What to do following second mastectomy - advice needed

[delly]

Hi Linda

I don't know if you're still around on the forum.

I'm just sooo interested to know how things went for you with regards to your dilemma.

Have you now had your 2nd recon? If so, what type of recon did you have done? And are you happy with it?

Hope you're okay and to hear from you.

Delly xxxx

[Linda987]

BluebellTime and susie95

Thank you so much for your responses. I’m sorry I’ve not replied earlier but, I’ve been trying to come to terms with the situation I’m in. It’s coming up to a year since I had my surgery and I thought (perhaps naively) that my life would be back to normal by now.

Your replies are brilliant and have made me feel like I have some options regarding surgery. I’m really struggling with the thought of having the two types of reconstruction they’ve suggested (muscle from my back is a definite no, and the thought of taking muscle and fat from my inner thigh is scary as well), so when I see the surgeon, I think I’m going to ask him whether there are any other donor sites that could be used, also what else he can tell me about implants. It’s great to hear that you have both got on well with your implants, so I think it’s worth me asking him more about them. I really didn’t think my boobs would ever give me this much trouble!

Thanks again for getting back to me.

Linda

[BluebellTime]

Hello Linda, so sorry you are still wrestling with this decision, thought I'd just add a bit about my implant. Your surgeon being "shocked" is really not very helpful - I suppose if their job is to do reconstructions, they feel at a loss if someone questions it (and some perhaps get a bit obsessed about symmetry!).  Its your decision so try to do whatever you feel is best for you, I found the nurses on here were brilliant at talking through options in an informed impartial way. My implant and natural breast look well matched when I'm standing up or lying flat and very good in bra or bikini. But the implant does not change shape when you move the way a natural breast does so, if I lean forward for example, I get some creasing or puckering of the skin across the top of my breast, which does show when naked. I wear mastectomy bras because they give lovely support to the implant and keep it comfortable. I am a C/D cup. I'm very happy with my implant, although it was the only choice I had. I also followed up with a surgical nipple recon and an areola tattoo which looks great (and still does 5 years on). Hope this helps - do ask if there is anything else. Good luck Mo xx 

[susie95]

Hi Linda

Sorry to hear you now need another mastectomy and that you're unable to have the type of reconstruction you'd had before and were happy with. It also sounds as though your surgeon isn't being particularly helpful.

I had a left mastectomy with implant 10 weeks ago. I wasn't given any other choice of reconstruction due to Covid restrictions and, having waited over four months for my operation during lockdown, I was happy to have anything to be honest. I would have gone flat if need be, just to move on with treatment and get the nasty bits away.

I'm really pleased with my implant. I'm fairly small (B cup) but also oldish (62), so slightly droopy - or "teardrop shaped" as they so sweetly put it! The Letrozole I'd been put on during lockdown worked like magic and reduced the tumour to the point where I had a skin and nipple saving mastectomy so that could affect my positive views on the reconstruction. The new boobie looks and feels exactly the same, except firmer and fuller. Looking in the mirror, I have a perfect pair although the reality is my "natural" boob is slightly smaller but that's always been the case for me. The real difference is that the new boob feels nothing like my natural one - no feeling in it at all and very firm. I am, of course, still early days but it does feel as though all the swelling has gone down and I'm fully recovered. Another plus side - only one wound to look after.

I don't think they can ever promise an exact match but lots of ladies have a slightly mismatched pair anyway. The (very few) family and friends who have seen me topless are amazed at how natural they look and what a good match. I think there are different types of silicone and slings/matrices to hold them in place so I'm sure your surgeon could find the best option for you. 

Good luck with your decision, I'm sure you'll come to the right one for you. The implant, for me, has been good - easier surgery and recovery time and pleased with the results. 

Hugs

Susie x

[Evie-S]

Hi Linda - I hope others will come along and share their experiences with an implant to help you.

One thing that strikes me from your message - you say your plastic surgeon was shocked at the idea of you having an implant, and also at the idea of you going flat, but did he advise what he would do in your position, now that you can’t have a second DIEP?

You could speak to the nurses on here to get another opinion?

Big hugs - please keep chatting as and when you need or want. Evie xx

[Linda987]

Evie, Thanks for getting back to me.

I think that one of the problems has been that my treatment has been split across 2 hospitals, so it's never felt like there's been anybody overseeing my care.  The care from my local hospital has been terrible (they even got my initial diagnosis wrong!).  My plastic surgeon at the second hospital has been really good, but he was visibly shocked when I mentioned having an implant this time because he said it won't match my DIEP on the other side, and he was even more shocked when I mentioned having everything removed and going totally flat.

But in truth, I don't know whether I'm brave enough to go flat.  When I was first diagnosed, I dealt with it and got on with what had to be done, so I can't understand why I'm struggling so much now.  I suppose it's because my preferred option (the DIEP) has been taken away.

It would be great to hear from people who have had implants/an implant, particularly how it compares to their "natural" breast on the other side.

Thanks again for getting back to me.

Linda

[Evie-S]

Hi Linda - I so understand what you are going through. I remember very well my first appointment with the surgeon when we looked at options and I just felt that there wasn’t a good option for me - at that point he had said that he didn’t think I could have an implant if I was going to have radiotherapy. But I felt as if a magic wand had been waved when he came up with the pre-pectoral alternative. It’s not perfect, but it’s right for me. 

