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Reconstruction options

11 REPLIES 11
Member

Re: Reconstruction options

Thank you, Evie-S ❤

Community Champion

Re: Reconstruction options

I hope it helps you both to chat things over on this forum - where everyone just gets what you mean without you having to explain. It's anonymous so you can be as honest as you like, whereas you might not feel able to do that with friends or family, especially if they haven't been through this.

 

Jubelu - I totally know what you mean about people thinking we are fixed once treatment is over, just as if we had had a broken leg. I'm not sure when you had your treatment, but I do hope you find your "new normal" - whatever that means to you. Probably an overused phrase, but we are changed after a shock like we have had. Don't beat yourself up that you haven't got there yet, it takes time.

 

Lucy - yes, our minds can run into overdrive when we are on our own, I know that feeling! Good that your friend was so helpful. Keep chatting on here and ask for as much reassurance as you need.

 

Oh dear - I offered to listen not try to advise/fix! Sorry. xx

Member

Re: Reconstruction options

Hi Evie-S & Jubelu 

 

Evie, thank you for your reply, I will definitely keep you in mind going forward. 

 

I saw my GP this morning about some side effects from the hormone therapy and told her how I’m feeling. Again she’s reassured me it’s all normal (I seem to need constant reassurance). After, I saw my friend that came with me last week just to talk over some of what had been discussed. Sometimes when you’re going over stuff on your own things multiply and I needed someone else’s perspective. We had a really good talk including what she thought about how i look now, what would she do etc and it really helped. So for a while I feel better but unfortunately that doesn’t last for long! 

I hope you’re both having a good day 

and thank you again xx 

Member

Re: Reconstruction options

Thank you, Evie-S. I often forget this forum is here. It's easy to feel isolated when no one else you are close to quite understands, even though they try. People want you to be fixed, back to normal. But I think the old normal is now gone forever. And I don't know what 'fixed' or better looks like. Not yet, anyway. Here's hoping ... x


@Evie-S wrote:

Lucy51 and Jubelu - big hugs to you both. You both make very good and wise points about body image and our mental health.

Lucy - I know you said you don't want an implant, but if you would like any info about implants I'm happy to chat or answer questions as I had one put in almost 3 years ago.

I'm also happy to listen if either of you wants to offload.

Best wishes to you both

Evie xx


 

Community Champion

Re: Reconstruction options

Lucy51 and Jubelu - big hugs to you both. You both make very good and wise points about body image and our mental health.

Lucy - I know you said you don't want an implant, but if you would like any info about implants I'm happy to chat or answer questions as I had one put in almost 3 years ago.

I'm also happy to listen if either of you wants to offload.

Best wishes to you both

Evie xx

Member

Re: Reconstruction options

Ditto to all you have said. It's been, still is, a tearful day for me, too. Hugs to you, too xx

Member

Re: Reconstruction options

Hi Jubelu, 

im crying again!! Been a very tearful day but reading your reply made my cry as I recognise so much of how you’re feeling. 

I too was a DD and now an A and yes the loss of sensation is devastating. 

Ive has some counselling with a charity but I don’t think it has helped that much. I felt a bit ‘talked out’ when that finished so don’t feel ready to start again but will do at some point. 

The best description I can give to how I feel is consumed by grief and all the things I’ve coped with in the past have come back at me. Some days I find the smallest things so difficult to do.  I’ve got good friends & family around me but everyone wants to tell me how to fix me. I wish I had the friend who just listens and is just with me. 

I would love to know how you get on and just want to send you a huge hug xx 

Member

Re: Reconstruction options

Hi Lucy51,

 

I really believe that unless you have been through this, you can't really understand. I ha e had people say I shouldn't worry what I look like, 'at least you're here...' But it does matter. It's not just some silly vanity, it's so, so much more than that. I am seeing a clinical psychologist and to be honest I think it will take a very long time for me to feel anywhere near emotionally well. As for my surgeon, I don't have the emotional energy to complain  and follow it through. It's as mu h as Ican do some days just to hold myself together. Of course, I have better days, too, but life will never be the same again. Not even for people who have had the least invasive treatments. BC changes everything.

 

I really do wish you well and I am sure you will come to the right decision for you. And it will take time to adjust to the 'new' body. I was a DD and now struggle to fit a B cup. Have just ordered a couple of As as it's quite obvious through many of my clothes because the cup wrinkles. My greatest grief is, however the loss of sensation ...

 

I'm sending you very best wishes for the most positive outcome possible through all this.

Jx

Member

Re: Reconstruction options

Hi Jubelu,

thank you so much for replying, I’m so grateful to read someone else’s perspective. 

Ive thought about nothing else for a week and as I haven’t got anyone to talk it over with (who knows what all this is like) I’ve got myself very upset about it all. 

