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Risk reducing double mastectomies

11 REPLIES 11
Lulu34
Member

Re: Risk reducing double mastectomies

hi there

im on the waiting list for RRM probably at the end of this year or early 2011.

i had a grade 1 er pos tumour at 37 then a grade 3 triple neg tumour at 40 in opposite breast.

and something suspicious on breast mri which is getting checked out on wed.

i did have a family history and had a gene test and tested positive for BRCA 2 in january... however when my mum was tested she was negative and its actually come down the side of the family with no history.... mostly men on that side.... but think this is still pretty rare to have no know family history of breast or ovarian ca.

i dont want to have major surgery so im opting for skin sparing, nipple sparing with implants and pigskin for my recon...

also getting my ovaries whipped out at some point in the near future too.

in the meantime i will have mri and mammos at 6 monthly intervals... just had the mri so mammo will be due at xmas... if i havent had my bilat Mx by then.

Lulu x

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Re: Risk reducing double mastectomies

Hello to everyone on here....hope its ok to join?? I had a WLE in Feb, now lhalf way through chemo and have just been told i have a higher risk of recurrence as my sister had it at 36 (i'm 41) and because of my age. I have an app with the surgeon on 22nd to discussion options. I'm either going to go for a double or nothing, but what a decision to make as i'm sure you will all understand. Apparently in the margin there were some 'dodgy' cells but no way of knowing if any others. I dont want unnecessary surgery but dont know if i can live with the risk of recurrence - hospital cant offer me any stats to go on either......argh!!
Whats the op like for a dble mastectomy, i would have to have delayed reconstruction.

Thanks Kathy x

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Re: Risk reducing double mastectomies

Hi
Like many of you I had a family history of breast cancer and had been told two years ago my risk of developing it was 1:3. I opted then for yearly mammograms. I had atypical ductal hyperplasia in my left breast by this time, spotted on an ultrasound scan and confirmed by biopsy.

In April this year I got recalled for biopsy after my regular mammogram and after a couple of weeks was informed I had widespread high grade DCIS in the right breast and would need a mastectomy and sentinel lymph node biopsy. I asked if I could have a risk reducing mastectomy to the left breast as well, and after a talk with the plastic surgeon and an appointment with a psychologist (routine for preventative surgery I think) I was booked for bi-lateral mx with DIEP flap reconstruction, within three weeks of diagnosis.

I had the op on 12 May. My SLNB was all clear and the breast cancer was ER positive so I was put on Tamoxifen. Because the margins of the cancer were only 1mm I have been offered radiotherapy which I have an appointment to discuss next week.

First of all, I'm very pleased with the reconstruction - the plastic surgeon did a very neat job and I like the size and shape of my new breasts. Secondly, I'm more than happy with the decision to have the left mastectomy - I would always have been worried about developing cancer in that breast otherwise. My mum had a very aggressive breast cancer and it didn't take much time to claim her life, so even yearly screening would have always left me a bit anxious.

If anyone would like to contact me and ask for more details then please pm me and I'll give you my email address. If anyone would like to buddy up, same applies. It's always good to be able to share your thoughts, feelings and experiences with people in a similar situation, I find!

Guest user
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Re: Risk reducing double mastectomies

Hi all I am considering having a prophylactic mastectomy on my remaining breast as have allready had abnormalities in it and a biopsy.

Ladies considering reconstruction, there is a very good group in my area that gives advice on different types of reconstruction etc and has ladies who have undergone different procedures willing to discuss how it was for them etc.

Please pm me if interested and i can give you the details.

Take care. Debbie. xx

katinthemiddle
Member

Re: Risk reducing double mastectomies

Hiya

I'm having a prophylactic mastectomy within the next couple of months (hopefully). Had bc 5 years ago and because I've now developed a new cancer in the same breast, I felt that I wanted some control and because I was 36 yrs old the first time I feel that there is a possibility of something happening in the other breast. My cancer was lobular which apparently from what I've read has a slight increased chance of occuring again. I've had blood tests for genetic testing and I'm waiting for those results. Also having reconstruction.

Krissy x

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Re: Risk reducing double mastectomies

Hi Paula, I'm 47, my sis was 37 when she was first diagnosed and hers was a lot more aggressive from the start. My mum was postmenopausal with both of hers. I'm going to meet up with a lady my surgeon has hooked me up with, who has had a prophylactic mastectomy and implants. Thats this friday so I shall pick her brain plenty. Having spoken to her on the phone, she was sure it was the right decision for her and as each day goes by I'm feeling more sure that it's the right one for me too. After all this wonderful new vaccine against BC has at least 10 years of testing before they use it on us guinea-pigs and I can't wait that long! Good news for my daughter though!
Nicky x

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Re: Risk reducing double mastectomies

Sorry to hear about your loss Nicky. Your history sounds similar to my family. Mum and her sister had BC. Then in 2004 I was diagnosed and within a few weeks two of my cousins where diagnosed too.

My sister tried to get testing yearly but had to go through the family history route at another hospital. I was tested for the gene but it came back negative. Her doctors remained concerned as we were all diagnosed at a 'young' age. Early to mid forties.

I think the DIEP was the one that my sister was considering.

Thanks for your good wishes, hopefully the results will be back tomorrow.

Paula x

Guest user
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Re: Risk reducing double mastectomies

Hi Daffy, the genetics consultant siad it was the best thing for me as I've had BC, but isn't advising it for my youngest sis so she's being monitored. My mum had it twice and sadly my other sis died of it 18 months ago. I also have an aunt and 2 cousins who've had it. mine was picked up by surveillance.
One thing I am learning fast is that everyone is being offered different strategies in dealing with this, and all consultants have differing views on it, even with the same patient.
The next thing is which recon to go for. Quite fancy a DIEP myself!
Hope things turn out well for your sister
Nicky x

Guest user
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Re: Risk reducing double mastectomies

Hi, my sister has been offered risk reducing mastectomies or MRI checks yearly. Due to our family history. I tested negative for the gene but they said that there may be other genes not yet discovered.

My sister had almost made up her mind but was called back after a baseline MRI showed up something. So we are waiting for the results of the biopsy. Hopefully its something benign and she can go forward and have the operation.

The biggest problem (before the MRI results) was which type of reconstruction to go for.

Paula x

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Re: Risk reducing double mastectomies

Hello Sheenagh, thanks for tapping the buttons in reply. Am having a bit of a toughie weighing up my options. Lots of questions, think no-one really has all the answers. My choice is either surveillance or the ultimate boob job. Kind of sublime and ridiculous both at the same time!
Nicky x

Guest user
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Re: Risk reducing double mastectomies

Hi Nickynackynoo! I would definitely like to pal up - will post more information later as visitors have just arrived!!!

Shenagh xx

Guest user
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Risk reducing double mastectomies

Hi, is there anyone out there considering this option who'd like to pal up? Had WLE in Feb, then gene test, results last week. Luckily negative but still advised by genetics consultant to have it done as although BrCa neg, I have too much family history for it not to be genetic, ie a polygenic history where lots of bad bits come together to give cancer. Am thinking of keeping my boobs for the summer and then going for surgery in the early autumn, if it all pans out with surgeons etc.