will ignore it (dad is very absent).  Also needs to be said, he is every bit of 19 believing that all life is about is work/school/friends/party.  Any advice would be greatly appreciated. 

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited November 2008

    Hi chelli,, My dad was dx with Stage II bc at approx. 62 years.. now we were told that our risk was low and not to do anything except what normal women do.. so for years I went to get my usual mamo and they were always clear.. then my daughter's primary care physician suggested that I be BRCA tested and so I did.. it was negative, but in order to get the BRCA test I went to a genetic counselor who suggested because of family history to get a breast MRI so I did and while I was waiting for the BRCA to come back I had a breast MRI that showed a suspisious lesion..  breast surgeon wasn't convinced that I needed a biopsy so he ran another mamo, a digital mamo, and a sonagram all were negative.. but I did have a biopsy and DCIS was found..  I have tried to get all the members of my (blood line) relatives to go their doc's and NONE of them have.  I have even given them a copy of the "map" that the genetic counselor worked up - still nothing.  I think it is denial but I do believe, for me, the genetic map said it all and I would suggest to you to have the genetic workup to allow the "map" for anyone in the family to see..  it certainly turned my head!!  BEst

  • ChrisBern
    ChrisBern Member Posts: 33
    edited January 2009

    Hi,

    I'm a man of 31 that have been diagnosed with BC 3 months ago. I will have the result of my BRCA gene test next week. My doctor told me that if I'm tested positive, bilateral mastectomy is highly recommended. He told me that my initial risk was only 6% but since I already had BC, then my risk of local recurrence is as high as a BRCA woman (between 60% and 80%).

    Shoul I listen his advice and move forward with the bilat mastectomy?

    Waiting for the result...

     Chris

  • markd
    markd Member Posts: 31
    edited January 2009

    Hi Chris

    Just wanted to say hi as being in the minority here its good to chat to other men now and again with this disease. Whilst my diagnosis was different I still had a mastectomy. Its been just over a year for me and I still am getting over the mental side of things. I pray you will be ok. Feel free to send me a private message if you ever want to chat.

    Im 38 yrs young and was lucky that it was found early and really want to see my kids become parents (8 and 5) so I intend to beat this in every way I can and I am sure that you will too. Let me know how your results went.

    For the treatment, go with what your doc advises and what you feel comfrtable with. Initially they were going to just cut my nipple off (I had blood and thats how it was found). This changed with surgeons advice to mast. Seemed overkill at the time but I worry a lot and so knowing all my breast tissue was gone helps me sleep better at night. There was no more BC in my breast so losing my nipple could have been ok but I would have always had the worry.

    Fingers crossed for you mate

    Mark

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    I am glad I read your posts. Thank you for informing us that the BRAC gene CAN be passed to our sons. I have a very rare form of it, only present in 12 families - mainly in the Venice, Italy area. My son was dx with Hodgkins Lymphoma about 18 months before I was Dx with BC. He finished his last chemo the day before I started my first one.  (He had 5 or 6 rounds of treatment -  20-25 individual chemo treatments over 2 years.) He knows I carry the gene and also understands men can also get BC, but I don't think he is aware that he is far more likely to get BC than other men.

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