When Health “Guidelines” Become Rules - A patient’s fight for choice in breast care
This article was written by a patient (my wife) who successfully challenged an MDT decision to obtain her choice of treatment. It is an honest account of the impact an MDT had on her life.
Women in the UK face a serious anomaly regarding breast surgery. If a woman wishes to have cosmetic breast surgery she can do virtually anything she wants, with the agreement of her surgeon. If a woman develops a cellular abnormality in the breast, she is at the mercy of the local MDT who have never met her or heard her views. She either accepts the MDT’s treatment plan or refuses it. There is no other option. I chose to challenge this state of affairs.
In October 2013, I underwent a routine screening mammogram. This indicated a problem – “calcification and abnormal cells” - in my right breast. The following 6 months were the most stressful and terrifying of my life.
I chose to see a Consultant Oncoplastic surgeon privately, Mr. J. Krupa in Leicester. He told me that my life-time risk of developing breast cancer had increased to over 20% and that the guidelines for patients in my category indicated “annual mammograms and close monitoring”. As I am a natural worrier this route was unacceptable to me:
• I would have spent months prior to a mammogram worrying that it would be abnormal and, even if it was normal, I would not have been reassured. Several close friends had died from breast cancer; all had undergone the full battery of treatment.
• The only certainty that mammography can offer is that a lump/tumour has developed. From this point on, the medical profession is playing “catch-up”. Unfortunately, this is not always successful. As you are aware, the overall ten-year survival following breast cancer is 78% (slightly worse odds than playing Russian roulette, 83%).
• I was not prepared to risk developing breast cancer. No current treatment is 100% effective.
I was certain I wanted bilateral mastectomy. Mr. Krupa informed me that surgery was not usual in my type of case, but there was provision for women for whom the stress of NOT having surgery was psychologically unacceptable. He carefully explained the risks and possible complications of major breast surgery but none of this changed my mind.
My reasons for wanting surgery were:
• peace of mind!
• I saw it as a window of opportunity to take control of the situation
• I was well with no other health issues
• I had found a caring and highly skilled surgeon, expert at minimally invasive surgery, who might not be available should I develop breast cancer in 5 or 10 years time when I might not be in such good health
• having surgery with no cancer present ensured that Mr. Krupa would achieve the best possible cosmetic outcome.
What happened next
• I was asked to see a Consultant Psychiatrist to establish my mental state. I was pronounced of sound mind. He said that in America “we would not even be having this conversation”.
• Even though I was a private patient, Mr. Krupa had to take my case to the NHS MDT at the Glenfield Breast Care Centre in Leicester. I was not allowed to put my reasons for requesting mastectomy to the MDT in person or by letter. Their verdict was to refuse surgery.
• Mr. Krupa then referred me for a second opinion to Mr. R.D. Macmillan the lead Oncoplastic breast surgeon (and member of NICE) at the Nottingham Breast Institute. He had no hesitation in fully supporting my request for bilateral mastectomy and said that he was seeing more women in my situation requesting surgery. He considered that I had a “good case for having it done on the NHS”.
• Mr. Krupa then agreed to perform a bilateral mastectomy and reconstruction and this was carried out in June 2014.
Where am I now?
I have complete peace of mind and to me that is beyond price. I owe my entire future mental wellbeing to Mr. Krupa’s courage and holistic approach. I have a brilliant cosmetic result. Nobody seeing me in a pretty bra can tell that I have had surgery - my breasts look entirely natural.
I have spoken to many women (of all ages) about my decision and most asked to see the results of my surgery. All but one said that they would have no hesitation in making the same choice I did. As things stand, they would have a fight on their hands. They would be subject to the views of their local MDT and dependent on having access to a compassionate Oncoplastic surgeon using modern techniques. This type of surgery should not be restricted to the articulate and financially able. More emphasis should be directed to prophylactic treatment.
When a woman receives a similar diagnosis and is offered the “standard” course of treatment according to current guidelines, she may feel that this is not the path she wishes to follow. Not every woman would make the decision I did but she should be given the choice regarding what happens to her own body. Guidelines are not rules but, in some health authorities, they are being treated as such. The decision to undergo mastectomy should not be taken lightly on either side and women should be fully informed and supported, as I was.
There is much talk about medicine being personalised for the individual. My experience was exactly the opposite. My husband found a 2011 King’s Fund publication subtitled “No Decision About Me, Without Me”. It makes interesting reading. (http://www.kingsfund.org.uk/sites/files/kf/Making-shared-decision-making...).
The choice between different treatments should be made by patient and doctor, with MDT advice. The clinician should feel free to choose a treatment that best suits the patient even if this is not the first option of the MDT.
Tricia Falconer Smith
NOTE: Mr. Krupa and Mr. Macmillan have approved the content of this article and have given permission for their names to be included.
