Regaining confidence after the diagnosis and treatment for breast cancer

I recently had the privilege of listening to a short story on BBC radio 4 called "chemo brain" written by Susmita Bhattacharya.  Susmita is a writer and a teacher and she developed breast cancer and like many people found life difficult afterwards. (Interestingly, in her "about me section" on her blog page, her diagnosis of breast cancer isn't mentioned).

The short story is well worth listening to and describes how she, like many other people, found the non physical side effects of chemotherapy difficult to cope with:

"the physical side effects of chemo had been spelt out...but what about the mind?..What would happen to my mind as the drugs entered my body....I became a writer who could not write"

Chemo brain caused her to loose her confidence.  She ended up writing notes to herself.  In the classroom, she had to rely on her years of experience to get her through her lessons.

She talks about the loneliness after the diagnosis of breast cancer.  She wanted to get on with her life as usual but life had changed for her and her family.  They have had to accept a new normal.

Susmita recalls how she regained her confidence.  She edited her novel and spent time with her local cancer support group.  She set up a writing workshop.  This gave her the confidence to write again.

It is now 2 years since she finished her treatment.  Writing about her experience has helped her come to terms with what has happened.  As a result of being a cancer survivor she has attended dance workshops, has had tea in the mayors house and has even visited Buckingham Palace.

She has learned to accept days as they come.

There are many reasons why breast cancer and its management can cause problems with confidence.  This year, at our annual CBMH October activity we have invited breast cancer survivors to discuss ways they have regained their confidence after the diagnosis and treatment of breast cancer.

If you are in Cape Town on 18/10/17, please come and join us.  For further details, contact Michelle Norris: Michelle.Norris@netcare.co.za.

Hope to see you there.


Survivorship or comprehensive care programmes

A second part of our meeting last month dealt with the topic of survivorship programmes for women who have been diagnosed with breast cancer.  What do we mean by a survivorship programme?  Should we not amalgamate all into a comprehensive care programme?

Linda Greef with Oliver Hart
Dr Heide Hart ran the session.  She was ably assisted her youngest son: Oliver Hart.  She started by defining the need as stated by the American Cancer Society: cancer patients face particular physical, psychosocial, practical and spiritual challenges.

What would a survivorship programme for women who have had breast cancer aim to do?  Ideally, it would coordinate care providing a multidisciplinary approach to cater for the needs of the individual.  These differ and are dependent on the age of the individual, the type of cancer and the treatment given.

Broadly, the following should be offered:
Information about screening programmes for other cancers (e.g. ovarian cancer)
Cardiac assessment post chemotherapy
Exercise programmes
Dietary advice                              
Lymphoedema management
Psychiatric help and assessment of cognitive function
Sexual advice
Pain assessment.
Dr Heide Hart

How should the programmes be run? In some centres, a survivorship specialist runs ongoing programmes and refers individuals to specialists as necessary.  Alternatively, each person could be discussed by a multidisciplinary team and an appropriate programme offered.  When possible, the shift should be for the majority of care to be provided by the primary care physician rather than the specialist.

However, the notion of "survivorship" is complex. What happens to women who develop metastatic disease?  Do they "fail" a survivorship programme?  We were fortunate to have Dr Rene Krause (a palliative care specialist) to add her perspective.  She suggested that rather than think in terms of a survivorship programme, each individual should be referred for comprehensive care.  This includes input from palliative care specialists.

When should a palliative care team be involved? The WHO have recommended that they should be involved from the time of diagnosis.  Dr Krause feels that they should be involved as soon as metastatic disease has developed.  Others argued that as many women with systemic breast cancer live for many years, it is too early.  We didn't reach a consensus.

Ideally, comprehensive care should be offered to any person who has been diagnosed with cancer. This should be from the time of diagnosis with the relevant specialists adding to broad based care as appropriate.

Please share your experience.


Medical data sharing

The move to the new hospital building has brought challenges and opportunities.  For example, provision has been made for an oncology centre. As a result, a new group of us will be working together.  Most of us have electronic notes but we use different systems.  How can we share our data? What are the regulations that govern us?  We held a workshop on the issue of data sharing.  Jean Claude Smith, the founder of DigIt, ran the workshop and we discussed several topics.

