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Reconstruction or not?

20 REPLIES 20

Re: Reconstruction or not?

Hi Celia,

 

I’ve been having a dig around various CCG websites and found that NHS Bristol, North Somerset and South Gloucestershire CCG have produced a document detailing healthcare service proposals for the next 5 years of which breast reconstruction and rebalancing after cancer surgery is included. The document is open for public feedback until 15/04/2018 so would suggest all you ladies out there that live in the area have your say.

 

https://www.bristolccg.nhs.uk/media/medialibrary/2018/01/bnssg_proposals_jan2018_summary.pdf

 

Celia I’m not sure whether this includes your area of Somerset but might help your cause if not.

Re: Reconstruction or not?

Hi Celia,

 

Bless you, you are not a freak, you’ve fought breast cancer and are trying to deal with what it has thrown at you. Big hug from me.

I’m sorry to hear that you have been having problems with your CCG, it seems really harsh especially considering what you will have gone through.I assume from your post that an individual funding request form has been completed and your case been discussed at the Individual Funding Request panel at your CCG? I’ve checked on Somerset CCGs website and according to their individual funding request form, consideration may be given when there is a disparity of 3 or more cup sizes, however looking at the form they will not consider it to resolve psychological issues due to lack of evidence. The difference in the weight of your prosthetic and your breast may also have an impact and cause problems with your back and neck, which should probably also be taken into consideration. I’m not sure whether you put forward any correspondence with the application detailing how it is affecting you and how you will benefit from the treatment, but that may be something worth doing. 

It is also worth looking at other CCG websites and see what surgery they will and won’t do. The main thing with individual funding requests is that you need to prove that your case is exceptional and you are significantly different to the general population with the condition.

 

Link to form if you haven’t already seen it:

http://somersetccg.nhs.uk/EasysiteWeb/getresource.axd?AssetID=6344&type=full&servicetype=Attachment

 

Good Luck and hugs

Krys

Re: Reconstruction or not?

I'm amazed to hear that people are still being offered symmetry surgery, that's good to know - I shall bring this up in any future conversations as here in Somerset it is no longer offered on the NHS and my pleas have fallen on deaf ears at the CCG. I was able to have my quite large tumour removed via a therapeutic mammoplastly rather than a mastectomy, as I have/had big boobs. My operated on breast is now small and neat, but the other one is huge and droopy - I was a J cup, and am now prob one C and one J cup. It really gets me down every day. I have a prosthesis but don't want to wear such a huge, heavy silicone thing on my chest all day, I have a bra that flattens me out enough that I hope it doesn't show when I'm at work - but boy, when I get up in the morning, or bath/shower, or change - I feel like the freak I look! In ways that it seems impossible to convey to the budget holders who insist symmetrising surgery is a "cosmetic" luxury.

Re: Reconstruction or not?

That is exactly how I thought about it.

 

 My BCN showed me prostheses and gave me advice on bra's. She did the fitting later on. If you opt for no recon then wear a tight top and soft bra for your fitting about six weeks post op. - that will help get the prosthesis size spot on.

 

Best wishes

Re: Reconstruction or not?

Hi Anna,

 

One of the breast care nurses did show me the different prosthetics before I had my op so it may be worth asking at your local hospital.

 

I had my prosthetic fitted yesterday at my local breast clinic and I’m really pleased with the result. The lady that did the fitting was from an outside company and was obviously very experienced. She gave me several different types and brands to try, discounting some immediately because they didn’t look right before we made the final choice. As I’m a 34D I used to wear underwired non padded bras as I felt my bust was big enough without adding any additional padding. I’m now wearing non wired padded bras which evens things out so you cannot tell which side is the prosthetic and I’m actually a better shape.

 

Best wishes and good luck for your treatment.

Krys xx

Re: Reconstruction or not?

So sorry to hear that you have got to have chemo Susan. Not sure whether you will find it helpful but I have posted about what I did to recover from my surgery under I am recently diagnosed/ Diagnosed with Breast cancer/ New to all this.

 

Sending you hugs, Krys xx

Re: Reconstruction or not?

Just an update to let anyone in touch with this thread know that I saw my BCN today and explained that I had opted for mx with no reconstruction.  It was a hard decision, but it feels right for me, and I am as at peace with it as I can be. The nurse confirmed (as I had feared) that I'll also need chemotherapy, so at least I know I'll be able to get on with that sooner than if I'd opted for more complex surgery. 

I was greatly helped in my decision making by this thread of helpful and supportive discussion, and also by the members of the FlatFriends FB group, who were wonderfully generous with personal stories, and also in  sharing pictures of their outcomes, which I found inspirational and heartening.

