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Reconstruction or no reconstruction

27 REPLIES 27
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Re: Reconstruction or no reconstruction

hi Sheila what a lovely quote. Thank you. Hope you are having an up part of the day today too 🙂

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Re: Reconstruction or no reconstruction

Hi Stefi

I don't always feel sorted at all!  I swing between feeling very upset (this afternoon) and then more confident (also this afternoon!), glad  that I'm alive and here and enjoying the sunshine when I can manage to sit outside, and will be back swimming in the sea in a few weeks time.  For me, that helps with everything.

I wonder if the surgeon isn't used to seeing people upset because it isn't with him that they show the depth of how they feel?  I like my surgeon and he is very helpful with information but also very matter of fact - no people skills at all.  So I guess I just let out all my grief and tears with others e.g.Maggie's counsellor.  You need to trust what you feel though, not what he says.  I know that's easy for me to say when everything feels so entangled and unclear.

I have also had thoughts about 'no longer being myself' and 'what makes me me,'  In one way losing a breast seems better than losing another part of my body - I don't need it to eat or see or anything - but on another level it's much worse, because so much a part of my identity, as a sexual person, a part of my appearance I like, memories of feeding my baby daughter...  So it's huge.  But I also think it is do-able  And some days it will feel more do-able than others, probably for a long time.

I found a quote just before my op that really helped me.  You probably know it as I understand it's really well known, but in case not: "When a piece of pottery breaks the kistsugi craftspeople place powdered gold into each crack to emphasise the spot where the break occurred.  Exposed rather than concealed, these fractures and their repair occupy a central place in the history of the object.  By accentuating this memory it is ennobled.  Something that has survived damage can be considered more beautiful, more valuable,"

Take good care

Sheila

PS Yes Butress and Snatch is the place I found too, their stuff looks great!

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Re: Reconstruction or no reconstruction

hi Sheila, 

Thanks for you reply 🙂 You sound very sorted for 1 week post op - I really hope the scar settles down ok; I wish I had been as decisive as you as the prospect of drawing this out even further is horrible.

Where I live they are advising ER+ women to go on tamoxifen if they want recon and to go for immediate rather than delayed - I'm not clear why - I think it's just a better aesthetic they say and less ops but I am not sure why it has to be so black and white. Thanks for sharing your experience and showing that it's not always so easy and you can have doubts but that it gets better and some surgeons are on board with the idea that the decision can change. I have a counsellor now and we discussed using the experience to reflect on what makes me me, what makes me a woman if you like - it is so wrapped up in this breast business at the moment, it's difficult to disentangle what is what!

Like another woman on here I have researched my way through this just to cope, which has made it worse in some ways but through a friend I have found a seamstress in Shoreditch who also can potentially make custom designs http://www.buttressandsnatch.co.uk/bespoke-1 so I'm interested to hear that you have also explored that route. It's all very difficult with social distancing though isn't it. But I found knowing there were other options to standard Nicola Jane etc really comforting - like I could get someone to sew me out of this situation with fabric that fitted my unique contours rather than my own body tissue! 

I think I had a lot of grief up front and the surgeon took it to mean that I didn't in my heart of hearts want simple mastx, he said most women don't look as upset. I was trying to perhaps anticipate the grief to deal with it, I don't know why I wobbled and was so upset by the prospect. I like the idea about writing to your former self and I will definitely do this, I have found writing things down useful. 

At the moment each day I wake up wondering what to do as immediate recon has suddenly reappeared on the horizon. It's tempting to go for recon but it sounds arduous and I don't really want to take so much time out if I can help it.  I guess simple mastx is a reversible decision; recon isn't so much - diep is quite a commitment - I wonder if getting through it means you really need to be sure. The thought of multiple visits to get it right afterwards, perhaps having a new nipple, tatooing etc also feels like surgery is ongoing for ages. I am wondering if my age has something to do with why am feeling torn and tired of multiple interactions with hospitals!

Anyway thanks so much again, and hope things continue to go well for you, 

Stef

x

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Re: Reconstruction or no reconstruction

dear Stefi

It is such a difficult decision and so individual.

I decided in the end to go for a simple mastectomy, no recontruction.  I live outside Edinburgh and have been told I can go for this option later if I want to - as long as the plastic surgeons deem me suitable. (Unlike where you are, they are not seeing folk yet for this kind of surgery.)

