Private reconstruction

Hope that makes sense - I know we are all different and I can’t help feel bad - like I should be ok without boobs 

I could have written this! 

so I had mastectomy and at the time of left mastectomy I was waiting for my gene test result. They said they would not remove a healthy breast when I asked for that one to be removed at the same time. 

my gene test came back as brca2 so they said they would remove my other one after chemotherapy. I’m slim so not eligible for diep flap surgery, I would like implants. My consultant said I could not have implants if I was having radiotherapy. Radiotherapy has been recommended so I will obviously have it. 

I have done a lot of research and found that you can have a tissue expander which is a temporary implant before radiotherapy. 

my worry is they won’t agree this so thinking should I go privately and get reconstruction at the same time as removal of my other breast. The bc nurse said radiotherapy keeps working for up to a year which is why they don’t do immediate reconstruction. 

I’m not sure what to do like you, I know it’s for the best but I want to feel like myself also. 

Hi, my path has been completely different but some of my experiences may provide a few bit of insight for consideration.

I had immediate reconstruction. I opted for implant rather than flap as recovery was quicker. I needed to started chemo as quickly as possible. I then went onto radio. What I think you may need to factor in is the fact that radio destroys the implant (I knew this but it was the best option for me). The implant basically goes hard and mine is moving up. Correction surgery cannot then take place until 12 months after your last radio session. I am due to have flap surgery in september to fix my implant situation.

As I said Im aware our pathways are different but I thought I would point out the radio/implant situation.

Wishing you all the best going forward x

Thank you, that is interesting and makes sense why i have been advised what I have. 

It’s such a difficult time- so many thoughts racing through our heads. 
I had 15 sessions of radiotherapy and my surgeon said due to this the expander wouldn’t work in that side either. 
I am not slim and have enough fat for 2 boobs (diep flap) but I can’t wait 4 years - I have already been re-called following my 1st surveillance annual mri. ( too stressful) 

have u come to an answer, because at the moment I really can’t but my targeted therapy ends soon so I feel I need to decide

I know, I’m going to have a chat with my consultant about it. 

Have you finished all your treatment now? When was that? 4 years is a long time to wait. Is that from now or end of treatment? There is no harm in going for a private consultation and seeing what they say. They said 12-18 months after the end of treatment to me. 

Sorry to hear that you were recalled after your MRI, I bet that was frightening. Was everything ok? 

I’m on Olaparib (targeted therapy) due to finish in September.  They said approx 4 years and I was referred in January and haven’t even got on that waiting list yet. 

where are u up too? 
no your right, I have booked a private consultation, even a 3 month wait for a first appointment with them. 

everything was ok- but as u say scary thoughts came thick and fast. 

I haven’t actually spoken to someone who has BRCA and had cancer too. 
thank you so much for your response x

I’ve heard of olaparib, I was going to mention that drug to my oncologist depending what the situation was with the reconstruction. 

Can’t believe the wait, I guess they think now the important bit is done but this is important to us to make us feel like ourselves again. 

So I’ve had the mastectomy and had 9 weekly sessions of chemo, paclitaxal and carboplatin. Carboplatin is for the brca, not sure if you had that? That is finished now and 2 weeks ago I had my first of 3 three weekly chemo (EC) then they want to remove my other breast then radiotherapy and there was mention of going on abemaclib. I have told them I’d like my ovaries removed to reduce the risk further. 
I have a review meeting with the oncologist so will find out more then. 

Did you speak with clinical genetics? I was referred to them months ago and appointment came through for tomorrow but I cancelled as it clashed with my oncology appointment. 

Same! Always here to chat anytime xx 

I had 3 weekly EC ( 3 lots) than 9 of pacitaxol- no carboplatin though. And then the radio mentioned before.  I have my ovaries and fallopian tubes booked to come out November time. 
I have spoken to genetics yeah, found them very good. Do you have children? My daughter has been tested ( no results yet) and my son doesn’t want to be yet.   My sister has the gene too ( she’s a couple years older than me). 
not sure if there is a way to chat on here without posting on the forum as such? Do u know? 

Oh wow we had very similar treatments then. 

I have a 5 year old so nothing to worry about for a long time for her at which time hopefully things will be different, better drugs etc. 

I think you can add someone as a friend then send a message that way. Let me see if I can do it.