I'm very touched to know that this thread might also have been useful to others in the same position.  I wish them all the best on their journey.

 

The thing I am learning, more than anything at present, is how helpful it is to talk to other women who have been through this.   Time on my own to ponder is important,but so is realising how much sharing can help.


Susan xxx 

Re: Reconstruction or not?

Thank you so much Flint for your perspective. I have been in touch with knitted knockers and really do think that seeing/feeling some prosthetics as well as hearing from women who have been there and made similar choices will help a lot. The more I read and find out about reconstruction, the more sure I am that it is not right for me. It seems so lengthy, involved and difficult. I I can see that for many women, it is transforming and the right choice, but for me, I think it would add to the burden. 

 

 

Re: Reconstruction or not?

Hello Anna

 Recon. did just not appeal to me for various reasons.

 

When dressed you should be able to get symmetry with a prosthesis although from reading on here some larger cup sized ladies have not been happy.There are many different types of prosthesis these days and if there is a  very slight difference then a padded bra evens it out. Some women, like me, cope well with losing a breast, for others it would be devastating. We are all different.

 

Perhaps some research into the specialist mastectomy suppliers of lingerie and prostheses will help you in making a decision. There are a couple online and they really are very good and will be able to advise you according to your cup size.

 

Immediately after the op. you will be given a softie to wear in your bra and there are also 'knitted-knockers' - quite a fun way to even- up while you are healing, if you are able to look at it in that way.

 

Good luck with your treatment.

 

 

Re: Reconstruction or not?

I am sorry to intrude, but wanted to thank you all for this really timely and supportive conversation. I am anticipating a unilateral mastectomy when my chemotherapy ends in March (all crossed I stay on schedule).

 

I have found the online resources from BCC excellent and I have been doing a lot of research and thinking. I will also, of course, be talking with the clinical team about the options and choices. However, there is nothing I value more than hearing from women who have 'been there'.

 
I suspect immediate reconstruction may be difficult because I will be going onto radiotherapy afterwards. I am not at all sure I want reconstruction. My reasons are that I have found being a patient really tough and I really don't want to prolong the experience with more complex/further operations. I also want to be well enough to make my son's Graduation and get back to work, socialising, exercising etc. Having said that, I am struggling a bit with the implications of being lopsided and adapting to life with a prosthesis. It all feels a bit tough, although that comes and goes (as with so many reactions/emotions to each stage of the breast cancer experience). I have also thought about asking for a bilateral mastectomy partly because I am, in common with many women, scared of recurrence and partly because it might help with symmetry. I don't know though. I think the most pressing thing for me at the moment is understanding more about unilateral mastectomy, reconstruction decision-making, especially living without reconstruction and adapting to life with one prosthesis whether on a temporary or permanent basis with all the effects on self-esteem, image, identity etc. 
 
All of which means this thread is a gem and I am beyond thrilled to have found you here. Thanks for reading/listening and for being willing to share your experiences. Susan, I send you all the best for your decision-making and, of course, treatment beyond surgery. I too have just joined Flat Friends, so I hope we might connect there too. 

Re: Reconstruction or not?

My surgeon did mention I could have the other breast removed for symmetry in the future, so it sounds as if it is offered on the NHS. 

Re: Reconstruction or not?

Yes - I'm self-employed too, and really fretting at the idea of being out of action for ages. And I'm so glad to hear your positive story. Whilst accepting that for many people (including several personal friends) reconstruction is vital for their sense of well-being, I'm also very struck that I haven't, so far, found anyone who regrets the decision to go flat. That feels very important and useful.

Re: Reconstruction or not?

Hi Susan, just to add I decided against reconstruction for my left mastectomy.  It was my gut reaction after the surgeon described it to me (Diep flap) because it seemed a long operation with almost certainly a further op.  The BCN told me that I should think about it carefully but I still went with my gut reaction and turned it down.  Also I am self employed and was worried about losing my clients if I had to take three months to recover.  I was doing a few hours work from home less than two weeks after my mastectcomy.  Three years on I have no regrets at all and don't mind being lop sided. I use a prothsesis on my left side and it looks fine when I am dressed. I swim and have an aqua boob although sometimes I go flat - no one at the pool notices.  Good luck with everything.

Re: Reconstruction or not?

And thank you too, to Krysbe. I'm grappling with the fact that I can theorise till I'm blue in the face, but I probably shouldn't discount gut reaction as a guide to what decision to take.

