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Single mastectomy

17 May 2019 19:53

I have invasive carcinoma in my left breast and the mass is pretty large, measuring 8cm x 5cm x 12cm. I am to be getting a mastectomy in a couple of weeks time. Thing is, although I'm not a particularly large lady, I have enormous boobs - 36H. I'm not going for reconstruction because I just don't want to, but I am terrified that I'm going to be left ridiculously lop sided, almost comedic. Cancer nurse assures me they can do me a prosthesis this size, but I'm thinking it will be heavy and massively uncomfortable. Does anyone else have a single prosthesis this size ??

I'd heard of women getting their 'good boob' reduced to make it less obvious, but apparently this can't be done at the same time as the mastectomy and is have to be referred to plastic surgery further down the line for this.

Any experiences much appreciated xx

Single mastectomy

18 May 2019 23:11 in response to Mammaof4

 

Hi Mammaof4,

I have had a double mastectomy without reconstruction. I was a size 44D and the lady fitting my prosthesis insisted on sticking to this size, as she said that I would look different otherwise. That was 10 years ago. I have had several prostheses since then and now have a selection of different sizes and different materials. The silicone prosthesis are the nearest to your own breasts, but they weigh a ton, even the new lighter weight ones. There is a large range of sizes available.

Have you heard of Knitted Knockers? This is a charity which will knit you a pair of boobs in your original size. They are a knitted outer, filled with bath scrunchies. They are beautifully presented and are hardly any weight. They are also ideal for swimming. I have now discovereed what works for swimming, but had a number of very embarrassing situations to start with!

Have you got a date for your mastectomy yet? I hope that it all goes well.

Do please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

 

Single mastectomy

20 May 2019 16:25 in response to Jolamine

Hi Jolamine,

Thanks for coming back to me. I can't begin to tell you how distressed I am about this. I've cried every day since Thu when they told me I'd have to live with one 36H boob. Honestly,  I know it's dramatic and is totally ridiculous, but I'm more upset about this than I am about the cancer. My boob is super heavy. There's no way a knitted knocked is going to match it under clothes. I'm going to feel like a complete freak, and I know, I just know, my mental health is going to collapse if they insist I live like this.

I've thought about nothing else these past few days, and I've concluded beyond any doubt that what I want is a double mastectomy, but I don't know whether the NHS would agree to that. If I had normal sized breasts it wouldn't be such a traumatic prospect to be left with just one, but as it is I just can't see how I can ever be happy again living with one massive boob. Its been hard enough these past 35 years living with the ridicule that comes from having two boobs that size. Having one is honestly going to push me over the edge.

My mastectomy is scheduled for 4 June. Husband thinks I should talk to my GP asap and have her recommend a double to my consultant. But I just don't know whether that would carry any force. All I know is this is causing me more distress than anything else.

Sorry for going on and on. 

xx

 

Single mastectomy

20 May 2019 19:50 in response to Mammaof4

 

Hi Mammaof4,

I can fully appreciate your distress. I was in a similar position, when my surgeon told me that I would need a mastectomy, after he diagnosed my second cancer. I immediately asked if he thought that it might be wiser to have a double. I had found a lump in my other breast 6 months after I had my lumpectomy. Fortunately, this was benign, but it was fairly large.

When I mentioned this to my consultant, he agreed immediately. This may also have been due to the fact that I didn't have radiotherapy or chemo first time around.

The size of your breast is obviously worrying you, but you won't notice any difference in weight and size with a Silicone prosthesis. Have you asked your consultant if he can do anything to reduce the size of the breast that will be left? You need to sit down and draw up a list of questions for your surgeon. How soon could this be done, can it be carried out by the NHS, what complications could arise, etc? Get your hubby's input too, as he may think of questions that you don't.

I doubt that your GP can really recommend a double to your consultant and, if she did, chances are that your surgeon wouldn't pay any heed. Remember that he is 'the consultant' and your GP is only trained for general health. Is there a particular reason why you don't want reconstruction?

The other person who it might be worth talking to is your breast care nurse. I'm sure that you will find her advice very helpful and, she works closely with your consultant.

Do you bring someone with you to your appointments? It might prove helpful to have your hubby with you to ask further questions.

I sincerely hope that you can get this all sorted out soon, as 4th June is not far away. Phone the clinic first thing tomorrow and see if you can arrange to discuss this further. There is no point in having a single mastectomy, if you're not going to be happy with this at the end of the day.

This is something that you are going to have to live with for the rest of your days, so you need to be totally happy with the outcome.

I hope that you get this all sorted out. Please stay in touch and let us know how you get on.

Kind regards,

Jolamine xx

 

Single mastectomy

20 May 2019 20:30 in response to Mammaof4

Hi there ...

Bless ya .. I had a single masectomy in 2017 ... and I'm a 36 D D / 38 D D it varies .. I was given the option of a double masectomy .. so this was my choice and I'm fine with it ... but I can so get where your comming from .. occasionally I wish I'd done it, as always wanted smaller boobs ... 

If i were you, I'd get in touch toot sweet ... and tell them, you want a double masectomy .. which also improves your chances that it doesn't go to the other Brest and being bigger it is harder to feel a lump .. just sound gently firm ... if you know what I mean .. it may amen you have them at different times as two takes longer then one ... but stick to your guns ... it's your cancer and your body ...

