Conflicting information

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Almost a year ago now I was diagnosed with my 4th recurrence and was given conflicting information as to what road to go down with regards to treatment. My surgeon consultant who gave me the news said I would need mastectomy, which would involve loosing my reconstruction I had in 2005 and another on other side. She also said I would need clearance of my lymph nodes and a skin graph, along with chemo, it was my choice which to have first. Although I have had a few recurrences I have never had chemo so decided to have that first, not knowing what type it would be.

An appointment was made for me the following week to see oncologist to discuss this, she said she was strongly against surgery, didn’t feel it would be beneficial to me and had voiced this with my surgeon, needless to say I was happy to go along with that. I have now been taking Capitabine for almost 12 months, coping with any side effects.

For some reason all of a sudden I am doubting whether I am doing the right thing, I can still feel a lump and wondering if I should have had further surgery. How was I expected to make a decision when the surgeon and oncologist couldn’t agree,

I have been told the chemo will not get rid of the cancer completely just hopefully stop it spreading. I am going for a scan on Thursday but never feel they are 100% accurate.

What to do I wish I knew.

Jan

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HI Janice, I really feel for you cos our doctors are often the people we look to for clear and reassuring and knowledgable input - and then they go and disagree with each other, hmmm, not helpful really.
My OH is an oncologist and I have learnt two things since being ill myself and listening to conversations between the other docs we know -

  1. sometimes they genuinely don’t know whats best cos there isn’t a simple and straighforward answer from the research so then its down to them and you deciding whats best for you
  2. sometimes doctors have really really strong personal drivers that are actually about them and not the science or the research or your needs - for example a surgeon beleiving very strongly in the power of surgery and not chemo, …
    so my OH very very very often recommends patients to get a second opinion if they are not totally sure about what the original team said. You can do this by asking your GP to refer you for one…and no one minds, and its really frequently done and an acceptable thing to do.
    We have enough uncertainty in our lives …its fine to want to reduce the uncertainty as much as you can by getting a little more clarity from your team if they can give it, or from someone else,

sorry I’ve gone on and on, all the best Nicola

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Couldn’t have replied any better!

xx

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Thanks Nichola

I agree that very often even the experts don’t know the answers. You are right about surgeons wanting to do surgery, my oncologist said that, its such a big operation though and I have to live with the results. My surgeon is Greek and while she is very good at her job, her bedside manner is not so good and she can be very blunt when giving bad news.

You haven’t gone on and on, you have been very helpful.

Thanks again.

Jan