Recommendations for tummy DIEP surgeon in London.

[Linda Corinne]

Yes I had my surgery at the Marsden and will have more both on the NHS. I live in the South West but that has not been a problem as I just stayed in for 1 night after surgery due to the distance altbough probably just as well as got back to the ward at 7.30 although that was as they were short staffed on the ward so had no one to get me from recovery due to sickness. I came out of the op around 6.30 and it was a 1 and a half hour op although I went to the aneasthetic room 15 mins prior approx. 

[Jojo0807]

Thanks Linda 

So did you you have your Surgery at the Marsden and were you self funding or through insurance?  Thanks

Kelly x

[Jojo0807]

Thanks Clare

I will join that FB group

I hope your recovery is going well

Kelly x

[cdc1811]

Hi 

I had a double mastectomy with immediate reconstruction with tummy DIEP on 14th January 2019. In May 2018 I had breast preserving surgeries (therapeutic mammoplasties) as I had an IDC tumour on the right and another IDC tumour on the left.  Unfortunately, I didn’t get clear margins on the right so went on to have a re-excision two weeks later. They found more cancer cells so I then had chemo which I finished at the end of November 2018.  Even though I could possibly have kept the left breast, I decided to have both removed as I have very dense tissue which would have made future screening difficult as my tumours were not visible on mammogram.  I’m so glad I made the choice as after my double mastectomy the pathology showed I had a small area of residual IDC on the right (which was expected) but also an area of DCIS on the left (totally unexpected!) 

i am am so pleased with the DIEP.  It was a very long op - 12 1/2 hours, but looking down the day after surgery, it was reassuring to see my re-constructed boobs!! I couldn’t keep my nipples but that really hasn’t bothered me as much as I thought it might.  I can always get nipple reconstruction at a later date.

Good luck with making your decision.  I’m on a great closed Facebook group called Diep reconstruction UK.  People share their experiences and photographs of their results but some are also asking for advice as they’re trying to decide whether to go for a DIEP or not.  Might be worth joining.  I’ve found it very helpful.

Take Care and all the best for making the right decision for you.

Clare xx

[Linda Corinne]

I also transferred to the Marsden but it was for a second opinion as I was being sent to another hospital to see if they could do an immediate DIEP. I went private initially to ensure I got in as was told they may not accept you on the NHS as so busy. Anyway I was told a mastectomy was not necessary so had mammoplasty there which my local hospital had said was not an option. I had been told an LD flap was not an option too as I was too defined in that area but maybe a DIEP would be an option otherwise I was looking at delayed reconstruction partially with an implant. I did not want it delayed. I just moved my surgery and had radiotherapy locally as well as hormone treatment etc. I am going back next month to discuss an op on the other boob again not possible on the NHS locally. After the first appointment I transferred my care on the NHS which the Masden helped me to do.

[Jojo0807]

This was really helpful thanks Clare.

was yours immediate reconstruction ? If so how did you feel about delaying surgery to get the type you wanted? I have IDC grade 2 in left and large DCIS in right. The delay worries me but I want the right surgery. 

Also so when did you have your surgery? 

Thanks for taking the time to reply 

[cdc1811]

Hi Kelly

My initial problem with my referral was that my GP did not fill in the e-referral form properly.  When I went to the Marsden they thought I just wanted to have a second opinion not to transfer.  Once the GP filled in the e-referral correctly the process was fairly quick- a couple of months at most I think.  The hospital I was transferring to had to respond within two weeks with a yes or no.   I was lucky to have two personal recommendations from people who had had the surgery at the Marsden and that’s why I chose it.  I think I also googled the hospitals I knew of in London and checked whether they offered DIEP too.  I now know of someome who had there surgery at the Royal London and is also very happy with their results.  

If you cannot have the surgery in your local clinic I cannot see why another hospital would say no to treating you. I think as an NHS patient we are still allowed an element of choice.   One thing to bear in mind is the distance to the hospital you transfer to.  I had to transfer every aspect of my care when I opted for surgery at the Royal Marsden so every follow-up appointment relating to my BC takes place there.  It’s a lot further to go than the hospital where I was initially being treated so a much longer journey .  However, I am so very delighted with the results of my DIEP that I think it’s worth it.  

I can understand your anxiety and felt the same, but you will get there.  Please keep me posted and if there’s anything else I can help you with please let me know.  

Very best wishes and hugs hugs from Clare xxx

[Jojo0807]

Hi Clare 

My referral process for DIEP surgery started yesterday as my local clinic can’t do it. My notes should be with my GP on Monday.

very anxious about how long this referral process may take and how long it will delay my surgery. Also worried about the referral process in general as I know it can be slow moving.

can you choose which hospital you are referred to?

Will some refuse to take you because of funding/costs? 

How did you find out which hospitals specialise in this surgery? 

Thanks

Kelly

[cdc1811]

Strawberry that’s so encouraging to hear. Thank you xx

[Strawberry]

Hello Clare, Im glad to hear that you got your referral and have had your first appointment at the Marsden. Sounds like it wasnt that easy so well done you, its not the best time to have to put up a fight but good on you for making sure you were heard. 

