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To reconstruct or not ?

bella60
Member

Re: To reconstruct or not ?

Hi Susie soo I know i am a bit behind the times replying to thiis, I just wanted to say I agree with everything that you said, I think that we have a duty ( a bit Of a heavy word) to discourage women from having immediate reconstruction. Its not in womens interests to have a bit of muscle stuffed on their chest wall and call it a breast, because bluntly thats what they do. I just want to know how to move on, when every day you experience at the most pain and at the least tightness and restriction. Its a very lonely place to be. Most people think it tikerty boo that you have a new boob. . I did nt even have any symptons of cancer, i was n:t ill. I am meant to begrateful. Well personally its all been medical overkill. A first world problem, that can never be resolved.  i am fed up  of it all. Its just good that a few other people can visit me in the pit from time to time.Sorry if I sound sorry for myself.  and bitter, but its got to come out some where.I can only be Polly anna in short bursts, then I have to go back to taking an axe to the sofa. Only joking folks.. Point of interest, apparently if you have breast reconstruction for other reasons, you have a psychological assessment prior to surgery., just maybe that could be the same for reconstructions post cancer,  Right i have stopped ranting. Hugs to all my sisters who are suffering alone .

 

OrangeGirl
Member

Re: To reconstruct or not ?

Reply for Naz from post ages ago!!

Blimey. Only just come back to the forum and seen this. I found a female tattoo artist I felt comfortable with. She's called Anna at Adorn Studios in Shrewsbury. There is a picture of my tattoo on the BCC FB page from World Cancer Day. It's fab!

Soosie_Soo
Member

Re: To reconstruct or not ?

Hi Pansy50!!

Lovely to hear how you are doing. Don't give up luv, the massage sounds really good but have you tried anything else?? The thing is, after this op, I realised that your sense of well-being just does not come back, by gum, you have to really work at it! The thing is Pansy50, why should this operation affect your job, your career and your quality of life, that is incredibly unfair to you and you are still young!! After the experience you have had, you deserve to be able to return, as much as possible, to the former life you enjoyed. The turning point for me has been the gym, working out gently, swimming, using the steam room and aiming the jacuzzi jets on my surgery site. Just consider it, I was always allergic to gyms pre-surgery but now, post-surgery, I don't think I could live without the help and comfort it gives me. My body often feels broken and weak but the gym helps put it back together again until the next time I go. Please keep in touch Pansy50, I am genuinely very interested to know how you are progressing. Hope you had a nice Easter, best foot forward luv. xxx 

Pansy50
Member

Re: To reconstruct or not ?

Thank you Soosie Soo and Pod  1. I have been getting a massage which helps at the time but not for long after. I should contact the breast nurse as I haven't seen her for over a year but I felt if the plastic surgeon couldn't find a solution who else could. I certainly don't feel so alone now after reading your posts. Thank you again. Pansy50

Soosie_Soo
Member

Re: To reconstruct or not ?

Thanks for your comments Brave Scholar 🙂 Well Little Lady, as the recipient of an LD Flap operation three years ago, I would not recommend this operation to other women in any way, shape or form. I can only speak for myself but I feel that I was very badly advised when making choices and hindsight now makes me realise that the emphasis is on how the surgery will look afterwards when really it is just as important how it feels. I have been left with a lot of stiffness, tightness and discomfort in the back area and struggle on a daily basis. I also don't like the look of the finished product. It looked okay at first I suppose but now, three years down the line, it has changed shape and there is rippling. I will not be having the nipple done because, if I am not happy with the breast , it doesn't make much sense to me to mess about having the nipple done. Basically, I give it a 3 out of 10 and would say that I'm about 85% of what I was before. To me, it's simply not been worth it. I would rather have been flat and healthy than have a substandard breast and ongoing difficulties. I am sure there are women out there who are happy with their surgery but I have to be honest and say that I am not one of them. I do hope this helps a little. Best of luck to you, trust your gut as much as you can and go for damage limitation xxx  

bravescholar
Member

Re: To reconstruct or not ?

Sorry you've had such a hard time, Soosie_Soo. I have no doubt, though, that if they could make a new leg or arm, they would. I'm sure they will be able to do that at some point, however far down the line. Breast reconstruction is improving all the time too, although I know that's little consolation for those of us who have had/are having bad experiences. You're certainly right in that most of us have very little time to make the decision. Best wishes.

littlelady
Member

Re: To reconstruct or not ?

Hi, anyway out there had LD flap reconstruction? Any pros and cons that you can share with me.

suddenly feeling very nervous about the prospect of more surgery!

Soosie_Soo
Member

Re: To reconstruct or not ?

Omg, this thread has gone a bit busy again!! Very interesting comments but no, 2.5 years down the line, I am not feeling it with the reconstructed breast at all. The fact is, and I think I am qualified to say this, you could show me all the fancy plastic surgery tricks in the world or you could even present me with the best plastic surgeon in the world, their idea of a good breast job is nowhere near mine and I am of the firm belief that there is nobody alive who can replicate a woman's breast without there being some sort of drawback, some sort of unpleasant scar or some sort of weakness etc etc. I give my reconstruction about a 3 out of 10. It's sad really considering what I went through to get this far. I would never have put myself through such surgery if I had truly known that the result would be this poor. It would be nice to think that a surgeon could give you a 7/8/9 out of 10 or else what is the point of it all? My breast does not look like a breast, it doesn't feel like a breast, it doesn't feel part of my body, I have pain, stiffness, tightness, weakness, no nipple. Oh and it's changed shape and gone flat!! The fact is, it's rubbish and reconstruction is not a course of action that I personally would recommend. If you lose an arm or a leg, can they make you a new human leg from another part of your body?? No, so why do they offer this to women? If you loose a limb, you have to wear a prosthetic. All this breast reconstruction business is just a load of false promises by surgeons who think they are doing great stuff. Please remember, this is only my personal opinion but I wish I had the benefit of advice from ME before opting for surgery. I had only a few weeks to make a decision and sadly that was based on the medical opinion only. I thought I could trust these people. I thought they were the best people to advise me. Anyway Pansy50, your comments echo mine in every sense of the word. You have my empathy and I very much hope that your physical condition improves over time. Best of luck love xxx  

bravescholar
Member

Re: To reconstruct or not ?

