10-02-2018 08:02 PM
Hi I am sorry to hear you were refused a reconstruction, I had a reconstruction by a lady who it is claimed by the Daily Mailone of the top 10 PS in UK, I have the photos if you would like to take a look at them, it was a total disaster, BOTCHED bodies is more appropriate for her. Because I complained to the hospital about the mess she made of me 4 PS refused me! When I went for the consultations NOT ONE OF THEM noted I have skin cancer! The surgeon in Belgium did and he has addressed it rather than using cream a resgistrar used at another hospital where it is claimed a male PS is one of the top ten. We used all our savings and I went to Belgium and he re did her work and it is fantastic, I also got the surgery I wanted, here in UK they said I am too slim, yet the genius in Belgium has done a fantastic job. if you still have not had the reconstruction , I will help you raise the funds to go to Belgium, we paid about £18.000 is was worth every penny, I am more than happy to give you all his details and send to you the before and after photos!
26-08-2011 04:25 PM
Ninja I too hate the idea of disease still in there, I have now ..thankfully successfully completed the chemo, now bald, fatter and with no energy I await surgery on Oct 3rd!! I am having mx/recon I am travelling to a diff hosp as they cannot do recons in North wales! My BMI was too high for them to even consider it in Chester so said a surgeon of the team who did WLE, having taken 118gms ( his words"whopping great ammount" of tissue) they did not feel there was a ny chance of clear margins so another mx it had to be ( isn't one a lifetime enough?) I had node involvement this time and extensive LVI so I opted to go back to Scotland to the team I was under 14 years ago and where I have travelled to for mammos ever since! incidently had clear mammo in june 2010, then it all went wrong by xmzs!!! ) It was not a problem, the funding had to be agreeed but then they refer to Chester which is a different HA,so (the funding issue would be the same) it being in England, so funding was sorted and chemo finished perparations underway for surgery????
About refusal my sisters friend was refused she had issues with them refusing she is only in her 30's I think she has bone mets but certainly I think a stage 4 and they all but said there is no point!!! I believe she wrote to a professor asking his advice who refuted every argument they gave her and reminded her of her holistic right? not too sure of details and not wanting to put someone elses story 'out there' ( pm me if you want to know more)
she went to see her surgeon with the info and the upshot is she has her recon soon...shes overjoyed!!!!!
Wishing everyone well and as happy as you can be in all your individual circumstances xxxx J
26-08-2011 02:28 PM
Ninja, I had four months on neoadjuvant treatment; like you, I just wanted the B****d off ASAP too! The waiting time is very hard. You will be there soon, and it does also reduce the risk of seeding new tumours at surgery. I'm not sure but I think it may also reduce the risk of getting lymphoedema after surgery, if you have already done your chemo.
Wonderhen, good luck.
26-08-2011 10:48 AM
Lemongrove - I'm not sure about Stage 4 patients. If surgery is not going to impact on other treatments (i.e. chemo) or seriously compromise your health then I should think it is up to the PCT in question. And more probably individual surgeons.
Sounds like you have a good surgeon - are you going to have it done?
I really cannot face the current recon options but am keeping an eye on developments with micro-fat grafting. Particularly Dr Khouri at Miami Breast Center. Some stunning results and minimally invasive too.
Ninja - the great thing about neo-adjuvant is that you are getting stuck into the chemo straight away PLUS you get to see the direct effects of the chemotherapy. Some people I know who have had neo-adj had no tumours left (just a clump of dead cells) by the time they got into surgery. Hang in there.
26-08-2011 10:34 AM
I've been told that Salisbury is a centre of excellence when it comes to breast cancer - from inital dx right the way through to recon and beyond - and I've seen nothing to make me disbelieve it. I don't see my consultant now until January, so I'm determined to lose weight beforehand.. get my bmi somewhere approaching respectable before then!!! Be disheartening to be told 'come back in six months when you've lost three stone' when I could be taking care of that now....
26-08-2011 10:23 AM
Last time I saw my bcn, she told me that my gp would have to refer me back for a recon, as their guidelines had changed - but that the gps were well aware of this, and it would not change a thing - just another bit of red tape and someone else to see to send the letter. It was all to do with how funding was being allocated now, rather than cut backs on the procedure itself. I'm not actually in the mind-set for recon yet, but next time I see my gp (hmmm, may not be soon as last time I saw them was October when I found the lump...lol) I shall mention this, just to test the waters in case I may face future problems.