But I think I won't want to.  I was very clear I didn't want implants, which I would have had to have at the same time as the mastectomy.  Like you. I love swimming, especially in the sea, so the backflap option was a no go, as I didn't want to lose strength in those muscles.  I am also quite small breasted, but in the summer I always go about bra-less in vest tops, so I don't know how feasible that will be now.

I have to say I am only 1 week post-op, so it's hard to know what the final result will look like - there is still quite a bit of swelling.  I was also told that if I am not happy with the final appearance it can be 'refined.'  I do trust the surgeon, he is very straight forward.

But I am grieving.  I have already sent 2 bras to be repurposed into 'monobras', and the lovely woman doing them has said she may be able to design a special swimsuit or bikini top.  So perhaps I will be able to alternate that with a costume with a prosthesis for days when I feel less brave.  To be honest the thought of faffing about with all that and wearing a bra that can accommodate a prosthesis makes me feel tired.  BUT the one I got sent home with, although temporary, looked amazing under a T shirt - even I couldn't tell!

So I guess I am adjusting, thinking probably that I will stay flat but have some options, and taking it gently.  The whole process has been a rollercoaster for me - went to GP May 18th, diagnosed June 11th, and surgery July 17th

It is hard - and I think it will continue to be difficult for a while.  So no I don't think concerns about body image will disappear overnight - but in a way how could they?  It is an altering operation, and there's no way round that.  I feel like it may be a long process of assimilating to the new me - after all I had 2 boobs for nearly 50 years!- but not that it's impossible.  I went to see a counsellor at Maggie's Centre 2 days before the op and he suggested I write to my former self, or self before the surgery, and it did really help.  

At the same time I am hugely relieved to have the surgery behind me.  One of the other big things for me in deciding what to do was that I really really wanted to avoid a long stay in hospital, and several trips back for further surgery.

I know this is just my personal experience

Talk to as many people you need to and take all the time you can to make a decision.  And very best of luck With all good wishes Sheila

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Re: Reconstruction or no reconstruction

hi ladies, 

I am also stuck with the reconstruction or no reconstruction dilemma. I am 50 and am lucky in that I have stage 1 ER+ but unlucky that it is multi-centric so mastectomy is my only option - this was a terrible shock as it was an incidental finding. I was diagnosed in May and have been dithering about having the mastectomy or waiting for recon. I finally decided on mastectomy in July wanting to get it over with but then wobbled badly a few days before the op so was advised to just have the sentinel node and see if my options were narrowed - nodes are clear thankfully as of last week so am back to square one.

I know I am lucky as some of you ladies are have difficult diagnoses and part of me feels guilty for even posing the question; whereas I am stuck at the very beginning with a low grade and can't decide. The team keep telling me it's a life changing decision and I need to be 100% behind it but I am ambivalent.

I am very small breasted and I think that is part of the problem - as I don't actually have cleavage as such but actually I rather have gotten used to my small breasts over time. It seems like recon isn't reconstructing very much and it's a major op to do it! I know that sounds odd 🙂 Anyway, how to make this decision and not regret it? I think Covid has made this much more difficult as there is a lack of certainty on dates for recon and couldn't see the plastic surgeon until a week ago - so it's all been horribly drawn out. She is very nice and says that recon now starting up again and diep is an option for me and that there should be no long term complications, that you might feel a feeling of tightness in the abdomen. I am always a bit doubtful about these things though. I have had 4 ops in my life, sometimes things don't quite deliver as you expect!

I forgot to say due to having small slightly droopy breasts (blame the breastfeeding!) and being a keen swimmer, my two options are: mastectomy or Diep unless I want the other breast altered (implants would give me a lopsided look).

I have realised that Diep scares me, particularly during Covid and maybe during any second wave. For me it would be a six hour op and the surgeon would put in a mesh to maintain abdominal strength (she does this with all her patients apparently) followed by 2-3 months off work which seems like ages.

