New To The BRCA Group ?

Hi my name is Carole,

I have BRCA 1, already had an oophorectomy and about to embark on DIEP surgery at the end of September. My only concern is that I have MS and I'm not sure about the recovery. I have decided to write a blog to inform others of my experiences and hopefully help them. If anyone would like to see it, please click here. I'd love to know your thoughts.

Thanks

Hi Carole,

Love the light hearted blog and the illustrations - You have certainly done your homework.

Hope you have recovered well from your 'Oophie' 

Do you have any questions about your pending DIEP or possibly looking for some pointers from those who have already had a DIEP carried out ?

There are a couple of ladies who are members of the Breast Group who have found to be BRCA either through being BC diagnosed and finding they are BRCA afterwards or joined to get some experienced replies from ladies who have had bilateral MX and DIEP reconstructions.

So it may be helpful for you to do the same ? There are also a couple with MS but I'm uncertain as to whether they had any form of recon as the risk of MS exacerbation episodes must be a concern.

At least you have allowed yourself plenty of time to gather some information although, no doubt the next few weeks will pass quickly.

Take care, G n' J

Hi

Really appreciate you replying to my blog, glad you like the illustrations. I shall certainly look at the breast group as any information is useful. In the meantime, if I can be of any help to anybody considering an oophorectomy please don't hesitate to pass my details on. Yes, my MS is a concern but I'm lucky enough to have a loving supportive family and I know that they will help me in any way they can.

Thanks again

Carole

Hi Carole, great blog. I was thinking of doing the same and then realised that my head was so full of stuff up that I suddenly realise I'm already on the conveyor belt and its a bit like opening a book one third in.  

Similarly, I have BRCA 2, had a bilateral salpingo-oophorectomy (these things just roll off the tongue don't they? I had to go to wikipedia to remind myself of what I just had!) 2 weeks ago and am now en route to the big double whammy too. Not as close to it in time as you are - I figured I ought to just get the easy one out the way first, recover from that, pull myself together, man up (sarcastic haha) and all that and get everything in my life in order to be able to meet the op and the consequent fallout head on. I'm a single parent with a 13 year old child and you suddenly realise that being out of action for a good few months is going to need a bit of prep - especially financially covering the mortgage and debts my ex husband so kindly left me with seem to be taking a priority over an operation I know I have no choice but to have. The alternative of testing fate to the full isn't a risk I'd like to take at 53 years feeling like a ticking time bomb. Having tested positive to the gene at least means you kinder now what's in store for you to be able to make the choices - for that I consider myself rather fortunate. Good luck girl, thinking of you on the big day. 

Donna 

Hi 

I'm new to this group too although an old hand in the womb cancer group where I started out. Who knew BRCA was linked to womb cancer? Here I am, 51 and the other side of a total abdominal hysterectomy, BSO, chemo, radiotherapy and brachytherapy and now with a BRCA1+ finding. 

I'm not considering risk reducing mastectomy. At my age the breast cancer risk is 1-2% a year as I'm past the very high risk period. I've had enough major surgery already for the womb cancer and the risk of that recurring is higher than the breast cancer risk. 

I am feeling very down today though. I've had a week of talking to various family members. In the last week I have had difficult conversations with both my daughters (age 11 and 15 so age appropriate), one of my nieces (age 23), my brother and the last two of my four sisters. These last both by phone as they are abroad. I know it's got to be done and they have all said rather too readily that they are fine but I know it's now rattling around their heads. It's one thing for me who's been through the shock of diagnosis and treatment. It's quite another for them. I feel I've caused them enough suffering already and this is just more. 

I don't mean to be maudlin. I just need to let out this sadness in a safe place. 

Thanks for listening 

Hi Daloni, 

I don't post often but I felt a real need to reply to your post. I hope you are feeling better now you have let it all out. It sounds like you have really been through the mill and you are more than entitled to your down days but know that this too will pass, sometimes only someone who has been there can tell you there is light at the end of the tunnel. Try not to worry too much about your family, I am sure they will cope with what's ahead for them and draw from your strength and experience. 

Keep your chin up, tomorrow is another day and things are always better in the mornings.

Take care

Thanks Katie. It has helped letting it out. Xx

Hello.  I've been away from the site for a while.  I too was initially diagnosed with womb cancer (which turned out to be ovarian cancer), and in 2014 had my total abdominal hysterectomy, bilateral oophorectomy, 6 months chemo and during this last period was diagnosed as BRCA1+.  You are not alone in being more concerned at times about the effect it has on your close family (for me, this is only my younger sister who has no children and is now in her 50s, and my 20 year old daughter and 18 year old son). I've now been called into the clinical genetics dept to get an update on my particular BRCA mutation - apparently there's been further research which "might" mean this is getting downgraded for me.  I don't want to get too upbeat yet (been there before) but I'm glad I've not rushed the double mastectomy decision. Has anyone else been in this situation?  They've already told me that this is extremely unusual.

Caroline

Hi Caroline

Now that is interesting. I haven't heard of this although I know research is marching forward all the time with BRCA. The Eve Appeal is about to launch a research programme that will, they hope, lead to alternatives to risk reducing surgery. I'm also intrigued by the misdiagnosis. It's hard to understand what all this means - I've asked what the difference is between ovarian serous carcinoma and uterine carcinoma and had various answers. The clinical geneticist said it was the site where it's found; a surgeon has told me the same and has had cases where women present with uterine carcinoma but the larger mass was in the ovaries and this leads to a re-diagnosis. But a histologist says the two cancers look different under the microscope although he's not clear whether that's an artefact of where cells end up rather than one of where they originate as some serous carcinomas seem to originate not from the womb or ovaries at all but from the fallopian tubes.

Do let me know when you know more. I do think the decisions around risk reducing surgery are so hard. When I talked to the clinical geneticist last week she was very clear that as one gets older, past 50, the risk from BRCA mutation starts to converge with the risk of a spontaneous cancer. Mine is a bit higher than for a woman with no BRCA mutation but it is not the big scary 90% number that leapt out when I first started to read about BRCA. That's the basis of my decision not to go for surgery although I respect other people's decisions as we will think differently. It is all one huge game of dice as far a I can tell. 

I hope your son and daughter are coping with the news. It's hard to know what is in their heads I think. 

xx

Thanks Daloni.  My original cancer was actually Fallopian Tubes - but again, something that's pretty unusual.  I've been on a real up-and-down journey over the last couple of days.  I've been feeling really well (after getting over everything last year) and getting back to my normal self at last.I was managing to put some of the longer-term worry aside, and had come to the decision not to have my breasts removed right now anyway.  Like you, I feel the risk is reducing for me for breast cancer at least.  I love running and had been training right up to last weekend for the Berlin Marathon, which I managed to do on Sunday in aid of Maggie's Centres.  Everything seemed bright and then I got this call from the genetics team.  Everything still seemed bright. Then I went for my standard 3 month post-chemo check up at the hospital yesterday afternoon to find that my CA125 levels had risen sufficiently for them to suggest a scan.  So the worry now is about re-occurrence of a secondary cancer.  Can't believe it all... xx