Thought I'd jump in and add some comments about my experience. I was diagnosed with breast cancer last July and had chemo before my surgery on 19 December. I debated with myself for four months over what to do. I was adamant for the first three months essentially that I would stay flat - partly because of the thought of the op and the recovery and the hipbone to hipbone scar - then at the last minute changed my mind and ended up going for an immediate DIEP flap reconstruction at the time of my nipple and skin-sparing mastectomy and full lymph node removal. My breast surgeon had told me the plastic/reconstructive surgeon was one of the best, which helped me make the decision. The recovery is long but a month on from the op and I am already delighted with my decision. The first couple of weeks are hard, and the first couple of days horrendous. The last of the dressing is now off the abdominal incision and the scar is really, really thin. You also can't see the scar where they did the mastectomy and recon as it's where the bottom of the breast meets the chest. I've been warned the recon might harden when I have radiotherapy in February. That wouldn't be nice. I'm quite full-breasted so would have needed a large prosthesis. I hope to get back to playing tennis, cycling and swimming and so thought a recon would be preferable to a prosthesis. Never having been flat I can't say how that would have felt but I am very happy - to date - with the recon. Good luck, whatever your decision.

 

waveylocks
Member

Re: To reconstruct or not ?

Pod1 -yes I agree it is a mixed bag. Just shiwsxhiwxckever nature is that it can construct without such drawbacks. Who knows what will happened in the future as they talk of growing body parts! Maybe they'll grow a breast!! But doubt it will be in my lifetime.

 

 I remain open and am seeing a top uk surgeon in a month time to discuss. I have really appreciated this thread as it has armed me with even more questions. Am not in a rush and have the privilege to take my time as if I do do it, it will be delayed reconstruction. 

 

There is is no easy answer and I guess it's more about what you as individual can live with and what is possible for your individual case. I can live with no breast, though I don't like the look, but the weight of my other large breast is putting pressure on my spine twisting it so that's not so great long term for me either. Whatever I decide might be more about preserving my spine!! For me the DIEP over the TRAMS wins out on this. But such massive surgery and its aftermath leaves me reeling.  The BC journey has already been so long and arduous I just want to enjoy my life now and not make myself ill again....so jury's still out for me!! 

waveylocks
Member

Re: To reconstruct or not ?

Oh Annie,

 Am so so sorry to hear of what happened. It happened to a friend of mine too who also attended a well regarded hospital and years after her initial BC diagnosis. It's so hard but there are no guarantees is the upshot we all have to learn. I wonder how many people it has happened to who have had the delayed reconstruction? I will admit to my long list of questions!!

 

Am told that BC never truly goes away so that's why they never give you the all clear these days  - am resigned, especially as mine was so high grade, to the fact that at some point it will return -am just hoping it won't be for years!! 

 

How are you doing now? Xx 

 

 

Pod-1
Member

Re: To reconstruct or not ?

Hi Pansy50. Oh my goodness. What trauma you've been through. Its been interesting reading more and more of the responses and peoples expereinces, and there seems to be an overwhelming message not to reconstruct.

 

I went through enormous indecision at the start of this debate and I was asking to speak to as many ladies as I could about their experiences of reconstruction. Of those that I spoke to - it was a real mixed bag. Most were pleased with the results - but there were some drawbacks.......some not to dissimilar to what you experienced. I was worried that I would lose upper body strength if I went down the LD flap route. And as I mentioned before, some ladies said they could feel the muscle twitching, whcih just weirded me out !! Not sure I could cope with that !

 

Its such a shame that if we chose to have reconstruction (the non implant version) - we have to sacrifice another part of our body. And that was just something I just couldn't contemplate. The DIEP route just horrified me (even though the results are good). The hip to hip sized scar just put me off completely. So I was left thinking about the LD flap. And it was all about not knowing what you don't know. But certainly some of the feedback about the LD flap was leading me more and more down the 'not to reconstruct' decision......which I have to say, i'm quite glad about.

 

This forum has been a massive help and a big eye opener as to peoples experiences. Just reading Annie22's story shocked me to the core. My heart goes out to you Annie22. If ever there was an example to not (immediately) reconstruct - yours was one of them.

 

Pansy50 - I really really hope you can get some relief from the pain and discomfort you are going through. Where the Breast Care nurses able to provide any advice / solutions to your pain ? Maybe a good massage may help ?

 

But thank you for sharing your thoughts and experiences. Every bit really does help to cement my decision not to reconstruct.

 

Thank you again to everyone who has supported me throughout my indecision about it. xx

 

Pansy50
Member

Re: To reconstruct or not ?

Hi Pod-1, I think that your decision on reconstruction is the right one. I had a right mastectomy in August 2014 with immediate LD reconstruction. At the time it seemed the right decision as I had already had been off work for 8months and didn't want any more time off. I have regretted my decision to have this reconstruction as I developed a haematoma 5months after my op which everyone thought was a small seroma. I now have pain and tightness in my back every day and have been off work for the second time since my treatment finished. I am no longer able to enjoy long walks and cycling and am unable to work due to the pain. Physio and the pain clinic have not helped either. I am 51 years old and hoping I will be able to take early retirement. Women should definitely consider very carefully this operation and weigh up how physically active they are. I wish that I had never had this operation as it has changed my life completely.    

