I’m posting this question in the forum, because I think it may be of interest to others with secondary BC.
The question is, are there any NICE guidelines concerning reconstruction for stage 4 BC patients?
Have looked on the NICE website, and can’t find anything,so wonder if it’s completely at the discretion of individual surgeons. It appears I’m going to be referred, although I was originally told they do not do reconstruction for stage 4 patients, however it will be up to do it or not. In some ways it would be better to be told yeah or nay from the outset, rather than raise and then possibly dash someones hope. Patients should have some rights here I think.
Hi lemongrove,
I am posting this response on behalf of the BCC clinical team:-
Thank you for your question lemongrove. There are no NICE guidelines concerning reconstruction for stage 4 breast cancer patients. Breast reconstruction is a complex procedure for anyone to undertake and sometimes reconstruction is not advisable because other medical conditions may increase the risk of problems and complications following surgery. However this does not mean that this would automatically exclude all those with a stage 4 diagnosis, but rather that each case would be assessed and considered individually with consultation between the patient and their specialist team.
Thank you Sam. One more question.
If there is no NICE guidance, and it is up to Surgeons whether to provide reconstruction for stage 4, why are some areas operating a blanket ban on reconstruction for stage 4?
Of course, I do understand that some patients may not be candidates for reconstruction on clinical grounds, but that does not explain a blanket ban does it? When I was first diagnosed with secondary BC, I was told by my then Oncologist that I would not get reonstruction, as they do not do this for stage 4 patients (and I know a few other stage 4 people in my area who have been told the same thing). They have only agreed to refer me for reconstruction now because I am currently NED, and I have an ongoing seroma that they think may be helped by reconstruction with my own tissue (also they know I’m quite assertive).
If there are no NICE guidelines, and no clear clinical reason for refusing reconstruction to patients with secondary BC, the policy of refusing this procedure seems rather discriminatory to me. Do you agree?
Lemongrove
I think that such a ban is shocking, heartless and appalling and does seem to be highly discriminatory. I can see it might be inappropriate for some women but certainly not for all. I would like to see that legally challenged! I hope that BCC will take this up. Elinda x
Posted on behalf of the clinical team:-
It is really difficult to comment on why in your area there is a ban on breast reconstruction for stage 4 disease as you have stated, and as a charity we cannot advise on individual cases. However this is a question you may want to put to your treatment team. As our previous response explained, reconstruction should not be automatically excluded in those with a stage 4 diagnosis, but rather that each individual case should be assessed and considered depending on the patient’s current state of health and the treatment that they are receiving. This is a consultation that should take place between the patient and their specialist team.
I am a different position from you, but have had a bit of a glitch with further surgery. Because I had differing bilateral WLEs I am left with Droopy and Perky and would like evening up. Due to bilateral radio, I am not a good candidate for reduction surgery - and it’s only 2 years after diagnosis, and a year after surgery/radio, that I’ve actually got a clinical reason for this and that I understand. Up to now it’s been a case of ‘difficult not impossible’ when the situation was really NO WAY. Like many other people I would find it much easier to cope with the facts right from the start, instead of the despair when something I really believed was possible was suddenly withdrawn. I do understand that bilateral cancer is unusual - NOW - but I didn’t when first diagnosed but the clinic did, and in my view should have made it very clear to me their position on corrective surgery.
At least my onc understands my distress, and can offer lipofilling on the small side now that the NICE guidelines have changed.
So Ladies, I think we need to be much more pushy about REASONS for clinical decisions - we are capable of understanding this stuff!!! so keep asking, get them to draw diagrams, ALWAYS ALWAYS take notes at appts, even write back to your clinic with your understanding/lack of it, ask for referrals elsewhere etc etc. If you are told something is policy, ask for documentation of that policy - it probably won’t help as it will be very circumspect language but it will give your clinic pause for thought about their policy and how they convey it to patients. And if the policy is fixed by the Trust Board rather than the clinicians, then that is time to get really bolshy.
