07/11/2016

Young women discussing their decisions to have a mastectomy

Last Friday, the hospital had their annual breast cancer awareness day.  Each year, we try and focus on different aspect of breast cancer.  This year, the focus was on young women who had decided to have a mastectomy.  Four young women spoke.

Zoe and Helena
Helena was the first to speak.  Just before she was diagnosed with breast cancer, she had started a new relationship.  She felt that her diagnosis was some sort of punishment: some repayment for her sins.  What should her new partner do?  Should he stay or should he go? Her biggest concern however was her daughter.  She is a single parent.  How would her daughter cope?

Zoe, her daughter, was with us for the morning.  It was her 10th Birthday.  What an amazing and engaging child.  Once her mother had stopped speaking, she came to the front.  I asked her what advice she would give a child going through the same thing and she said "It will be alright in the end".  Helena told us how important her friends had been in getting her through.

There wasn't a dry eye in the room when Helena and Zoe had finished speaking.


Clare took over. She was in her early 30s when she was faced with the decision as to whether she should have a mastectomy.  She took an analytical approach to the whole process.  She researched the topic as much as possible. What were her chances of recurrence with her different treatment options? What were the effects of reconstruction.  She summarised her experience by saying it made her a better feminist: she became less judgmental of decisions taken by other women.

At the time that Elizabeth was diagnosed, she had a 3 year old boy.  She was planning to have another child and was ready to move to a family sized house.  The diagnosis of breast cancer catapulted her into a different life trajectory.  She became closer to her religion and learnt to ask for and accept help.  She described the disease as being levelling and humbling.  She described despair as the antithesis of hope.  Steve, her husband then recounted his experience of having been a cancer survivor.  We asked him to give other partners some words of wisdom:
"Don't underestimate Forries" "Express your fear and get it out""Book a holiday" "Focus on the other side"

Last but not least was Danilla.  Although she hasn't had cancer, she has inherited the BRCA mutation. She has seen her relatives get breast cancer and knows she has an 80% chance of developing the disease.  She had an enormous fight with the medical funders.  Her medical aid seemed to think it was fine for a 30 year old (who needed a bilateral mastectomy) to have the surgery with no reconstruction... After a 3 year fight, she eventually got a reconstruction.  She said that many of her friends felt the step was too drastic.  However, she feels an enormous burden has been lifted from her and that her decision has been validated.

It was such a privilege to listen to their stories: to hear about the experience from the other side. Please share yours.

Thank you.


Lancet, LAOSA, Morton and Partners, Pathcare, the Breast Course for Nurses and others attended the event







16/10/2016

The Hummingbird Centre, Cape Town

The newest addition for the provision of Complementary and Alternative medicine for people with cancer living in Cape Town with is the Hummingbird centre. It is opening up in Century City.    I have serious reservations about the validity of the therapy being offered as a core therapy so last week, I went to the launch to find out more.
The Hummingbird will be a cancer centre offering holistic and alternative management for cancer. The core therapy at the unit is NGPDT: New Generation PhotoDynamic Therapy.  What is that?  A person is given a photosensitizer that is derived from chlorophyll.  In theory, over the next few hours, normal cells release the agent and cancer cells retain it.  The light therapy then causes lysis of the cells containing the pigment and are destroyed.

Topical Photodynamic Therapy has been around for decades and has been successfully used to manage superficial lesions.  The European guidelines have recommended it's use for Actinic Keratosis, Bowen's disease, Basal cell carcinoma  What the new generation therapy is supposed to do is treat other cancers as well.  Before I went, I understood that the centre was primarily offering treatment to people with metastatic cancer but during the evening, reference was made to treating people with early cancer as well.

Light only penetrates a few millimetres.  In order to treat non superficial tumours, the light source has to be introduced by means of a probe to the cancer site.  There are 4 ways of administering the therapy:
1. Superficially
2. Focus laser beams onto the tumour directly
3. Apply the beam interstitially
4. Use XRay guidance to apply the therapy into deep tumours

This is interventional treatment.  Complications can occur when needles/probes are inserted into the body.  It is not clear to me how people with metastatic cancer with many deposits of cancer will be adequately treated.