Soosie_Soo
Member

Re: To reconstruct or not ?

OMG Annie!! Good grief, if there was ever a good argument for saying no to immediate reconstruction, I think this is it! Well, we have certainly looked at this subject from all angles and, if I could have my time all over again, the answer would be a big, fat no! Such is my strength of feeling, that I believe it is wrong to offer women immediate reconstruction. There are far too many negatives associated with this option being offered by medics and I am firmly against it. I sincerely hope that you have been able to regain your health after such a horrible experience xxx     

Annie22
Member

Re: To reconstruct or not ?

...to clarify....the new breast was contaminated with cells due to the ops happening at the same time.

Annie22
Member

Re: To reconstruct or not ?

One more thing to think about in this debate.  If you delay the reconstruction, you can be sure all the cancer has gone.  If you have an immediate reconstruction, you could end up with cancer in the new breast - and that becomes a long journey.   I know it's rare, and I don't know the statistics (maybe someone out there knows), but no one even hinted at this to me.  It does happen - and it did to me, at a very well-regarded cancer hospital. 

Soosie_Soo
Member

Re: To reconstruct or not ?

Wavey Locks, I was very interested indeed to read your comments and it seems that a common denominator is appearing here. Generally, it seems that the health profession are dealing with the cancer bit fairly well but the reconstruction side of things leaves a lot to be desired, particularly those that are being offered immediate reconstruction to get it all over in one go. Women need good standard support in both areas if optimum well-being is to be achieved in the future. Some of us have a very long way to go after diagnosis, I'm still only young!! Collectively, I feel we need much better , ACCURATE information on future reconstruction (that means the way it will LOOK and FEEL) and better long term support. Personally, I feel as if somebody said to me 'Here you are, here's a new boob, now get on with it!!) 😞

  

waveylocks
Member

Re: To reconstruct or not ?

Happy New Year!!!

Thanks Soosie Soo. It is definately not straightforward. You had your reconstruction done immediately so the effects you describe, may well have been there  from the life saving surgery even if you hadn't had recon?....well in my own one off experience....lol. The change in the shape of the 'new' boob several years on is an interesting one and one I had wondered about whether would happen over time. What are your options? Any?  Thankyou for your comments.

 

A friend of mine has experienced it from all sides having had a reoccurance so knows life  with real boob, with reconstruction with inplant, and with recon natural body tissue boob - having now lived without one altogether for several years after the reconstructions had to be removed to treat she wants reconstruction. 

 

So I guess it's a very personal decision but I completely agree with the full info not being out there -I've found it hard to really research the skills, outcomes of surgeons doing this work. The issue of changing shape over time is something I will definately raise. All that has been said is that ops like the DIEP, trams flap because used with living tissue maintain themselves so the symmetry created once settled shouldn't change anymore then your natural boob. This is what am told.... I would be interested in more info on any long term effects of these ops. What maintenance is offered/needed and its implications. Equally there seems to be little on the long term effects of a mastectomy too.....

 

Maybe be its because BC and it's real effects is still a bit of a taboo subject out in the real world. What is out there is either a tragedy tale or a fairy tale glossing over the realities -like the film 'My red lipstick' Given how many women go through BC treatment and its aftermath I find this surprising/ shocking. So for me a start to address this would be far more info on the realities of recon and living with it long term. We all know that burns victims are left with long term repeat surgery to deal with scar build up but you are absolutely right -little is out there at least in the public domain  that I'm aware of about plastic breast surgery's long term effects. 

 

Breastcancercare.co.uk a big hint for your info booklets....long term aftermaths please.....we do need to know!! Info is power and  being realistic about what it means long termly will help us in our expectations/management.  Part of the shock of the aftermath is not being informed of long term effects of surgery -both the life saving and plastic types. I am very grateful for my life saving surgery as I wouldn't be here otherwise but better info would be helpful -fore warned is fore armed. I know there is no magic wand out there....

Soosie_Soo
Member

Re: To reconstruct or not ?

Happy new year fellow ladies!!!

Interesting comments Waveylocks, particularly about the GP comments. Yes, very interesting indeed. Jets, wow, big decisions, especially because you are looking at surgery on both sides. Four important questions:

1) Did I achieve symmetry and my former shape? Yes.

2) How does it look? Two and a half years later, I don't like it and the shape has changed considerably from when first done. There is now flatness that has appeared on the inner side of the reconstruction that was not there before. Therefore, I feel there is no point in having the nipple done if I am not entirely happy with the breast. 

3) How does it feel? Not good I am afraid. I fully expected to experience weakness on the surgery side but was in no way prepared for stiffness, tightness and discomfort on a daily basis. These are side effects that only the gym can marginally relieve.

4) How satisfied am I overall with the reconstruction? I would realistically say about 30% satisfied. Thus meaning that, in hindsight, I would not have had it done. I thought I would have achieved much greater satisfaction from the surgery.

I hope you don't mind me being honest and hope this has helped. I think that women would be much better served with better support in accepting these bodily changes and more accurate information about reconstruction (it's not just about the look as these surgeons seem to think!?). Also note to surgeons:please do not steer us along the path to seemingly clever, invasive surgery that simply does not do what it says on the tin!! It looks great in their portfolios and in photographs but it does not always remain like that and they don't have to live with it!! Once again, I hope you do not mind me being completely honest, I wish you the best of luck Jets xxx    

JETS
Member

Re: To reconstruct or not ?

reading this thread with interest as bilateral mx in Jan this year and thinking about recon but wanting to feel well first (still post treatment recovery) think its such a hard decision and wanted to thank those who have posted after recon for being so honest about your feelings and experience.  It really really helps.

waveylocks
Member

Re: To reconstruct or not ?

