On the pulse 30 May 2013

  • Look Good…Feel Better
  • May’s Patient Support Group “Danced themselves happy”
  • Dr Anmol Malhotra will lead a talk at June’s Patient Support Group
  • Number of women eligible for NHS testing for the BRCA genes is set to double from June

Look Good…Feel Better
May’s ‘Look Good…Feel Better’ session took place last week. Ten women had the opportunity to have their make-up expertly applied by four beauty therapists, before taking away a make-up kit so they could recreate their looks at home. Lots of laughter echoed through the room, and everyone who attended commented not only on how much fun they had had but also how useful they found it to meet other women going through cancer treatment.

We would like to say a big thank you to everyone at ‘Look Good…Feel Better’ for their help in arranging these monthly sessions, and particularly to Eleanor Cain, Tina Ryan, Zoe Dean and Lindsay Bown, the therapists who donated their time to run this month’s session.

For more information, or to book your place on a future workshop, please contact Reema on 020 7830 2323 or email r.ved@cancerkin.org.uk.

Patient Support Group “Danced themselves happy”
This month’s Patient Support Group took place on Tuesday 28 May 2013. We were once again joined by Yvette Cowles, who led a taster session of her ‘Dance Yourself Happy’ class. The session was a mix of dancing (belly-dancing, Indian dancing, African dancing and even some 70s grooving all featured!) and laughter yoga, and everyone who took part spoke of how much they had enjoyed it. “I really enjoyed today’s session. Felt totally relaxed”. “Much fun and laughter, a chance to connect with my body, to meet other patients. Regular sessions would be great!” Following the very positive feedback, from 13 June we will be running these classes every Thursday from 1030 to 1130.

Dr Anmol Malhotra will lead a talk at June’s Patient Support Group
Our next Patient Support Group will take place on Tuesday 25 June, where we will be joined by Dr Anmol Malhotra, Lead Imaging Consultant from the Royal Free. Dr Malhotra will give a talk on the current and future developments in breast imaging, before answering any questions you may have on this topic. Please note his talk will start at 2pm (NOT the usual time of 11am).

To book your place at any of these groups, or for more information, please contact Reema on 020 7830 2323 or by emailing r.ved@cancerkin.org.uk.

Number of women eligible for NHS testing for the BRCA genes is set to double from June
From next month the NHS is expected to at least double the number of women who are offered genetic testing for the BRCA genes.

New guidelines from the National Institute for Health and Clinical Excellence (NICE) will loosen the eligibility criteria for genetic testing for the BRCA gene in England and Wales, as part of a drive to improve early detection and treatment of the disease.

Currently, testing is given on the NHS to women who have at least a 20% risk of carrying a BRCA gene fault, based on how many of her relatives have had breast or ovarian cancer, and at what age. From June, this threshold will be halved to 10%.

Diana Eccles, a professor of cancer genetics at Southampton University, who also works at the NHS’s genetic testing centre, said: “NICE’s guidance means that you won’t need to have such a strong family history [of breast and ovarian cancer] to get genetically tested, so more people will be able to access it.”

However, some experts believe that the 35 NHS genetic testing centres will not be able to cope with an expansion in the number of women eligible to go there. Diana Eccles added: “…lots of the 35 genetic centres don’t have enough staff to offer it to everyone. We are pretty busy at the current level of activity. If the level of activity doubles or trebles as a result of the guidance, we might struggle to deliver a timely service. People may have to wait for an appointment. There will be funding needed.”

“Some years ago, before services were sufficient to cope, people would wait for maybe a year for an appointment. That has changed with investment. My concern is that long waits could start to happen again.”

At the moment, women considered at high risk of breast cancer wait for up to eighteen weeks to be tested.

For more information, please see this article in the Guardian.

 

On the pulse 17 May 2013

  • Wig Workshop
  • Angelina Jolie has a preventive double mastectomy after discovering she had a faulty BRCA1 gene.

Wig Workshop
Our next Wig Workshop will take place on Wednesday 5th June at 11am. Once again, we will be joined by Magui and Debbie, who will showcase a variety of wigs and also give information and advice on all things hairy! Patients who have attended previous sessions have all spoken of how useful they found the workshop, particularly in increasing in their confidence.

