Question for stage 4 peeps, answer appreciated

When I was first diagnosed with secondary BC, I was told that they (a Breast Clinic in Sussex), do not offer reconstruction to stage 4 patients, as a matter of policy. My understanding is (and BCC’s understanding is), that while there is no NICE guidelines about reconstruction for stage 4 patients, the decision about whether to offer reconstruction should be done on a case by case basis, according to clinical criteria. It seems to me therefore that a blanket ban based on policy could be discriminatory, and wonder if this is an isolated incident, or something a bit wider. Consequently, I would like to ask stage 4 peeps if they have been told that their area do not offer reconstruction to those with secondary BC ?

Hi Lemongrove (still loving the pic :0)

I had my mx last september and they explained that the reason they would not offer me an immediate recon was due to my lung mets that they were concerned it would be too much for my body to handle all in one go. After my mx my surgeon told me that he had left enough skin to perform a recon in the future if I stabilized. I am now classed as stable as of my last ct scan in Oct having said that I had rads in January and have since found out that they would not perform anymore surgery on my mx/rads site for a clear year to allow my skin to recover from the rads. I am currently being treated down in Devon. I would say that the assumption that they do not offer stage 4 patients recon as a matter of policy is incorrect and is probably more to do with the individuals health ie: age, progression, stability, general health etc. Personally at the moment I don’t want anymore hospitals and surgery so am happy with my new prothesis just picked up yesterday.

Hope this helps
Love and light to you
sarahlousie xx

HI LG

I haven’t even been offered a MX never mind recon but hey, guess it is the least of my worries…

I don’t believe there is a blanket ban and if you are stable then I don’t see why it should be refused. Perhaps some surgeons are more accommodating than others.

More women seem to be offered this (and MX) in the usa.

Hello Lemongrove,

I don’t have any personal experience of this, but I have come across a lady on other threads (dm1968) who definitely had cosmetic work done at stage 4. Perhaps you could try sending her a PM for more details?

Good luck,
Dugsy

Hi Lesley like u know I was treated with prim in Sussex when they dx me with sec they sd straight away I cldnt have a rekon wldnt even consider it when I spoke to the Marsden they sd they refer stage 4 plp but only if stable for a while and with no further spread I think it is down to the individual and the onc and surgeon

Hi,

I was diagnosed with bone mets at same time as primary in July 07. Had chemo, then mx and anc, rads etc. Didn’t have recon - wasn’t something I wanted and don’t know if they would have done it anyway. Since then my mets have been stable apart from the odd blip. I needed a one-off rads blast Jan '11 for spread in T9 but that did the trick. Increasingly I felt that I was unbalanced, even with a prosthesis, and decided last year to ask for a mx on my ‘good’ side to see if it would help my posture etc. Got round to seeing surgeon in Dec and after the hospital cancelled my op twice, I had it done 2 weeks ago. I feel so much better and haven’t needed as much as a paracetamol!!! The scar is healing well although a seroma has developed and I am having it drained again on Monday.

The surgeon is just brilliant and he did my original mx and I wanted him to do it. He is of the belief that a woman’s psychological well-being is as important as her physical health and takes so much pride in his work. All the medical staff and nurses who have seen my scars just know it is his handiwork, he has such an excellent reputation.

Sorry I can’t help you with your question about recon for stage 4 people, but certainly a mx is possible here if you have mets and are stable. I know I am very lucky to be in this surgeon’s care. If I remember, I’ll ask the nurse on Monday if they do recons and report back.

Liz

Hi I was Dx with primary and secs at initial Dx (Feb 11 ), was told by my BCN no recon at all to stage 4, but then she also told me no MX either, but surgeon said yes absolutely to Mx and a maybe to recon if I am stable and in good health after 2 years,however at the moment I do not feel I want recon but the choice to have one or not is mine at least.

Hi Laura, actually you were one of the people I had in mind when I said that others had been refused, so thanks for posting.
I do know of other stage 4 peeps in Sussex who have been refused reconstruction on policy grounds, and hope they will post. Maybe it’s just Sussex that is behaving this way.