The invitation promised a summation of the evidence based research using NGPDT.  Dr Donald Murphy presented the results of a phase 1 clinical trial in the management of men with prostate cancer.  A Phase 1 clinical trial has to show that the therapy does no harm: it doesn't show that it works.  There were a few case studies presenting showing its effectiveness but there was no scientific evidence presented showing that NGPDT cures cancer.

Gary Scallan, the CEO, gave a talk outlining the vision of the new centre.  He said that they wished to bring affordable cancer care to millions of Southern Africans.  He noted that conventional cancer medicine is very expensive and that that NGPDT is cheaper.  Dr Comyn (medical director) said that he believes NGPDT can be used to treat Karposi's Sarcoma.  However, there have been no studies looking at it's usefulness in the management of these patients.

Several cancer NPOs have joined with the Hummingbird centre.  The largest of these, PLWC, was rumoured to be receiving some form of commission for referring patients to the centre for treatment.  I was concerned about the rumour as PLWC is an excellent NPO providing cancer care for many cancer survivors and I was worried that they were loosing their autonomy.  I was therefore delighted to hear Mr Scallon confirm that the rumour is not true and PLWC will not be receiving financial incentives from them.

So at present, the Hummingbird Centre is a space offering alternative cancer treatment and support.  The medical team doesn't include any oncologists/surgeons.  The core therapy being offered is NGPDT.  There are no clear guidelines as to who will receive the treatment.  Many organizations have expressed their reservations about this treatment.  The NHS, has said "It is not supported by any scientific evidence".

I hope that proper trials will be carried out to define exactly what cancers can be treated with this modality and that the Hummingbird centre will be clear as to who can be treated.  Personally, I still have reservations about the validity of NGPDT as a systemic cancer treatment.







12/09/2016

Cancercare cancer survivors day

Well done Linda Greef for organising a excellent survivors summit at His Peoples Church in Goodwood.  It was well attended and everyone I spoke to was very impressed.

The summit was opened by Hanif Hamdulay from Cancercare.  (GVI have become Cancercare). They are a national network of oncology centres with 9 centres in the Western and Eastern Cape.

The MC for the morning was the charming Dr Michael Mol who trained as a medical doctor years
ago but has spent most of his working life in other areas including being a presenter on Top Billing.  The first speaker that he introduced was Conn Bertish, a cancer survivor and creator of Cancer Dojo.  What an incredible speaker.  What an incredible story.  He was diagnosed with a brain tumour and was teated with surgery and radiotherapy.  He has made an excellent recovery and is now a member of "the world's scariest club".  He has used his background in branding and advertising to set up Cancer Dojo.  The concept is fascinating and he encourages people to "take themselves out of helplessness".

The next speaker was the oncologist Dr Jill Harris, who Michael likened to the actress Sigourney Weaver.  She talked about the guidelines for follow up for cancer survivors.  The debate for many is about how many investigation should survivors have? Should they have regular expensive scans exposing them them to the risks of radiotherapy or should they be followed up symptomatically?  The point she made that really resonated with me was that seeing a well, longtime survivor for for a follow up is a privilege for all of us who work in the cancer field.

I spoke afterwards about some of the aspects of the the Na/utroceutical industry.  I will blog about my talk separately.


Rod Warner is a resilience consultant and author of the book "The Building Resilience Handbook".  His talk can be summed up with a phrase he used.  "Life is 10% what happens and 90% how you react to it".






DrAaron Motsoaledi (Minister of Health) was unable to join us and was ably represented by Prof Melvyn Freeman, the chief director of NCD from the Dept of Health.  He expanded the idea of a survivor being the individual with cancer to the notion of the family being survivors of the
experience.  However, the most poignant part of his speech, for me, was when he quoted from Mike Marqusee's book, The Price of Experience.






I was unable to stay for the parallel workshops which I heard were excellent.  To all of you who attended and helped organise the event: thank you

04/09/2016

Isolates, Herbs and Formulations in Breast Cancer Care

Yesterday, I spent 3 hours at Cape Town's Mount Nelson Hotel listening to Dr Weber on the subject of isolates, herbs and formulations in breast cancer care.  I am not a homeopath and have never attended a lecture on the subject before.  I found it fascinating.

