Second Opinion Royal Marsden Christies- Mastectomy

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Hello everyone!

My first post here and I am reaching out for some advice.

I was diagnosed with Hert2+ BC and received adjuvant chemo for many months pre surgery.

Though the chemo worked well I am told I need a mastectomy yesterday which was a huge shock.

I could not stop crying in the appointment.

I am very distressed and freaking out as I was expecting a lumpectomy,but I would like a second opinion.

Does anyone have any experience of surgery or recommend any surgeons for a mastectomy and/or reconstruction?

At the following:-

The  Royal Marsden Hospital-Dr Gui? Paul Harris(now left started own practice)

Christies Hospital

Whiston Hospital - been referred to have a chat about reconstruction Diep Flap? 

The Royal Liverpool University Hospital - currently under

Also I am interested about peoples choice in reconstruction implants vs own fat cells DIEP etc and how they cam to the decision.

Thank you and best wishes to everyone Xx

  • Hi Chakak

    Welcome to the forum and I am sorry to hear that you have been diagnosed with breast cancer and need a mastectomy.  While I haven’t got the experience you are looking for I noticed that you haven’t had any replies so I thought I’d reply to you to welcome you to the community. Hopefully someone will be along shortly with an answer for you.

    Wishing you the best of luck with your operation. 

    Best wishes

    Daisy53

    Community Champion Badge

  • Hi there .I can't answer all your questions but will help with the ones I can .I found I had breast cancer Aug2023 ,and was told chemo,mastectomy then radiotherapy .I went through 8 sessions of chemo and fortunately although I had side effects they were not as bad as many other people go through . The chemo reduced the tumour to about a quarter , so I felt a bit deflated when I was told I still needed same treatment (ie full mastectomy & nodes removed) as had first been told . However ,the chemo had been needed to stop the spread as it was a fast growing cancer and they were treating it as inflammatory breadt cancer .

    I had mastectomy and DIEP construction 22 April .I didn't really have a choice for implant as they needed to remove a lot of skin .For once I was glad I had a 'well padded ' tum so they had loads of tissue & skin they could remove .I had been 38c/d before and am the same size now .Its an amazing op ,such precision in reconstructing a new breast from tummy tissue and skin and having to attach blood vessels etc .It means a lot to me to look down and I see 2 boobs roughly the same size and can wear most of my old clothes .I tried on  swimsuit and nobody would notice any difference. Obviously it looks different to the other one but have future appointments with reconstruction team to align the 2 ,maybe lift the other one slightly and posdibly have nipple tattooed .

    They say every cloud has a silver lining ,and mine is that I am loving my flat tum and nice neat little belly button! 

  • Dear Caffi,

    Thank you for taking your time to reply and for sharing your story.

    It is reassuring to hear your experience and the precision in reconstruction,I also didn't know about future reconstruction after a DIEP flap which is great.

    I have been see a surgeon about a DIEP flap in Whiston Hospital but have not decided what course to take or what is recommended as I am having radiotherapy too and was only told this news a couple of days ago about a mastectomy so I am still in shock.

    Previously the only discussion was a lumpectomy and although I had responded amazingly to chemo there were calcifications I think.

    I am going to see the BC nurse today to look at mastectomy pictures today and she probably wants to check on me as I was crying inconsolably in appointment.

    It is great that the surgery was successful and has meant a lot to you and that you can wear most of your clothes and yes every cloud has a silver lining too.

    I have a padded tummy which I am thankful for right now,..I just didn't know it might come in handy one day!

    Best wishes to you in your future appointments Xx

  • Thank you for your welcome x

  • Glad I could be of some help .Its all very daunting especially when plans for treatment change .I was so disappointed after chemo ended ,to be told that despite the response being so good and the tumour shrinking ,the surgery plan was the same as day 1 when I met the consultant. I can only imagine your shock being told you were to have a mastectomy rather than lumpectomy .I see the reconstruction team again on 5 July ,when they will check the reconstruction and presumably start looking at any further work needed .To be honest, I found the breast reconstruction nurses to be more helpful and informative than the BCN in clinic .

    The Diep op is very long ,about 7/8 hours and average stay in hospital is 5 days ,but I was happy to stay in as it gave me time to get my head round what had happened .There were some lovely ladies having had the same op ,and it was very comforting knowing you are not the only one going through it .

    I have 15 sessions of radiotherapy ahead ,just waiting for date to start .

    Wishing you all the best with your further treatment xx 

  • Hi Caff1,

    Yes treatment plans changing is so upsetting and I guess you have summarised in your experience just how I felt about the whole thing too.

    It was truly shocking and I was shaking I only wish they had had these conversations early on before I started chemo.

    I keep wishing if only my cancer wasn’t missed on my mammogram but I have to focus on my treatment going forward.

    I have not found clinic nurses accessible at all so good to know the breast reconstruction nurses are helpful and supportive.

    I think you give very good advice and to use the time in hospital to get your head round things is such a good way to process things.I did not imagine that there would be other ladies in the ward undergoing the same op as well so that is good to know and is reassuring.

    I also think I am having 15 rounds of radiotherapy after surgery too so best wishes with that  and your appointment with the reconstruction team too.Let me know how it all goes

    I only hope I find the strength and courage to get to the point you are now post surgery.

    Big hug Xx

     

  • I live in London and so don't know your area. My sister had ovarian cancer and found Christies Hospital very helpful.

    I had a double mastectomy with implants.  I didn't have enough body tissue to go any other way. The surgery went well.  I am pleased with the result and glad I didn't go flat.  Very much an individual choice. I recommend getting a good bras that offers the right support.

    The oncology physio was great and I did the exercises as recommended.

    The Macmillan advice book on breast surgery was very helpful.

    I hope that helps.

    ricki
  • Hi ricki,

    Thank you for your advice

    I was thinking of Christies initially but the BC nurse told me recently they do not do any surgery just Oncology...just shows you how much I knew!

    I think I was in shock and panic and Christies and Royal Marsden are the only hospitals I had heard of but I am glad your sister found them accommodating.

    It is so helpful to hear that your mastectomy surgery went well and you are happy with the result.I am pleased for you and it is very reassuring to hear as I face a mastectomy in the coming weeks.

    I am also leaning towards implants but I was only told a week ago I needed a mastectomy and I have not had any advice or consultations so far.

    I will access the booklet and do the exercises recommended too.

    Best wishes,

    ChakaKhan x

  • Hi Chakak. I’m undergoing treatment at The Royal Marsden currently. I’ve had a lumpectomy and recently completed my radiotherapy, If you still want some advice re surgeons I’m happy to help. 

  • Hi DaxieDog73,

    Thanks for reaching out.

    Congratulations for completing your surgery and radiotherapy and best wishes with the rest of your treatment.

    What was your experience there and who would you recommend regarding surgery?

    Im terrified right now!

    Chakakhan x