Forum Discussion
Men Suffer Too
Well my father passed away with Male Breast Cancer 2 months ago and I was tested positive for BRCA 1. The most frustrating thing for myself and our family is the lack of awareness and promotion of Male Breast Cancer.
Men suffer no different to women in some cases it's harder for them as Breast Cancer is perceived as a women's only disease, and nearly all facilities cater for women.
As a male it can be difficult and embarrassing due to the lack of knowledge and understanding of the disease.
My father suffered not only with the Breast Cancer, the embarrassment of people not understanding, he had to also suffer knowing he had passed the BRCA 1 gene to myself and possibly to his grand daughters as much as we tried to tell him that we may never have known I had it and now have an awareness, he still could not accept that he had passed it on.
There is virtually no information for men on male breast cancer and very little public understanding and fund raising.
Which to me is surprising - men can carry the BRCA gene and pass this gene on to there children un be known to them.
There needs to be more education on male breast cancer and it effects on males and there family's. If there was more awareness in the public domain maybe we can save more lives!
The awareness for women is phenomenal but the males sit in the shadows unbeknown that most women who carry the BRCA gene may have inherited it from there fathers!
There needs to be more support and funding as men suffer just as much. Why not a Blue Ribbon Day?
14 Replies
My heart goes out to you. I lost my father 25 years ago, he was 55 years old and died 13 hours after surgery to remove his gall bladder, not at all expected and such a shock to all of us. Not related to cancer but I do know what it's like to lose a parent and you have lost both. Again you sound like a really nice bloke. Why do bad things have to happen to nice people!
Love back to you
Janey
- Thank you Janey, It's such a relief your son is ok. I am so overwhelmed by all your compassion and support with this topic. Our Fathers and sons need to understand that this is not only a women centric condition, if Dad and my brother and I were aware men can get breast cancer, Dad would possibly be alive today. Dad sat with a lump on his breast the size of a match box and showed us the lump and none of us were in any urgency to get him checked out as we just thought it was an abscess or something like that. Who ever thought he would have to have a full mastectomy and lymph nodes removed, later suffering with lymphoma, chemotherapy, radiation and hormone treatment but unfortunately all too late as it had spread to his lungs. If only we were aware that this could happen to Men, who had a genetic history Dad may be with us today. We were aware of the genetic history that can impact women with BRCA gene through breast Cancer campaigns but nothing has or was said how this can impact men! So any of you who have a Son or a Dad and have a genetic history of breast cancer or carry the BRCA gene please, please tell them my story. Love you all Craig
- Thanks Nellie, I really appreciate your feedback and kind thoughts you are all beautiful women and I wish you all well. I am taking on board all your advice and will try and get some support with this issue but it will be very difficult because Blokes don't think they can get Breast Cancer. I Believe if GP's for a start could advise men who have a genetic history should be referred for genetic testing. I know my father wasn't until it was too late and my GP didn't until he received the letter from Peter Mac! I'm not even sure if the testing is subsidised as I believe for men it can cost $1000's? The fact is it may only effect 125 men this year but if left as it is, obviously more children will be born carrying the BRCA gene and in turn more men will get Breast Cancer. I believe there are options if planning a family if you have the BRCA gene via IVF where the gene can be eliminated and not passed on to the next generations. Men need to be educated as there is so much male health issues linked to this. My fathers brother died 2 years ago with prostate cancer, he too was tested positive for BRCA 1 gene. Hence the impact study I am involved with Peter Mac regarding Male Prostate cancer and BRCA. Regards Craig
Hi Daina, Thank you for your kind words, yes I was aware of some of the information you have on your site regarding Male Breast Cancer, some a little out dated but still relevant. I also forgot to mention I am part of the impact study with Peter Mac regarding BRCA 1 in men and its relationship to male prostate cancer. Yes it's not only the 125 men that will be possibly have Breast Cancer it's the 100's that are unaware that they have BRCA gene and will or may have passed that to there children. I would love to be involve in any awareness campaign I can assist with. May I share one story with you during my fathers battle with Breast Cancer, during his treatment we had come across some situations where certain drugs were provided at no cost to women and not recognised for men who have Breast Cancer to the point that Peter Mac had to say he had bowel cancer instead of breast cancer so as we could get his injections subsidised. I am concerned no only for myself but other men that may have to deal with such situations when dealing with Breast Cancer. Kind Regards, Craig
Hi Craig,
I am really sorry to hear of the loss and struggles you and your family have been through, especially with the added burden of carrying the BRCA gene.
We know that this year there will be around 125 Australian Men diagnosed and we try to support these men through our website and resources. I am not sure if you have come across the Male breast cancer page on our website ( http://www.bcna.org.au/about-breast-cancer/male-breast-cancer ) there is some useful information and links off to other resources that you might like to have a look at.
We are also launching a Male breast cancer Fact sheet over the coming weeks and are are in the process of trying to establish an online support group (though this online network) for men dignosed with breast cancer.
If you would like to be involved please let me know as I think it's really important that we share your experience. You can call us on 1800 500 258 or email [email protected].
~DainaHi Craig,
I am really sorry to hear of the loss and struggles you and your family have been through, especially with the added burden of carrying the BRCA gene.
We know that this year there will be around 125 Australian Men diagnosed and we try to support these men through our website and resources. I am not sure if you have come across the Male breast cancer page on our website ( http://www.bcna.org.au/about-breast-cancer/male-breast-cancer ) there is some useful information and links off to other resources that you might like to have a look at.
We are also launching a Male breast cancer Fact sheet over the coming weeks and are are in the process of trying to establish an online support group (though this online network) for men dignosed with breast cancer.
If you would like to be involved please let me know as I think it's really important that we share your experience. You can call us on 1800 500 258 or email [email protected].
~Daina- Thank you all for your kind words and support with this issue. I feel strongly about this and more so sitting by my fathers side and watching him take his last breath, thinking that I too will have to discuss this issue with my teenage daughters when we feel the timing is right. And that I may have passed on to my daughters BRCA gene and can't help feel I may be responsible for something I had no control or knowledge of. Will my daughters understand? Will they think any less of me? Due to this lack of education and understanding that men, fathers can pass BRCA on to there children and have to face the responsibility of that, no different to a women. The percentages may be less but the grief and the effect on the family and friends can be the same.
- So sorry to hear about your dad and that you have tested positive to the BRCA gene.I agree with everything you say.Perhaps you could start a special group for men in your situation on this network?The pink lady is our Bcna symbol,maybe we need a little pink man symbol as well.Something to think about?The staff at Bcna are a wonderful group of women and you could ring or email them about your thoughts.Blog back here anytime for info,support or to vent your feelings. Tonya
- So sorry to hear about your dad and that you have tested positive to the BRCA gene.I agree with everything you say.Perhaps you could start a special group for men in your situation on this network?The pink lady is our Bcna symbol,maybe we need a little pink man symbol as well.Something to think about?The staff at Bcna are a wonderful group of women and you could ring or email them about your thoughts.Blog back here anytime for info,support or to vent your feelings. Tonya