Hi Soosie soo,

Am sorry to hear that you have weakness/stiffness/discomfort in your shoulder, alongside numbness. I too have these problems following my mastectomy & full lymph node clearance and have not had reconstruction as it is delayed. No one told me this would be the case following my op nor that the exercises to ease it would be life long.

I am 8 months post op. It took the physio to explain that I have had a life long trauma inflicted. This was a shock to hear. However this is infinitely better then what would have happened without the op so I still consider myself fortunate. In the heat of everything that was going on am not sure how much I would have absorbed as so much info on multiple treatments and the disease itself came at me fast and furious. I was also in shock and fear for my life. Would it have change my decision for a mastectomy? No! But it would have maybe better prepared me for the aftermath. 

 

I take your point about not all reconstruction being as well performed as it could be and of course the outcome is a different ball game -a risk. I'm not sure about the muscle bit as the op I'm looking at constructs from fat and skin -no muscle involved. I too am taking my time to weigh up and am seeking a second opinion before deciding. My Oncologist was separate to the plastic surgeon. Infact the plastic surgeon is separate to the surgeon who did the original op.

 

My GP says that she finds that women who have immediate reconstruction are the ones who often feel dissatisfied -the women who have delayed reconstruction are often more happy with it. She believes this is due to the fact that women who have delayed reconstruction have experienced the effects of living life without a boob being there and the change in feeling, physical/visual/sensory effect that has been imposed -where as with an immediate reconstuction the comparison is straight from living boob to man made one. And of course the man made  one is far inferior. 

 

Its good to to hear from others and how they feel. I don't think anyone else except those who have been through it could really understand so the forum is a good place I feel. Once I've had my second opinion I am going to talk to my GP further before deciding - so a two year window will have occurred as I will have had to go down two surgeons waiting lists. I want to use that time to get fit and strong again as I feel so weak following all the treatment. Whatever I decide I totally agree it is not something to be lightly undertaken. There is no replacement for the real thing....

Soosie_Soo
Member

Re: To reconstruct or not ?

Janey234, you sound as if you are doing really well, it is only seven months since you had your surgery. However, I do think it is very naughtly of your surgeon to suggest that you will have no problem with your day to day life. It is abundantly clear to me that you have a very physical lifestyle which does not go hand in hand with this type of op :(. I personally do not think that this op serves women very well but why do the surgeons not seem to know this??? I am really stumped by this. It is absolutely clear that there is not just slight weakness in the shoulder after surgery. It is actually very significant and, as well as this, I personally suffer with tightness, stiffness and discomfort on a daily basis. Why should you have to go on a website like this to get the true picture?? You should honestly be able to get accurate information from the Surgeons and supposed Breast Care experts. It is absolutely critical and essential. I really do find the whole situation quite baffling, I really do. Pod1, I think you have been very wise to arrive at the conclusion you have. Proceed with caution if offered delayed reconstruction but, for those like me, who are offered immediate reconstruction, tread even more carefully and don't let anyone blindside you and tell you that immediate reconstruction is best because you achieve much better cosmetic results that way. Also, it is my opinion that there is too much of a clash of patient care when you are being looked after by ONCO/PLASTIC SURGEONS. The two areas should be treated very separately and I would be very interested to know when women stopped being treated by Oncologists and Plastic Surgeons separately. At the risk of being controversial (I would prefer to think that I am being honest and transparent) I can only imagine that it is a money saving plan by the NHS because they are only having to employ one Doctor instead of two. However, in doing so, the patient care you receive is diluted and there are too many women ending up with less than satisfactory medical outcomes. I for one, in terms of diagnosis, treatment and aftercare, received very poor treatment. As a result, I would be interested to hear from anyone who agrees or disagrees with my comments. After all, this is an open forum. Hope you ladies are all sorted for Christmas and looking forward to it, bye for now xxx    

Pod-1
Member

Re: To reconstruct or not ?

It is such a tough decision and as NAZ said, not a decision that should be rushed. I have had a mx and node clearance (Feb 2014) and was advised that to have delayed reconstruction (if I decide to), as i was unable to have immediate reconstruction.

 

For me - its probably the best thing that happened to me - to wait before I make a decision. Since last year, I have had time to research and reflect options available to me  and generally get used to being one sided. My mx scar has healed incredibly well and I have full movement in my arm, which I don't want to affect by having LD surgery. Some ladies have commented that they don't have complete movement in their arm (following the LD flap) and added to that, its been mentioned that they can feel the mucsle twitching at times, which quite honestly creeps me out somewhat !!

 

I have no issue with the prosthesis (or fake boob as I like to call it !) and it pretty much does the job its intended to do. Ok - it doesn't give me a cleavage, and there are times when I have to consider what to wear.But I have to say, I've adapted remarkably well to the way of life. In the grand scheme of things - I have my health back and don't really want to spoil it by going through more trauma and the discomfort of reconstruction.

 

I was in a much less decisive position earlier on in the year, and reading through my previous posts it shows. But as I've said - I've had the chance to take a step back from it all, reflect and have a good long think about it. And for now - the decision to NOT reconstruct has been the right one.

 

So all I can say (as many others have said) to all those laides outthere contemplating reconstruction, take your time deciding, do the research, then weigh up pro's and cons and consider how vital it really is to you.

 

Pod xx

NAZ
Member

Re: To reconstruct or not ?

I think this is the problem with reconstruction. These surgeons are all too keen at showing off their handiwork for their porftolios. The truth is though, that for many of us, these LD flaps (in particular) are a thorn in our sides!

