May is National Walking Month and organisers, Living Streets, are encouraging the general public to get out of their car, get off public transport and walk everywhere in an effort to get more active this month.

You can get involved in this fun campaign by taking part in the many activities that are planned for this month such asWalk to School Week from 18^th to 22^nd May and Walk to Work Week from 11^th to 15^th May. They have lot of resources to get you started such as a carbon buster calculator, walking report cards, walking tips, posters, flyers and an events calendar. Visit their website for more information.

Get involved for a fun way to get some exercise and improve your health. #WalkThisMay!

We’re currently working on developing a fibroids booklet to address some of the issues that came out of our fibroids survey last year. From the survey we found that:

• There was a general low level of awareness of fibroids amongst participants prior to their diagnosis.
• There was a good level of awareness of the main symptoms of fibroids but a low level of awareness of other symptoms.
• Participants were aware that ethnicity was a risk factor for fibroids but less aware of other risk factors.
• 80% percent of participants stated that they needed information but only 53% said that this was available to them.
• 63% of women said they didn’t feel that they had enough information to make an informed decision about their treatment

In addition to the above some participants stated that their biggest challenge in managing their condition was the lack of information and conflicting information about fibroids. For example, one participant said, “there is not enough information, particularly with regards to surgery alternatives and diet changes.”

What our booklet will cover

Our booklet will provide much-needed information on all aspects of fibroids. It will cover the symptoms of fibroids allowing women to quickly pick up on the possibility that they might have fibroids ensuring an early diagnosis which may mean less invasive treatment, the prevention of unnecessary pain and avoiding loss of fertility. It will also raise awareness of the risk factors and provide information on what changes women can make to their lifestyle to reduce their risk of developing fibroids and it will help women identify whether they are at a high risk of developing fibroids and therefore whether they should be more vigilant about recognizing symptoms and changing their lifestyle to reduce their risk. Finally, it will also cover treatment options so women are aware of what options are available to them.

We appreciate all those who have helped so far

We’re delighted to have had some excellent reviewers work with us. We would like to say a big thank you to Dr Nigel Hacking, Consultant Interventional Radiologist at Southampton University Hospital and Miss Rosol Hamid, Consultant Obstetrician & Gynaecologist and Head of Women Services at Croydon University Hospital for providing very useful and helpful comments and suggestions.  Additionally we’d also like to thank The Brielle Agency for proofreading our work .

We need your help for the final review

Now we are looking for members of the public to read the final draft before it goes off to our wonderful designers, Adinqra, and provide us with feedback on what needs to be improved. If you’d like to help please contact us on info@thelakefoundation.com

An interesting two-week diet swap experiment has been carried out by researchers at the University of Pittsburgh showing the damage a Western diet can cause to our gut. This study recruited  20 volunteers from the USA and 20 from rural Africa and each group was asked to switch diets for two weeks. The African group were asked to eat more junk food (burgers and fries) whilst the American volunteers were asked to eat a low-fat, high-fibre diet. Even though the study was quite a short one the impact of the diet swap was quite significant with the American group showing less bowel inflammation while the African volunteer’s bowel health declined.

This was an interesting study demonstrating the power of our diet in affecting our health, and in this case our gut health and our  risk of developing bowel (colon) cancer with Dr Stephen O’Keefe, from the University of Pittsburgh, saying:

“In just two weeks, a change in diet from a Westernised composition to a traditional African high-fibre, low-fat diet reduced these biomarkers of cancer risk, indicating that it is likely never too late to modify the risk of colon cancer.”

Researchers from the University of Sheffield have published data from the Yorkshire Health Study which has found that obese people fall into one of six categories and to address obesity strategies should be tailored according to which group a person falls into.

The six obesity groups were identified as: young males who were heavy drinkers, middle aged individuals who were unhappy and anxious, older people who despite living with physical health conditions were happy, younger healthy females, older affluent healthy adults, and individuals with very poor health.

The lead researcher for this study, Dr Mark Green said:

“Our research showed that those in the groups that we identified are likely to need very different services, and will respond very differently to different health promotion policies.

