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If you had or are going to have a mastectomy

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Re: If you had or are going to have a mastectomy

Hi Carol line and Susie que - Sorry for not noticing this thread sooner.
I had a right mastectomy on 24th September with immediate reconstruction. I have a tissue expander, which is in a protective mesh (?) Sling. I was told this could be done and wouldn't interfere if I needed radiotherapy- as it can be affected by rads but it's a temporary implant so could still be done. So after surgery I wasn't completely flat and still had a 'boob' shape. I've been going weekly having the expander filled and it's coming on nicely. Think I'll only need one more fill. Then I wait 3 months to have it exchanged for a softer silicone implant.
I didn't need radiotherapy in the end so can't say if that would have made a difference.
It's strange all the different views on this by the professionals, but we have to be guided by what they recommend.
Xxx
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Re: If you had or are going to have a mastectomy

Hi Susie

How did you get on with the meeting with your surgeon. I am particularly interested as I was in a very simillar position, I was told that mastectomy with delayed reconstruction was the only option in case I needed radiotherapy. They booked me in for the mastectomy of the left breast with removal of four lymph nodes thirteen days later ( 31st October).

I took it camly at the time and then felt totally traumatised. I phoned the bcn the following Monday and she booked me in to see a different surgeon. I had read on this forum about women having temporary implants when radiotherapy was planned, or having expanders to stretch the skin during radiotherapy. I said I was completly freaking out at the thought of waking ' flat'. The surgeon said she was not at all happy to give me a temporary implant as it had a 1 in 4 chance of complications,and if it got infected I could delay radiotherapy, and it could harden and have to be removed. I accepted this.

I then read about the option of an implant in a sling that protected it from radiotherapy. This was now two days before the operation and I felt it was too late to ring again. On the morning of the operation I was really really upset. I spoke to the surgeon ( who was a locum) who came to meet me just before the operation. I told him how I was feeling and that I would have wanted an implant. I got the impression he would have been happy to do so, but now it would delay the operation and he didn't want to annoy the other surgeons by changing the treatment plan. 
So I went ahead with the mastectomy. I was really traumatised for three days and couldn't look at it. However after I removed the dressing, I felt calmer and more accepting. I have a pretty post surgery bra and a knitted knocker and , clothed, there is no way to tell which breast was removed. I am completely symmetrical. I keep telling myself it is temporary. 

It has been very difficult though, and I am very keen to know what you have opted for.

Best wishes

Jane xx

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Re: If you had or are going to have a mastectomy

Susie - hope you had a useful and productive meeting with your surgeon today. 

Evie xx

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Re: If you had or are going to have a mastectomy

Susie - sorry I missed these earlier, I have just replied to your PM. Hope that helps and sorry I have repeated some of the advice I already put on this thread. I'll watch out and answer any more questions you have. Evie xx

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Re: If you had or are going to have a mastectomy

I’d really appreciate a fast response as I’m seeing my surgeon in the morning and will be expected to make my decision xxxx thanks all and big hugs
I’m really struggling with this decision
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Re: If you had or are going to have a mastectomy

Hi Evie-S I’m due to have s mastectomy on 14th November. I’m really struggling as my surgeon has tried to guide me into having a delayed reconstruction as I’m possibly going to have to have radiotherapy. I don’t think I can psychologically cope with going flat even if it just for a year. I have asked for an immediate reconstruction and have an appointment tomorrow to discuss this / I’d really appreciate your advice and your personal experiences since you’ve had your reconstructive surgery - thanks big hugs Susie
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Re: If you had or are going to have a mastectomy

Hi Evie-S I’m due to have s mastectomy on 14th November. I’m really struggling as my surgeon has tried to guide me into having a delayed reconstruction as I’m possibly going to have to have radiotherapy. I don’t think I can psychologically cope with going flat even if it just for a year. I have asked for an immediate reconstruction and have an appointment tomorrow to discuss this / I’d really appreciate your advice and your personal experiences since you’ve had your reconstructive surgery - thanks big hugs Susie
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Re: If you had or are going to have a mastectomy

Wow Jane, thanks for sharing that post - it made me cry too. There are indeed some lovely people out there.