You go girl ... chrissie xx

Single mastectomy

21 May 2019 01:05 in response to Chriss

 

Hi Mammaof4,

I just wanted to correct what Chris said about having to have both breasts done separately. I didn't. Both of mine were operated on at the same time.

Kind regards,

Jolaminexx

Single mastectomy

21 May 2019 01:36 in response to Jolamine

Thank you both for replying to me, I really appreciate it. I've emailed my consultant tonight setting out my thoughts, and making clear my distress. I don't know whether that was a great idea or not, but I think maybe it was easier for me to say everything I wanted to say in writing, than it would have been in the context of a garbled and upsetting phone call. We'll see where it takes me. 

I'll let you know what kind of response I'm met with 

xxx

 

Single mastectomy

21 May 2019 12:20 in response to Mammaof4

 

Hi Mammaof4,

I'm glad to hear that you have contacted him and, hope that he will seriously consider your request. Have you written down  reasons why you want a double as opposed to a single? Make 2 colums and do a for and against comparison. This will show your surgeon how serious you are about wanting the double.

Kind regards,

Jolamine xx

Single mastectomy

27 May 2019 04:10 in response to Jolamine

 

Hi Mammaof4,

I was just wondering whether or not you have had a reply from your surgeon yet?

Kind regards,

Jolamine xx

Single mastectomy

3 Jun 2019 21:06 in response to Jolamine

Hi Jolamine,

I got a response from her and she then met with me last Friday. Said she wouldn't consider it until the end of my treatment plan, whatever that ultimately turns out to be. Said it could be at least a year before she considers it, and she'd insist on me seeing a clinical psychologist before any decision was taken. So not massively helpful. I'm going to have to live with a nightmare degree of asymmetry for a long while it seems. 

Mo xx

 

 

Single mastectomy

4 Jun 2019 02:06 in response to Mammaof4

 

Hi Mo,

I'm glad to hear that you met up with your consultant last Friday and, got a chance to discuss some of your concerns.

It doesn't sound as if her response was very helpful. When she said that she wouldn't consider it until the end of treatment, do I take it that she was referring to a breast reduction instead of a double mastectomy?

Kind regards,

Jolamine xx

Single mastectomy

4 Jun 2019 23:24 in response to Jolamine

Hi Jolamine,

 

She was talking about a contralateral prophylactic mastectomy. However she was also banging the reduction drum, saying 'would you consider a reduction op in about a years time instead  ?' And so I said to her 'my understanding is that a reduction op is more complex and risky than a mastectomy, is that correct ?' And she said yes. So then I said 'so why would you be pushing me to put myself through a more complicated and painful operation when it's not what I want ?' She said 'because you're a young woman and you'd still have a breast'. To which I said 'but I don't want the breast. I don't think other people's preconceptions of what I should want as a relatively young woman should take precedence over what I actually DO want, because it's me who has to live in this body, not you or anyone else". And she just shrugged.

Has my smx today and am currently in hospital. Looks great, flat, I'm not in pain, it's just ideal. But my other breast looks gigantic. They had assured me there would be a 'wide selection' of mastectomy bras in the catalogue they gave me, but NOT ONE BRA is available in my size. I just can't get one. Went into M and S yesterday and they don't do post surgery bras in my size either. I asked the assistant and she said 'no, we don't do mastectomy bras in that size, as hardly anyone lives with a single breast of that size'. Which was entirely my point.

Going back to the consultant next Friday and I'm going to insist we look at a mastectomy imminently. If it is the case that I can't even get underwear to fit, I shouldn't be asked to live like this for any length of time at all. There are basic dignity issues at play here. I'm standing my ground and if there's no movement I'm going to lodge a formal complaint. I'm a litigation lawyer, so I won't have any trouble in doing that .

Mo xx

Single mastectomy

5 Jun 2019 00:38 in response to Mammaof4

 

HI Mo,

This sounds incredible. Although your care team should advise you of the choices available to you,  I agree that the final choice should be yours and yours alone.

I find it hard to believe that you couldn't find a bra of your size in the catalogue. If they can provide you with a Silicone Prosthesis of the right size, then they should be able to provide a bra to fit that prosthesis.

There are several different suppliers of post mastectomy bras and you can certainly get the larger sizes. Where have you been left with this? When I first had my surgery a lady held a bra fitting service in the hospital. She had a selection of samples with her which I could try on and she then ordered them up. As far as I remember (it was 10 years ago!), she had a selection of  4 or 5 different makes which I could choose from.

Since then I have had a double mastectomy and have developed bilateral lymphoedema in my arms. As a result of this, I now attend a lymphoedema clinic and now get my bras supplied from there. This clinic can odrer a large array of bras, provided that they come in black, white or nude colours. None are very sexy, but they do give me better support and help to keep the swelling down.

There are companies which supply better looking post-surgery bras, which you can buy privately. If you are interested, I can provide a few names. However, you are best to stick to your guns initially and to insist on being fitted correctly.

I sincerely hope that you can eventually get everything sorted with your consultant next Friday and that you don't have to bring matters to litigation.

Please let us know how you get on.

Kind regards,

Jolamine xx