I cant believe what that surgeon has put you through, that must be malpractice surely? To do a reduction with little to no discussion is just terrible. My surgeon did discuss it thoroughly but I’ve ended up smaller than I thought. I know its ridiculous but I’ve struggled as much with that as I have everything else. I can’t complain, he’s done a very good job, everything is very neat and only looking closely can you tell but going from a large chest to how I am now is very hard. 

Since finding out I needed surgery etc all I’ve heard is bad news about implants and if I’m honest I really don’t want one. 

I have thought exactly the same as you regarding another surgery. I’ve had 3 others non cancer related and always coped but haven’t said it to anyone as I know they think I’m mad. I really felt I was being pushed to do nothing and accept how I am. I don’t know whether that’s because at my age and just being pretty ordinary they’re wondering why I’m bothering, which I’ve questioned too. I think I’m very realistic and realise they won’t match and I won’t be the same but I won’t have what I have now which I find very hard to deal with. 

I was offered the Diep as immediate recon but was warned that it may not be offered for delayed. Shortly after the funding was cut so only offered on immediate recon. With the TUG flap there maybe a problem but if I decide on that I’ll see what happens. 

I really hope you get the Diep even if you have to travel so far for it. I ended up with the tummy tuck & huge scar but the recovery really wasn’t bad. My advice would be to do very little for at least 2 weeks after to really give it time to heal. 

 

Thank you again for replying, it’s really helped me, bless you xx 

Member

Re: Reconstruction options

Hi Lucy51,

 

I had immediate reconstruction with an implant. The surgeon told me that was the only option available (even though I hated the thought of an implant) as diep flap is too expensive for the nhs and that it isn't performed anywhere now for that reason. I later learned that isn't so. Due to infection, the implant failed. I had a reduction on my healthy breast at the same time as my initial surgery. Reduction was mentioned almost in passing. I had no idea what was involved. I am left now with a heavily scarred breast that is three to four cup sizes smaller than before (again never discussed with me), no sensation in the nipple and to top it all, the breast is now a very peculiar shape. I cannot imagine being left like this. It's all more devastating than the cancer diagnosis. At least there was no control over that ... I have been referred to a different surgeon in a different unit two hundred miles away, but by the time I have an initial consultation I will have waited almost six months. There will be waiting lists after that.

 

Ican fully understand you wanting to have reconstruction. I hate wearing a prosthesis and am self conscious all the time. I'm hoping for diep. If that weren't possible, I'm not sure what I would do, so don't envy you your decision ... Perhaps having the time to reflect  is the wisest move. Timecan shift perspectives. As for another big surgery, to my mind, I have come through one, well three when you count the extra ones trying to sort the complications out, and am still not put off going through more if there's a chance to have a reconstructed breast at the end. Although I don't want to go near an implant ever again, it would still be preferable to the status quo. I think for you, you will know deep down what you want and you should go for that. It's good to take the time to reflect and to be fully informed,but at the end of the day it's your body and your decision. I hope you come to one that you are happy with and that all goes smoothly. Xx

Community Manager

Re: Reconstruction options

Hi Lucy51

 

Thanks for your post. Hopefully other Forum users will respond soon. In the meantime, if you'd like to talk things through our breast care nurses are available six days a week - Mon-Fri 9am-4pm and Sat 9am-1pm. The free phone number to call is 0808 800 6000.

 

Best wishes

Nik

Forum admin

Member

Reconstruction options

Hi

i had a meeting to discuss my reconstruction options today. I had a skin sparing mastectomy which really doesn’t look very nice but is better for recon and as the surgeon pointed out to me isn’t flat, which is how I see it.

 

I’ve struggled so much since surgery as I was supposed to have the Diep but it failed due to previous surgery and I also had a reduction to my good side. 

The surgeon discussed liposuction, remaining as I am, an implant or a TMG/TUG flap (from your inner thigh). It was a really good discussion and the surgeon gave me all the pros and warned at length the cons of each procedure. By the end of the appointment I felt happy with how it went and he’s given me 4 months to think it over and decide.

 

I went with a good friend who did see how the surgery has left me, I haven’t shown anyone until now. My friend seemed to be steering me to staying as I am and asked why do I want recon? Ideally I’d like the TUG as I don’t want an implant but I think my friend is worried as it’s another big op. She pointed out I’ll have scars on my legs and could be misshapen after and the surgeon did ask how would I cope if this failed.

 

I’ve since been thinking why is this so important to me? I struggle with how I look, I don’t want to wear a prosthesis for ever and really I’d just like to feel like me again, if I can remember what that was. Since being home and thinking it over I realise I’ve got a lot to decide and still a way to go yet, I was hoping for an end in sight xx