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