But equally mastectomy worries me as I am concerned about how I would feel about how I look with the scar and whether I would find prosthetics difficult to size or uncomfortable/annoying; I don't find choosing a bra that easy - with my shape nothing fits well.  I don't wear revealing clothes but I do like to have freedom to choose I guess. Mastectomy to me still seems a dramatic decision for my stage of cancer - though I can see it is possibly the most practical and sensible option. I have sought some counselling and have some issues about body image but I am not sure they will disappear overnight! 

So anyway, any thoughts on how to decide most gratefully received. I am increasingly worried about waiting.

thank you

xx

 

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Re: Reconstruction or no reconstruction

Hi Evie

Thank you!  I did end up with quite a lot of questions - I was advised that the only option just now is an expandable implant at the same time as the mastectomy.  Can't have this later, and any other procedure is currently not available because the plastic surgeons aren't dong them because of COVID

So these other procedures might be option later on - although I was advised there is no guarantee because I may not have enough tissue.

I could delay surgery - although that feels a bit scary, and I need to take advice on whether that's safe.  MRI scan this coming Tuesday and seeing the surgeon again the following week.  All a bit of a rollercoaster!

Thanks again

Sheila

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Re: Reconstruction or no reconstruction

Thanks so much for your reply

I think I probably do need to delay the decision about reconstruction - although the nurse advised that it may not even be an option for me later on as I don't have enough tissue for the procedure.  But I think I'd have to see a plastic surgeon to be sure and they are not available for this type of op just now because of COVID.

The only possibility for me just now is an expandable implant, and that has to be the same time as the same time as the mastectomy, - and would not be possible further down the line.  And I'm ot sure that's what I want.

So I do feel a bit stuck.  I don't really want to delay surgery, but...

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Re: Reconstruction or no reconstruction

Hi Sheila

I don’t often come on this forum but received a private message today from another lady re reconstruction.  My story is I was diagnosed 6 years ago aged 43.  Like you it all came as a huge shock and I was told from start due to size and rarity of cancer type it would be mastectomy after chemo.  I researched everything as that is my coping method.  Originally I didn’t want reconstruction and was pushing for double mastectomy but surgeon wouldn’t at that point and asked me to live like it for 6 months then decide. I joined a fab Facebook group called flat friends that helped with clothing, fashion advice .  Eventually my surgeon was so fed up with me pushing for another mastectomy he said he would but only after I researched reconstruction.  Originally I was to have ld flap and implant but luckily his list was too full so I was referred to plastic surgeon at East Grinstead hospital.  They did a very informative evening with 8 models who had had various reconstructions and were willing to show you their new breasts and answer any questions.  I was amazed at how natural all the results were and how pleased these ladies were wIth their new bodies.

i eventually had a TUG reconstruction (using my inner thigh) 18 months after my mastectomy.  I then required an uplift on other breast and some liposculpting so it is not a case of just one operation.  That being said it has moved me on mentally from cancer and when I glance in mirror I beam from ear to ear as so pleased with the results.  So my message to you is you don’t have to decide everything all at one stage and do lots of research. X

 

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Re: Reconstruction or no reconstruction

Sheila, you are very welcome. Do come back and let us know how you get on tomorrow (if you want to of course), and if it throws up any questions that I or others can help with. 
Hugs, Evie xx

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Re: Reconstruction or no reconstruction

That's really good advice about the appointment - I will write out a list of questions now to take with me.

I don't have a treatment plan yet, I think that is part of tomorrows discussion too.

Thank you for replying so quickly!!

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Re: Reconstruction or no reconstruction

Hi Sheila, a big welcome hug to you. I’m sorry you find yourself here but this forum really is the best, so many supportive people with advice and never judging. 
Yes I’m pleased with my implant, it’s not perfect but it works for me and hasn’t limited my activities. I wanted it done at the same time as my mastectomy so it was all done at the same time, but lots of people delay reconstruction and I think some reconstructions are being delayed because of the virus (I think that’s what I’ve read on here). So it’s a very personal decision and you are doing the right thing by asking questions on here, and also make a list of questions to ask your surgeon/consultant. I’m sure at the moment you just feel like you have been hit by a truck, so you are doing really well to be considering all the options. I found it essential to write down my questions and then note the answers while with the doctor otherwise I would forget what I had been told by the time I came out!
Ask your surgeon if he/she has any photos of reconstructions too. 
Lots of people are very happy to stay flat, and you can buy a prosthesis to use when swimming. I have tiny one I use when swimming just To even things up. 