I'd say don't look on it as a refusal for recon..UNTIL you have spoken to your gp. It may just be a simple matter of a change of person doing the referral - which is how it was made out to me.
26-08-2011 08:40 AM
Wonderhen, without naming hospitals, are you in Sussex by any chance? I live in Sussex, and was refused reconstruction, because I am stage 4. They have recently said I can now have it, but only because the surgeon has made a unilateral decision.
26-08-2011 08:30 AM
MS Molly do those NICE guidelines apply to stage 4 women?
I was diagnosed with stage 4 from the outset, and originally I was told no reconstruction (as their policy is no reconstuction for stage 4 BC). However as I have not had any progression since diagnosis (21 months), and have got to know the surgeon (due to seroma), they have now said I can have reconstruction.
25-08-2011 10:40 PM
Hymil said: "can you imagine having to wait those eight months to get your cancer off? We'd be suicidal!"
I was Dx on 8 April. My tumour is likely to be removed surgically on 12-14 October. That's over 6 months. I had neoadjuvant chemo.
I want the bas**rd out of me ASAP.
25-08-2011 10:21 PM
Thankyou for your feedback,i really appreciate it. I dont want to state which hospital and spark off any panics but i am in the south of england. Different hospitals and different surgeons can and do practice widely varying options. A friend about 8-9 yrs ago had the mast and recon done all at the same time in Winchester where there is a well known pioneering surgeon practising. She was living in the catchment area and offered it. I did ask before my op but was told that they will do it but are not very keen and prefer to leave it for a while after mast.
Im seeing my g.p. on Monday so fingers and toes crossed, at least im alive and better than i was a year ago and i am grateful for that,im just not sure if id want to spend the rest of my days only having 1 breast.... I dont mind waiting at all,just be reassuring to get on a list. My thoughts go out to the lady with the open wound,hope and pray you get seen very very soon.
25-08-2011 06:56 PM
Totally agree with you msmolly,in that not all breast surgeons are good at reconstruction. This can be a real headache if your nearest competent plastic surgeon is miles away and he is always busy.
Anyway,back to the post...lets hope that this gets sorted for you Wonderhen, and you are given clear answers as to what they are going to do for you, in terms of your reconstruction.
I wish that a good immediate recon was available to all women who wanted them..how great would that be!
25-08-2011 06:53 PM
Hi Hymil - you asked:
"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? "
In my opinion, they should be doing as many immediate recons as they can! Forgetting about (the very important) psychological benefits that many woment find from having an immediate recon, there are other factors to take into account:
Only one major op to go through, with all attendant risks and recovery period. Also means that overall there is less operating time and it costs less.
Often a better cosmetic result - using the skin available immediately neans fewer scars on the breast and less tissue to be found from elsewhere.
Many areas refuse an immediate recon if rads may be neccessary - but this is also disputed by some who maintain that the benefits above outweigh the risks of casulation that might need to be dealt with.
There's been an audit on recon - I've only read the summary and recommendations, but it's interesting.
I'm not advocating that everyone should have immediate recon - it's a personal decision. But the full range of options should be available if you do.
25-08-2011 06:29 PM
Hymil - Yes of course they should be doing immediate recons if the surgeon is capable of doing them. Immediate recon is significantly better for the patient than delayed recon because a) they wake up with cancer gone but a breast in place and b) it only requires one operation.
Trouble is that not all breast surgeons are good at reconstructions.
Whether you are offered immediate recon depends on the staff at the hospital where you are being treated.
Either way - cancer always takes priority.
Nobody is having delayed cancer treatment just because someone else is having a reconstruction.
Naz - that is grim. I hope they get it sorted soon.
25-08-2011 06:09 PM
MSMolly is right.
This is more likely to be as aresult of referral protocols than an absolute refusal. Many areas now do not allow consultant to consultant referrals for non urgent cases. they have to ask you to go back to your GP for a referral.
Can I suggest that your GP is your first point of call. They have (or soon will have) the budget for most of your care needs. My prediction is that your GP will have no problem with making a referral. If so that should then proceed.
If you are not satisfied with your GP's response you can consult the PALs service of your PCT (if you live in England).
I would try these two routes first before rushing to complaints/MPs. They can be reserved for further levers should they be necessary.
As others have said the NICE guidelines are quite clear and there should not be a problem.
Good luck x
25-08-2011 06:09 PM
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.
25-08-2011 05:58 PM
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!