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.

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

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

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

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

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

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

Hi Carolina & SusieQue

 

I am 7 wks post op has mx & node clearance left side.  I has immediate recon with expander implant, I am due to start chemo 19 th followed by rads a S hormone therapy.  My consultant was happy for immediate recon as she knew I was getting married in sept.  I am aware thar rads can affect the implant but I didn’t want to get married flat.  Implant only option as told not enough flesh to do diet etc.  My mx was a skin sparing one with loss of nipple.  It’s a fab job amazing small amount of scarring, I didn’t have right side match ( I was asked but thought enough going on without that).  I am not symmetrical but no one would know when I am clothed.  I have the option of this at later date and same with nipple being tattooed.  Hope this helps I don’t regret this decision, I do think different surgeons have differing opinions but your mental well-being is important too.  Remember it’s your journey Hope this helps hugs to you all ?

Hi
I had an mx on 24th September too, but without reconstruction because of the chances of reconstruction. My initial reaction was that I wasn’t bothered about reconstruction; as long as I was alive, that was all that mattered. However, my wonderful surgeon has done skin saving surgery because he was sure I would feel differently afterwards (I’m fairly young).
I had my softie from the hospital to begin with, but I’ve now been fitted with a proper prosthesis and it looks and feels fabulous. I braved it out and went for a bra fitting the day before I got the prosthesis and I’m so glad I did, I am down a band size and up a cup size to the size I normally buy and it’s made such a difference.
I still don’t know if I’ll have radiotherapy, waiting for a medical trial to decide, but should know quite soon. If I do, I can have reconstruction and DIEP after a year, but I’m very happy at the moment.

Jane, I am really, really sorry for didn’t have replied you before, as you answered me just one day after your mastectomy and was feeling down. I’m really sorry. I haven’t replied anyone for long time because I have been working over time so I don’t have time to think about it. In the evening I usually feel bad and go to sleep pretty early.

How are you coping now? How are you in general? How is going your treatment, doing radiotherapy?

I’m very greatful for your tips about the prothesis. It’s really helpful and I’m glad they were able to do them for you in time. Also their card made me cry as I know how it’s important for us and how good heart someone needs to be to do that for free. When this hard time finish to me I’ll find a way to make people like us feel at least a little better too.

I wish you a quick recovery :slight_smile:

Susie, I hope is everything going well with you. How was the surgery yesterday? What did you decided? I’m at the same position as you and know the feeling :frowning:

Evie, thank you so much. I’m happy that you’re fine with your new normal, as you said. It’s what matters, how we feel about ourselves. :slight_smile:

Chocxie, Janie, Evie, helenann, bazzies, I really appreciate your answers and I really sorry for haven’t replied before. I just started working a lot so I wouldn’t turn myself crazy. Write in English is so hard to me that I couldn’t find time to answer before be very sleepy after work.

I’m in the same shoes as some of you. Today my doctor told me I’ll need rads (he said before probably not) and because of that he wouldn’t be able to make reconstruction at the same time the mx. My nurse asked him about the spander(?), But he told it’s has some kind of metal(?) On it so it’s not good to have rads. I wasn’t prepared to that since he made me think it would be easier and I wouldn’t go home flat, so I started crying so much that they booked another appointment to discuss my options tomorrow.

Thanks Evie, I will.

Jane, you’re a lifesaver. I just have a look at knitted knockers since I wasn’t told anything about prothesis neither about possibly mastectomy bra. When they start to talk about all the possibilities (none of them a good choice) I can’t think straight and I can’t remember to ask questions.

I am really glad that you’re feeling better Jane. My mx was booked to December, but today they rebooked it to 28 November and I don’t have even a prothesis. I’ll try to remember, as you said, it’s temporary and the part they want to remove is sick and it’s better to get to rid of that.

I reread what you have said about the skin doesn’t expand easily after rads. I’m terrified about it. They didn’t told me anything about it and they already told me I’m too skinny to take kind of surgery other than the implant (and I don’t want to have a bigger recovery time and more scars). The more I think about it, the worse I feel.

Are you having radio? Did they already decide anything about your reconstruction?

Sorry for so many questions and sorry for haven’t been here for you after your mx :frowning:

Hello everyone.
I’m having mx & axillary node clearance on right side next Tuesday (Nov 20th) and have chosen not to have immediate recon as I’m due to have rads - altho my surgeon & onco said it wouldn’t matter either way. I just finished chemo on Oct 26th (3xEC & 3xDocetaxol both 3 weekly) so I was kinda surprised that the op was so soon (5 days after the 21st day of the last cycle).
I think the biggest shock for me will be having so much time off work - I worked all through my chemo and don’t ever use all my 20 days annual leave, which is probably a good thing as I can use the extra days left for recovery.
Can I ask for anyone’s experience of recovery time? I need to prepare for my finances as I’m on a zero-hours contract and won’t get paid after my 2 weeks leave is up.
Thanks in advance x And apologies for the long post x

Helenann, Thank you very much for sharing your experience. As you said, to you and to many other ladies was told that they can put the tissue expander implant even before rads. Even my BCN told him it, but he told the radiologists don’t like it because there are metal in it(I’m very confused about it). I have another appointment before the surgery and I’m going to ask about it again.

Thanks again, Helenann :slight_smile:

Lamstillme, I’m sorry you’re going through it and I’m sorry I’m not able to answer your questions, but I’m sure other ladies here can help you. Big hugs to you.

Thank you for sharing your experiences, it’s really encouraging to hear that everything went well for you and that your recovery times were quick.
I don’t drive and I live only 5 minutes walk from work so at least I don’t have that to think about. I’m a Receptionist at a Business Centre so I don’t have any heavy lifting or hard labour to do so I’m lucky in that aspect. Also they’ve been very understanding at work and my boss has said that I can go back when I’m ready and that I can go home early when necessary, especially as it’s usually so quiet on the run up to Christmas. I’m so lucky and I count my blessings every day that I have that kind of support around me and that I’ve been well enough to work throughout my chemo.
I guess I’m just a little apprehensive about my op as I’ve never had one before and I don’t know how my body will react to the anaesthetic. I felt the same way before I started chemo so I guess my body can take more than I gave it credit for.
Thank you again ladies xx

I had a mastectomy 30 years ago with a LD reconstruction and the result was excellent - I’ve been told by many people that this is the most successful (cosmetically) type of reconstruction. I’ve only just needed to have the implant changed (done at the same time as the lumpectomy on the other side) and I’ve now had it for more than half of my adult life - I can’t really remember looking any different.

 

Good luck!