Rapid Response:
When Health “Guidelines” Become Rules - A patient’s fight for choice in breast care
This article was written by a patient (my wife) who successfully challenged an MDT decision to obtain her choice of treatment. It is an honest account of the impact an MDT had on her life.
Women in the UK face a serious anomaly regarding breast surgery. If a woman wishes to have cosmetic breast surgery she can do virtually anything she wants, with the agreement of her surgeon. If a woman develops a cellular abnormality in the breast, she is at the mercy of the local MDT who have never met her or heard her views. She either accepts the MDT’s treatment plan or refuses it. There is no other option. I chose to challenge this state of affairs.
In October 2013, I underwent a routine screening mammogram. This indicated a problem – “calcification and abnormal cells” - in my right breast. The following 6 months were the most stressful and terrifying of my life.
I chose to see a Consultant Oncoplastic surgeon privately, Mr. J. Krupa in Leicester. He told me that my life-time risk of developing breast cancer had increased to over 20% and that the guidelines for patients in my category indicated “annual mammograms and close monitoring”. As I am a natural worrier this route was unacceptable to me:
• I would have spent months prior to a mammogram worrying that it would be abnormal and, even if it was normal, I would not have been reassured. Several close friends had died from breast cancer; all had undergone the full battery of treatment.
• The only certainty that mammography can offer is that a lump/tumour has developed. From this point on, the medical profession is playing “catch-up”. Unfortunately, this is not always successful. As you are aware, the overall ten-year survival following breast cancer is 78% (slightly worse odds than playing Russian roulette, 83%).
• I was not prepared to risk developing breast cancer. No current treatment is 100% effective.
I was certain I wanted bilateral mastectomy. Mr. Krupa informed me that surgery was not usual in my type of case, but there was provision for women for whom the stress of NOT having surgery was psychologically unacceptable. He carefully explained the risks and possible complications of major breast surgery but none of this changed my mind.
My reasons for wanting surgery were:
• peace of mind!
• I saw it as a window of opportunity to take control of the situation
• I was well with no other health issues
• I had found a caring and highly skilled surgeon, expert at minimally invasive surgery, who might not be available should I develop breast cancer in 5 or 10 years time when I might not be in such good health
• having surgery with no cancer present ensured that Mr. Krupa would achieve the best possible cosmetic outcome.
What happened next
• I was asked to see a Consultant Psychiatrist to establish my mental state. I was pronounced of sound mind. He said that in America “we would not even be having this conversation”.
• Even though I was a private patient, Mr. Krupa had to take my case to the NHS MDT at the Glenfield Breast Care Centre in Leicester. I was not allowed to put my reasons for requesting mastectomy to the MDT in person or by letter. Their verdict was to refuse surgery.
• Mr. Krupa then referred me for a second opinion to Mr. R.D. Macmillan the lead Oncoplastic breast surgeon (and member of NICE) at the Nottingham Breast Institute. He had no hesitation in fully supporting my request for bilateral mastectomy and said that he was seeing more women in my situation requesting surgery. He considered that I had a “good case for having it done on the NHS”.
• Mr. Krupa then agreed to perform a bilateral mastectomy and reconstruction and this was carried out in June 2014.
Where am I now?
I have complete peace of mind and to me that is beyond price. I owe my entire future mental wellbeing to Mr. Krupa’s courage and holistic approach. I have a brilliant cosmetic result. Nobody seeing me in a pretty bra can tell that I have had surgery - my breasts look entirely natural.
I have spoken to many women (of all ages) about my decision and most asked to see the results of my surgery. All but one said that they would have no hesitation in making the same choice I did. As things stand, they would have a fight on their hands. They would be subject to the views of their local MDT and dependent on having access to a compassionate Oncoplastic surgeon using modern techniques. This type of surgery should not be restricted to the articulate and financially able. More emphasis should be directed to prophylactic treatment.
When a woman receives a similar diagnosis and is offered the “standard” course of treatment according to current guidelines, she may feel that this is not the path she wishes to follow. Not every woman would make the decision I did but she should be given the choice regarding what happens to her own body. Guidelines are not rules but, in some health authorities, they are being treated as such. The decision to undergo mastectomy should not be taken lightly on either side and women should be fully informed and supported, as I was.
There is much talk about medicine being personalised for the individual. My experience was exactly the opposite. My husband found a 2011 King’s Fund publication subtitled “No Decision About Me, Without Me”. It makes interesting reading. (http://www.kingsfund.org.uk/sites/files/kf/Making-shared-decision-making...).
The choice between different treatments should be made by patient and doctor, with MDT advice. The clinician should feel free to choose a treatment that best suits the patient even if this is not the first option of the MDT.
Tricia Falconer Smith
NOTE: Mr. Krupa and Mr. Macmillan have approved the content of this article and have given permission for their names to be included.
Patient consent obtained.
Competing interests: No competing interests