Dr Weber, the CEO of Panaxea, a company which "provides our practitioners with the most efficacious natural remedies available"  He is based in Australia and is a visiting professor at Tianjin
University.  His talk was based on the content of his book "Botanical Oncology:isolates" which was published in 2014.  He went through 220 slides and it would be an impossible task to even begin to summarise all the information presented. Nearly all the slides had a least one reference cited.

His talk was a mixture of traditional Chinese medicine, evidence based medicine and translational research. The different approaches were applied variously to different subtypes and stages of breast cancer.   I found it difficult to follow.  It is perhaps because I am not au fait with many of the concepts (eg phlegm which in traditional Chinese medicine apparently refers to interstitial fluid).  What bothered me was the lack of clinical outcome data.

When a drug is being developed, it has to go through at least 3 phases:
When a drug is being considered for use for cancer treatment, the oncologist wants to know whether or not the administration of the drug will lead to improved outcome (There has been a lot of criticism about the pharmaceutical companies.  Amongst other issues, they often do not publish the results when a drug is shown not to work and do not always take account of patient side effects).  Herbal products fall outside the current legislation omitting the need for outcome based studies, and controlled trials do not have to be conducted before they are marketed.

In a short three hours, an amazing number of products were discussed (I think, over 100) but survival data was given on only 90 patients: half of whom had received "herbs" or JLBSHJ formula.  All of the rest of the data was anecdotal.

Western medicine does not always get it right and there is an increasing demand from patients for Complementary and Alternative Medicine.  Dr Weber urged oncologists to engage in more dialogue with integrative oncologists.  I am encouraged by his commitment to "research and evidence based medicine" and am sure as the evidence for the usage of isolates, herbs and formulations in the management is produced, a more integrated approach will result.



28/08/2016

Cancer survivors conference, Cape Town

Last weekend, the 2016 Olympics came to a glorious end.  The UK did spectacularly well but so did South Africa.  They brought back 10 medals which put them in 30th position overall.  Well done to the team.  I am sure that there are many individual stories that are remarkable but there are 2 young men who won silver for RSA whose lives have been affected by cancer in the last few year.

Both Chad le Clos' mother and father have been treated for cancer.  His mother had a recurrence of documentary, (which I haven't watched) he talks about knowing what was going on with them and how it affected his training.
her breast cancer and his father prostate cancer.







Lawrence Brittain and Shaun Keeling won a silver in the mens coxless pairs.  Lawrence was treated for Hodgkins lymphoma in 2015 and unbelievably still managed to compete.  In 2014, his performance was dropping despite working harder.  "I was beginning to think there was a limit" he said.  His mother, a palliative care nurse, became suspicious and ordered routine blood tests which led to the diagnosis.  He put on 15 kg during his treatment and started training again in 2015.  Having achieved his remarkable triumph, he now says, "Maybe there's no limit to what I can achieve"







Santiago Lange and from Argentina was the oldest Olympic medal winner at the age of 54.  With his
team mate Cecilia Carranza Sasoli, he won a gold in a sailing event.  He had lung cancer diagnosed last year and had half a lung removed.  He was back on his bicycle 5 days post op and became obsessed with competing in Rio.




These inspiring stories and many other like them mean that I will am looking forward to attending the first Cancer Survivors Conference in Cape Town on 10th September 2016.  If you haven't got your (free) ticket, please book before it is too late.


31/07/2016

Breast course for Nurses: annual fundraising event

We had our annual fundraiser/thank you event on Friday.  It was held at the Atlantic Imbizo at the V & A Waterfront.  Although largely sticking to the familiar format of previous events, this year we had a lunch rather than brunch.

I gave a summary of courses taught in recent months and new nuances in our approach, we then had a discussion about teaching adults rather than children.  We had contributions from different perspectives, including those of Prof Dave Woods, Joy Crane, Merunisa Mohammed, Josie Edge and Karen Hill.