 

I have had mine for 4 years now and spent the first 3 of those years, wishing I hadn't put myself through the ordeal. Firstly, because it is numb, secondly because it is scarred badly and thirdly, well it's a lump of muscles and implant (what is that about??).

 

These days, I just ignore it, what else can you do? It doesn't respond to the human touch, I get 0 pleasure from it and it looks pretty ugly. BUT it fills a space in my bra.. end of...

 

Think carefully before you sign those forms ladies, LD can look great, but the feel, well that is something that can take a long long time to adjust to.

 

 

jayney234
Member

Re: To reconstruct or not ?

I have been following this with interest.  I had LD reconstruction in May this year and I have to admit that although I was thrilled when I woke up from a 12 hour op to find a "breast", this feeling has vanished over the months.  I discussed how it would affect me as although I am 60 I have horses and lead a very physical life, mucking out, riding etc, and I did discuss this with my Surgeon who assured me that I should not find any long term problems.  I find that I am now constantly uncomfortable as it was my right side and I end up sore and aching every night because of the physical work I do.  The scar line also gets sore from my bra and I just want to tear the b....y thing off most times.  I am very grateful to be here and all that but I wish I had been warned how long I would be uncomfortable for and I do think in retrospect I would have opted to just have the other one off for symmetry which I was refused.

Soosie_Soo
Member

Re: To reconstruct or not ?

Very valid comments Waveylocks, I admire you. Just proceed with caution. Reconstruction does not replicate a real breast, I can definitely vouch for that and I would not like other women to think otherwise. Additionally, I would not like women to end up in the condition I am in. These operations show off the Onco/Plastic Surgeons clinical skills in the best possible light but are they really doing breast cancer suffers a justice? Hmmm. As said, tread with caution. These clinicians are very good at promoting how these operations will look but not how they feel and how you are expected to then live like that for the rest of your life. Best of luck to you and have a great Christmas! xxx   

waveylocks
Member

Re: To reconstruct or not ?

Sorry to hear how you feel about your reconstruction Soosie soo. Must be hard as it was done so fast and so quick that as am sure you were in shock at the time you must have felt there was little time to understand and reflect. I know I would have found that a difficult decision to make objectively shortly after my diagnosis.

 

 

 I have had a mastectomy and full auxiliary clearance. The other side of the coin is living with an unsightly long lumpy scar and and uneven half side of the chest with a large drooping boob on the other. My mastectomy is healed but is not a pretty sight -am pretty numb in that area and under my arm so it's not like I have sensitivity there. So whilst delayed reconstruction might not be as successful as its had to be delayed I think it's a chance I'm prepared to take with the right surgeon.

 

Am not rushing into this and the truth is that a recon boob will only provide some balance and little more. I know this but I also know as a big breasted woman that lugging a heavy non breathable fake boob in hot weather is pretty uncomfortable, sweaty and even in the winter leaves me with big red itchy wheels from the bra on that side only of my chest. I know I can wear my softy which is cotton and light but leaves me lopsided as the cotton light one is less heavy then the real one. 

 

There is no perfect solution to this. Pros and cons on both sides.

Am hoping a DIEP will give me the best of limited options. I do know am not keen to leave things as they are & am hoping that a better way forward lies out there. However once done there is no turning back...that can be good & it can be bad.....lol.....not an easy decision even with time to consider...

Soosie_Soo
Member

Re: To reconstruct or not ?

Hi there, I have been reading this thread with interest. To reconstruct or not? Not, is my opinion and, as the recipient of breast reconstruction, I do think I am well qualified to say this. I was diagnosed with Paget's Disease and high grade DCIS IN 2013. This diagnosis came as a massive shock after being diagnosed with a simple case of breast eczema in 2011. I was offered a mastectomy with immediate reconstruction and through the haze and the intense shock I thought this was the right way to go. When someone sits before you and tells you that, not only can they get rid of the cancer, but they can fix you at the same time, that is a very attractive proposition. I was also told that delayed reconstruction does not offer as good results as immediate reconstruction so I went ahead with the mastectomy and LD flap surgery. Now, 2.5 years down the line, I can honestly say that there is not a day that goes by that I do not regret this surgery. The fact of the matter is that the least invasive the surgery the better. Nothing can replicate a breast and I truly believe that, if women received better support at the time of diagnosis, there would be better outcomes for women. At the end of the day, what is most important is getting rid of the cancer. If there had been someone there to just hold my hand, tell me everything was going to be alright and that, of course, it is perfectly possible to live a healthy and active life with one breast, I think the outcome would have been very different for me. Instead, I was offered three or four different operations, I was blinded with science, my head was in total bits and, because I am at the younger end of breast cancer, I felt that my life was over and that I would not be 'normal' with only one breast. Of course, the passage of time has made me realise that this is simply not the case. So there you go. That is my argument for NOT. Simply thank your lucky stars, look after your remaining health, revel in survivorship and never think that you are any less of a woman. If anything, you are more of a woman and, at the end of the day, they are just lumps of fat lol xxx           

trugbug69
Member

Re: To reconstruct or not ?

HI ALL

CAN I ASK THOSE WHO HAD BACK FLAP DID THEY HAVE AUXILLARY LYMPH REMOVAL AS THAT IS CAUSING SO MUCH PAIN AND AFTER 2 1/2 YEARS STILL VERY WEAK HAVE GOT LYMPHODEMA.

WONDERING IF THAT CAUSES PROBLEMS?

THANKS TRUDI

CANER ON TV AGAIN NOW!!

XXXXX

trugbug69
Member

Re: To reconstruct or not ?

SAME I AM NOT SURE CAN I FACE MORE SURGERY? AND I THINK MAYBE JUST REMOVE OTHER AS VERY LOP SIDED WAS SO EAGER NOW OT SURE MIGHT JUST LEAVE IT 

READING REPLIES HELPED

THANKS X

Pod-1
Member

Re: To reconstruct or not ?

