Ahhhhhhhhh… ive just finished rt today for my 3rd primary cancer… and thought i’d got my life back to a certain extent… then the phone rings… its the genetics department re my blood test… it has come back as having the gene brca1… !! I’m now told i will need an oophorectomy and that i need to think about a double mastectomy… i’m one month from my 40th birthday and hadmy 1st cancer at 31… so have been on this merrygo round for nearly 10 years.
It has just sunk in that i will need more time off work… that’s if i get back before any ops are planned… and the recovery time afer each op…!! I was looking forward to going back… having some money and planning my future… I’m not sure what i’m moaning about… at least i haven’t been told it’s the end of the road… anyone out there with any advice…
many thanks
wendy
Wendy, i think your so brave, i have just finished treatment after a year and thought i felt something in my good breast and waited a couple of days for my appointment but its been awful thinking that id have to go through what ive just been through again and now i see what youve been through and your being so strong but it sounds as though you have got the right attitude “the lets get on with it” and that is how you have to be because no one is going to do it for you.
To me this sounds like your final hurdle, i hope you believe this.
sorry i havent got real advice but your an inspiration to us all.
Good luck
Tracey
xxx
Dear Tracey
Many thanks for your reply, i take it your other breast is ok… chin up shoulders back… it makes you realise you have an inner strenght… most days!!
The hardest bit is telling my sister about ‘the gene’ she has a baby and i think its harder for her… and i hope and pray she hasnt got ‘it’!!
take care
wendy
Hi Wendy
We have the same mutation …
You don’t HAVE to have anything. Sit down with a genetics nurse and talk about it first - mine was great. Mine also got me an hour with a cancer genetics specialist (doctor) who is ex-Marsden and a lovely lady and she was honest about the risk percentages for ovarian, womb and breast cancers based on my family tree.
Don’t be hurled into making hasty decisions; get them to do some figures (it’s all computerised) and then sit down and explain things to you.
In the end I had an oophorectomy (BSO - it includes tubes) and it was a doddle so now my ovarian risk is less than the general population!
Hope this helps.
D
Hi Wendy,
I’m in a similar situation except I found out I was BRCA 1 after my first cancer. At the time I had WLE, chemo and radio and had a second primary a year later. At the time I was advised that I didn’t nee a mastectomy or oophorectomy which as far as I’m concerned was dud advice! I am now being treated (by a much more clued up team!) for a local recurrence, have had mastectomy on one side + am currently doing chemo and plan to have a further mastectomy and oophorectomy when recovered. I am 34 and like you can’t wait to get back to real life and planning the future, but the way I look at it now is that this will all hopefully give me lots more lovely years to do whatever I like so it will all be worth the trouble in the end.
Very best of luck
Lucy x
Dear Lucy
Thank you so much for sharing your experience, I’m so sorry that you have had to go through so much so young… however it’s lovely to hear from someone who is in a similar position to me…that’s sounds awful but it makes it a little easier if there is someone in the younger age bracket who has had nearly the same treatment. It makes me feel less like an ‘odd ball’.
I’m at that stage that if they say ‘it’s highly unlikely that will happen’ it happens to me!! Your message helps me make up my mind about the mastectomies… ‘they’ keep saying that after rads it unlikely of a reoccurance but unfortunatley you prove that wrong.
How’s the chemo going…i had epi this time, only four cycles and that was enough!! I get fed up of people telling me im very young or too young to be bc… and you must get to feel the same… dont you just want to scream sometimes…!!
Thank you so much for contacting me… would love to chat some more … let me know how things are going
Wendy x