Spaces on this workshop are limited so they will be allocated on a first come, first served basis. If you want to book your place, or just want more information, please contact Reema on r.ved@cancerkin.org.uk or call 020 7830 2323.

Angelina Jolie has a preventive double mastectomy after discovering she had a faulty BRCA1 gene.
This week, the news has been dominated by reaction to US actress Angelina Jolie’s decision to have a preventive double mastectomy, after discovering that she had a faulty BRCA1 gene. She announced her decision in a thoughtful article published in the New York Times which is well worth a read.

The news of her decision has led to considerable worldwide interest in inherited breast cancer and the BRCA1 gene in particular. Therefore, we thought it would useful to discuss inherited breast cancer.

No two people are born the same. Because of this natural variation in our genes, we all have slightly different chances of developing diseases in our lifetimes. Most breast cancers arise from genetic damage that accumulates over a person’s lifetime, however, approximately one in five women who develop breast cancer have a significant family history of the disease and one in 20 have inherited a fault in a gene linked with breast cancer, such as BRCA1.

Roughly one in a thousand people inherit a damaged copy of a BRCA1 gene from one of their parents. The BRCA1 gene tells cells to make a protein that helps repair damage to DNA; people who inherit a faulty copy are therefore less able to repair damage that accumulates in their DNA over time and so are at higher risk of breast cancer and at a younger age. In the UK, the average woman has a 12.5% chance of developing breast cancer at some point in her life. However, a female BRCA1 carrier has between a 60 and 90 per cent chance of developing the disease, with the precise figure for an individual varying dependant on particular factors, such as age, the number of affected family members and the exact nature of the fault in the gene.

There are multiple options for people who carry a BRCA gene fault; each woman has to make the decision that’s right for her. Surgery is not the only option- women can choose to have extra screening, either with mammography or MRI scans.

Mutations in the BRCA genes cause particular patterns in cancer down the generations, with families that carry these gene faults usually having a long history of breast or ovarian cancer. According to National Institute for Health and Care Excellence (NICE), you may have a higher than average risk of breast cancer if you have any of the following down one side of your family (a close relative means parent, sibling, grandparent, aunt, uncle, nephew or niece) and they must be blood relatives:

  • A mother or sister diagnosed with breast cancer before the age of 40
  • A mother, sister or daughter and another close relative diagnosed with breast cancer
  • Three close relatives diagnosed with breast cancer
  • A father or brother diagnosed with breast cancer
  • A mother or sister with breast cancer in both breasts; the first cancer diagnosed before the age of 50.
  • One close relative with ovarian cancer and one with breast cancer (at least one must be a mother, sister or daughter)

Risks are also higher among people of Ashkenazi Jewish descent.

If you are worried about your family history, please talk to your GP. However, it is important to remember that only one in a thousand people inherit a faulty BRCA1 gene. With one in eight women experiencing breast cancer at some point in their life, the likelihood of a family experiencing the disease is unfortunately high.

Cancerkin has been lucky to be able to host several talks by Cheryl Berlin, Genetic Counsellor at the Royal Free Hospital, who has spoken to both the Patient Support Group and the Young Patient Support Group on inherited breast cancer and answered questions our patients may have had.

For more information on inherited breast cancer, and the BRCA1 gene in particular, please see Cancer Research UK or Breakthrough Breast Cancer.

Holly Lovering                                                                    17th May 2013

On the pulse 9 May 2013

  • Hyde Palk Walk
  • The number of women under 50 diagnosed with breast cancer each year in the UK has exceeded 10,000 for the first time
  • A study suggests women with breast implants may be diagnosed at a later stage than women without

Hyde Palk Walk
The Hyde Park Walk is now only a month away (on 9th June 2013) and we are getting excited! Hundreds of walkers and runners will be helping us to celebrate our 25th Anniversary and to show support for women with breast cancer – we’d love you come along and join in as well. The walk is a beautiful 10k route through Hyde Park. To enter, all you need to do is fill out an entry form, which can be found on our website.

If you have any questions or need extra entry or sponsorship forms, please contact Holly on h.lovering@cancerkin.org.uk or call 0207 830 2323.

The number of women under 50 diagnosed with breast cancer each year in the UK has exceeded 10,000 for the first time
New statistics from Cancer Research UK has shown that 10,068 women under the age of 50 were diagnosed with breast cancer in the UK in 2010. This was the first time the figure had exceeded 10,000 and represents an 11 per cent increase since 1995, when the number of diagnosed in the same age group was 7,712.