Several points were raised:
-Karen Hill stressed that the content needs to be relevant, teaching things appropriate to work places
-Time spent talking needs to be short: Joy pointed out that after 10 minutes attention starts drifting off
Tony Brutus, Prof David Woods, Joy Crane
-Technology should be used appropriately (not as a barrier).  Josie Edge is my niece.  She has been visiting schools in Cape Town and noticed that as a result of less technology, there was a closer communication between teacher and pupils.
-Dave Woods recommended that we should not try and teach but to share understanding.
-Merunisa has been involved in teaching for many years and now teaches teachers.  She said that it was time to change from focus on the teacher, to the knowledge already in the class when teaching children as well as adults.

Ariella in action


After an excellent meal, fund raising took the form of an auction.  We were lucky enough to have Ariella Kuper as the auctioneer this year.

Watching her in energetic, inimitable action was remarkable.
We had many lovely gifts and I would like to thank all those who donated them as well as those who bid for them.  The raffle raised a record amount.



The event was extremely well organised: a special thank you to Michelle, Lieske, Nadia, Gadija and Josie.

Nadia, Gadija, Michelle and Josie wearing the new T shirts

As a result of all the generosity of those who support us, we can start another year of projects and we have plenty of requests and new ideas in the pipeline!

Lieske's BCN nails



09/05/2016

BISSA: a surgeons perspective

BISSA, the Breast imaging Society South Africa, held a conference at Spier this weekend. It was a joint meeting with SBI (Society Breast Imaging) and RSSA (Radiological Society of South Africa)

The majority of the first day was about breast screening.  The speakers were all radiologists from the USA so the emphasis was on mammographic screening.  There was little debate about the problems
with screening programmes.  For example: does breast screening lead to the over treatment of breast cancers that would never cause a problem?
Perhaps, not surprisingly as it was a radiological conference, that problem was attributed to treating clinicians who over treat them!  (The argument put forward was that the radiologists only diagnose the small cancers:  it is the surgeons and oncologists who over treat them).

I may be biased but I don't think that is a true reflection of the situation!

There was a lot of discussion about supplementary imaging of the breast.  Breast screening generally starts with a mammogram.  When should an ultrasound be performed?  Are more cancers picked up as a result of doing more US?  When should a breast MRI be performed?

The important question that is much more difficult to answer is does more imaging stop women dying from breast cancer?

The second morning was spent on interpretation of images: mammography, US and MRI.   Prof Michael Linver gave a talk about the role of the Radiologist as a clinician.  He stressed the importance of doing a thorough breast examination and communicating with both the women being imaged and other members of the multidisciplinary team.

The afternoon session was a multidisciplinary session.  The first talk, given by Dr Jakolsen, was about screening for metastatic lesions after the diagnosis of breast cancer.  She made 2 main points. Patients with early breast cancers (Stage 1 or stage 2A) need no screening for metastatic lesions.  Physiological screening (PET Scans) may be better than anatomical imaging for those who do.


Dr Sarah Nietz gave an excellent talk on the changing face of breast surgery. She was followed by Prof Frank Graewe who talked about breast reconstruction and then Dr Rika Pienaar who talked about how the histological subtype of the cancer should direct follow up imaging rather than stage of disease.

The final day started with Dr Simon Nayler (pathologist) who talked about the information needed from radiologists.  Once again, the need for multidisciplinary discussion was stressed.  Dr Smilg gave an excellent talk on breast changes in HIV positive men and women.  Dr Ramaema gave an overview about TB of the breast. There have been no prospective studies done on the subject.  A retrospective study done in SA by Dr Ramaema looked at the use of PET scan/MRI scan in differentiating breast TB from breast cancer.  (My experience in Cape Town is that only 50% of women who present with TB of the breast are HIV positive).  Dr Loftus gave an overview of the Xhosa perspective of breast cancer.

The majority of talks at the the conference were from the guest speakers, Prof Jessica Leung, Prof Michael Linver, Dr Maxine Jochelson, Dr Reni Butler and Prof Wendy DeMartini, who are all from the USA.  I learnt a lot from all of them but as this is a Cape Town blog have chosen to write more about the local speakers.

Many thanks to the local organisers: Prof van Rensburg, Dr Eugene Jooste and on a personal note, I would like to thank Dr Richard Tuft.  Please come to BIGOSA in Joburg on 21st and 22nd October.