“In the future, we hope that GPs will keep in mind these six groups when offering advice to their patients.”
Researchers explained that what would need to be done to address obesity in the different groups would be to encourage alcohol reduction in young males, while for middle aged individuals who are unhappy and anxious an intervention involving increasing exercise mixed with psycho-social counselling could be beneficial. Young healthy females may not need any intervention, researchers said, as their health problems would be corrected naturally on their own. For those in the poorest health group the study showed advice surrounding exercise may not be reasonable and much more modest goals may be needed. For the affluent healthy elderly weight loss could be a priority.

This study is useful as it helps us understand specific, effective steps that can be taken to tackle obesity.

As a small charity with limited resources communications and PR can be a challenge, but it is important.  We completely understand the power of an effective communication and PR strategy in helping us reach our community with key health messages particularly around cancer and fibroids, our two main focus areas at the moment. With this in mind when we heard about Find a Cure’s workshop on ‘Communications and PR for Small Patient Groups’ we jumped at the opportunity to attend.

This workshop was held today and didn’t disappoint. It was an excellent workshop with very useful presentations from experts in the field of communication. In the first presentation, delivered by Sorsha Roberts, Online Communications Officer at the AKU Society, we learnt of the importance of social media for patient groups. Sorsha highlighted the statistics around the use of social media stating that a significant number of people were using social media to find health information and that 90% of people who found health information on social media trusted it and would use it. Furthermore Facebook is the fourth trusted source of health information and this is because information is delivered in a way that is less clinical, it’s clear, easy to understand and it’s delivered in a friendly and informal environment.

We then moved on to our next speaker Stefania Rucci from  Say Communications who spoke about ‘Working with the media’. This was a very informative presentation where Stefania started with an overview of some of the challenges small charities face in getting noticed in the media. These challenges included: competition with other health messages, the media having its own agenda which may not align with a charity’s agenda and small charities have fewer resources making it hard to break through in the media.  Despite these challenges it is possible to mount a successful media campaign but it needs some planning and the adoption of some key principles. These include: developing a compelling a story; getting to know your media and aligning your agenda with theirs;  targeting media to ensure high impact and high relevance; positioning your organisation as the expert; and always being ready . Additionally Stefania said it was important to produce great content, understand your audience, understand the different types of media (specialist,  national papers, local papers, magazines, TV, radio, bloggers and social media) and tailor your content to fit different types of media, i.e. be able to tell your story in a different way so it appeals to different audiences.

We were recently asked about breast implants and mammograms and in today’s blog we thought we’d address this.

A mammogram is an X-ray that is used during the breast screening process to detect breast cancer at a very early stage and hence aims to give women with breast cancer the best chance of survival.  During a mammogram X-rays are passed through the breast in order to generate images (radiographs) of each breast. If a tumour, cyst or calcium deposits are present this will be detected as bright spots on the radiographs.

When a woman has a breast implant (breast augmentation/ enlargement), the implant is inserted between her breast tissue and chest muscle or behind her chest muscle.  The implant may make a mammogram less effective at detecting breast cancer as it prevents the X-rays from penetrating the tissue properly and hence distorts the image. This can be overcome by a slight modification in the way in which the mammogram is performed which will allow as much of the breast tissue as possible to be visualised by the x-ray.

If you are due for a mammogram and you have an implant please definitely attend your appointment but  let the breast screening clinic know  beforehand that you have an implant so they are prepared and can screen you appropriately.

If you have a breast implant because you have had a total mastectomy (i.e. both breasts removed) you won’t need a mammogram as all your breast tissue has been removed but following your breast cancer diagnosis and after treatment you will be monitored regularly. If you have had a mastectomy on just one side then you’ll need to have a mammogram of the breast that remains.

We hope this answers any questions you may have on this topic and if you have any more questions please do let us know by leaving a comment below.

A study published this week in JAMA has shown that vigorous physical activity is better for our health and enables us to outlive those that just take part in gentle or moderate exercise.