This rise in younger patients developing breast cancer contributed to an overall increase in diagnosis rates among women of all ages.  The total number of women diagnosed each year is now approaching 50,000.

The reasons for the increasing rates of breast cancer in this group are not clear, but it’s thought that increasing alcohol intake and hormonal factors such as having fewer children, having them later in life and increased use of the contraceptive pill may be playing a role.

However, the statistics also show that fewer women under 50 than ever before are dying from the disease. In the early 1990s, the mortality rate from breast cancer in women under the age of 50 was nine per 100,000 women in the UK. By late 2000, this had fallen to 5 in every 100,000. More than eight in 10 women diagnosed with breast cancer before the age of 50 now survive their disease for at least five years. This is thought to be due to better treatment.

Sara Hiom, Cancer Research UK’s director of health information, said: “Breast cancer is more common in older women but these figures show that younger women are also at risk of developing the disease. Women of all ages who notice anything different about their breasts, including changes in size, shape or feel, a lump or thickening, nipple discharge or rash, dimpling, puckering or redness of the skin, should see their GP straight away, even if they have attended breast cancer screening. It’s more likely not to be cancer but if it is, detecting it early gives the best chance of successful treatment.

“The number of cases in women under 50 diagnosed with breast cancer is increasing slowly, but thanks to research, awareness and improved care more women than ever before are surviving the disease”.

Tara Beaumont, Clinical Nurse Specialist at Breast Cancer Care said: “The increasing incidence of breast cancer in women under 50 reflects the growing incidence overall.

“Though it is not fully understood why the rates of breast cancer in this age group are rising, it is extremely encouraging to see a continuation of the downward trend in breast cancer mortality.”

For more information, please see Cancer Research UK, the Telegraph and Breast Cancer Care.

Study suggests women with breast implants may be diagnosed at a later stage than women without
A study which suggested that women with cosmetic breast implants who develop breast cancer may have a greater chance of dying from the disease was widely reported last week. As the NHS response shows, it is important to stress that the research the media has reported does not suggest that breast implants cause breast cancer.

The research, published in British Medical Review, focused instead on whether breast implants cause a delay in diagnosis in women who have breast cancer, which may increase their risk of dying from the disease. To test this, the researchers analysed the results of a number of small studies, which considered whether having cosmetic breast implants was associated with a delay in diagnosis.

They found that women with implants had a 26 per cent increased risk of being diagnosed at a later stage of breast cancer than women without. When they considered another five studies that dealt with outcomes, they found that women with implants had a 38 per cent higher risk of death from breast cancer than those without.

They suggest these results may be due to the implant material obscuring breast tissue examined by mammography. Even though there are screening techniques to compensate, both silicone and saline-filled implants create radio-opaque shadows, which mean some of the breast tissue is not visible on the film. This could mean breast cancers are detected later, which often leads to worse outcomes.

However, as the researchers themselves point out, the results of this analysis should be viewed with caution as the review had several limitations. First, only a few studies were available.  Another concern is that the quality of some of the evidence was impaired by poor study methodology. For example, the section on outcomes was based on only five studies. Of these, three did not adjust their results for the woman’s age at diagnosis and all five remained unadjusted for the women’s BMI – both  important potential confounding factor that means the results should viewed cautiously.

As Dr Caitlin Palframan, of Breakthrough Breast Cancer, said: “Although it shows reduced breast cancer survival rates among women who had breast implants at the time of diagnosis, the findings are not conclusive and more research is definitely needed before we can fully understand the effect of breast implants on survival.

“We know there is some concern about whether breast implants make breast cancer more difficult to detect by mammogram, which could delay diagnosis, so we encourage women attending mammograms to inform their screening service that they have breast implants to ensure that all breast tissue is completely examined.

“Early detection offers the best chance of successful treatment, so we urge every woman with or without implants to be breast aware by regularly checking their breasts for any changes.”

Julia Frater, senior cancer information nurse at Cancer Research UK, also commented on the need for further research, saying: “This research suggests that breast implants may make cancer harder to detect, leading to later diagnosis. But it needs confirming in larger studies.”

For more information, please see the Guardian or the NHS website.