Hi Anniewol

 

You summed up many of my thoughts very well. When I had my mx I went through so many questions about whether to reconstruct or not. But I finally decided not to for all the same reasons you mentioned. I'd just got my life back on track, and like you was comfortable with myself. Similarly, the thought of having more surgery was such an unknown quantity i.e would it be successful, would I get any infections, would I still have functionality in the areas where tissue was taken to reconstruct etc etc. Having chatted to a few ladies both on the phone (throuhg the "someone like me" service) and through this forum, the overall feedback was that the surgery was quite major, with equal recovery times. I'd just got over one major hurdle (i.e the treatment and mx), so to go through more disruption, was just something I didn't want to contemplate.

 

It took me some time though to arrive at that decision, but the ladies on this forum have been incredibly helpful in telling me about their experiences, and has been such an insightful experience.

 

Like you - the cancer has been removed, and I just want to move on with my life.

 

Thank you for your thoughts

 

Pod xx

Anniewol
Member

Re: To reconstruct or not ?

Hi Mustang Sally

I know it is a hard decision to make, lots of questions come to mind like what will I be able to wear, will anyone notice, will I still feel feminine?

I had all of these thoughts, had my MX in May and decided no reconstruction - I just wanted the operation, the cancer gone, and to move on.  The thought of a longer operation, more time in hospital, another scar to heal really put me off.  I was adamant about the no reconstruction and 6 months later have not changed my mind.

I have changed some of the clothes I wear, am self conscious if it is a low V neck top so wear a camilsole underneath, tend to go for more patterned tops now especially if I decide not to wear the prothesis.  Usually wear the softie one with a crop top that is pocketed.  I play golf and have found that wearing this is absolutely fine.  Matalan do some good crop and sports tops that aren't expensive. I am 65 but don't feel it or probably act it either - according to friends.

In my mind the cancer has been eradicated and I am comfortable with myself, the thought of going back for more surgery just for what I will class as vanity reasons is not on my agenda.

Just make the right decision for you, GOod luck xx

 

Pod-1
Member

Re: To reconstruct or not ?

Hi Mustang Sally

 

When I started this discussion earlier this year, I had completed treatment and gone through the usual sort of regime - chemo, lumpectomy, Mx (no reconstruction) and radiotherapy (in that order).  I'd finished treatment around June last year.

 

Prior to my surgery I was adamant that I was going to have a reconstruction. But that was before I knew what options were available to me. Thats when I came to this forum to get some help and opinions.

 

Firstly, let me say that everyone has been incredibly supportive and provided lots of insight into their experiences of reconstruction. So thank you to all who replied to me.

 

Anyway - to get back to the point !

 

Following my mx, my surgeon discussed what types of reconstruction were available to me. I couldn't have an implant, as I'd had radiotherpay and therefore, the only other options were to take flesh from other parts of my body (sorry if that sounded a bit crude - but thats basically what it is !) whether it be LD flap, DIEP etc.

 

Neither of those options appealed to me but I really wanted to have a breast back. So I was at  real cross roads about what to do. I had just started to get my life back on track, finished with hosptial appts, my mx scar had healed nicely, and I'd gone back to work. So the thought of having to go through a further 6-8 months of recovery (due to reconstruction) also played a part in my dilemma.

 

I have to say though - I have been living without a breast now for best part of 2 years, and am managing quite nicely. I can wear pretty much anything I normally wear (except for perhaps any nice strappy dresses.....which I don't even wear that often anyway !). I can wear a bra like any other lady outhere, and the prosthesis does the trick. No-one is any the wiser. Don't get me wrong - there are still times when I really would love to have a breast back, and one of the biggest reminders to me is when I walk through the lingerie dept of a high street store and know that I can't buy any of the lovely bra's that are on sale because they are not pocketed. It's a constant thorn in my side, and it's the only time that I get upset. But in the grand scheme of things, having the surgery has given me a second chance to life. So I can't complain too much.

 

I'm not treated any differently because I only have one breast, and those that know me, know the journey I've been through and respect that. I am no lesser lady becuase of it.

 

So in one sense, it sounds like I have decided not to reconstruct (at least for the time being, until they discover new ways to reconsruct !). Having read other peoples experiences of post surgery complications and difficulties, I would rather have a quiet life and full health.

 

So, I don't know if my wafflings have helped, and of course, everyone is different, and has their own thought processes of whats right for them. All I can say is, take your time in deciding and don't rush the decision. I have had plenty of time to get used to my situation and have had time to think and reflect (despite wanting to rush it). As time goes by, I am more comfortable with my own circumstances, and for now I feel I have made the right decision not to reconstruct.

 

All the best to you in whatever you decide.

 

Pod xx

riversidedawn
Member

Re: To reconstruct or not ?

Hi MustangSally

 

I've had a similar experience, mx Sept 14 with immediate implant which got infected during chemo and removed 3 months later. Had an expander put in in May this year followed by rads in July. It's not right, but better than nothing, I couldn't cope with prothesis - I'm a bit of an active sporty girl so it would be a nightmare. I'm due to have expander replaced with permanent implant in the spring.

 

I've gone round and round in circles about it as I had the previous infection and was against it but now feel like I'm moving forward and would prefer to have the implant and an uplift on the other side, then hopefully the daily reminder won't be so harsh.

MustangSally
Member

Re: To reconstruct or not ?

 Hi all - I'm new to this forum

 

I'm in a similar position - trying to decide whether or not to go for further reconstruction.  Had mastectomy and immediate LD flap with implant in Feb this year.  Wound did not heal, eventually got infected and i had to have wound debridement and removal of implant in May.  