The worst bit is that we have to cope with these situations at a time when we are physically, emotionally and psychologically at our weakest and that makes it very hard.
My method is always to say ‘I was told blah’ rather than ‘you told me blah’ cos it seems to take the heat/blame/criticism out of the situation.
grumpy ( but cheery cos it’s a lovely day for a walk with the doggies)
Thank you for the reply once again Sam.
As you say, decisions about reconstruction for those with secondary BC should be made on a case by case approach, and according to clinical need and suitability - but sadly that does not appear to be the case where I live.
Of course BCC cannot advise on individual cases, nobody would expect that. But if some areas have a policy that leads to discrimination, then perhaps this is an area BCC could investigate? Would it be worthwhile for BCC to ask members who have been diagnosed with secondary BC to comment on whether they have been refused reconstruction?
Posted on behalf of Liz (Director of Policy and Research)
Hello everyone
Thanks so much for bringing this to our attention, as the clinical team have said we can’t comment on individual situations, however it is worrying to hear that this may be happening. As you may know we have been doing lots of work campaigning to improve standards of care for everyone with secondary breast cancer, but the suggestion of a blanket ban on reconstruction wasn’t something we had heard about previously. If you are interested in finding out more about the Spotlight on Secondary breast cancer campaign, you can see what we have been doing here breastcancercare.org.uk/campaigning-volunteering/campaigning/current-campaigns/spotlight-secondary-breast-cancer We will be updating this page soon with what we are planning for the campaign this year.
You may also be interested to know we are just in the early stages of developing a new campaign to run alongside our Spotlight campaign. This will look at body image/confidence issues faced by anyone with a diagnosis of breast cancer (primary and secondary). At this point we haven’t done all the research and consultation to hone down the campaign focus (as the topic is so big), but clearly access to reconstruction will be one of the areas we will be considering and looking at among many other things. You can find more information about what we are planning here breastcancercare.org.uk/campaigning-volunteering/campaigning/current-campaigns/body-image-breast-cancer
Thanks so much for bringing this to our attention.
Liz
Director of Policy and Research
Thank you for the reply June/Liz.
BCC have undoubtedly worked hard to improve standards of care for those with secondary BC, and should be congratulated for that. Personally, I believe the collection of data will prove particularly important, as it has the potential to answer so many questions that are currently unanswered.
I wouldn’t want to say the entire area where I live operate a blanket ban on reconstruction for those with secondary BC, as I only have experience of one clinic/hospital in my area. Also, as this clinic have since agreed to refer me for reconstruction, the term blanket may not be correct - it could just be a problem of communication rather than policy. Maybe instead of saying we do not offer reconstruction to patients with secondary BC, they should have added, unless scans show that the patient has no evidence of disease, or has been stable for x amount of time. But as the same clinic do not offer routine scans to stage 4 patients, I guess they might then feel obliged to provide routine scans.
I do really hope the forthcoming Spotlight campaign, will look into access to reconstruction, because I have met a number of women with secondary BC, who have been refused reconstruction, and suspect there is a problem. I think at the very least, patients with secondary BC need to be made aware that decisions of this type have to be on clinical grounds rather than policy.
