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By *yldstyle OP Woman
over a year ago
A world of my own |
Apologies I know this isn't the light hearted fab posts most probably prefer however I wonder if anyone's been through this?
I've been advised to go and it was a bit of a bolt out of the blue when I received the letter. I'll be honest I'm terrified. I know it may not be something people want to share publicly so I'm sorry if it's too intrusive. X |
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By (user no longer on site)
over a year ago
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"Apologies I know this isn't the light hearted fab posts most probably prefer however I wonder if anyone's been through this?
I've been advised to go and it was a bit of a bolt out of the blue when I received the letter. I'll be honest I'm terrified. I know it may not be something people want to share publicly so I'm sorry if it's too intrusive. X"
I'm sorry I have never heard of it before but will be watching to find out more  |
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By (user no longer on site)
over a year ago
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I've had Genetic counselling for breast cancer due to strong family history including deaths very young. It was very simple to begin with, a questionnaire which you fill out and send back. Then they decided if they wanted bloods from me- they didn't, they took bloods from other relatives. Then I've been given yearly mammograms and been told I have a 10% higher chance of getting breast cancer. |
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By *yldstyle OP Woman
over a year ago
A world of my own |
"I've had Genetic counselling for breast cancer due to strong family history including deaths very young. It was very simple to begin with, a questionnaire which you fill out and send back. Then they decided if they wanted bloods from me- they didn't, they took bloods from other relatives. Then I've been given yearly mammograms and been told I have a 10% higher chance of getting breast cancer."
thanks. I've been told its breast and ovarian cancer risks. I'm hoping they find nothing but it's really scared me and I can't get it out of my mind. X
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By (user no longer on site)
over a year ago
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For a different reason we had it carried out on our sons when they were little, they have a rare epilepsy condition. Unfortunately it didn't give us the answers we wanted as it's still to rare to isolate the correct gene it was something I'd do again. I'm very much I'd rather know and deal with facts than what ifs.
I have to undergo 6 monthly blood tests for a condition that can turn to cancer and if they could do a genetic test for the probability of that I'd take it. I'm not saying it's not scary because every time I walk into the haematologist I shake. X |
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By (user no longer on site)
over a year ago
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"I've had Genetic counselling for breast cancer due to strong family history including deaths very young. It was very simple to begin with, a questionnaire which you fill out and send back. Then they decided if they wanted bloods from me- they didn't, they took bloods from other relatives. Then I've been given yearly mammograms and been told I have a 10% higher chance of getting breast cancer. thanks. I've been told its breast and ovarian cancer risks. I'm hoping they find nothing but it's really scared me and I can't get it out of my mind. X"
Is it not better to know early than find out too late?
I do empathise with your stress levels but in the long run it is much better for you.
Go to Cancer research UK and look up their breast and ovarian cancer sections. You'll find a wealth of info and support contacts. |
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By (user no longer on site)
over a year ago
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"I've had Genetic counselling for breast cancer due to strong family history including deaths very young. It was very simple to begin with, a questionnaire which you fill out and send back. Then they decided if they wanted bloods from me- they didn't, they took bloods from other relatives. Then I've been given yearly mammograms and been told I have a 10% higher chance of getting breast cancer. thanks. I've been told its breast and ovarian cancer risks. I'm hoping they find nothing but it's really scared me and I can't get it out of my mind. X
Is it not better to know early than find out too late?
I do empathise with your stress levels but in the long run it is much better for you.
I took the opinion I wanted to know, so I could be screened more regularly? Even if you have the BRCA gene, then you have choices? You could choose to watch and wait, or to have preventative surgery. You don't have them choices as you don't know yet?
That was my thoughts x
Go to Cancer research UK and look up their breast and ovarian cancer sections. You'll find a wealth of info and support contacts."
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My eldest child's father was told - when I was 7 months pregnant - that his mother, and several of his aunts/uncles, cousins etc - had been belatedly (some historically) diagnosed with a cruelly degenerative and life limiting neurological disorder (I won't say what it is as it might be too identifying). At the time, the various symptoms and problems they'd had had been attributed to all sorts of other conditions. Back then a predictive test hadn't yet been developed but we knew if a parent had it, there was a 50% chance of it being passed to their child.
We were given this information by a social worker who hadn't realised I was pregnant and who counselled us to 'think very hard before starting a family' so it was very upsetting. As were the following 5 years not knowing whether my ex or my child was a carrier or not. It was always there at the back of your mind, particularly as we watched and dealt with the deterioration of his family's health. By the time a predictive test was developed my ex was desperate to know, one way or the other if he was affected. He was obviously very frightened but not knowing was torturous and he/we felt that it was better to know - and be able to take some control, e.g. by planning accordingly, making lifestyle changes and so on - than carry on not knowing and wondering if every little trip, stumble or peculiarity was the start of 'it'.
We were lucky, because he was found not to have inherited, and therefore our child hadn't either. But 5 years of anxiety was very tough because you simply can't forget or ignore something like that in the back of your head. It's obviously an extremely personal decision to embark on an investigation which might reveal unpleasant and scary news but harsh though it sounds, whether you do or not, won't alter the fact that an individual is predisposed to a particular condition or not and, as with most things in life, it's usually better to have this confirmed sooner rather than later so if necessary, they can benefit from appropriate treatment/counselling as soon as possible and have the opportunity to live their life to take account of what they now know about themselves before it's 'too late' to make choices/changes.
Of course, genetic counselling can also bring good news, as it did for me, and therefore improve your quality of life by lifting a weight from you. It's understandable we worry about the worst case scenario but it can also be a huge relief. Good luck with whatever you decide to do x |
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The lounge is the most appropriate place for anything not covered by the other areas.
I've not had it but think it's a reasonably good idea to discuss things from a statistical perspective - based upon our current understandings, which will improve over time.
It may highlight some changes that could be made that may be helpful. But there are no guarantees of course.
Feel free to discuss the benefits and drawbacks with them and feel free too to guide the session in the way that you would like and be comfortable with. I'd want to know the reasons and motivation for them suggesting the session. We're likely to get an increase in the number of them as expertise increases as well as more personalized medicine and a focus towards prevention rather than cures.
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