Hi, I was diagnosed with BC the beginning of October. Last week I was told I need a mastectomy. I would like immediate reconstruction so told I need an appointment with the plastic surgeon. Last week I was told I would see them in a week or 2. It has been a week and i haven’t heard so I did some chasing and I’ve been told I won’t get an appointment until the end of November. Then it will be 4-6 weeks for the surgery. I’ve worked out that takes me to the middle of January, 3 and a half months since my diagnosis. This is seriously stressing me out. Is it normal to take this long? How long have others waited for their mastectomy with immediate reconstruction?
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Regardless whether it’s normal or not, it’s not okay. If you have to wait that long for a plastic surgeon do you think it’s an option to do the mastectomy first and then a delayed diep? That’s what I did because the plastic surgeon was not available in the time frame I needed.
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It is rubbish. I’m even more cross because I was told I would get an appointment 1-2 weeks so now to be told 4 weeks is rubbish and I still haven’t actually got a date.
What was it like having 2 surgeries? Did you have to wait long in between?
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Speak to your team as sure they will reassure you about the time it’s taking.
I was diagnosed with DCIS in August last year and advised to have a mastectomy with immediate reconstruction (DIEP flap surgery). I wanted the operation straight away, but told as it was DCIS I had a little more time to play with - I discussed this a few times as like you, did not want to wait at all.
I finally had my surgery in October - so pleased I waited (for me I had time but obviously some people may not!) as glad I had it all in one operation.
Please speak to your team about your fears and worries as they will know all about you and your case
Wish you all the very best xxx
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Thank you. I spoke to my nurse today and she said it’s out their hands and in the hands of the plastics now. All she could say was everything should be ok. It didn’t massively reassure me but maybe it’s just me being anxious.
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I didn’t but I’m in the US. It was six months. I had chemo in between though. At any rate it wasn’t fun but I didn’t want to wait to get the cancer out.
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Not sure where you are but sounds like I was very lucky living in Scotland. I was diagnosed beg of May this year. Required mastectomy and reconstruction with plastic surgeon involvement and had my surgery beginning of June surgery with breast surgeon and plastic surgeon both there. Good luck xx
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So sorry you’re going through this. I am further down the track than you (slightly different situation as I had lumpectomy, currently 2/3s of way through chemo). I found that nhs wait for surgery unbearable and if I’m honest way the worst part of my diagnosis. This is my story, sharing in case helpful @purplebunny 
. Sending love.
My advice is don’t get fobbed off by BC nurse, push for an urgent call w your surgeon now to understand your options and exactly what the holdup is. Get as detailed timeline as you can. Then call MacMillan hotline, BCN hotline who offer advice from independent professionals. Might be worth exploring switching nhs trust?
In my case I was 44, 2 little kids. Diagnosed in June with what they thought was grade 2 2.1 cm tumour, Er+, pr+ and Her-. The diagnostics were dragging (things like an mri could take 10 days). I don’t have private health care but have some savings from my job.
I ended up getting my nhs surgeon’s private mobile number, calling him out of blue and convincing him to let me self pay, so he did op privately. I’ve then flipped back into NHS for chemo/rads/hormone therapy and another lymph node op post chemo.
The op showed the tumour was bigger than they initially thought (4.4cm), actually grade 3 not grade 2 and I had some cancer cells in a lymph node. Don’t want to freak you out tho, some people have their ops and the cancer comes back as lower grade (I don’t think they really know for sure til it’s analysed). In total I shelled out £11k, a huge amount for me but instinctively felt like the right thing to do as I’d saved the money for a rainy day (and doesn’t get more rainy than this).
I felt v guilty going private as I believe in nhs, but it felt like moment to be decisive. Trying to navigate the NHS system is v stressful, suggest trying to get as much info as you can. Xxxxxx
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I’m sorry to hear about the delay. You must just want it done and over.
In the UK I was diagnosed in February and had the mastectomy with immediate reconstruction just under a month later in March (although I needed a second op in April for node clearance). My surgeon was skilled in reconstructions so did both the cancer removal and reconstruction.
Hope you get appointments sorted soon.
Try not to worry. I was diagnosed in Sep 2020 and because of other concerns which required mri and bone scan investigations, I didn’t have my lumpectomy until December. They reassured me that tumours are mostly slow growing and the wait wouldn’t make any discernible difference. The main problem is that once you know it’s there you just want it out as soon as possible so I understand your anxiety. Sending you a big hug. xx
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I was diagnosed with cancer stage 2 spread to lymph nodes. Waiting nearly 6 months to have a mastectomy, in England. repeatedly told that this is normal.
I’m sure this is not normal.
Due to have surgery in 2 weeks.
Dear Strawberrytart,
Welcome to the forum, so sorry you have been diagnosed with breast cancer we have all been there and now we are here for you.
What a long wait you have had to start your treatment, I would like to wish you health and happiness with your upcoming surgery best wishes for a speedy recovery.
I always said one day at a time, take all the help offered, feet up lots of TLC. When your feeling a little better please post and let us know how you’re feeling.
Biggest hugs Tili 
Thank you for all your lovely comments. One of the breast care nurses on here suggested I contact PALs and they have managed to get me a last minute appointment for tomorrow. I am pleased about this but now really anxious about what they will say! I’m hoping I can make a decision and get a date for surgery. I am dreading it and feel I just need to get it done so I can’t keep thinking about it!
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Excellent news, good luck with your appointment, You may already have this in hand, to make a few notes as we are all over the place at these consultations.
Thinking of you hugs Tili
HI,
How did you get on after your appointment?
I was diagnosed with invasive lobular cancer in Dec 23 and am having a mastectomy next week (March 24) however I have been told I am not allowed to have immediate reconstruction which I am gutted by as I wanted a simple implant instead of having DIEP in a years time. Which will now be my only option. I do not understand why some are allowed immediate reconstruction and some are not - I know I will be having radiotherapy but after watching Victoria Derbyshire’s diaries this week she had radiotherapy but had immediate reconstruction. I feel I could cope so much better with the mental side of this if I could have immediate reconstruction. I am 52, non smoker, very active, pre-menopausal and feeling very scared.
x
Hi there @twinkletits
I had an immediate reconstruction (DIEP) 4 weeks ago but I have learned through talking to many others that every case is different. I think I was told that radiotherapy can affect the implant (make it harder??) so maybe that’s why you’ve been advised to wait…I suggest you push them for an answer. Hope it gets resolved and your treatment goes well.
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