Safety of Data:
Last month, about 100 000 organisation were attacked by Wannacry.  In simple terms, it is a worm that manages to gain access to a computer through emails.  By opening an unsolicited email, the worm gains access to the computer, encrypts the files and demands payment in bitcoin to regain access to the data.  Amongst other organisations, the NHS was attacked.  I am sure individual doctors around the world were also targetted.  Jean gave us the following advice:
1. Prevention is the best method of defence
2. Don't open unsolicited emails or download suspicious files
3. Regular backup
4. Install anti ransomeware engine on your computer
5. Turn on Windows firewall

POPPIAct: how does it affect us?
In 2013, South Africa passed legislation known as the POPPIAct.  The aim of the act is to ensure all South Africans store, share and use data responsibly.  As health practitioners we:
1. Must give consent before our data is shared
2. Need a valid reason for collecting data
3. Are responsible for ensuring the data is used correctly
4. Must know who has access to the data
5. Must maintain the safety of the data
6. Must collect data accurately

So, as a group of individual doctors, can we legitimately share our data, adhere to the POPPIAct and still use our own electronic notes?  The answer is probably "no".  The problem is not unique to us.  In 2011, the NHS scrapped an attempt to merge notes having spent £12bn

For us, it looks as though sharing will not be possible so we will have to start again

 Contact Dig IT


Oncology Centre CBMH: Breast Course for Nurses

We have been at the new hospital for 6 months and have run our first Breast Course for Nurses.  The plan is to open an oncology unit which should be ready for chemotherapy in about 2 months and radiotherapy in 5 months.  As part of the process, we have had a Western Cape based BCN for the staff working here, those who will be involved in the new centre and cancer survivors involved in support.

Sr Lieske and Dr Anne Gudgeon
Carol van der Velde and Michelle Norris
The morning started with Dr Dedekind going through changes in the normal breast.  Having discussed clinical evaluation of a woman with breast problems, we had a lecture on investigations of the breast given by Dr Dicker and Carol van der Velde.  Dr Ann Gudgeon gave an overview about breast cancer treatment then Sr Correia shared her vast experience on wound management with us.

Suzi demonstrating lymphedema therapy on Claudine
 In the afternoon, we started with a session on lymphoedema management which was organised by Sr Lieske. We were joined by Kate Brinckmann, Dr Clare Neser (reconstructive surgeon) and Suzi Davey.  Kate gave us an overview, Clare discussed the role of surgery for the management of lymphedema and Suzi discussed the non surgical management.    There are now more than 70 certified therapists in RSA, 2 in Zimbabwe and one in Botswana.  To find a therapist in your area, please go to the loasa website.  (There are lymphedema therapists at both Tygerberg and GSH.)

Maryan Halefe and Dr Britta Dedekind

The day ended with Linda Greef talking about advocacy.  She reminded us that advocating about cancer includes advocating for transport, schooling as well as support for the individuals

There are 4 levels of advocacy
1. Individual advocacy
2. Community advocacy
3. Institutional advocacy
4. Political advocacy

What the day has emphasised is the importance of a multi disciplinary approach to the management of a women with breast cancer.  This doesn't just mean the input from specialists from different areas but input from all manner of medical and non medical professionals. A big thanks to Michelle Norris, Theresa Roux and Chris Tilney.
The redoubtable Linda Greef


Post truth in medicine

Recent political events unfolding in the USA have launched the concept of "post-truth" into many newspaper articles.  It was voted as the Oxford Dictionary "international word of the year".  They defined it as

"adj, Relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief:
‘in this era of post-truth politics, it's easy to cherry-pick data and come to whatever conclusion you desire’"

The adjective is largely used by political commentators.  However, I fear that we are dangerously close to a post -truth era in scientific commentary and debate.   Widespread access to the internet has resulted in many examples of commentators being able to cherry pick "evidence" to support an opinion.

For the purposes of this blog, I asked my ever-patient husband to give me a possible cause of breast cancer to investigate.  "Suntan cream" was the mumbled answer.

My search resulted in nearly 3m results.  On page one (the only one most of us ever take time to read) there were 2 plausible articles.
One was from the Daily Mail suggesting that there may be a link.
The second was from a site called "IFLScience", a site devoted to the lighter side of science, which suggested there was no link between the suntan cream and breast cancer.

Mail online accessed on 12/2/17

IFL Science.com accessed on 12/2/17

I am often asked to talk about breast cancer and inevitably the question of causality is raised. Had this been a topic I wanted to discuss, it would be reasonable for me to have cited either of the articles and come to opposite conclusions.

After doing some considerable research on the subject, I don't think there is a link between suntan creams and breast cancer.  (That is not the purpose of this blog).  We must ensure that as medical practitioners, we guard against  "cherry picking" articles that reinforce our opinion rather than accurately represent the facts.  It takes time and energy.  As an increasing amount of data is published on the internet, working out what is fact and what is fiction will become more difficult and time-consuming. 

However, if we don't do that, medical science will be trumped as well as politics!