Hi Lemongrove,
This is a subject I am extremely passionate about as I have been treated very poorly with regard to being reconstructed. I am sorry its a long story but if I explain it all hopefully it will help. I was diagnosed on the 18th April 2007 at the age of 26 and 10 weeks before my wedding day. I had 2 seperate tumours in the same breast so a mastectomy was the best surgical option (after this was done I had lots of pre cancerous cells throughout so it would have been inevitable to remove all of the cancer)Reconstruction was discussed but very thinly and I wasnt really given any options. The surgeon said due to my age I needed to start chemo asap and that it would take too long to arrange a plastic surgeon to be present at the same time as having the mastectomy. Also it was highly likely I wouldnt have been recovered by the wedding which I didnt want to cancel so agreed with the mastectomy but made it very clear I wanted reconstruction as soon as possible. The breast care nurse told me I would definately get it and be a priority because of my age and how and when I should contact her to get the ball rolling for me. I had the mx on 30th April 2007 and started chemo just before the wedding, I then went onto Herceptin and also had radiotherapy. I had an appointment with a plastic surgeon in October 2007 who discussed all my options for surgery and he told me to go back to see him in April 2008 when I would have finished chemo and recovered from rads and it would be a 3 month wait for surgery from then. I went back to him in april and he told me I couldnt have reconstruction because I was still on Herceptin (he knew this at the first appointment) and that I had to wait until January 2009. I got very upset as I felt the goal posts were being moved and the reconstruction was very important to me and I had already waited. I was concerned that the cancer may return or something else may happen to stop me getting the surgery but he couldnt understand why I was upset. He was very patronising and told me I was in no fit state to look at pictures or hear his explanation of the surgery etc. Needless to say I never went back to him. I finished Herceptin in October 2008 and arranged a referral to a different hospital. I had my first appointment with her just before Christmas and she was lovely. She told me to have a really good think about the surgery (which was to be a TRAM flap reconstruction) and go back in the new year to be put on her waiting list. I did this and finally went on in March 2009. Not long after that I discovered some lumps just above my collarbone on the right side(mastectomy side) and then one on the left. This one grew very quickly and I had them investigated at my hospital. I suppose I already knew what they were. I had a fine needle aspiration of the lumps but this was inconclusive so my surgeon wanted to remove one to look at it properly. During all this I had a phonecall offering me a date for reconstruction on 2 July but my surgeon was having none of it. He told me I couldnt have it and that he would write to the plastic surgeon. My breast care nurse tried to fight my corner but no one was really listening to me. I have since learned of women in similar situations whose surgeons have been happy to operate still as it would make them feel better and improve their quality of life. So I was diagnosed with secondary BC and refused the long awaited reconstruction all on the same day. I was devastated and really struggled to cope. The plastic surgeon arranged for me to see her and it was a very emotional meeting to say the least and she did say she would reconstruct me in the future but again this changed. I saw her 2 more times after that day to ask and just gave up in the end as I couldnt face the disappointment any longer. BUT fast forward to 2011 I had been on Herceptin for 2 years and was stable and very well and after a very wonderful conversation with my sister I sought some advice from an expert in the breast cancer field and he told me that the opportunity for reconstruction hadnt passed. I went to my GP who was great and understood how I felt about the recon and we decided to give it one more try. She referred me to a new surgeon at my local hospital, my sister came with me and I had armed myself with lots of info and was determined to get this done. In the back of my mind I really thought she would say no but guess what she didnt!! I had no convincing to do and she agreed there and then to do it. I had an expander implant put in in September 2011 as she felt the TRAM would be too big a surgery and that it may be hard to get an anaesthetist to agree to it. This has gone very well and I am now waiting until the 28th June to have the expander replaced and a reduction the the remaining breast. I think it does depend on who you see but thats not how it should be. I found it very upsetting learning from other women in similar situations getting surgery and could not understand why no one wanted to do it for me. I was promised it and felt like no one cared about my emotional well being. Having a breast removed is soul destroying and if a patient wants reconstruction and is well enough to have surgery then they should get it.
Chrissi
Hi Chrissybabe, I think your case demonstrates the lottery that exists in cancer care (especially for stage 4 patients). Cancer patients have enough on their plates without having to fight just to get reasonable treatment.
While it is understandable that doctors want to get active treatment out of the way, or ensure that those with secondary cancer are stable before embarking on reconstruction, cancer patients shouldn’t have to go “armed with info” to fight their corner, or be dependent on finding a sympathetic doctor. If someone with secondary cancer has completed their treatment, and their cancer is stable they should be treated like any other patient.
I’m really sorry that you’ve had this reconstruction battle to contend with on top of everything else, and hope that your reconstruction now goes ahead, and brings this sorry episode to a close.