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brca2 i need to decide. feel like im drowning.

6 REPLIES 6

Re: brca2 i need to decide. feel like im drowning.

Hi eaton,
I am awaiting my genetic screeing due to all of breast and ovarian cancer in the family. I'm just finishing radiotherapy and on tamoxifen. Have escaped chemo thank fully. Stay strong. If you decide on more surgery, the recovery will be long, but your future more secure for you and your family. You must however feel exhausted after this year! Can any of the surgery be delayed to give you a break? Is there any indication of how urgently it needs doing? I'm sure I heard of 1 lady who had both Mx and hysterectomy at same time (surgeons must have switched half way!). If it could all be done together then less recovery.
Good luck with it all.

Deborah

Re: brca2 i need to decide. feel like im drowning.

Hi eaton

i had hormone pos bc age 37 in 2006, had lumpectomy, rads and tamoxifen. because my mum had bc at 57 and gt gran also had bc i was able to be gene tested in a resreach trial and was neg.

in 2009 on routine annual mammo i was found to have an aggressive triple neg bc in the other side. So had lumpectomy, chemo, abd rads. I was able to be tested again through our local labs this time as there had been some advances in gene testing and was found to carry a brca2 mutation In jan 2010.... Mum was neg but dad was pos even though no bc on his side of the family.

a few months later i spoke to a plastic surgeon about double mastectomy but wasnt sure of the type i wanted and he wanted to wait til a year after finishing treatment. Saw gynae who offered ovaries and tubes out or a full hysterectomy. I opted for just the keyhole ovs and tubes but on the day of surgery i changed my mind and went for a full tah and bso.

early in 2011 i developed an infection and ended up in hosp seriously ill for a few months so decided not to bother with mastectomy meantime and in the summer of 2011 following routine mri scan of my breast i was found to have a recurrence of the tnbc in my chest wall. so had a surgical excision of the area followed by more chemo and rads.

i did ask at the time of my second bc and the recurence to have a double mx but surgeon didnt want to do unnecessary surgery as he wanted to deal with the cancer i did have not the one i might get in the future.

i finished chemo and rads last year and everything has been ok since then.... My annual mri is due next month and fingers crossed its all atill ok.

as for double mx part of me thinks maybe i should get it done, but a bigger part of me likes relying on scans (which i know arent 100% reliable, but then neither is a double mx) which i wouldnt get if i no longer had breasts.

in all of this you dont have to do anything.... Eg you dont have to have a hyst and you dont even hav eto have your ovaries out if you dont want to, although there is no reliable ovarian screening. You dont have get mastectomies or reconstruction etc... You have to do whats right for you.

as i said earlier we have no family hx of bc, in my family its ovarian and pancreatic and some other random cancers with dubious links to brca 2, so i wanted my ovaries out asap And i have just joined a research study called europac which is for recording pancreatic families and a screening programme for this too... Not got on to the screening bit yet but will be pursing this Soon.

i have been back and forth to the genetic psychologists trying to help decide what to do and although they are keen to push me towards risk reducing breast surgery i have come to my own conclusions based on my own personal history with my onc and breast surgeons input..... I prob will have surgery done one day... But just not yet and im not going to live under its shadow.... It can live under mine!

if your still not sure maybe seeing a psychologist or counsellor will help.

good luck with your decision

lulu xxxx
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Re: brca2 i need to decide. feel like im drowning.

Thankyou so much for your kind words. I have been fighting this for nearly 12 mths and have been very positive the hardest part is over but i seem to have fallen down a well emotionally. The hot flushes mean i dont sleep well and i think the hot weather have made things worse. i have bitten the bullet and am now waiting for a consult with a cycologist.

Re: brca2 i need to decide. feel like im drowning.

Hello eaton,
Just wanted to come on and send you cyber support. I am sorry you are having to deal with so much.
I have a brca1 mutation so a bit different, but as I am 'the other side', of the dceisions you are facing, wanted to give you some encouragement.
Getting through cancer treatment is a huge slog. Things do get easier. This time last year I was having chemotherapy for a second breast cancer - new primary/recurrence. I had breast cancer the first time in 2009. Had chemo., a WLE then rads. A year later found out I had a brac1 mutation. I decided to have bilateral mastecomies and then my ovaries removed. I had a lot of complications with the mastecomies and then more chemo but guess what? Here I am. I have just had a holiday with my sister. I am back at work after a long time off. I can honestly say there were times I felt in a dark tunnel with only a tiny glimmer of light in front of me but I clung to it, and now I have come out into the day-light.
I had a lot of support- I felt my lovely family and friends could not help me, but I used BCC who were brilliant, Maggies, had some counselling. I do have lows- my daughter is 6 years old and so the whole genetic thing is still painful but it has got easier. Like you, I feared there would be nothing left of me, but although my poor body is covered in scars, it is still 'me.'
I am sure lots of others can relate to your feelngs and fears as well as me. I found it helped to know I was not alone.
Post again and do ring the Helpline, they are lovely.
Rattles xx

Re: brca2 i need to decide. feel like im drowning.

I had right mastectomy in 2010, when being tested for chemo another primary was found in my lung so I had an op for that. I then had chemotherapy end of 2010, radiotherapy beginning of 2011. I then had reconstruction in 2011, so I did feel like all my bits have been moved round (which they have) I find it very hard with life so cannot understand how you could cope with 4 children but I would include them in it all. I just read there is a publication on here which will help with the kids. I would use all the help and advise you can get. I was not given many choices and not genetic so I am lucky. At the time I did say will you do mastectomy on the unaffected side but they said not. You say you feel there are folk worse of than you but that does not help you. It is a tiring process, I have got over that now and now work full time as a nurse which is busy, busy, busy. I did utilise all the help ie moving forward programme, reflexology, massage, looking good feeling great and even had a psychological assessment to change my thinking processes but that was not required. So do try all these and good luck on your journey.

Re: brca2 i need to decide. feel like im drowning.

Dear Eaton

I am sorry to read that you are having such a difficult time, please feel free to give our helpliners a call as they can offer you a listening ear, emotional and practical support

Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

Take care

Lucy

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brca2 i need to decide. feel like im drowning.

Hi i am so sick of cancer i feel like my whole world has fallen to pieces i was diognosed last september with two tumers in my right breast after a mastectomy, 6 rounds of hurrendous chemo, not so bad radiotherapy i was diognosed with the brca2 gene.( My maternal grandmother had ovarian my mother bc ). While fighting BC i was very strong mainly for my 4 kids who range in age from 14-6. I now feel as though i am drowning, chemo pushed me into menopause and have been struggling with the hot flushes. The fatigue i feel makes me feel useless i have to force myself to do the most mundane of tasks. I had a meeting with one of the familial cancer team who told me i would only need to have my overies removed but a later talk with the gyne consultant has advised having a whole historectomy as the Tamoxafin im on has low risk of endrametrial cancer. I cant seem to see the light at the end of the tunnel. I have seen a surgeon about removel of my left breast and reconstruction to both, but my oncologist has told me to wait at least 12 months after the radiotherapy before i should go ahead. All i see is months of this streaching ahead. Has anyone else had the same kind of decitions to make and is out the other side. I keep telling myself i will get through it and there are other people in a much worse place than me but how many more bits of me can i lose.