breast asymmetry correction surgery funding withdrawn

I had quite a large breast cancer tumour removed in March via therapeutic mammoplasty surgery, ie breast reduction. This was possible as I had large breasts, which meant a mastectomy was avoidable  When I was first diagnosed last October I was told I could have the other breast reduced to balance me later. However just before my surgery the local CCG changed their policy and withdrew funding for breast asymmetry correction surgery.

 

My surgeon made a special application for funding for me to have the breast asymmetry correction surgery but it was rejected, mainly on the grounds that this is now considered cosmetic.

 

I challenged the decision with the CCG, on the grounds that the policy changed during the course of my treatment so I was not able to make an informed choice (I have since established that one of the other hospitals I could have gone to still offers breast asymmetry correction surgery).

 

They have reviewed my case and rejected it again. Mainly because they now deem it to be uneccesarily cosmetic but also because I have not finished treatment - true, I am about to have a month of daily radiotherapy which I understand will affect the shape of my reduced breast - but also because I do not fit into the required BMI range, one of the criteria.

 

This makes me despair. After 10 gruelling months of treatment including 8 cycles of chemotherapy and 2 operations I am very low. I have a bald head, broken teeth and filings that I have not been able to get fixed until I am over the chemo, lingering nausea and wobbly bowels, total brain fog, toenails that have started to go black and ooze pus, chronic fatigue etc etc. In 10 days I start a month of radiotherapy (a 3 hour round trip each day) and 10 years of Letrazole. This treatment seems never ending and I can no longer remember what normal life was like, nor imagine getting back to it.

 

The thought of embarking on a fitness regime to lose the 26 kg necessary to get me into the required BMI range feels like another impossible mountain to climb. It would take me at least a year, plus you have to stay at the required weight if you get there for 6 months. That means I am about 2 years away from being able to request this again - with no guarantee they will climb down from their position that they won’t fund cosmetic surgery anyway.

 

I feel very upset about  my uneven breasts, more than I thought I would. I was a 36J and my reduced breast is about 6 cup sizes smaller. I have been given a prosthesis but it weighs a third of a kilo and is huge. I ordered a mastectomy swimsuit but it won’t fit into the pocket. However without the prosthesis to counterbalance my larger breast all my clothes skew visibly sideways.

 

My husband has gone to an bbq without me tonight as I simply don’t have the energy to organise a wig/hat to cover my bald head; dress to accommodate the huge sweaty prosthesis placed against my chest; and find a shoe that will accommodate my agonisly tender weeping toenails. And socialise with people who will ask me how I am, if I’m better, say the end is in sight, and/or keep telling me to be positive.

 

The injustice that hurst most is that If I had had a mastectomy I would be eligilbe for a reconstruction automatically - the CCG policy clearly states this. I think even for women who are overweight - does anyone know if BMI criteria apply to reconstructions? What I don’t understand  and can’t accept is why a post mastectomy reconstruction is routinely funded but surgery to balance women who have had their tumour removed via a reduction mammoplasty is not. It seems inconsistent to restore mastectomy patients to normal appearance, but leave women who have had breast conserving surgery with one and a half breasts for the rest of their lives. 

 

I have cried today at the prospect of my recovery being delayed so long while I struggle to lose four and a half stone with no guarantee I will be successful in the end.

 

I am told that the cost of having the surgery done privately is about £5,000 which is an awful lot for a woman who has been too ill to work during a tough year of treatment to find. The thought of gaining the confidence and fitness to go back to work part time in October is daunting enough without added pressure of fitting in a new vigorous exercise and dieting regime. Not to mention coming to terms with the newly altered reality that breast cancer can and does return in some cases. However much people try to be kind and tell me my wonky chest doesn’t matter, it does to me. I do not like to look down at myself in bed or the bath, with one newly reshaped perky small breast and one sagging huge old one, nipples very different in appearance and pointing in utterly different directions.

 

It seems cruel to call this cosmetic surgery as if we are unreasonable and vain.  I tend to avoid going out at al at the moment, and can see this becoming the norm. 

 

Has anyone who has had a therapeutic mammoplasty run into this problem of discovering that they can not get the surgery to correct their uneven breasts? I believe it is a national policy change so must be about to hit many women.

 

 

 

 

Hi not sure I can help but just wanted to reply as I can see how upset and distressed you are and understandably so. I cannot believe that they now consider this to be cosmetic surgery!! None of us chose to have this happen to us and I understand cosmetic surgery to be a choice. Have you been to the GP to have a chat with them and explain how it is making you feel? I wonder if they could get a referral to the other hospital that is still carrying out the procedure on the NHS. If not maybe your local MP might be able to do something. I think this is terrible as surely it should all come as part of the same treatment how do they expect you to live like that. As you say it is also not fair to expect you to pay as most of us who have been through cancer and treatment cannot work and finances are affected. I am currently going through reconstruction and have had 5 operations and still waiting for further ones to balance me up on the affected side so I fully understand how you feel x

