Reconstruction surgery

Diannes48

Hi everyone
Its been a while since i have been here a rough couple of months. Lost my mum and aunty to cancer and was diagnosed myself for the second time,but the reason im here is to ask for some feedback. I am currently sitting on a committee that are creating education materials for reconstruction surgery and want to know what you the consumer would want ro see included in this material. Things like the procedure, cost ect. From a consumer point of view what is needed in this material?
Thanks in advance for your input.
Di

kmakm

Cost. Clear explanation of gaps. You should be able to ring plastic surgeon's offices and get easy access to information as to how much they charge.

Clarity around what you require post-operatively. Compression garments. Some surgeons require you to wear them, others don't. Who provides them. If your surgeon doesn't, where do you get them, how much do they cost.

Photos of before and after, at different stages of the healing. Not just the success stories. The not perfect results. The failures.

Clear information about wound and scar care. What do you put on? Do you put on anything? Do the expensive products have an advantage over the cheap ones? Where is the scientific evidence?

Nipple creation surgery. Does it always work? What are your choices? What do you have to do to help it work?

How do you find a good tattoo artist to create your nipple/areola? Some surgeons provide this as part of their treatment package, others don't. How much does it cost? How does it differ from regular tattooing?

Quotes from women about how their foobs 'feel' to them.

Hope that helps! Very good idea to have a kit of education materials. Please come back to us when it's finished so we can see what's produced. K 

primek

Infirnation of recovery times and any long term issues such as muscle weakness etc. Perhaps an idea about that so dependent on your lifestyle can help you decide. 

[Deleted User]

@Diannes48  I’m so sorry for your loss. I hope you’re doing ok. 

Educating women about reconstruction is great. I have some ideas to add to the excellent ideas mentioned already. I agree, cost is a huge issue for women. I think continuing to inform women of reconstruction options before a mastectomy is important. Also,  letting those women who have to have a mastectomy plus radiotherapy,  know that there may be a significant delay in radiotherapy because of the damage caused by radiotherapy. 

Also, perhaps information about the registry for implants and an indication of whether implants are a cancer risk would be helpful. Another issue is how long it is before implants need to be replaced.

I was completely unprepared for the level of pain involved in LD reconstruction and the complications associated with this. There is a need to make women aware of the ongoing lack of sensation in reconstructed breasts. A panel of women who have had different types of reconstruction might be a good idea. 

Sister

I am still undecided about whether to go down the reconstruction path and have read these comments with interest.  I thought that it might be useful to add that I was discussing this with my bra-fitter the other day and she said that she has spoken to many women in the course of her work and that the biggest thing that she has noticed is how many go in to it not realising the magnitude of the surgery and also that the results are often not what they had expected (whether due to unrealistic expectations or not being made aware of outcomes).

Afraser

It's hard to decide isn't it? I thought most women did have reconstruction, and that I was the odd one out, but no, lots of us don't. I didn't ever feel strongly in favour - I didn't fancy implant replacements when nearly 80, and didn't want any more surgery if I could avoid it. Mainly, I didn't have a problem about how I looked, but it's very easy to understand that's a big issue for many women, particularly after bilateral mastectomies. Many women are very glad that they did have reconstruction, irrespective of time, cost and procedures but no-one loses out with more information. Like chemo though, you may not really know how you will feel till you try. So my only wish, in addition to the practical suggestions already made, is for women to know a bit more about living without breasts as an option too. 

Vangirl

I have approached the decision from the perspective of which is the least worst rather than what is the best option. I hope my eyes are open to the reality that what I will have after surgery will not replace what I currently have.

Diannes48

Hi
Thanks to everyone whos commented its a subject we need more information about. Keep comments coming and i will keep you all updated
Di

kmakm

@Vangirl I know there are different opinions out there on this subject, but I feel very clear that a reconstruction is not a replacement. I don't have new boobs. They're sacks of belly flesh for a cosmetic outcome only. They don't give me sexual pleasure, they have little sensation at all. I feel to think of them a breasts is a path to disappointment. I'm very pleased I've done it, but I don't have breasts anymore.

Vangirl

@kmakm yes exactly. By having a reconstruction it just means I won't need to muck around with a falsie in the bra or be lopsided. Not hoping for a lot beyond that.

arpie

Hi @Diannes48  - I am So sorry to hear of your family loss and recurrence!  

Great topic - lots of info all on the one thread.

I have a half a dozen friends who've had mastectomies & some have & some haven't had reconstruction.

Most of my buddies have chosen NOT to have reconstruction - for a variety of reasons.  One has had her prosthetic replaced when it ruptured when she had a followup Mammogram - the pressure of the machine being too much for it.  Most have NOT had it, mainly due to the additional surgery & risks involved & the added costs.  Some have been disatisfied with the shape, feel & look of the fake boobs ..... and there is evidence of some inserts that actually become cancerous recently (none of my buddies, luckily - at this point in time!) 

I guess it all breaks down to your age, your own image of yourself & feel 'as a woman'?  

If I had had to have a mastectomy, personally, I don't think I would go for a reconstruction - but it is a very personal & private decision to make - I am also 65 and have never been a 'girly girl'.  Not sure if that makes any difference?

Looking forward to reading more comments.

Suzi_S61

@Diannes48 Hi I also would like to offer sympathy for your losses. I think adding information about the types of reconstruction on offer and the pros and cons. Also if some procedures are eliminated for different reasons. Thank you xx

nikkid

Less than 10% of Australian women opt for breast reconstruction - much fewer than in the US or Europe.

Also, when discussing reconstruction, it's vital that we are careful in the language we use. Reconstruction is NOT cosmetic; it's not just for 'girly girls'. For many of us, it is an essential part of our recovery post BC.

The key is not to judge anyone for the choices they make, but to celebrate that they are able to make them .

kmakm

As someone who has had a reconstruction, I agree with @nikkid. It has definitely been an integral part of my recovery. Simply put, I would not feel as recovered as I do (which frankly I don't particularly feel very much yet) if I hadn't had a recon. It's not for everyone but it was very much for me. K xox

primek

I think of my reconstructed breasts as memorials of my breast. I miss the sensation of my breasts but I do feel complete. It takes time to accept all that goes with this canxer journey I think. 

socoda

I know that my mental health would definitely not be as good if I had not had reconstruction and I'm very greatful to have had the opportunity for the surgery.