 

Had previously had lumpectomy and rads in 2013 same side so not the best candidate for expander and don't want any more major surgery.  Had two consultations with two different plastic surgery registrars - one didn't recommend expander and the other one did!   Now I keep changing my mind about whether or not to give it a go. I am 60 now and not likely to want to expose any cleavage even if I had one but on the other hand prostheses are a bit of a faff and it would be nice not to need it.  I agree absolutely about the feeling of the implant not being part of you and like some alien object stuck on your chest.  In many ways I feel better without it and I echo what some others have said about getting your life back, putting it all behind you etc, but finding it really hard to make that final decision to give up on reconstruction.  I have another appt in March next year and will have to decide by then I think - I don't think I can keep putting it off and making another appointment for however many months time - it's not easy though is it?

Pod-1
Member

Re: To reconstruct or not ?

Hi Dolly - thanks for your feedback. Wow - 12 hour operation! That is epic! But sounds like you made the right decision for you. How long did it take you to recover and get back to some normality? Altho many say the DIEP is the 'gold standard' of reconstruction - I've also heard that recovery is also equally as epic! I must admit - I'm not drawn to the DIEP avenue - besides which, I'm not sure if I have enough flesh on me for the procedure!
I'll PM you for further details xx
Pod-1
Member

Re: To reconstruct or not ?

awww thank you Naz. Superstar xxxxHeart

NAZ
Member

Re: To reconstruct or not ?

Bless you Pod, you sound a lovely person and for what it's worth, i think delaying things for the time being at least, sounds like the right decision for you.

 

It is good that you feel more informed, having read our experiences because at least then, you are able to guage exactly what each of the procedures entails and the likely cosmetic outcome (which does differ hugely, depending on which procedure you opt for.)

 

Enjoy life for now, but remember we are always on hand to answer any further questions you may have.

 

Naz xx

 

 

 

Pod-1
Member

Re: To reconstruct or not ?

Hi Naz & Roadrunner
Thank you so much for your responses and also for your support. I am so glad I joined the forum as there is such a great community feel and it's a great place to get educated. I am humbled at everyone's input and support. It's nice to know I'm not going through this alone.
But to answer your question Naz - Whilst I still haven't properly decided (I think it's too soon to undertake major surgery - mentally as well as physically) - I think I am teetering on not having reconstruction. Whilst I would love to have a breast back - there seems to be lots of risks and compromises involved. Reading everyone's experiences about what they've gone through and how implants feel etc has been a real eye opener. And I mean that in a positive sense as it means I am better informed about things. I'm unable to have implants due to radiotherapy - which for me hugely changes the ball game.
Maybe in a few years time - there will be some advances in reconstruction - I don't know. But up until that time, I think I should defer my decision and see how life treats me with one boob!
I can't thank everyone enough for their continued support.
Pod xxx
RoadRunner
Member

Re: To reconstruct or not ?

Pod,

 

I don't have a dent - does that just happen when you have fat taken from your back?  I am slim, no fat, so had an implant.  The scar sits very neatly under my bra strap - this is what they aim for.  It is hardly noticeable, I don't think anyone would notice it unless they were looking for it.

 

As for tightness - I don't have any, I assume down to the extra procedure my PS did as I mentioned below

NAZ
Member

Re: To reconstruct or not ?

Hi Pod

I don't have a dent, just a scar which sits at an angle on my back. My bra strap covers it, so not visible then. The tightness I think is all to do with the muscle being moved and perhaps the implant sittmg tightly under the muscle, I am not sure. My experience is that it does ease over time, but i am always aware of the implant sitting there and unfortunately( for me at least), still does and I think always will feel rather alien (hope that does not sound too negative?)

 

The issue i have, is that when the recon itches, I can't scratch! Very annoying, as it is all numb.

 

Anyway Pod, how you are feeling about it all now, are you beginning to feel more informed about things? I stil think it is early days for you and you might benefit from moving forward with your life a little first. That said, only you can decide how you feel about living with the one breast. Lots of ladies are fine with it I know, olthers not so, it's a tough one isn't it.

 

Take care.

Naz xxx

Yvie178
Member

Re: To reconstruct or not ?

Hi marcella I had immediate recon with strattice last February 14 . The swelling does eventually go down and the bowling ball tightness does lessen but I am always aware of the implant and it does ache somewhat - not pain just slight discomfort . It looks good though I do have visible rippling at times as quite skinny on top though nothing too bad. I would have the same done again if I need other breast removed. Implant is ok so far . Hope that helps
Pod-1
Member

Re: To reconstruct or not ?

aww Thanks FizzB. I hope the massaging helps with the tightness. I'm sure the scar will heal well in time. My mx scar has healed beautifully.
Pictures would be really helpful and useful. Not sure how it can be done tho. xx
FizzB
Member

Re: To reconstruct or not ?

Hi Pod! I've had bilateral so have a scar that runs pretty much across the entire width of my back. I have no real "dent" to speak of though. Obviously it's still all very lumpy bumpy where the scar tissue is healing etc (I'm 10 wks post-op) but there's no obvious sign of where the muscles was removed, although, as you rightly say, this would account for the tightness. I'm quite slim in build as well so the missing skin would also contribute to the tightness too. Am hopeful that with regular massage & patience (!) it will eventually sort itself out. If it's possible to send photos I'm happy to if that would help??
Lisa x
Pod-1
Member

Re: To reconstruct or not ?

Hi everyone - Pod here again ! I have another question for you ladies that have had the LD flap. I have heard that this type of reconstruction can leave quite a dent in your back (presumably where the muscle has been moved from & would possibly explain the tightness that many women speak of). Is this the case and does it bother you ?

