Hi ladies,
Just wanted to vent a little and know you won’t mind 
It’s taken 6 months to get the right genetics referral and I still have weeks to wait before I get an appointment. I had bc last year and now on tamoxifen after 1xFEC, rads and a nervous breakdown which put me under psych care for a month. My sister has been in a flap since my dx that it might be genetic (I’m ER+ but only 33 at dx) as a couple of relatives on Dad’s side had breast and peritoneal cancer. Anyway, she traced the family history with her local genetics team and has been pressuring me to chase up my referral and appointment (I wasn’t offered it by my BCN or onc as not triple negative and no history of bc on my Mum’s side, had to ask my GP for a referral which got sent to the wrong place… Grr!), to have the test so she can get tested if I carry one if the known mutations.
I don’t know if I want to know if my bc was due to a mutation. I’m a scientist and look for facts/reasons, but it’s a lot to deal with on top of everything. If I carry the mutation, should I have risk reduction surgery? I have a recurrent pneumothorax which makes surgery less attractive than it already is…! If I carry it but don’t have surgery how will I cope feelibg like a timebomb waiting for cancer to strike again? If I don’t carry it then great, but will I feel somehow to blame/the unlucky one of the two of us?
The last thing she said was “I guess we’re different people; i just need to know the facts and so im really grateful that ur doing the test.”. I have tried to explain that there is huge psychological implications I’m trying to deal with plus my recent history and extreme fatigue from rads and tamoxifen. Not to mention work have mentioned sacking me owing to my fatigue and brain fog (no, I don’t have a union rep or occ health team). I don’t think she really cares about that in regards to BRCA restring. She just wants to get tested, not that it will offer either of us a guarantee either way.
Am I unreason reasonable or selfish in my hesitancy for testing? How do I cope with this extra pressure?
Lisa xx
Hi Lisa,
Can I suggest you give the helpline team here a ring and discuss your concerns/thoughts through with them, they’re here to support you through this. Calls are free 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.
Take care,
Jo, Facilitator
Hi Lisa, sorry you have found yourself in such a difficult position, but I would say you must do what you think is best for you.
I am currently undergoing the first stages of BRCA testing as it was suggested by my Breast surgeon and I have 2 daughters aged 30 and 12. My eldest is very keen to know but I am worried about the implications for my 12 year old if I am found to be positive. I have also had to contact a cousin who had breast cancer many years ago as the genetics team want to get hold of her medical records. I have written to her and enclosed the consent forms, but have added that the decision must be hers and I will not put any pressure on her to sign the consent.
I don’t know if this helps in any way, as I said it is a hard decision but it really must be yours. Good luck, philomena x
Thanks Jo, I tried to call earlier but just missed opening times. Will try again tomorrow/Friday as I’m sure it’ll be helpful.
Thanks for you reply, philomena. It sounds as though you’ve had a bit of soul searching to do in regards your youngest. Cancer is a heavy burden to carry, and I imagine even more so if a parent knows they may have passed on a gene mutation to their child. If you are positive, I suppose you can choose when to tell your children and help them when the time is right.
Months ago I gave my sister’s genetics team my consent to access my medical records and histology report. But it’s more recently I have been struggling with the “what ifs”, and I can’t really convince myself of the benefit of finding out either way - if I were to be positive and don’t use the information for good i.e. to make my situation better/safer/less likely to have another cancer then what’s the point if having it? If I’m negative my sister stops worrying and goes back to her happy life, but I’m still going through the hell of treatment; if I’m positive then I might have another cancer or a recurrence, and she might be positive too; if I’m positive and she’s not then I get more worry and decisions and she’s back to her happy life with no health worries. In typing that I realise I do resent my sister for not being “the one with cancer, depression or a collapsed lung”. My life has been quite frankly pretty rubbish since dx last August and there’s no light in sight or any sign of me being able to get back to normal. We have always been really close and I love her to bits, but I can’t help feeling jealous that my sister has a wonderful life and I’m stuck with the bad luck/genes of the family and dealing with the isolation and general crapness of cancer. I know that having more info about my cancer will give me more control and the ability to make informed choices - and her too. it’s the impact on me mentally I’m concerned about. She just wants to know if she’s likely to get cancer - the green eyed monster in says keeps shouting that I didn’t have that luxury, so why should she. But it isn’t a certainty if I/she is positive, just a risk indicator/statistic. I just have to keep telling myself that!
Sorry, moan over. Getting that all out helps somewhat
Lisa xx
Hi Lisa,
So sorry you are stuck in this dilemma. I decided to get tested because I wanted to have preventative surgery if it turned out to be positive. I thought that there was nothing worse than chemo and so I reasoned I would do anything to avoid it again (had it twice). However, by the time the results were looming I became terrified of a positive result as I had had problems with surgery and very serious infections and pain. I thought it was a no brainer, but I came to realise it was a more serious decision than I thought.