Please feel free to chat with me/others on here about the various options if that helps - sometimes just chatting helps to come to a decision, as long as it takes to help you sort things out in your mind.

But also don’t be afraid to just be honest and tell your consultant exactly how you feel and that you would like his help in making a decision. They are the experts and should be able to guide you to the best decision for you. It’s a bit of a cliche, but try asking him how he would advise his wife/mother/sister (depending on his age!) if they were sat in your shoes.

Evie xx

[Linda987]

Evie, Thank you for getting back to me.

I am really struggling with the decision I have to make - to the point where I feel like I am going mad.  I feel like they've taken away the one option I felt most comfortable with.  I want someone to wave a magic wand and come up with something else, but I doubt that will happen.  I keep trying to tell myself that I just need to get through this next bit, but every morning when I wake up the reality of the situation I'm in hits me all over again.  I'm dreading my next appointment with the consultant because I'm worried he'll be expecting me to have made a decision when, in reality, I still feel like I am in no-man's land.

Take care and thanks for getting back to me.

Linda

[Evie-S]

Hi Linda - I totally get what your frustration. I also asked for a double mastectomy and was told that they wouldn’t do that. I have since read about people who did get a double, but it seems that they had to jump through a lot of hoops to get that result. I do understand that surgeons don’t like to do extra surgery but.......

I have had my implant about 3 years, it is a “pre-pectoral” one, so sits on top of the muscle rather than underneath it (you might want to google to find out more). It sits in a sort of sling. Touch wood it’s been fine. It is more rounded than my real one but I use a thin breast form in my bra to even things up. Reconstruction is a very personal issue, there is no “right” answer, just what is right for you. I was more focussed on a quicker operation and recovery, but I know the own tissue gives a better look.

I wonder if you have thought about chatting to a counsellor about your experience? I had some counselling after I finished treatment and it really helped me to deal with what I had been through. I found myself going back over old ground and wondering “what if”..... and that really didn’t help. Of course I am more than happy to chat on here with you if that helps. 

Evie xx

[Linda987]

Evie, Thank you so much for your response.

I can't help feeling that if the hospital had let me have both removed a year ago, I'd now have two reconstructed breasts and wouldn't be in this position. I just can't understand why they don't, or won't, see the bigger picture to stop people finding themselves in this situation further down the line. Seeing the consultant and being presented with my options has made it feel very real and I keep wanting to cry.  How long have you had your implants? Have you had any problems, or have you generally found them to be OK?

Thanks again for getting in touch.

Linda

[Evie-S]

Hi Linda - I’ve just read your posts and so sorry that you are in that situation. Cruel is the right word for it, but I hope you will find the right solution for you, even if it isn’t perfect. I’m not sure I can advise much further - but I wanted to say that BluebellTime has sent a great reply, and I too have an implant if you would like any further info or to chat about implants. Mine doesn’t match but I’m happy with it and you would never know when I’m dressed. Please keep chatting on here if we can help you to come to the right decision for you.

My best wishes and big hugs, Evie xx

[Linda987]

Mo,  Thank you so much for getting back to me.

I suppose I thought that by having a mastectomy with the Diep reconstruction, I was doing all I could to prevent me needing further surgery.  To be having a further mastectomy less that a year later, but with less options for reconstruction, feels very cruel.  I dealt with my initial diagnosis well enough, but this has really knocked me for six.  Further to your response, I think I'll ask a bit more about having an implant when I see the consultant next time.  Thanks again for getting back to me. Linda

[BluebellTime]

Hi Linda, sorry you have this difficult decision. I'm sorry I cannot answer your main questions but hope others who can will be along soon. I just wonder why your consultant is so negative about an implant? Lots of us have one implant and one natural breast (I've had mx with implant recon on my left and a 2nd primary on the right which only needed lumpectomy). True, they do not move the same way or match perfectly, but i didnt have the option of a flap recon. I'm very happy with how I look, you can see no difference in a bra or bikini, and for me it's far better than being flat.  Good luck with whatever you decide. Love Mo xx

[Linda987]

Hi, I was diagnosed with breast cancer around 12 months ago and had to have a right mastectomy.  I asked if I could have both breasts removed, but was advised that I could not because there was no need.  To prevent me being lopsided, I therefore opted for a Right Diep reconstruction. At the same time, my left breast was reduced. The operation itself went ok, but I had major problems with skin necrosis and healing on my Diep side.
However, when the tissue from my left side was examined, it showed that I also have issues on that side and I am now in a position of having a second mastectomy - this time on my left side.
The problem is - what do I do with it?
I have used my abdomen and so cannot use it again for further reconstruction;
I can have reconstruction with tissue taken from my back or inner thigh, but I do not feel comfortable with either of these sites being used;
I could have an implant on the left, but my consultant has said it will not match my right Diep and so I could end up with a "bad match";
Or should I cut my losses and go flat on either one side, or both?
I feel like I only had one shot at reconstruction and now it's gone.  Why on earth didn't they let me have both breasts removed in the first place?
Any advice would be much appreciated, especially people's experiences of going flat, or having reconstruction with tissue taken from their inner thigh or buttock.