 

Thanks

Pod

newey47
Member

Re: To reconstruct or not ?

thanks marcella, i appreciate you sharing your experiences, you have been through a tough time too. Well havent we all one way or another. Everyone on here has.....I am (I thought) in the middle of my menopause I am 56, I still get the hot flushes,sleeplessness etc etc but the final drug i am on is for women who have been through the menopause, so I do have a few questions to ask about that. i.e. how do they know for deffo I am through it as as far as I am concerned I am in it. Unless the chemo brings on the final bit of it anyway.  Who knows.  I read up so much on everything but there are always unanswered questions. You take care and hope the implant carries on improving. Val

marcella
Member

Re: To reconstruct or not ?

Hi Val,

 

poor thing, I can sympathyse with you about the lymph nodes removal. 

  I was lucky: on the 6th January I underwent a lumpectomy with sentinel node biopsy.  I think they took only a couple of nodes under the left arm and fortunately my armpit was clear of cancer.  So the cancer was only on the breast but I hated the blue dye, the sore arm etc. But I think that the total removal must be really nasty and painful.

Before the last one I had already had 4 operations in the space of 3 years, always taking little chunks here and there and when the last mammogram revealed that there was something equivocal and that it was this time invasive DCIS, I had to have a mastectomy. 

  To be honest I was advised to have a mastectomy the very first time my pre-cancer was discovered.  It was found not through the mammogram, that had been negative only six months earlier,  but because my left nipple started bleeding and that was my only symptom.  I could not believe that the surgeon I had then was recommending a mastectomy for pre-cancer but in the end he was right.  When they say that pre-cancer may/may not  turn into invasive cancer in about 10 years, it only took mine 2.5 years to turn into invasive.  To anyone out there with pre-cancer:  get rid of the nasty little cells asap!

 

Since the invasive cancer was very small and had not spread to the nodes, I was told that I don't need to undergo radiotherapy or chemio.  The only medication I must take for 5 years is Anastrozole which is supposed to inhibit cancer cells' growth.

  So as I am 61, I am udergoing a second menopause with hot flashes, tiredness, danger of osteoporosis etc.   But hey so what, it could have been a lot worse!

So because my skin has never been put through rads or chemio is still pretty strong and stretchy and because they didn't dig a hole into my armpit it looks ok ,even without a nipple.  However no comparable to the feel of my other breast.  But I knew that already. 

 

I hope that in time I will get used to the implant, but if my aches and discomfort were lasting and not just temporary, I would sooner have it removed and wear a prostesis inside the bra. 

 

I hope you are resting and taking care of yourself.  If the swelling does not go down as it should and you feel more in pain than usual, don't be afraid to be seen by your breast nurse/doctor for reassurance.

 

Unfortunately it's a long road to recovery but you will get there.

 

Best wishes and good luck

 

Marcella

newey47
Member

Re: To reconstruct or not ?

Hi Marcella

 

I have had the same as you on 10th March, however I did have complete node clearance under the arm too so not exactly the same. I am surprised you say the result is incredible.  I have healed well, but it does look pretty awful, it is so high up and hard compared to my real one.  I still have discomfort in the area next to the breast under the arm.  My arm doesnt feel as though it goes flat against my side.  I realise this might be to do with the lymph node removal.  TBH the arm has been worse than the breast.  I am not on pain killers now but it can be a little stiff and achey. I am sure there must be still be some swelling too, after all its not even three weeks yet.  I am hoping that the new implant boob will drop down over time as the weight stretches the skin. But if it doesnt, not sure i will be up for any more surgery to uplift the good one with an implant.  I might just leave well alone.  Good luck with the rest of your treatment if you are having any, I have to have chemo, rads and letrozole for 10 years.  A long road ahead yet.  Val

Pod-1
Member

Re: To reconstruct or not ?

Thanks RoadRunner.  I think I would agree with you on many aspects. The fact that I'm mentally going back and forth probably indicates that I'm not ready to decide.  I think I need to get on with life for the time being & see how much not having a breast bothers me.  Thus far,  I've managed ok - but just sometimes I worry about what I can wear etc. 

 

I would also agree with you about going thru a big procedure without any guarantee that I will like the result. And plus I worry about possible complications post op.  Reading some of the experiences  people have had,  has made me think twice about it.  

 

But never say never.  I think I should wait a few years and by that time - you never know,  there may have been some more medical advances and there may be different options available to me (I can live in hope !)

 

Thank you for your support. 

 

Pod xx

 

marcella
Member

Re: To reconstruct or not ?

I would be interested to communicate with other women who have had a single stage (mastectomy with strattice and implant) reconstruction bypassing the traditional tissue expander placement with the subsequent skin stretching process involved.

  Because I did not want 2 operations (1 to place the balloon, another to substitute this with the silicone implant) and I also wanted to avoid the 6 weeks of saline injections to gradually stretch the skin, i had everything done in one go. 

I was told by my surgeon that this process could be slightly more traumatic for the skin which has to be stretched in one go.  Luckily I had enough skin to completely cover the implant and the cosmetic result is really incredible.  Discomfort/ pain wise has not been too bad (it will be 1 month on the 11th April since my op)

in the sense that I was quite numb for the first 2 weeks then, gradually I have been feeling these sort cramp like sensations which can be uncomfortable and a slight burning sensation in the middle of my breasts.  By the way, I only had my left breast removed and reconstructed, that's where the small invasive and lots of high grade pre-cancer was found, the right one is still mine.  

 

I have no signs of infection (touch wood!) and I am putting it down to the tissues healing inside.   I did have a lot of twiching going on in my breast muscle but now not as often.  I was told that the breast can take 1 year to settle.

Has anyone else had this type of op? How has recovery been?  Two years on is the implant still ok?

 

I would be grateful for any reply.

 

Marcella