I am so sorry you are having such a miserable time at the moment.   Just to answer your question about BMI and reconstruction and mastectomy, my surgeon offered  an immediate DIEP construction to me and told me there is quite a strict weight policy because it is a long procedure and from the anaesthetic point of view they won’t operate on women with a BMI over 34 because of the associated risk as it is not a life saving procedure (8 hours or so compared with a couple of hours for mastectomy).  I just squeaked into the right category but I turned it down because I was worried about having a long operation.   I am lop sided now but with my clothes on I look okay but do find things skew towards my good boob.  Also I have to keep buying new bras because I think the weight of the prosthesis wears them out quickly.     It is so unfair that the goal posts have been moved now for you and it is cruel indeed to describe the op as a cosmetic procedure like it was someone just wanting a boob job.   Just a suggestion re your prosthesis, could you look at getting a lighter one as there are some on the market which are a lot lighter than the ones provided at hospitals.  Is your BCN any good at advising about this?  Mine wasn’t much use and I had to investigate it myself.  I use a swimming breast form some times which is lighter and cooler in the summer.   Can your GP help at all with your toes?  Sending lots of hugs

Jane

Hi.  I’ve been watching this thread with interest as I am 5 weeks post mastectomy, awaiting reconstruction and most likely will need symmetry surgery on the healthy boob too.

 

I am sorry that you find yourself in such a rotten situation.  Feeling so down about how you look and everything else must be a vicious circle.  I did wonder though, are you handy with a needle and thread?  Could you get a good supportive swimsuit (non-mastectomy one) and stitch in some tape/mesh at strategic places around the cup to support and hold in place your prosthesis?  Sort of create your own pocket bespoke to your needs?  I am a dressmaker (as a hobby) and this isn’t the first time that I have come up with some wacky ideas!  Usually, I have my family to tell me I am talking rubbish, so sorry if I am!

 

Ezzie. X

Interesting reading ladies. I had my treatment privately, but transferred to NHS in Nov 16 when hubby changed jobs and no more private medical insurance.

I was dx in sept 14, had mx and immediate implant recon. Unfortunately this got infected during chemo as was removed. Had an expander post chemo, then 6 months after rads had it swapped for permanent implant and an uplift to the other side.

I have put on two stone since treatment ended and am now very lopsided and the recon breast is lumpy and too high. Back in march I asked my surgeon for further surgery to improve symmetry. Because my diagnosis was over two years earlier funding is not automatically available, so surgeon had to apply and appeal to get it. I was lucky because they have agreed and I’m booked in for DIEP at end of August. Lucky side effects of treatment that I now have a belly - DIEP was not an option previously.

I’m now anxious that this could be withdrawn. I believe that they have to take everything into consideration and the risk to your health is too great to undergo surgery. If you are seriously overweight then weight loss would benefit your health in so many ways.

Are you on medication for your low mood or seeing a Counseller? If you appeal on mental health grounds you may find they are more sympathetic.

I hope you can reach a resolution soon, or as a future goal to motivate you. You sound so unhappy there must be something they can do.

When I was diagnosed a year ago, I was offered either mastectomy with immediate reconstruction, or therapeutic mammoplasty followed by radiotherapy and later surgery to the good side for symmetry. One surgeon told me she won’t do symmetrising surgery until two years after radiotherapy, my own said six months is enough.

I’m having lift and reduction to my good side on Friday. When I went back to see the surgeon a few weeks ago, he told me that he was still able to get funding for this operation, but their partner hospital in Somerset has reclassified this as cosmetic and now won’t fund it. 

I certainly feel that it was a major part of my decision to opt for lumpectomy, they were very upfront that I would be left lopsided. I had to have a second op to remove even more tissue to get clear margins and there is a significant size difference now. I wear a partial prosthetic which is heavy and sweaty. I do have a pocketed swimsuit which is okay. But they seem to mostly make them in small sizes, what do they think is the normal age and weight of most women who develop this??

I really feel for you, this is a significant quality of life issue, and changing the goalposts after you’ve made your decision seems so unfair. I certainly felt like I’d chosen a package of treatment with this surgery at the end of it.

Sending you a hug, I’m so sorry for the position you’re now in.

I am so sorry, I am in the exact same situation. I was told I could have symmetrising surgery when I started treatment 8 months ago and now that has been torn away from me. I understand the pain you are going through and the NHS has completely failed vulnerable women like ourselves. 

I didn’t know about this new policyear. I had a lumpectomy in Jan and was told I could have symetricy op a year after I finish is he’d treatmenthe. Also to have surgery to make my axI’ll aryl scar a bit tidier as look very obvious and messy at moment after having 34 lymph nodes removed.sounds like this won’t be an option for .example anymore. Doesn’t seem fair that we have been tolddoing we could have the correct ion surgery and now maybe not
Some people get booby jobs on national health so don’t understand why cancer patients can’t have this surgery.

I really feel for you - it’s just such a tough battle in the first place and it doesn’t seem fair at all. It definitely isn’t cosmetic surgery. All I can say is keep fighting for the operation and complaining to the highest people about how you went into the first operation with an expectation that the complete job would be done. As far as you are concerned you are still having treatment and you shouldn’t have been lead to believe that the unevenness would be rectified once your initial operation has settled.