Choose your Surgeon Carefully

Do any of you feel you have a fab surgeon? I did at the time. Mine had a good bedside manner, like most, when your head is all over the place you trust them…He was one that could do reconstrctive surgery at the time and he plugged it, especially as he already realised I had a needle phobia and had never even been in hospital. IT’S NOT ALWAYS BEST.

Mine came to me on the morning of my total mastectomy and chalked paints on me all over what was my breast - then I was given a pre-med. Me and my other half were sat on the bed when him and his crew arrived to say they felt they may be able to save the breast. Did I want to try? Guess what I said?

Just because he could do reconstruction surgery (9hours) doesn’t mean he can. 2 weeks later we go for what we think is a check up and time to go onto the next bit. Oh no, he hasn’t got clear margins, so I need another op after all.(6 hours)

What a mess I’m left with. Even 2 years later the senior breast care nurse at the hospital suggested plastic surgeons might help …I listened to her and had 2nd opinion from plastic surgeon at Charing Cross, but don’t want another 9 hour op and 3 months recovery after it. ( I had already lost my job and was lucky enough to get this one)

The one thing I will say about this all is the following

Just because a Surgeon says he can do it doesn’t mean he can.

Bitter? You bet I am.

Caz

xxx

btw… this was 2005 and I’m bitter now.

Hi Caz

I read your story this morning and really felt for you. No wonder that you feel bitter. I would too in your place. You must feel like you’ve been through a mincer.

You say ‘choose your surgeon carefully’, but it’s difficult isn’t it? Sometimes all we can go on is gut feeling and positive vibes . And we don’t really have the opportunity, or time, to canvass opinions or talk to previous patients, either.

Your story makes me so thankful that I never had an immediate reconstruction (to be honest they didn’t exist back in 1993 when I had my mx) and that my surgeon, whatever his faults (and he had a few) at least didn’t flatter himself that he could do plastic surgery.

And glad, too that he made me wait two years to get ‘properly better’ before he would even refer me on.

I know there are ladies who have posted on here saying that it was very important to them to have an immediate recon and they don’t think they would have been able to cope without a breast before recon, but believe me, you can. Especially if that’s the only option you have. I hated having a prosthesis for 3 years, but it did come to an end eventually.

I wonder if it’s financial pressure that makes them offer recon at the same time (BOGOF principle) as cancer surgery or is this being driven by women (I’m not suggesting that you are one of these) who want to be made/left as whole as possible? Discuss.

Caz - what are you going to do? Soldier on as you are indefinitely or keep your options open?

X

S

Hi. I’m about to have mastectomy and immedate reconstruction because of widespread dcis. I was naturally horrified at the diagnosis and took months coming to terms with it and accepting it. I have had a few second opinions and have searched hard for surgeons. It’s difficult to find any information on surgeons for you to make a decision. My decision was made by trying to speak to as many women as possible who had reconstructions in my area and their experiences good or bad on different kinds of reconstruction. I used the peer support service and found it invaluable for this kind of information. I don’t know what the outcome of my decision will be or if I will be happy with it… but I do know I have tried my best to find out as much info as poss to try to avoid a disaster. I just hope it helps now I have decided on my surgeon and I feel at ease with my decision. I’ll let you know…

I think a reconstruction should be done by a plastic surgeon not a breast surgeon. They should work together.
Research all the options before a decision is made as surgeons may push the method they are happier doing. Also, ask about their success rate. A good surgeon is happy to answer questions. At my first referral, my surgeon said her success rate with Diep was 95%. When I finally had it, it had risen to 100% in over a year!
I was also shown photos of women whom she’d operated on and given the phone number of 3 women who had been her patients.
Kelley

Hi Caz
I’m so sorry to hear about your experience, thats a dreadful experience to have.
In '97 my breast surgeon advised me to wait before recon and referred me to another hospital and ‘the best plastic surgeon in the region’ and told me to be sure to see pics of results. They took photos of me before and after for future patients and asked me if I would be willing to share my experience/show other women the result. I waited two years, which depressed me terribly, but have had my recon breast for 10 years and thank god for it every day. That’s not special treatment, its what everyone should get.
I appreciate how you would feel bitter but wonder if it might be worth a referral to a plastic surgeon to at least discuss the options? and a complaint to the hosp where you had surgery - its just not acceptable to be left feeling as you are. BC alone is enough without hosp inflicted distress.
sending you my best wishes
monica

