Hi im a braca1 gene carrier,had oopherectomy,in the process of the next stage,anyone else been here,im seeing a mr morrison at addenbrookes???
hi katybella, im in glasgow and my surgeon is amazing. i have to call receptionist on mon as they are aiming for a date in jan, they need 2 main surgeons and 2 generals so far they have 3 out of 4 which they said will be fine if need be. cant believe it’s happening this month. which recon are you having done. xx
I have been to see mr morrison at addenbrookes a month ago,giving me all the imformation regarding all the different procedures and i go back next week with a decision on which one i want,i was supposed to see a specialist nurse in between to show me videos etc,i know what to expect as both my sisters have had it done as the both had breast cancer,i have no cancer but carry the gene that causes it,are you a gene carrier?? have you had breast cancer??its funny cause i am from glasgow too and thats where one of my sisters had hers done,i think i may go for the one with implant and muscle from back,as my sister in london had that done and it lookes quite natural looking…its amazing how it all changes with time,the scarring etc…x
hi yes i carry the brca2 gene, not had cancer thankfully, my surgeon is mrs eva mitthoff at the royal hospital in glasgow. i am using my stomach for recon. the videos are quite good that they show they will possibly show it next week so u are 100% sure of your decision. that’s strange that your from glasgow as everyone i speak to seem to stay down south and surrounding areas. x
I live in peterborough,go backwards and forwards to glasgow,all my family are there,seen consultant yesterday,i think the stomach reconstruction looks the best but i cant have it,even though i think i have a big tummy i do have quite large breasts and he said ive not enough flesh to recreate my size so im having the muscle from back with expandable implants,then a few mionths down the line,he will place another permanent implant,then nipple reconstruction,so i just wait for my dates now,i will be a nervous wreck as i hate hospitals,but ide rather go through all this now than maybe later,i had menapause symptoms about 3-4 weeks after oopherectomy,they werent as bad as i thought,the headaches id say were bad,and woke every night at 3 am,but no hot flushes!!! My gp was told to give me premique low-dose HRT to start with,0.3mg,so its quite low,but still get headaches so maybe ill go back and get stronger? what about you,did you have oopherectomy???
hi katybella, yes i had it and suffer terribly with hot flushes,tiredness,tearfullness etc etc, my consultant wont allow hrt till after mastectomy in feb. that is very common where diff consultants agree with hrt and others dont. however i can stick it out another month or so. i had ovaries removed in aug. im a 34jj going down to a 34c/d using tummy love lainey xx
I think when i saw that becky measures website and i saw her pics it put my mind at rest about appearance,have you seen her,youngest woman to have preventative surgery,i seen her on tv last year,her and her mother do the national hereditary breast cancer website…have u seen it??
i know her mum very well, i have spent an overnight with her mum and spoken to becky also. they are remarkable down to earth people. there advice is invaluable. they are so positive. her mum wendy hasnt had recon and she has such a strong personality. i could nt tell xx
Hi All,
I have recently been tested and have the BRAC1 gene and have decided to opt for prophylatic surgery- given that i lost my mum aged 41 to both breast and ovarian cancer and also my gran, aunt and cousin-.
I know my decision is the right one but it doesn’t take away the anxiety and emotional feelings of having these ops. I do consider myself lucky that I have an opportunity to make a decision unlike my family members and the all the other ladies who have been diagnosed.
I’m under the care of the Royal Marsden Hospital who have been fantastic and very supportive. I have read up on the various options in regards to breast reconstruction and would be really grateful if any of you would be willing to share your experiences. Also does anyone know if you are able to keep your own nipples? It may sound a bit silly but I would like to keep my own nipples if possible.
Look forward to hearing from you ladies
Liz
I am 35 and BRCA1 positive and have just had my prophylactic bilateral mastectomy with latissimus reconstruction surgery done just over 2 weeks ago. Happy to talk but also documented the whole journey through my Blog boobnoophbrca1.blogspot.com and set up a social and support site for BRCA+ and High Risk people and their families called BRCA Umbrella. We have 147 members to date. brcaumbrella.ning.com
I have 8 women in my family who have had breast cancer and 5 of them have died from it or secondary cancer. My father has had bowel cancer, his sister died from breast cancer and my grandfather died of throat cancer and colon cancer.
I had enough of worrying, waiting, living with the checking inadequate mammography screening. I had to go for surgery - for me it was the only way to be free.
Our site BRCA Umbrella has a variety of reconstruction photos open for discussion in a closed group by membership only. Anyone interested, please come and join us.
Take care all
Leigh-ann x
I forgot to say, my Blog connects to other BRCA blogs and our BRCA Umbrella site has lots of blogging women too. Experiences shared make this whole thing a lot easier to deal with.
This is my aim - to connect and share as much as possible.
x
I got results back from my genetic testing yesterday to be told I’m carrying the TP53 mutated gene, I’m now going to have double mastectomy as my risk of developing breast cancer before I’m 50 is 80%, really isn’t an option the doctors we basically telling me to have it.
I am really looking for support from anyone, my surgery will be in Glasgow, the Western I think!
I also had cancer in my lower leg last year & had 2 operations & radiotherapy so have had to deal with “Being told the dreaded news” already.
Hi all,
I’m new to this site, just been told I’ll be getting a Bilateral Mastectomy as I’m carrying the mutated TP53 gene.
Can anyone provide me on information.
Thanks in advance.
Hi taa1234,
I have put for you below the link to BCC’s publication regarding breast cancer in families, which I hope will help.
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/70
And also the link to the area of our website which talks about breast cancer in families.
breastcancercare.org.uk/server/show/nav.18
If you feel you need to speak to someone in confidence, then please do phone the helpline where the staff will be only too willing to talk to you about this. Calls to the helpline are free, 0808 800 6000 open Mon to Fri 9 - 5 and Sat 9 - 2.
Kind regards,
Jo, Facilitator
Hi Taa
Have sent you a PM.
Leslee x