Evie xx

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Re: If you had or are going to have a mastectomy

Thank you for your good wishes, Evie.

Also, Carol Lina, I should add that the knitted knockers are completely free! I only emailed them about ten days ago ( as I only found out about the mastectomy on 18/10) and they rushed through the order as urgent so they arrived a week later, well in time for the surgery. I also order an aqua knocker, which you can use for swimming. 
The knockers arrived in a lovely bag, with a knitted heart, and a lovely card from the knitting volunteer, which made me cry, as she wrote that it was a privilege to knit them for me, and she would happily knit more. There are some truly lovely people around, who are trying to make this ordeal more bearable

Best wishes

Jane xxx

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Re: If you had or are going to have a mastectomy

Hi Carol Lina

 

First of all big hugs to you. It's all a horrible shock and a lot to take in.

 

I had a mastectomy about 18 months ago, I had an immediate recon with an implant at the same time and then I had radiotherapy after that. I was warned about the risks but my team felt the implant option I went for (pre-pectoral) was fine to go ahead with before radiotherapy.

 

My boobs don't now match and I haven't got round to looking into nipple reconstruction yet, but I am used to my "new normal" and happy with them. I felt relieved to get rid of the cancer.

 

Janie123 makes good points about the "knitted knockers". And you can also use a prosthesis that your BCN can help arrange.

 

Please feel free to ask me any more questions on here or private message if that's easier.

 

Janie123 - hugs and get well wishes to you too.

 

Evie xx

 

 

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Re: If you had or are going to have a mastectomy

Hi Carol Lina


I had a mastectomy yesterday. I had chemotherapy beforehand which resolved the invasive tumour, but my dcis was so large they said mastectomy was the only option and I asked for nipple preservation but this wasn't possible.

I only had two weeks to come to terms with this and I was devastated and traumatised. I asked for a temporary implant at the time of surgery, but this was not possible because I will probably need post-operative radiotherapy and this has a one in four chance of causing complications.

So, at the moment, I would say I am in just a little pain, more soreness than anything. Remember this is only temporary. Apparently the nipple reconstructions can look amazing. Long term, reconstruction can be either flap surgery from your back, stomach,, inner thigh or bottom. Otherwise implants are often possible ( though I have been told it could be tricky to have implant as skin doesn't stretch so easily after radiotherapy).

I can highly recommend you contact ' Knitted Knockers'. They do fabulous lightweight prostheses, with or without a nipple. I chose the latter, and I have put a soft sports type bra on with the knitted knocker in place and you wouldn't know I had had a mastectomy,. I can't quite bring myself to look at the surgical site ( even though there is a dressing on it). But, compared to how I was feeling before surgery, I feel more upbeat today. I think it's a case of adjusting and thinking it won't look like this forever.

Best of luck to you

Jane xxx

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Re: If you had or are going to have a mastectomy

Hi Carol Lina

Sorry you are going through this and really sorry you are feeling this way.
I had a mastectomy without reconstruction at the end of September mainly because if you have rads as part of your treatment, it's considered better to wait.
My scar has healed well and is quite thin and I am pleased with how it looks, very grateful that the cancer is gone.
I still have the option to have a reconstruction at a later date, there is no time limit that you have to decide to have one. There are two types of reconstruction, either using an implant or using your own body tissue from elsewhere, from your tummy or back usually.
I hope you find the information you're looking for.
Sending hugs xx
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If you had or are going to have a mastectomy

Hey, girls

 

My doctor alread tolm I'm going to take a mastectomy  and the nipple can't be preserved. I am looking for all kinf of information to try talk to him without tears so... did you have a mastectomy and reconstruction? Which kind of reconstruction? Did you have nipple reconstruction? I don't know which kind there are here in UK. I am glad that reconstruction do exist, but having only a tatoo as a nipple still makes me cry. Even though it is better than nothing, it is still so fake that I am afraid it's not going to stop thinking about what cancer stolen from me and feeling drepressed about that.

 

Hope you all are feeling as positive as possible today.