I’m more than happy to chat more with you if I can help in any way. Do you have your treatment plan yet? My very best wishes to you. Hugs, Evie xx

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Re: Reconstruction or no reconstruction

Hi Evie

I was diagnosed on Thursday, also in shock as completely unexpected and have appointment tomorrow to discuss reconstruction options.

I have to have a mastectomy, don't want to go for back flap option as I love swimming, kayaking etc and I am already 62 so don't want to lose any more shoulder strength.  I can't decide about implant options, seems like a lot of extra surgery and potential infection risk, and inclined just to live as a i boob-ed Amazon!  My daughter has already researched swimwear for single breasted women.

But it sounds as though your experience with an implant has been positive? I am wondering if I can delay and have reconstruction in a year, if I decide to - or should do it now.  Just don't know.  Also terrified.

Do you have any advice?

Sheila

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Re: Reconstruction or no reconstruction

Thank you so much,

I hope.you're well. Have surgery booked for 10th Jan. Really want to push for a double I'm hoping they'll allow it. I don't see the consultant until the 7th xx

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Re: Reconstruction or no reconstruction

Hi gullie - I'm so sorry to read your news and sending hugs and strength to you. As I said in an earlier post, it's hard to make even the simplest decisions once you get hit with a diagnosis, let alone whether you want a reconstruction or not, or what type. If I can help you, please do get in touch.

Hugs, Evie xx

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Re: Reconstruction or no reconstruction

I too just got diagnosed this past Friday. This is a recurrence. Still waiting for my HER2 results. My ER and PR are both negative this time. This is 12 1/2 years later from my first cancer. I’m still in a state of shock. I had a lumpectomy, radiation, chemotherapy and Tamoxifen. I wasn’t able to tolerate the aroma ties inhibitors so I went back on the Tamoxifen. I will be seeing my Surgeon tomorrow and I have so many questions. I was told I can’t do radiation again in that same breast so I am considering a double mastectomy. I’m still trying to decide whether to do reconstruction or not. There’s just so much to consider and still so many unknowns. I’m glad I found this site. It’s important for us all to have the support while we go through this. I’ll be waiting and watching g to see what you decide to do. Sending you hugs and support💕

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Re: Reconstruction or no reconstruction

Hi chellou- sorry for not getting straight back to you. I’m not sure if it will help you to know that the initial few days after diagnosis are probably the hardest, and that what you are feeling is very normal. The shock of the diagnosis is huge. I remember almost passing out when I was told, and then asked my consultant if I would still be alive in a year. Somehow it helps once you have a treatment plan in place and know what you are facing. 

I also understand what you mean about trying to be brave - but you don’t need to hide anything on here, this is a safe outlet where you can just open up and someone will always come along to help.

I would suggest that you and possibly your husband too speak to someone, you can call the support team at Breast Cancer Now, or maybe you have a sympathetic BCN or a cancer support centre. Both my husband and I spoke to a lovely lady at Maggie’s support and that really helped. I also had some counselling afterwards.

So to your question about how do people cope? I’d say everyone handles it differently and their own way. Possibly the best advice I had was to take one day at a time and even one hour at a time when/if you have a tough day. One book that was recommended to me on here, and I then recommend to others, is “The Cancer Survivor’s Companion” by Frances Goodhart. One of the things this book says to remember is that “Thoughts are not facts”. Try to deal with facts and make sure you don’t use Dr Google. Stay on this and other reputable sites or you will scare yourself. Go along to any appointments with pen and paper and questions written down, then write down the answers so that you can refer back to them. Preferably take someone else along to write for you so you can listen.

My very wise mother in law told me to make sure I stayed around people who “topped up my batteries” rather than those who drain them. I’m sure you know who will help you and others who just manage to say the wrong thing, usually unintentionally but still not helpful.

I’m sending you a huge hug. I don’t know if any of that is any help, but please do come back and chat more if I/we can help you get through this. As Winnie the Pooh says, “You are stronger than you believe....”

Hugs, Evie xx

 

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Re: Reconstruction or no reconstruction

Hi Narnia

 

Thank you so much for your message. I found it very useful. I am just waiting to see my surgeon. I have just had 6 months of chemo and I have 12 sessions of 2 other treatments. I think I am swaying towards not having the reconstruction but will see what my surgeon has to say.

