advice on genetic testing

I  was refered to the genetic dept at our local hospital when i was diagnosed back at the end of 2012,  my sister, her 2 grown daughters and my 2 teenage daughters all wanted to know if we carry the gene as breast cancer runs in our family on my mums side, having lost our mum to it and a cousin, and living aunt has had it both sides, and another cousin also, we went for the appt and organised testing and was told they will get back to us, we gave them the family medical history etc and nearly 2 years later i am still waiting, i have contacted them several times with no response so stuffed if i know, i was told by someone my sister knows that works at the hospital they dont have the funding for the testing and that would be why it has not been done, looks like you need to be living in a major city to get this service.  So we are still in the dark as to wether we have the cancer gene or not.

I  was refered to the genetic dept at our local hospital when i was diagnosed back at the end of 2012,  my sister, her 2 grown daughters and my 2 teenage daughters all wanted to know if we carry the gene as breast cancer runs in our family on my mums side, having lost our mum to it and a cousin, and living aunt has had it both sides, and another cousin also, we went for the appt and organised testing and was told they will get back to us, we gave them the family medical history etc and nearly 2 years later i am still waiting, i have contacted them several times with no response so stuffed if i know, i was told by someone my sister knows that works at the hospital they dont have the funding for the testing and that would be why it has not been done, looks like you need to be living in a major city to get this service.  So we are still in the dark as to wether we have the cancer gene or not.

thanks for that i appreciate any advice or comments i am still not sure what to do , it is a big decision, and it isnt only me it effects as you also stated.

I  thought having the Genetic test was going to be helpfull to myself and family. I qualified as I had an Aunt and Cousin who had also gone through BC. My sister said "  what do we all do if it comes back positive?" I hadn't thought of the impact it would had have on my mother, two sisters, three neices and my own daughter (11) . After being told the optinons I made the decison that It is only another breast, and I dont need my ovaries anymore if it came to it, but Luckily it  came back negative and we didnt have to worry any further. I hope you are as lucky.  

Hello Fran

It sounds as if you really need some experienced ladies to answer your queries but as it is a fine weekend there may not be a lot of ladies on-line.  Don't be discouraged, they will soon be with you to share wonderful knowledge and advice.

My suggestion is to firstly get your own issues sorted then think about what the best thing is for your family.  You never know, once you begin treatment you may find someone in the family comes out and talks to you about it and helps with the decision.

I like your comment "all the babble" - this seems like typical of a counsellor in any field.  Good at the talking.  I suggest you sit down and write a list of questions then sit with your oncologist and go through them.

My mastectomy was done at the end of August.  Yesterday I took a list of 18 (yes, 18) questions to my oncologist and she was able to answer them in simple English.  She has given me the power to make decisions for myself and my family.

If you no longer need your ovaries and breasts for the 'normal' use then don't worry about losing them.  Better gone, I would say.  As I have said to others, if you trust your specialist then lean on them for the best possible advice - if you are uncertain then ask to be referred elsewhere.

I am so sorry the counsellor made you confused and scared.  You do not need that.

Try to relax and not think about too much too soon.  The cancer questions and answers can do our brains in a bit as we all seem to be overloaded with information at the beginning.  Please give yourself the luxury of time.

Keep checking on-line as some wonderful lady will soon be here to help and support you.

I am thinking of you.   Kind regards

Summer

Hello Fran

It sounds as if you really need some experienced ladies to answer your queries but as it is a fine weekend there may not be a lot of ladies on-line.  Don't be discouraged, they will soon be with you to share wonderful knowledge and advice.

My suggestion is to firstly get your own issues sorted then think about what the best thing is for your family.  You never know, once you begin treatment you may find someone in the family comes out and talks to you about it and helps with the decision.

I like your comment "all the babble" - this seems like typical of a counsellor in any field.  Good at the talking.  I suggest you sit down and write a list of questions then sit with your oncologist and go through them.

My mastectomy was done at the end of August.  Yesterday I took a list of 18 (yes, 18) questions to my oncologist and she was able to answer them in simple English.  She has given me the power to make decisions for myself and my family.

If you no longer need your ovaries and breasts for the 'normal' use then don't worry about losing them.  Better gone, I would say.  As I have said to others, if you trust your specialist then lean on them for the best possible advice - if you are uncertain then ask to be referred elsewhere.

I am so sorry the counsellor made you confused and scared.  You do not need that.

Try to relax and not think about too much too soon.  The cancer questions and answers can do our brains in a bit as we all seem to be overloaded with information at the beginning.  Please give yourself the luxury of time.

Keep checking on-line as some wonderful lady will soon be here to help and support you.

I am thinking of you.   Kind regards

Summer

Hello Fran

It sounds as if you really need some experienced ladies to answer your queries but as it is a fine weekend there may not be a lot of ladies on-line.  Don't be discouraged, they will soon be with you to share wonderful knowledge and advice.

My suggestion is to firstly get your own issues sorted then think about what the best thing is for your family.  You never know, once you begin treatment you may find someone in the family comes out and talks to you about it and helps with the decision.

I like your comment "all the babble" - this seems like typical of a counsellor in any field.  Good at the talking.  I suggest you sit down and write a list of questions then sit with your oncologist and go through them.

My mastectomy was done at the end of August.  Yesterday I took a list of 18 (yes, 18) questions to my oncologist and she was able to answer them in simple English.  She has given me the power to make decisions for myself and my family.

If you no longer need your ovaries and breasts for the 'normal' use then don't worry about losing them.  Better gone, I would say.  As I have said to others, if you trust your specialist then lean on them for the best possible advice - if you are uncertain then ask to be referred elsewhere.

I am so sorry the counsellor made you confused and scared.  You do not need that.

Try to relax and not think about too much too soon.  The cancer questions and answers can do our brains in a bit as we all seem to be overloaded with information at the beginning.  Please give yourself the luxury of time.

Keep checking on-line as some wonderful lady will soon be here to help and support you.

I am thinking of you.   Kind regards

Summer