Hello, i am new to this but would love to hear from anyone else who, like me has been for their 2nd appointment with oncologist to be told that it has been decided by the hospital that i am not allowed to have reconstruction. There is a chance if i can ask/persuade my g.p. to refer me for reconstruction. Is this a sign of the times? Ive been told it is not about me but no-one else has been refused, obviously i had a pretty bad day yesterday when the decision sunk in. I had been promised recon at any time i wished after my ops last year,whether it be 2 years or 20. Thankyou for reading this, i would appreciate any comments.
(P.S. I realise that funding is an issue. If i had been told it was not likely that recon was available it would not have been so hard to bear i guess)
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I don’t know what surgery you had - but my understanding is that guidlines are that you will automatically be offered a re construction either immediate or delayed if you are having or have had a masectomy. For a WLE it is different and you may not be offered one on NHS anyhow as it considered you still have a breast even though it may not be as it was before. x
This is despicable.
Are there medical/clinical reasons for their refusal?
Why does your GP have any role in this? And why do you have to “persuade” your GP?
My understanding is that all mastectomy patients are entitled to recon at any point. What does your BCN say?
Aside from your GP your first port of call must be PALS. Explain everything to them and get them working as your advocates.
I agree with what saffronseed has said. If you have had a mastectomy you should be offered either immediate or delayed reconstruction. If you have had wle then you can be refused.
I have heard of people being refused because of health problems and that includes being over a certain of bmi but otherwise I cannot understand any hospital refusing.
I am booked in for my delayed diep reconstruction on 7th September after mx in 2010 followed by chemo and rads. I saw my ps in February and have been in the waiting list since then.
If yours was a mastectomy then you need to demand to see a plastic surgeon either a referal from your breast surgeon, oncologist or gp. Hope you get some answers soon.
Hi there
I agree with the other posters, in that if you have had a mastectomy, then you are entitled to a full reconstruction.
What does your breast care nurse have to say about it?
And your breast surgeon?
There are several different types of recon, ranging from the more simple tissue expander type, to the more complex tram flap. But there should be something out there to suit every woman.
I would definitely be asking to have a meeting with a plastic surgeon as soon as possible,as this does not sound fair at all.
All the best.
Naz x
Thankyou for your replies, at least i dont feel quits so alone now. After diagnosis in April 2010 i had a wae and full ax clearance but then had to go back as a safe margin wasnt achieved, i was then offered another wae or mastectomy which i chose because of speed tumour had grown and the fact that it had made a couple of little deposits in my armpit! Then i had a3rd op because i developed a large haematoma under the scar after the mastectomy. Chem and rad followed and i am now healed and working hard to achieve bettr health. I was told that the plastic surgeons cannot take a referral from my oncologist anymore so it does look like the funding crisis is hitting home. My best hope is if my own g.p. can make a referral. The bcn i spoke to was shocked and is taking this up at a meeting. My fingers are firmly crossed, i dont expect anything instant but it would be nice to at least be on a waiting list. Thankyou for your responses,i feel supported. Im wondering if other women are going to hear this in the future though? The hospitals are having to cut back spending by a massivve amount.Thankyou for reading. xx
A friend who is quite high up in the NHS (though nothing to do with surgery or oncology) told me a few months ago that she thought reconstructions may not be routinely available because of the cuts. I didn’t believe her but maybe she was right.
If that is the case RR then we all need to start campaigning about this. Reconstruction is not cosmetic and to blame a refusal on the cuts is unacceptable. Nice clearly state that it should be available. Private Insurance companies pay for them and they will try to wriggle out of paying if at all possible, so they class it as part of active treatment.
Can I ask whereabouts in the country you are wonderhen?
Has anyone else encountered this?
I am outraged for you WH
Wonderhen - maybe this is more to do with a change in protocols of referrals than a refusal to do the actual treatment.
I have bad keloid scarring from my mx - my surgeon told me that I had to get my GP to refer me to dermatology and that she couldn’t do it anymore.