 

Thank you so much#

Lisa x

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Re: Reconstruction or no reconstruction

Hi Lisa, it's really hard making these decisions because there's so much to take in. My approach was to make a list of what my priorities are and write down some questions to ask the surgeon. First Q would be to ask what reconstruction types are available to me (eg, to have own tissue used you need to have enough fat; if you've had radiotherapy that might affect the stretchiness of skin for some recons). I would also ask them about whether your tummy muscles or back muscles would be affected. Personally I have back problems so that ruled out using the shoulder muscles for me. All this helps to narrow things down a bit. I would also ask how long the recon would last and whether I would need further ops. The fact I really find ops scary was a big factor for me. Also ask about recovery times and chances of complications (my own situation meant I needed to recover as quickly as possible). If you don't have reconstruction at the same time as the surgery it is always possible to have it at a later date if you can't get used to having no recon, but do ask what the differences are in how it will look, ask to see photos too. Also ask to see a prosthesis. I only need a smallish one but I've heard people who need larger ones can find them a bit heavy. First you're given a temporary light prosthesis but I was really pleased with the natural look my permanent prosthesis creates and I forget it's there now, my bc nurse helped me choose one. Also ask how the reconstruction will physically feel to you. Ask about the different sorts of inserts in artificial reconstructions. In the end I think my fears and imaginations were worse than the reality and the Macmillan nurses and nurses on the phone here are really helpful to talk it through with. All the best to you. 

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Re: Reconstruction or no reconstruction

Hi Evie thank you so much, 

Im really struggling to be brave at the minute. Not showing anyone else its affected me as my husband is in bits. I'm trying to hide it from the kids for as long as humanly possible. So praying i don't need chemo. 

How do you all cope and be so brave. 

I got from forgetting to planning my funeral in my head 

Xxx

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Re: Reconstruction or no reconstruction

Hi Lisa 

I finished treatment in jan, and was discharged in July 19. 
I had a single mastectomy in Dec 19, 6 months of neoadjuvent chemo. 
I have my pre assessment  surgery appointment on the 6th Jan for my reconstruction. 
I have changed my mind so many times re construction, however the other night I was looking at the curve of my other breast, and that convinced me to have the reconstruction, I realised I have missed my breast. 
The surgeon who referred me for the reconstruction has recommended I use my own tissue from my abdomen. 
Lots of luck with whatever you decide to do. 

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Re: Reconstruction or no reconstruction

Hi Lisa - all the best to you for whichever option you go for. Please feel free to ask me any more questions at any time. I really know how you feel about the coffee shop - I’m still having trouble deciding and now when I can’t decide I get a massive hot flush on top!!

Evie xx

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Re: Reconstruction or no reconstruction

Hi Chel - first of all, I’m sending you a massive hug and welcome to the forum. You must still be in shock if you were diagnosed yesterday. I know I felt like I’d been hit by a truck that I just didn’t see coming. And I’m sure you are overwhelmed with the amount of info you have been reading on here, and questions you want to ask. This forum is a safe and very supportive place, I am so glad I found it to get me through.

I was diagnosed 3 years ago, had chemo first, then a mastectomy and lymph clearance, an implant at the same time as the mastectomy and then radiotherapy and now on Tamoxifen. I actually didn’t have enough fat for either the tummy or back graft, so I only had the option of an implant or staying flat. I knew I wanted recon, and actually wanted an implant as it has the shortest recovery time (that was important for me).

I’d encourage you to ask your surgeon/consultant to show you photos of what the various options look like - if you know the name of your plastic surgeon he may have some examples on his website (it does feel weird looking at pictures of breasts online though!) I think the tummy/back options are more realistic than the implant. My implant doesn’t match my real one, it’s more rounded (think what celebrities look like after they’ve had work done - not that I look like a celebrity 😂), and I use a prosthesis over the real one to even them up, so under clothes you really can’t tell. But I’m happy with it, it really doesn’t bother me that they don’t match. That said, it is a very personal decision and everyone will feel differently about how they look.

You didn’t ramble at all. I’ll send this now, but I’m very happy to answer any more questions you have - either on here, or on a private message if you feel more comfortable that way.