I hope the appointment wiht the plastics team goes well.  They have a specialist  breast care nurse who can provide lots of info, including photos of outcomes if you want to see these, plus practical advice re pre and post op. You may have some time wiht her next week after you have seen the plastic surgeon.  

Once youve agreed to a procedure and have got a date there is a thorough pre-assessment process and I found the staff  who do all of that to be really lovely people, as well as competent.  

All the very best for next week, 

Strawberry xx

[cdc1811]

I feel I’ve had to jump through all sorts of hoops to get my referral. Very stressful when I’m feeling vulnerable. I was also under the care of my old hospital for 10 year so it’s strange going to another. I’m glad I pushed for it though I wish I hadn’t needed to. On Monday I saw the same surgeon I saw initially. Thankfully he had all the relevant information this time and was trying to explain what has gone wrong in the previous appointment.(Not having relevant notes, GP filling referral form in incorrectly etc.... I just interrupted him and said ‘that’s in the past, Let’s just move on.’ I’m just hoping the plastics team are better at patient/consultation communication! Will let you know x

[Linda Corinne]

Quaggie I had a Therepeutic Mammoplasty but my local hospital had recommended a DIEP although I would have gone to another hospital to see if they could do it or not. The local one in Taunton said they couldn't t use my back on its own for reconstruction. I got a second opinion from the Marsden.

[Quaggie]

Jacob - surgeon envy is definitely a thing! My initial consultant/surgeon was awful in his patient contacts and I had some trauma trying to get a transfer to a new surgeon. She's much better but still not ideal - for example, she met me in the hospital corridor as I was on way to theatre for my Mx/Diep and saw I was upset. Instead of offering comfort she just said 'you can still change your mind'. Not really v helpful!!

I don't think I've been able to find the level of surgical/medical care that I think we all deserve and that I see other women on hear have managed to find. I'm envious of the Marsden treatment which seems exceptional. I wish I'd known that a referral there was possible!

Linda Corinne - can I ask if you went back to work 3 weeks after mx/DIEP? That seems remarkably quick! I'm about 10 days post-op and barely able to do anything!

As I'm post-op now and I know some ladies here aren't, if anyone has questions about the process and recovery, I'm happy to try and answer.

Wishing everyone strength!

[cdc1811]

Hi Jaq

I was so pleased that my appointment went well.  Thanks for thinking of me.  The consultant was very helpful and I am now booked to see the Plastic surgery team next week.  Unlike my previous hospital it sounds like I may have some other options For reconstruction including using my thighs!

im so sorry you have neutropenia and that you feel let down by your surgeon,  I’m still apprehensive about my op but I was told that they do multiple Tummy DIEPs  a day and even the TUG procedure is not uncommon at the Marsden.  

Wishing yiu well.

Take Care

Clare xx.  

[JacqB]

@cdc1811:
Hi Clare how did the meeting go? I’m in hospital atm with neutropenia and passed the time yesterday watching a bbc documentary about surgeons. Episode 1 covered a double mastectomy with tummy reconstruction, if you are not squeamish it’s really interesting. The surgeon has had BC herself and was so empathetic. I got very emotional about it as I feel very let down by.my surgeon. Who knew surgeon envy was a thing? I hope you got all the answers and reassurance you need from your appointment.
All best wishes
Jacq x

[cdc1811]

Hi Linda Sorry to hear about the sickness, pain when going to the loo and salty taste.  I hope the oncologist appointment goes well and you get some suggestions as to what might help.  I’ve heard good things about the ASDA  bras so hope you find yours suitable.  I’m feeling a little apprehensive about my appointment at the Marsden tomorrow but have prepared an extensive list of questions!  

Hope you get a good nights sleep.

Clare xx

[Linda Corinne]

CDC good ta. I can't wear my old wired bras and have just been in sports bras or non wired non padded bras and scarves as lopsided although afew people say its not noticeable. I have ordered a padded non wired post surgery bra from asda to try.
I went back to work after 3 weeks approx. as was sick twice when I had hoped to go back so took afew more days off.
Have still got pain when go to the loo and a salty taste which may be why I feel sick sometimes. Am seeing the oncologist tomorrow so will mention it then.
Love Linda x

[cdc1811]

Thanks Linda -I’m not sure who I’ll be seeing but I might have to see the consultant I saw last time.  He won’t be doing the surgery himself.  I am armed with a lot more information this time around so hope the whole appointment will go more smoothly and be less confusing!  How are you doing since surgery?  X

[Linda Corinne]

CDC Good luck on Monday. Let me know how you get on. I guess you are seeing the same surgeon that you should have seen before?! x

[cdc1811]

Hi Farah

Good to hear from you.  I felt guilty asking for a transfer of care and got the impression the Marsden were reluctant to take on any more referrals but I'm hoping that now my transfer has been acccepted things will go smoothly.  I have had a few issues with my original hospital and to be honest i've lost my trust in them.  I have only heard positive things with regards to the surgeons and care offered at the Marsden.  

I have an appointment on Monday!  I will be really interested to hear what they say with regards to the way forward.  Also if they agree that my only option for reconstruction after my mastectomy is a tummy DIEP.

