HER2 Support Group Forums - View Single Post - more attention to subtypes of male breast cancer

Soccermom · 05-23-2009, 08:37 PM

Duga and Believe,
at the FORCE conference last week there was a session specifically for men who are BRCA+ (not sure of Mighty Oaks status)...(male BC is a HUGE red flag for having a BRCA mutation)
"
Session: BRCA in Men
Speaker: Wendy Rubinstein, MD
This 80-minute concurrent session will focus on the cancer risks and risk
management recommendations for men who carry a BRCA mutation.

Dr. Rubinstein will discuss:

lifetime and age-specific cancer risks for men with BRCA 1 and BRCA 2
current risk-management recommendations for men with BRCA mutations
emerging information and clinical trials looking at cancer risks in male BRCA carriers
reasons why men might want to know their BRCA status

This session is appropriate for:

Men who carry a BRCA mutation
Parents/relatives/loved ones of men who carry a BRCA mutation
Patient advocates, support group facilitators, and people who work with men
with a BRCA mutation
Health care providers who provide care to people with BRCA mutations
Social workers/mental health care professionals who treat people with BRCA mutations"

When the session becomes available online I will post the link . Hopefully there will be some good info for you both!
_________________________
This message is from a dear friend of mine who is BRCA1+

"To all of you who have male loved ones who are BRCA+....please try to encourage them to have clinical exams and to learn how to do Self Breast Exams. I find that I do not do a Self Breast Exam proficiently so I rely on a wonderful woman at UCLA's high-risk center by the name of Sherry Goldman.

Yes, I have seen the 6% figures for BRCA2+ men(and slightly lower for BRCA1+ men) but, perhaps due to my age( I am 65 year old BRCA1(187delAG)+ male) I was told recently by a oncologist I deeply respect that my risk for breast cancer was approximately the risk of a non high-risk woman, or roughly one out of eight or 12%.

What is important, in my view, is that many men are unwilling to see a Certified Genetic Counselor and consider testing...If they do test and are positive, many men, from what I have been told by mammographers/oncologists I respect do not do any surveillance despite their BRCA+ status.

I have written this before but there are a lot of new folks on FORCE these days so it bares repeating, I think. I had a clinical breast exam at UCSF several years ago done by a nurse by the name of Suzie Eder who is a marvelous professional, in my opinion. She told me "Steve, it breaks my heart that men come in with a growth the size of a golf ball in their breast and it is often Stage III/IV metastatic disease. I ask them how long they have had it and often I am told 'several years..it seems to be getting bigger..do you think it is anything to be concerned about?'..."

So, again, for all of you who have male loved ones who may be at risk...please continue to speak to them about getting tested and if they are positive please encourage them to do surveillance...and for you guys out there who may be reading this...please, please do the surveillance...yes, I know it may be awkward sitting in a waiting room filled with women and/or going through the exam itself but the surveillance may very well save your life..

also, prostate surveillance is extremely important for all men but especially BRCA+ men..recent studies have shown that Aggressive Prostate Cancer may be a hallmark of BRCA2+ guys and also BRCA1(187delAG)..which is the mutation I share with my daughter.

you will all be happy to know I am off my soapbox..but it is really important.

all the best,

Steve "
__________________________________________________ __

Hugs,
Marcia

05-23-2009, 08:37 PM	#6
Soccermom Senior Member Join Date: Jun 2006 Location: Bradenton,FL Posts: 977	Duga and Believe, at the FORCE conference last week there was a session specifically for men who are BRCA+ (not sure of Mighty Oaks status)...(male BC is a HUGE red flag for having a BRCA mutation) " Session: BRCA in Men Speaker: Wendy Rubinstein, MD This 80-minute concurrent session will focus on the cancer risks and risk management recommendations for men who carry a BRCA mutation. Dr. Rubinstein will discuss: lifetime and age-specific cancer risks for men with BRCA 1 and BRCA 2 current risk-management recommendations for men with BRCA mutations emerging information and clinical trials looking at cancer risks in male BRCA carriers reasons why men might want to know their BRCA status This session is appropriate for: Men who carry a BRCA mutation Parents/relatives/loved ones of men who carry a BRCA mutation Patient advocates, support group facilitators, and people who work with men with a BRCA mutation Health care providers who provide care to people with BRCA mutations Social workers/mental health care professionals who treat people with BRCA mutations" When the session becomes available online I will post the link . Hopefully there will be some good info for you both! _________________________ This message is from a dear friend of mine who is BRCA1+ "To all of you who have male loved ones who are BRCA+....please try to encourage them to have clinical exams and to learn how to do Self Breast Exams. I find that I do not do a Self Breast Exam proficiently so I rely on a wonderful woman at UCLA's high-risk center by the name of Sherry Goldman. Yes, I have seen the 6% figures for BRCA2+ men(and slightly lower for BRCA1+ men) but, perhaps due to my age( I am 65 year old BRCA1(187delAG)+ male) I was told recently by a oncologist I deeply respect that my risk for breast cancer was approximately the risk of a non high-risk woman, or roughly one out of eight or 12%. What is important, in my view, is that many men are unwilling to see a Certified Genetic Counselor and consider testing...If they do test and are positive, many men, from what I have been told by mammographers/oncologists I respect do not do any surveillance despite their BRCA+ status. I have written this before but there are a lot of new folks on FORCE these days so it bares repeating, I think. I had a clinical breast exam at UCSF several years ago done by a nurse by the name of Suzie Eder who is a marvelous professional, in my opinion. She told me "Steve, it breaks my heart that men come in with a growth the size of a golf ball in their breast and it is often Stage III/IV metastatic disease. I ask them how long they have had it and often I am told 'several years..it seems to be getting bigger..do you think it is anything to be concerned about?'..." So, again, for all of you who have male loved ones who may be at risk...please continue to speak to them about getting tested and if they are positive please encourage them to do surveillance...and for you guys out there who may be reading this...please, please do the surveillance...yes, I know it may be awkward sitting in a waiting room filled with women and/or going through the exam itself but the surveillance may very well save your life.. also, prostate surveillance is extremely important for all men but especially BRCA+ men..recent studies have shown that Aggressive Prostate Cancer may be a hallmark of BRCA2+ guys and also BRCA1(187delAG)..which is the mutation I share with my daughter. you will all be happy to know I am off my soapbox..but it is really important. all the best, Steve " __________________________________________________ __ Hugs, Marcia Last edited by Soccermom; 05-23-2009 at 08:40 PM..