I completely understand why you are not sure. You have actually thought it through carefully. You are right to say that, if you are not going to have the surgery, then what is the point. A positive result would get you access to MRI screening rather than just mammograms, so you might get earlier detection. That will not be preventative, but it will give you the best possible treatment chances if you get cancer back. But, you need to consider your mental health. Can you live with a “time bomb”, not knowing when (or if) it will go off?
Any good genetics service will require you to have a “counselling” session before testing you. In my case this was about 1 hour long. They explain everything to you and ask you why you want the test and what you will do with the result. That process may be very useful for you. It really is your decision and your sister is wrong to pressurise you. I can understand her point of view, but I wonder if she has thought through the repercussions for herself, never mind for you. It may seem easy to do an Angelina Jolie when you have not experienced the hell of cancer, but it is not. The counselling session may end with the decision not to test, or to wait a while before testing. Either way, it will be you in the room and not your sister. As she is already in contact with her own genetics team, she could have her own “counselling” session with them to help her understand your decision. It is YOUR decision. At the end of the day, she can always raise the money to get tested, if it is so important to her.
Finally - you are much more likely to be negative than positive, statistically speaking. I was negative.
I wish you luck making the decision that is right for you, Cress, xxx
Hi Cress,
Thank you for your reply, it was really helpful reading. It is good to know you understand where I’m coming from - I thought I was being a loon! I wish my sister could see and listen - not necessarily to change her mind, but to have a bit of sympathy for my situation and concerns - and step off the pressure somewhat.
You make a good point about not wanting to go through treatment again - it was (is) hell and I’ve “only” bc once - and only stuck chemo for one cycle. I wouldn’t want anyone to have to go through tx, not even my worst enemy tbh.
My sister is a mental health nurse and med student in her final year. She is very analytical when it comes to my condition and tx; I think the wondering if she might be at risk is eating her up in some respects, as she has seen how badly I’ve coped with it all. When I said I thought that it was good Jolie had been public about her surgery and that it made sense to go through it, she just shrugged it off and said she wasnt special and loads of women before her had done it, no big deal. I think it is a huge deal, and wonder if that was just her defence mechanism, as she is frightened? I don’t think she appreciates how I feel, she just wants all the facts so she can work out how it affects her and her life plans. I’m trying not to retaliate by being a jealous sister and take that control away from her, if it would be cutting my nose to spite my face. She says the family is drained from my having bc (they should bloody well be me!) and that she wants to do whatever she can to reduce her risk. I am a scientist by training but have turned into an emotional wreck over my own bc and not seemingly able to stay calm and make rational decisions! I think I just need to feel I am making the decision for me and that it would be a bonus for her, not that I am railroaded into the test!
I don’t know how it would affect our relationship if I am positive and she negative - I don’t think I could stop myself feeling bitter/resentment that I got the bum deal of the two of us. But perhaps better to know in order to make informed decisions about surgery - and better screening as you say if I am a carrier. We each have our own journey to make and I am sadly accepting that mine isn’t what I always wanted it to be. My sister is always off travelling and on exotic holidays whereas I can barely make it round Tesco these days 
I’m hoping things in the next life are more in my favour!!!
I am looking forward to my counselling session so I can go over all these issues with the team and then feel better able to decide. Thanks again to you all.
Lisa
xx
Hi Lisa,
I just want to say that I found out had a BRCA mutation 9 years ago just a few months after treatment for BC. I couldn’t stand the thought of more surgery so put preventative mastectomy of the good breast on the back burner. 9 years on I still haven’t had surgery and I don’t want to, I’m thorough in examing myself and i also have a check up and mammo yearly so feel like I’m been monitored. I’m sure you will make the right decision for you in deciding whether to be tested, and not let your sister or other people put pressure on you. Even if you go ahead with the test and get a positive result you don’t have to rush into making a decision about what to do next.
Best wishes x
hi there Lisa
i think if you go to your genetics appt and explain how you feel they would be very reluctant to do the test anyway… you have to convince them your up to it… its not just a genetic appt but genetic counselling… and you dont have to do it if you dont want to… beibg pressurised isnt a good basis for getting potentially traumatic, possibly life changing news.
you could always say they have said you dont have enough family history to be tested and that she could go forprivate testing but your not wasting your money on that.
you have been through so much already and from what you say it really doesnt sound like now is a good time and any qualified genetic counsellor should be able to tell that… iv heard of people be referred and then change their mind or even go for the counselling with no intention of being tested… i am a gene carrier and my daughter went to her genetic appt about 8 months ago with the intention of being tested but after she discussed the implications with the counsellor she was advised to get back in touch if she wished to proceed… its normal to have two appt prior to testing for this reason.
there is a fair bit of research in the counselling aspect and even the NICE guidelines specify that its preferrably two sessions and should be risk counselling and psychological counselling… im sure you have probably read them but will post the link anyway…
nice.org.uk/nicemedia/live/14188/64202/64202.pdf
take care hunny xxxx