I'll let you know how I get on.

Best Wishes

Clare

[Farah52]

Hi Clare

Wonderful news you're now with the Marsden (I also had a tough time getting the transfer – both the original hospital and my GP were reluctant to pursue a referral and I had to resort to throwing my toys out of the pram, and writing several angry letters to the head of my GP practice – the whole process took six weeks!).

Good luck with your consultations.

If you need to bounce your experience off someone who's been through something similar, please don't hesitate. And I can try to help with any questions you might have about the actual surgery and recovery time in the ward.

Wishing you the best outcomes…

Farah

[cdc1811]

That’s so fantastic to hear Farah!

It’s not been easy but I’ve finally had my transfer of care to the Marsden in South Ken accepted.

im seeing the consultant the week after next.  . I was also  told at my previous hospital that I’ll need to lose the nipple on the right but I’ll be interested to see what they say at my appointment.

its so encouraging to hear your experience.

thanks for sharing and all the best.

Clare

[Farah52]

Hi Clare

I had a left breast mastectomy with immediate DIEP flap reconstruction at the Marsden, South Kensington. I went there for a second opinion after being diagnosed, following a routine screening mammogram, at another London hospital. My experience was tremendous – beyond my wildest dreams. I was told by the first hospital that my nipple couldn't be saved. But the Marsden team not only saved my nipple, they've created a new boob almost identical in size and shape to the previous, and whilst Grade 2 invasive cells were found in the DCIS, my margins were clear and I'm now on an adjuvant therapy treatment plan. My two surgeons are super heroes in my eyes. I'm happy to share details.

The run-up to surgery, through to aftercare (by the surgeons as well as the nurses) is gold standard. And, I wish all NHS services and hospitals were as good, considerate, patient, unpatronizing etc as the teams working on me at the Marsden. 

Good luck with your decision making, and the treatment route you opt for. I'm happy to help if you need.

Wishing you well as soon as possible.

Farah

[cdc1811]

Thanks SallybIll check out their website too. Xx

[cdc1811]

I think I saw that link too JaqB and you’re right there were a number from the Marsden iI believe. Maybe others from elsewhere in London. Will try and find the article again and make notes. Thanks for the reminder! Clare

[JacqB]

Hi Clare
I recently googled best breast surgeons and an interesting article popped up from the Daily Mail listing the top ten surgeons in the uk. I’m sure several of them were in London. The results were from a survey of breast surgery patients. I don’t know how to add the link here but it was an interesting read.
Jacq

[SallyG63]

He was of course a breast surgeon, not a beat one. 🙂

[SallyG63]

I didn't have it done but I know they offer that at Guys cos the bloke who did my surgery was an oncoplastic beat surgeon. They have nothing in my local area so anyone who is having reconstruction locally gets referred there.

[cdc1811]

Hi I know we are not able to post specific details of surgeons on the forum but if anyone can PM me with some ideas I’d appreciate it. After talking with my original surgeon today and going through my notes I now know I need a bilateral mastectomy. I have a significant family history (in date order I’m the 8th out of a total of 9 family members - all direct relatives of my Mum’s Mum who died of secondary BC). I was diagnosed with bilateral IDC Grade 2, Stage 3 (Left 2cm with additional 0.5 DCIS intermediate and high grade and right 5.2 cm no DCIS) in March/April. My previous breast preserving surgery (TM) on the right and follow up re-excision did not clear all the cancer cells. Whilst the solid tumour itself was removed I did not get clear margins and the tissue directly under my nipple was speckled with cancer cells which is worrying. Hopeful chemo has done its job but a mastectomy is my safest option to prevent spread/recurrence. Also I am completely mammographically occult (due to extremely dense breast tissue). Even when comparing my U//S and MRI images taken a couple of weeks later, when they reviewed my mammogram taken in MarchI first felt an area of thickening, it is impossible to see my tumours. My surgeon does not know how they would follow me up screening wise if I was to keep either breast. Even the U/S did not originally pick up a tumour on the left and the MRI underestimated the size and did not show the speckling on the right.

I know that the tummy DIEP is the way I want to go. They don’t offer this surgery at the hospital where I had my TM. I need a plastics/vascular team to work with my surgeon but I’m not happy with the hospital where they are proposing I have this done.

Does anyone have experience of the Marsden or UCLH or indeed any other hospitals offering this procedure in London) I had a strange consultation at the Marsden but this was followed by a very good, detailed letter to say it would be possible to have all my surgery and care transferred there.

I’m in a total quandary. Also nervous about the surgery itself. Any ideas/experiences to share would be extremely valuable. I know this will be a once in a lifetime op for me and if it goes wrong I’ll have no choice but to remain flat. I know some people are happy with this and ultimately I prob would be. However, I’d prefer to try for an immediate Tummy DIEP reconstruction ASAP as I’m fed up with surgeries and if I choose well and this works, apart from a nipple reconstruction at a later date if I go down that route, this will hopefully be the last BC surgery I ever need.

Sorry it’s a bit of a long winded post but I’ve been up all night on a post steroid high and can’t stop thinking about what to do.

Thank you in advance

Clare x