Feel let down by sisters

Feel let down by sisters

Feel let down by sisters I was diagnosed with BC May 05 at the age of 30, my mother had BC at the age of 42 and my paternal grandmother died of BC in her early 50s. So I’ve been referred to a genetics team. I filled in a form quite a few months ago giving family details/history and as a result they requested authorisation to access my 2 sister’s medical records as they have recently had scares (my 3rd sister hasn’t had any problems). They assured me that they filled them in and posted them - the genetics team never had them. New ones were sent out and given to my sisters a few weeks ago. The genetics team have again chased them up and on speaking to my mother, she informs me that 1 sister has probably returned hers (don’t know if this is true) but another isn’t going to do it because she wants to get a mortgage!!!

I feel very angry that my sisters have so far delayed the process by approx. 6 months, that they haven’t had the decency to speak to me about any concerns that they may have and that they have made me feel like a complete leper and outcast. It’s hard enough dealing with all this without family members showing such ignorance.

I understand that they have a right to make their own decisions but I can’t understand them making that decision based on what ‘some woman told my sister’ and not talking to me or even the genetics team.

Sorry for the rant but I just feel that they’ve really knocked me back (I felt that I was bouncing back after finishing treatment in Dec).

I was wondering if anyone else has experienced anything similar or have any advice.

At the moment I just can’t bear the thought of even seeing or speaking to them.

Adele

let down Hi Adele,
I’m so sorry you’ve had these problems with your sisters. They might be finding it hard to come to terms with your diagnosis and the family history, and by not filling in their info or talking about it they can almost believe its not going to happen to them. It is hard to deal with the fact you’re at high risk of breast cancer, but they do need to deal with it, its not going to go away. It is hurtful obviously because its almost like they’re not even interested in how you’re doing, which is not nice at all.
The genetics team should be able to continue with their research without your sisters info, but obviously they won’t be able to include your sisters information within that.
I don’t know whether or not there might be a problem with your sister’s mortage, as if she knows there’s a family history of bc and doesn’t declare it she might not be covered if something happens. She should take advice about that first as she might have to pay a higher premium or something on insurance.
Have they offered you or your mum a genetic test yet? My mum was tested for brca1&2 but has so far tested negative, although they don’t test 100% on the nhs.
I have an american cousin, who hasn’t declared the family history, but her mum so far hasn’t been diagnosed with bc (she’s now over 60) so it looks like she’s been lucky and not got the gene anyway. 2 of my aunts were diagnosed aged 41 & 49, and mum was diagnosed age 52. Mum had a bilateral mastectomy but is so far doing well.

best wishes
Justine
x

Maybe your Mum could remind your sisters that somewhere along the line the genetics info will benefit your sisters’ daughters and their daughters.That should get the form filling going.

Hi Adele I’m so sorry to hear how let down you feel by your sisters. When I had my genetic testing, 2 cousins had been through it first and were so supportive, giving all of the information I needed straight away.

Is there any way you can speak to the genetics clinic and ask them to go ahead without your sisters’ medical records? Surely their decision not to help shouldn’t stop you from finding out your own results?

Just wanted to add that I’ve just bought a house myself and got a mortgage very easily - even though I told my financial advisor all about my bc diagnosis and BRCA1 result.

I do hope this all gets resolved for you - you shouldn’t have to feel this way after everything you’ve been through.

Lots of love
Sue
x

Hi Adele

Really sorry you’re feeling let down - I would be too in your situation. I guess your sisters are scared about the implications. Do you normally have a good relationship with them? Just giving information wouldn’t alter their insurance premiums at all - it’s only when they become the patients themselves that you would need to declare it. I’ve applied for different types of insurance over the years and it’s made no difference to my premium of having a family history of cancer compared with going through a genetics screening process. Now I’m diagnosed with BRCA1 myself, I don’t know if it will go through the roof, but your sisters don’t need to worry at this stage.

To my knowledge, having just been through the genetics screening / test process, you don’t need their consent / permission / involvement to have the genetics testing yourself. Since you have been diagnosed yourself, I can’t understand what the hold up is. You’re the one who wants the test and you’ve got a clear family history to back up the rationale. I’d speak to your genetics clinic and tell them that they should go ahead without your sister’s information. I’m not sure why they need it. Am I right in thinking neither sister has had a bc diagnosis before?

Hope you sort it all out.

Bev.
xxx

Hi Adele,

Sorry to hear that you are disappointed with your sisters. From my own experience I do know that dealing with family members and their reactions can be difficult.

My mom carries the BRAC1 gene and has had b.c and I have just gone down the preventative mastectomy route. She is from a huge family, four of these have had a genetic test, (which thankfully were negative) the others would rather bury their head in the sand and say things like"whatever will be will be" or to put it another way they are “dealing with things in their own way”. Some of my moms brothers have got daughters but wont have the test.

As a double whammy I may also carry the HNPPC gene which predisposes you to bowel cancer. My Dad died of bowel cancer. My Dads’ side are just as bad at facing up to this and it’s like walking on eggshells. They could get involved in research which could help with developing a genetic test for this gene, but I daren’t even ask them-that’s how sensitive these things are.

I do understand why they would rather not have tests etc, it is a hard thing to come to terms with, but ignoring something never made it go away.

Joolz