Seemed utterly idiotic to me given that I then had to take up my GP’s time for something administrative when my surgeon could have done it there and then in the hospital.
You need to write letters asking for an explanation… NHS, local MP, Sec of State for Health, Local paper … one letter fits all!
Well hang on - the exact nature of the problem needs to be established.
Wonderhen has just said “I was told that the plastic surgeons cannot take a referral from my oncologist anymore”
That is very different from “No you can’t have reconstruction.”
Oh god, I hope they don’t start cutting back on allowing reconstructions 
I’ve to wait a year for mine and by then they may see it as “cosmetic”.
I read your post and my heart went right out to you… you’ve probably dealt with how you look by thinking it’s temporary. If you’d have been aware you may not get a reconstruction you may have had more chance to adjust to things.
xxx
i had a MX to get the cancer out but was told at the time i would be able to go for recon in about a years time… that helped me to make to decision! fingers crossed for us all!
Really hope you get some answers soon wonderhen.
I am sure your BCN can act as an advocate for you, and speak on your behalf.
Reconstruction is not just something cosmetic. For many women, it is an essential part of recovery, and not to be dismissed.
If you want a recon, then you make your voice heard…!
All the very best.
Naz x
I would be interested how they define “cosmetic”. I think for some people it equates with the superficial, trival and totally unnecessary things that ageing film stars with too much money can spend their millions on and end up looking ugly and gross when they started out quite pretty. However I understand that scar revisions and attempts to deal with birthmarks or refashion facial injuries may count as cosmetic too, and nobody would say those are trivial because they deal with the often severe psychological issues tied up with how you look. It could easily be argued that for many women the loss of a breast comes into that category. Despite the best ministrations of the prosthesis team. But after all, it’s really not in the same league as not having a leg to walk on. Just my tuppenceworth!
And I think the problem raised here does seem to be procedural rather then rationing. My feeling is that it may be in order to separate out the surgical waiting lists and thus allow the cancers to be treated faster, I think everyone here who has had [or near-missed with] cancer would agree that’s a good idea. Just imagine if nobody could get an urgent half hour slot for mastectomy within a fortnight, because of all the elective five hour recons booked up eight months ahead… can you imagine having to wait those eight months to get your cancer off? We’d be suicidal!
Hymil - as many here will tell you recons are cancelled at the 11th hour all the time because they are low priority. No cancer patient is being bumped down the waiting list for elective procedures of any kind.
No a breast isn’t a leg. Obviously.
But that isn’t the point - the NHS/NICE guidelines say that all women who have had a mastectomy are entitled to reconstruction - either immediate or delayed.
Hymil but they are not “booked up eight months ahead”. My delayed recon is classed as non urgent. I go on a waiting list knowing that those who are having mx with immediate recon go to the front of the queue because the cancer has to be dealt with as an urgent referral. I have only been given a date this week for surgery in two weeks time. The issue here seems to be not being referred to go on the waiting list. As Msmolly has said it might just be a formality that the gp has to do that rather than the onc. Just as my onc would give me a form for meds such as arimidex but they are prescribed by the gp rather than the hospital. All to do with whose budgets they come out of.
Definitely cancer patients take priority. How do i know that? Because for the last week and a day, I have been walking about with an open wound and an implant exposed. I am told that that my new ps can’t see me for weeks as he is all booked up with cancer op’s. Fair enough, but i do feel that a good recon is a woman’s right, after mastectomy.
If they are going to make cut backs, or push them to the bottom of the pile, it is time to campaign!
Thank you for the replies. So should they be doing immediate recon for anyone do you think, would it be better if nobody had that, and all the mastectomies were focussed purely as cancer treatment? Why is it that some do, and some don’t? (I know that plans for radiotherapy come into it, but is there more to it than that?)
Naz, your open wound sounds horrible, I hope you can get it dealt with soon.