How do I get the strength to start with a new surgeon re DCIS?

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Hello

ve got high grade DCIS, large area 6 x 5 cm, diagnosed in Nov 14 and still not had treatment.

After much thought booked in for double MX and tissue expanders next week.

BUT bombshell at pre op meeting this week.

Didn’t start well, surgeon asked me to remind him what op he was doing.

Then decided half way through the exam to say actually I won’t do double mx now only single and see how you get on.

Shocked was the understatement as he has recommended double MX from the outset due to recurrence rates, droopy boobs !! and different size boobs, it just gets more flattering.

Nightmare afternoon followed though had support of fab breast care nurse who was appalled.

Nothing has changed, have even managed to lose 7kgs.

Eventually after much discussion between him and BCNurse he said he would reluctantly do double MX but if I understood complications.

So now I don;t feel I can trust a surgeon who has so little disregard for his patients and changes his mind at whim.

Researched surgeons so carefully, he is world renowned, works in London and has been in the press recently for treating a high profile patient who had a world renowned blog and tv drama based on her life.

BUT feel I can not trust a person who does this.

Now have cancelled the operation and am back to square one.

 

Love to you all xx

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Hello Tibetone

Sorry you haven’t had any replies to your post yet.  Our free helpline re-opens on Tuesday morning if you would like to talk to someone about your concerns. 

The number is 0808 800 6000 and normal opening times are Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes

June, moderator

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So sorry you had such an appalling appointment with your surgeon.
Don’t give up I am sure a second opinion will restore your confidence and allow you to move forward.
I am awaiting reconstruction/reduction and although it has been a long wait I feel confident in my surgeon and the team who have looked after me so far.
Take care love. Christine.

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Hi TibetOne

I absolutely agree that you should find another surgeon for a 2nd opinion. You must have faith and feel comfortable With that person. He sounds very arrogant. You deserve better. I have been fortunate to have a lovely caring surgeon on the NHS and I couldn’t ask for better. Are you going privately and where do you live?

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Hi thank you so much. I live in Leeds, have been recommended to another surgeon who I can see on 17th but think his list is very busy. Getting v hassled about it now, a friend who is recovering from BC told me about a Neighbour who had DCIS and they discovered invasive cancer when they did the WLE so that has put the fear of God in me xx

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I was going privately but though will have the next apt privately would rather then be treated in NHS XX

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Hi TibetOne

Try not to get too worried about invasive BC. I had that and DCIS but they removed all the invasive stuff quite successfully and no nodes were involved. Did you choose not to be referred to an NHS surgeon when you were diagnosed? Quite honestly, i would always opt to have surgery at a NHS hospital, as they have all the services there 24/7. I’ve had amazing treatment from my NHS surgeon. Anyway I hope you get sorted with a good surgeon soon. X Francine

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Hi thank you x I was diagnosed by NHS screening as moderate risk because of family history. Went for second opinion privately which resulted in the disaster situation I’m now in. Saw NHS surgeon last week who recommends an out of area surgeon as being best to do my operation. Seeing him privately but as his list is pretty full till Sept!!! will have to ask him to do me on NHS ASAP. Getting worried as diagnosed with high grade DCIS last November. Aggree NHS is best place for major surgery and treatment, used my insurance as the NHS consultant said my choice which treatment path to take as no right or wrong answer so I looked for more guidance. How wrong I was :frowning: xx

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Hi TibetOne
Just wondering if you’ve managed to sort your surgeon out yet? Hoping you have, as it must be so stressful for you. X Francine

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Hello :slight_smile: thank you so much for your replies, flagging a little at the moment! Have apt this Wednesday morning with surgeon so hopefully will get a date sorted then.
Am so tired of the whole thing and I’ve not even had any treatment yet, don’t mind where op is done, garden shed, basement, supermarket as long as I get it done! Panicking now in case they find any invasions, don’t know how likely that would be? Will update after Wednesday hope you are all ok and thank you so much xxx

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Hi Tibetone

How did your appt go with the surgeon this morning? Hope you felt comfortable with him/her after your previous experience xx

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Glad you have your date sorted.

 

As you say, surgical skills are more important than bedside manner! I think they leave that to the BCNs. My surgeon was fine - no nonsense, and quite direct but not unsympathetic.

 

I’m now 5 weeks post op - got fitted with my false boob today! Healing well and have most of the movement in my arm back, but still get tired very easily. But get better every week.

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Hi thought I’d update you all. Operation went well, much smaller area of DCIS found than anticipated so delighted.
Healing very well though weird having smaller symmetrical boobs. So pleased this bit is over for now. Get very easily tired but that’s fine. Love to you all xx

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Hi thought I’d update you all. Operation went well, much smaller area of DCIS found than anticipated so delighted.
Healing very well though weird having smaller symmetrical breasts. So pleased this bit is over for now. Get very easily tired but that’s fine. Love to you all xx