Very best wishes, Evie xx

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Re: Reconstruction or no reconstruction

Hi Evie,

I've just stumbled upon you're response from reading through i can't even count how many messages on the forum.

I was only diagnosed yesterday So all very new. I'm having a masectomy done the second week in January. Unsure of what treatment afterwards as they need to wait for pathology. I've been offered the implant or where they take the muscle from my back to make a breast. Gutted i could not opt for the tummy tuck option 😂 im not big enough but i can soon sort that in four weeks. Im 35 but theyve explained it wont look very natural. To be honest i don't care as long as i live to watch my three children grow  

Sorry I'm rambling, grow was your journey, recovery etc and is there a massive difference in the pair. I'm going to try not to tell the kids for long as i can do would it be extremely un hideable. 

Thank you for listening 

Chel xxx

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Re: Reconstruction or no reconstruction

Hi Evie

 

Yes, I certainly do have chemo brain. Some days I cant decide which coffee to have at the coffee shop hahaha. I wasn't aware that the hospital supplied you with prosthetic breasts. I thought I would have to purchase my own and they are not cheap. I was under the impression that the implants had to be replaced every 10 years so that what put me off those. Thank you for your input. I have to get my thinking cap on now as I will be seeing my surgeon soon and will have to decide.

 

Thank you Evie and regards

 

Lisa x

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Re: Reconstruction or no reconstruction

Hi Lisa1406 - reconstruction is a very personal decision and you are doing the right thing asking around and getting as much information as you can before you decide. You are probably also suffering from chemo brain - if you are anything like me I had trouble deciding what to eat, let alone whether I wanted a reconstruction or not!

 

I had chemo first then a mastectomy and reconstruction at the same time with an implant (so no skin grafts). I decided on a recon but I knew I didn’t want the skin graft/tissue option because of longer recovery, although it is more natural looking I believe. I’m very happy to share more information on this option if you have any questions - or indeed if I can help any more. Some surgeons won’t offer an implant before radiotherapy - but mine did, I think because of the type I have.

 

The hospital should supply you with a prosthesis if you ask for one. Ask your surgeon to show you some photos of reconstruction options too, that may help you.

 

Lots of people are happy both with and without reconstruction, and you too will make the right decision. My only advice would be to think long term and although you may want it all done with now, how will you feel in a year? The recovery time I was told for an implant recon is about the same as for a mastectomy, which is why I chose that option rather than the tissue options.

 

I wish you all the very best as you make your decision and for the rest of your treatment.

Evie xx

 

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Re: Reconstruction or no reconstruction

Hi Jan

 

Thank you so much for your reply. I am more swayed towards not having the reconstruction. To be honest, I just want this all to be over. I wasn't aware that you can get prosthesis ones. I just thought that there was knitted knockers. I too aren't at the age where I wear skimpy stuff. It was good to read about your journey though. Thank you for sharing.

 

Best Wishes

 

Lisa

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Re: Reconstruction or no reconstruction

Hi Lisa

 

Congratulations on completing your chemo. I’m 6 months further on - still experiencing side effects but apparently it’s early days. I hope you get constructive responses to help you get a picture of what you might expect. Reading your post, I did wonder what’s really going on. In the end, having a reconstruction will surely depend on how important having an apparently ‘natural’ pair of breasts means to you. How do you feel about your mastectomy scar? I’m quite happy with being single-breasted but I’m no longer the age for boob-flashing so I quickly dismissed the offer and am happy with my prosthesis and Knitted Knockers, less happy with the bras. I also naively thought the absence of a boob would give me less to worry about in the future but apparently you still have to check along the scar for bumps and lumps and unwanted changes!

 

Good luck with your decision.

Jan x

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Reconstruction or no reconstruction

Hi

 

I am new to the forum. I have just finished 6 months of chemotherapy and now having 12 months Herceptin and Pertuzumab. I am waiting to go and see my surgeon to discuss my operation. 

 

I keep changing my mind whether to have reconstruction or not. The thing that worries me most is the skin graft and the recovery afterwards. If I did go for reconstruction, I'm not sure which would be the less evasive option.

 

Can anyone offer any advice or help me to make the decision.

 

Thank you

 

Lisa