Caz, what youve been through is horrifying.I couldnt agree more with the other posts & in particular “Undecided”. Speaking to other women & learning from their experience is vital. I had my Mx last week, WLE a month before but too much cancerous tissue.At the point of being told I needed a Mx I was appalled but it did give me time to think.My Breast Surgeon advised against recon as I may need radiation after chemo.But best of all I was introduced to another local lady who had a double Mx & talked me through pros & cons.Shes had one boob reconstructed & is awaiting the second & strongly felt a Plastic Surgeon was the way to go.Her new boob is great & I was reassured that my very heavy boobs would be properly managed, probably I will need reduction on the healthy side.Yes all this will take more time but the thought that I will end up with the boobs I always wanted is very uplifting(!!) in these rather dark days.
Incidentally the Plastic Surgeon at The hope Hospital Manchester comes highly recommended.Do contact me for more details.
Best of luck to all
Grace x

Caz, you’ve had a horrific experience. The trouble is that we’re faced by making a decision over surgery when we’re probably not in a fit state to do so.

I’ve always had a soft spot for teaching hospitals, despite the attendant students because surgeons have research aspects to their jobs and are usually at the forefront of new surgical methods.

Through an odd chain of events, I could have had my surgery at two different teaching hospitals. In the end, I rejected the larger, much smarter breast unit in favour of a smaller one.

Among the things that swayed my decision was - yes - the fact that the smaller unit could offer immediate reconstruction. I hadn’t realised that my mastectomy (skin-sparing, nipple-sparing, with implant, but not using any back or stomach muscle) was quite so cutting edge until my (very eminent) oncologist (who is at a third hospital - my notes do a lot of travelling!) showed it off to a student by saying that ‘one day all mastectomies will look like this’). I have one thin scar line running to my armpit (Dermatix took the redness out) and that’s the only visible sign of my operation. It was a three or four hour operation and I recovered very fast. I was very lucky. Having an immediate reconstruction has made a big difference psychologically - more than I thought it would at the time.

I did ask advice over both my possible surgeons and heard that heads of departments often aren’t the best surgeons - younger ones can have more up-to-date skills, which makes sense. I also liked the fact that the smaller unit was much less hierarchical. I took it as a good sign when the BCN felt that she could correct/could disagree with the surgeon when she came to consultations. I was the 14th operation of this type that the surgeon had done. I remember thinking that was a good number - enough to iron out any problems but wouldn’t have become complacent.

I do find it interesting that - anecdotally at least - none of us asked our GPs for advice over surgeons. Surely they should know if there are particularly good ones locally. Looking back I think I asked everyone but my GP.

If anyone does want to know more information about my operation please do PM me.

I had a WLE in 2005 and node clearance followed by chemo & rads. A few weeks ago I had a double macestomy with reconstruction (LD, nipple & skin sparing) due to discovering that I had BRCA1 gene.

Back in 2005 when I had my BC diagnosis I just went with whatever the general surgeon at the local unit suggested and luckily I was relatively happy with the result.

This time around (as I had more time to think) I researched methods of reconstruction, read research papers online, looked up info on surgeons before deciding on a surgeon that was both a breast and plastic surgeon based in a hospital with a specialist plastic surgery & burns unit. Although it is still early days I am happy with the result (which gets better every day).

I would certainly recommend him to others.

Overall I have been extremely lucky with my surgery which particularly the first time had the potential to go very wrong.

Adele

I think it would be really handy for some kind of patient ‘rating’ system for breast reconstruction surgeons/plastic surgeons - as there is for many things now on web. I’m not sure how ethical it is - or how practical, as we would be naming people and it could be agrgued that it could be open to unfair criticism from some. I found that if you want to find out if someone is ‘good’ or not - it is almost impossible.
But if enough people contributed to it - maybe it could be a positive thing by encouraging surgeon’s to develop/update their repotoire so to speak.

Oh boy, what a good thread.

I was “treated” by a breast surgeon who insisted he could do recon and failed, miserably. I am of the thought that ONLY plastic surgeons really give a damn about aesthetic outcome and really have the skills to do a good job.

You will NOT find a breast surgeon doing anything but LD flop because it is relatively easy if talking about skills and time spent. It is also just as easily ***ked up and there are plenty of patients who are unhappy with LD results.

I think we SHOULD share a few surgeons’ names and if not here then on BCPals where they “name and shame”.

Reg.

Hello Ladies,

After reading this thread i felt like i needed to comment.
I had a mas: in April 07 with an expander fitted, this was then swapped a year later with another one as it had moved up and under my arm. I went back to see my breast surgeon and plastic surgeon yesterday as guess what this one has travelled in the same direction!

