Decision made and surgery booked

Hi everyone

I have been to see my surgeon today and I feel like I finally have taken control of the situation. I was already told it was highly likely I would need a Mastectomy when I finish my chemo, but today I have been and asked for a Bi-lateral Mastectomy. I can’t quite believe I have done this - and I am soooo calm about it too, I never ever thought I would even be able to talk about it without crying!!!

I chose to do this as I am still quite young (34) with small children and I am triple negative and probably have the duff gene too. I don’t want to have to go through this again and I believe I am doing all I can to reduce that risk (although I know there still is a risk). Besides which I will have a matching pair and possibly a tummy tuck too. I have a fantastic breast surgeon who was very accommodating and my plastic surgeon is nationally renowned for her work - so I feel really happy about it all (well you know as happy as one can be!!!).

So it’s all sorted, last Taxotere 2nd November…Paris for the weekend 23rd November…surgery 30th November. Rads in January.

Just want this cr*p year over and done with…

Feel better for sharing that, I hope that recently diagnosed people might read this and see it can be a positive decision and you can sometimes have an element of control during this rough journey.

Love and hugs to you all

Hi Bestie
I’ll be having mine around same time as you as last Taxotere is on 30th Oct then not sure of date yet for surgery. Gonna ask surgeon/consultant about double mast but not sure it will be done at the same time if at all. I am having genetic testing at the moment and have appoint. coming up soon to discuss so will see what the outcome of that is. Apparently not having reconstruction at same time but gonna quiz them on this when I have my appoint. Also having rads - guess will be in January sometime for 3 weeks.
Anyway best of luck and good to know there are others at similar stage to me.

Best of luck to you both. Onwards and upwards eh!

Margaret x

Thanks v much Margaret and yes onwards and upwards - us women are strong we will be ok!

Hi Ali

Admire your courage and spirit very much. Good for you. Enjoy that weekend in Paris.
Wishing you all the best


Bon courage.
Might run into you on the Champs Elysées as son & family coming over that w/e.
Shirley in France

Hi Rebzamy - all the best for your consult, I had loads of questions written down, but shouldn’t have worried as my Surgeon is so on the ball, she told me everything on my list and rather took the wind out of my sails!!! I am having the skin expanders put in - so I can have ‘something’ there whilst I wait for permanent recon - can’t have it cos of the Rads in January.

Merci Shirley.
Do you live in Paris? Lucky lady if you do - I absolutely love it there, we are going on the Eurostar which I think is the best thing ever, we flew over a couple of years ago and CDG airport was just a pain.

Au revoir.

Hi Bestie
I’ll def ask about the skin expanders thanks for that - I think I’m not having the reconstruction at the same time for various reasons - 1. same as you. 2. very long operation if done at same time. 3. I think they want to make sure they’ve got everything out before they go ahead.

Have a fab time in Paris and do keep in touch and let me know how things are going and I’ll do likewise.


Hi Ali - It does feel good when you make a decision and take some control. I saw my surgeon today and have just had one mastectomy with recon and am going for the other one in Feb - just need to confirm date. I had bc 4 years ago and had lumpectomy but it reared its ugly head again this summer but luckily was caught early so no need for chemo again. I am just fed up with it invading our lives that can’t wait for the other one to go so that a lot of the worry will go. No more mamograms!!!
You mentioned genes- my onc thinks I have a duff gene that has yet to be discovered as she thinks most women under 40 have duff genes (I was 34 and am now 38).
I also had my ovaries out 3 years ago as hormone positive.
Good luck for the last chemo - that is a celebration in itself and have a great time in Paris.
We’ll all be looking like Jordan by next summer!!!
Take care
sarah x x x

Hi Sarah
What a nightmare, you must have been so scared when it came back. It is what frightens me the most, mainly the thought of doing the chemo again I must admit…so I am pleased for you that you didn’t need the chemo this time around.

My Onc mentioned ovaries, but not b’cos I am hormone positive (I am triple negative) but b’cos of the duff gene - I don’t really understand all that, but he said higher risk of ovarian cancer IF i have the wonky gene. Will organise testing at some point, but one step at a time hey?

Think Jordan might be a bit optimistic, the skin expanders they are doing for me as a temp recon will only give me an A-B cup, hmm not quite what I am used to and certainly no Jordan either!!!

Love and hugs

HI Bestie
Well done for taking some control. I hope the op goes really well. I have asked about double masectomy as like you triple neg and want to do all I can to make sure it wont return as like you 34 and 2 small babys but the surgeon said that it was not appropriate at the moment as my initial lump presented itself as a cyst with cancer cells and 11 lymph nodes involved. So I have had lumpectomy and node clearance. I will however pursue it with onc further down chemo line. They have also said they are not going to test for duff gene as no one else in family ever had cancer but do you know if I can insist or pay to have done privately?

Have a great time in Paris and enjoy every moment

Take care and well done


Hi C

Dunno about forcing the issue re: gene testing, I told my Onc that I had no family history that we know of, but he still seemed prepared to do it…but then as is often the case, different Primary Care Trusts have different rules. Try pushing it and see where it takes you, or talk to your BCN maybe?

Thanks for your reply and your kind wishes, will certainly enjoy Paris, I can’t wait!

Love and hugs

Hi Ali

Glad you got on good at you appointment yesterday - and glad they have agreed with your decision. Must feel good to be in control - thats the worst part I think is not being.

Have a fab holiday in paris - I’m sure you need no encouragement there.

All the very best to you
Love and hugs

Hi Ali,

good on 'ya!!! I’m so glad you have decided to go for the double whammy and that your surgery is now booked. Thats a brave step you’ve taken, but one I’m sure you won’t regret.

So, onwards and upwards for you now young lady! Paris sounds awesome, I’m sure you’ll have a great time. I’m soooooooo jealous!!!

‘Ditto’ to wanting this crap year over and done with!!! I seem to have been saying that for ages now. Don’t want to wish my life away of course, but you know what I mean?

Take care mate,


Well done Ali for making this tough decision.

I am actually thinking the same, just a question, are the skin expanders something that is generally on offer?

Cecelia. x

Hi Cecelia

Well I think so - but as ever I guess it depends where you live…but reading the BCC literature it describes them in the booklet so that would make me think it is quite common.
I know Julie41 has just had it done, but dunno where she lives. I am at Norfolk and Norwich Hosp.

Hope that is of some vague help!


Great thanks, I’m in London at a hosptial which seem very open to most things luckily so will be sure to ask.

Cecelia. x