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 ™ 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.
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.
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
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.
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:
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
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