I felt i was being rushed as they were running late and it had gone 5pm. I was told what they were going to do replace the implant and alter my good side to make it smaller again as that what suited them, at this rate i will be flat chested. I didn’t have time to discuss any other options as i was then ushered out of the room for them to do the paper work.

Candys

Hi all,

Could I just remind everyone please that ‘naming and shaming’ of anyone including health care professionals is not allowed on these forums. This is to protect you, the forum user, and ourselves Breast Cancer Care, from being sued for defamation or libel.

It is possible to share stories and to give each other advice and support without naming health care professionals in this public forum, and we would encourage you to continue to do so.

Here’s the link to Terms and Conditions which you agreed to when signing up to these forums:

breastcancercare.org.uk/terms-conditions/terms-and-conditions

Trust you understand our reasons for this.

Kind regards,
Jo, Facilitator

I believe in researching thoroughly, particularly this is a big thing in our lives. I am very fortunate that I was able to transfer to a different hospital for the operation & treatment. I was to have mastectomy and an immediate re-construction, due to the delay I had time to do a lot of research on the reconstructions process and was better informed. When I met my Plastic Surgeon for the first time I was able to ask him many questions. Unfortunately I could not remember his name so had to phone the hospital and got his name. I googled and researched the PS’s background and the rest is history. I am extremely lucky to have had him to do the complex reconstruction. He said that my case was the most challenging in his 15 years experience as the surgery took 16 hours. The result is very satisfactory, my healing was just like a text book.

There are great things, but there are also some negative things at the hospital. I passed the info to my PS for constructive feed back.

What an interesting thread this is. I had an immediate recon in Jan, suing a silicon implant and the skin from my removed breast. I am not very happy with it as it’s higher than my other breast and is so hard it’s downright uncomfortable. Turning my head to the side or putting on a coat etc is a real trial for me. When I went to see him a week or so ago he was totally unconcerned saying he’ll see me in 3 months after it’s settled down. He offered to pull up my other boob but if he does that I’ll have no boob on the other side and then the recon will look much bigger.
I have no idea if my surgeon is a plastic surgeon as well as a breast surgeon. The work I was shown by my bcn showed well endowed ladies and I could kick myself that I didn’t ask for smaller boob pictures to look at instead. I wasn’t able to think clearly at the time. They don’t carry out breast surgery in my local hosp so I had to go further afield for my surgery and knew no one who had had my surgeon, although the bcn did say he was the best. She would I suppose. And as for choosing your surgeon, he was the only health professional in the clinic so how would I have been able to do that? I’m ashamed to say now that I did as I was told by the only doctor I saw and that seems a shocking thing to write when it was my body being cut up. I have a difficult relationship with my surgeon as he’s cold and clinical with not an ounce of compassion or empathy. In my last consultation I had 4 mins of his attention and I found it difficult to articulate my feelings about the recon because I was sitting half naked and surrounded by 2 other strangers in the room. The clinic was running late and that was all the time I had allotted to me. Candys, I sympathise with your experience.
Annys x

When I was diagnosed in May 08 I was told I would need full mastectomy, chemo and radiotherapy. Immediate reconstruction looked unlikely as I had no available fat on tummy or back. I joked about having plenty on my bum. Appointments with a plastic surgeon followed who offered a TUG flap which uses the tissue and muscle from the inner thigh. I carried out some internet research, it was certainly a new procedure that very few hospitals offered, I was ‘lucky’ my surgeon had experience. I asked the question ‘will you give me problems with my leg by using it to creat a breast?’ ‘Absolutely not’ came the reply ‘we wouldn’t do it if that were likely’ 9 hours of surgery - breast surgeon removes breast tissue leaving skin, then handed over to plastic surgeon for reconstruction. The resulting breast is great, its a good shape, has a nipple (tho it has pubic hair which are being lazered away!)On the whole very happy. But the leg is a different story. I’ve been left with pain and hypersensitivity, I’ve seen doctors and plastic surgeons and neurologists. I’ve had more surgery to attempt to repair damaged nerves. I’m on neuropathic pain medication with unpleasant side effects.
The trouble is your completely in their hands, you’re in shock, you’re hurting, you’re confused, but you have to trust them. Try to think carefully about your choice of surgery, ask lots of questions and ask them all again until you’re sure you have the answers you need to make a fully informed decision.
Yes I wanted to wake from surgery with a breast, but I might have thought twice if I’d known all the risks!
Good luck to you all x