I'm a bit anxious about assymetry, but I'm also very reassured by all the brilliant women who have chosen to go flat and been so positive about their experience, and generous in sharing images of the reality. I didn't know about that website, so I'll check it out. I've been accepted into the Flat Friends Facebook group, and am finding that very helpful too.

Re: Reconstruction or not?

Thank you Nicola, I'm really grateful to hear of your experience, especially as you are of a similar physique to me, and also know about the demands of teaching young children, which I also do. I'm aware everyone is different in their history and decisions, but I'm slowly building up a useful picture of what is involved, and real stories are such a useful complement to all the bewildering diagrams and photographs. And not wearing a bra on an obligatory basis would definitely be a plus!
Best wishes, and thanks once again,
Susan x

Re: Reconstruction or not?

 

Re: Reconstruction or not?

Thank you Nicola, I'm really grateful to hear of your experience, especially as you are of a similar physique to me, and also know about the demands of teaching young children, which I also do.  I'm aware everyone is different in their history and decisions, but I'm slowly building up a useful picture of what is involved, and real stories are such a useful complement to all the bewildering diagrams and photographs.

Best wishes, and thanks once again,

Susan x

Re: Reconstruction or not?

Hi Susan,

I’m sorry that you find yourself here but welcome to the site. It’s not an easy decision to have to make but it’s important to go with what feels right for you. The assumption seems to be that if you have a mastectomy you’ll have reconstruction. I have every respect and admiration for all those ladies out there that have had reconstruction, but for me it didn’t feel the right choice. I was offered a skin sparing mastectomy as they can then reconstruct at a later date but asked my surgeon for the best possible cosmetic results with no extra skin, he did say he had one other lady that had asked for the same so I think I’m in the minority here. I had my op 6 weeks ago and am happy with the result, in fact it’s my remaining boob that looks strange, not my flat chest, I know that’s probably not a normal response. I will need a prosthesis as I’m a 34D so it is noticeable but have found that if I wear clothes with a small pattern my husband says you don’t really notice, but then I do wonder whether he needs to go to Specsavers.

 

You might find the following website useful, it certainly helped me to feel more comfortable with my decision.

 

http://breastfree.org

 

As one lady on the breast free website says, you can get all the input in the world but the decision needs to be right for you.

 

Best wishes

Krysbe. Xx

Re: Reconstruction or not?

Hi Susan,

sorry to hear you find yourself on here, I know what a terrible blur things are in the early days. I can understand your dilemma but if it helps I can share my experience. I was diagnosed Christmas 2014 with widespread DCIS needing left side mastectomy. Initially I thought I didn’t want reconstruction but then decided having been given the options to go for it! I am also a B cup, my surgeon suggested doing an implant reconstruction using pigskin mesh to support it, which could all be done in one operation at the same time as the mastectomy. He told me he had done 50 of these and had 2 reject, so I decided to take the risk. 

I was in hospital 2 nights and came home with a drain in which was removed after 7 days. Recovery was slower than just a mastectomy because the chest muscle takes a lot of strain and you have to slowly build up the time you sit upright/stand/walk. I was off work for 8.5 weeks (I’m a primary teacher). The boob is numb and is does feel alien for a long time (over a year) but now I am no longer aware of it , I still wear non wired bras but I run, play badminton etc. It is really important to do the exercises they give you as under the arm is stiff (and still is a little, I wouldn’t do press ups!) The cosmetic result is very good in clothes and swimwear and even without it’s pretty good, but the other one droops! I could go bra less if I wanted to other than when doing exercise! Good luck with your decision, Nicola x

Re: Reconstruction or not?

I was diagnosed on 4th Jan with Grade 3 invasive cancer and also DCIS.  The area of trouble is 33 mm across.  Low hormone receptor status (2/8 and 3/8).  HER not known at present.

 

I was immediately offered a mastectomy and reconstruction.  Will also require sentinel biopsy.  Possible chemotherapy depending on results.

 

In the general haze of diagnosis shock, I was inclined to go along with reconstruction. Partly, of course, because it's what they suggest.   Having thought about it, and read the literature I'm not so sure.

 

I'm a 55 year old married keen gardener and piano player (I earn my living from both, and am self-employed).  I hate wearing a bra and avoid doing so wherever possible (I'm B cup, so can often get away without, especially as much of what I do is working independently.)

 

I'm very, very squeamish and a thorough coward.  I don't think I'm up for the repeated surgery that reconstruction offers, especially as the result, however cosmetically satisfactory won't be, or behave, like a real breast.   I fully recognise that it's right for some people.  But I'm not sure it is for me.  

I'd be really grateful if anyone can offer their insights, one way or the other.  

Reconstruction or not?