This was a large study including 204,542 people who were followed for just over six years. Researchers compared participants who took part in moderate exercise such as gentle swimming, housework and social tennis to participants who engaged in some vigorous activity such as jogging or aerobics. They found that the risk of premature death was 9 to 13 percent lower in those taking part in vigorous exercise.

As a result of their findings researchers concluded that “vigorous activities should be endorsed in clinical and public health activity guidelines to maximize the population benefits of physical activity.”

This study is useful as it helps us understand the type of exercise that we need to take part in to reap the maximum benefit. We encourage everyone to introduce some vigorous activity into their exercise plan.

Prostate Cancer UK ‘s  new film, released this week, very effectively raises awareness of the fact that black men are at a higher risk of developing prostate cancer than other ethnic groups. You can watch this film below and let us know what you think by leaving a comment below.

In this week’s blog we speak to the very inspirational Adele Sewell.  Adele was diagnosed with breast cancer in 1999 and in 2007 was faced with cancer again when she was diagonsed with ovarian cancer.

Adele tells us about her experience with both breast and ovarian cancer, what she has learnt from her experience and why she thinks the black community is hesitant to talk about cancer.

How was your breast cancer discovered?

My breast cancer diagnosis was quite straightforward. I found a lump in my breast, I went to my GP and was referred for a biopsy, a mammogram and an ultrasound. The mammogram and biopsy were both inconclusive but the ultrasound confirmed it was cancer. I was 35 years old at the time, fit and healthy with no apparent risk factors for breast cancer. I had surgery (a lumpectomy which just removed the cancer plus a margin around it to prevent spread or recurrence). A few lymph nodes were removed from under my arm and as no cancer was found in these I did not have to have chemotherapy, just radiotherapy. Radiotherapy was 3 times a week for 6 weeks. I have been lucky and 16 years later this cancer has not returned. Touch wood and fingers crossed!

How was your ovarian cancer discovered?

The ovarian cancer diagnosis was quite a different story and a rather long road from first symptoms to final diagnosis. It took about 18 months and several visits to my GP before I was finally diagnosed. As a result the cancer was a late stage diagnosis. The symptoms I had started in early 2006 and I was not diagnosed until Sep 2007. The symptoms included urinary frequency, vaginal discharge, sciatica, lower abdominal pain, bloating, constipation. Also other random symptoms such as hiccups and a pain when I pressed my belly button, loss of inches around my hips but gained inches around my belly. This is because while the cancer was causing me to effectively lose weight, accumulation of fluid in the stomach, called ascites was stretching my abdomen.

Do your doctors know why you developed both breast and ovarian cancer?

When the diagnosis of ovarian cancer came the doctors said that people don’t usually get two completely separate primary cancers unless there is genetic involvement. I spoke to a genetic counsellor and agreed to have the blood test which came back showing that I had a mutation in the BRCA2 gene which is supposed to repair damaged DNA and so prevent cancer. It turned out that I had inherited this from my father. BRCA mutations in men can cause male breast and prostate cancer and my Dad died of prostate cancer, as did his eldest brother. My Dad’s cousin died of ovarian cancer in February this year and two of her sisters have had breast cancer, as have my sisters. Two of my Dad’s aunts are also thought to have died of cancer.

What has been the most challenging aspect of your journey with cancer?

Being told that my life expectancy was less than 5 years. Being told immediately after completing treatment that there was a 70 to 90% chance that the ovarian cancer would come back…which it did in 2010 and required further surgery and chemotherapy.

What life-lessons have your learnt from your experience?

Learning that each person is an individual and therefore that statistics and prognosis information will differ from person to person. Learning that it is ok to be vulnerable and to admit that you have fears. Learning that there are a lot of kind and generous people in the world.

What advice would you give to anyone who has recently been diagnosed with breast or ovarian cancer?

Don’t go on the Internet at 2am and search for ‘prognosis stage 3C ovarian cancer. Ask your consultant to tell you about people who have survived despite the odds.

We’ve noticed that the black community are hesitant to talk about cancer, why do think that is and how has talking about your experience helped you?

I have never met another black woman with ovarian cancer and I am sure that I am not the only one. I am not sure why black people are hesitant to talk about cancer. It is as though they are ashamed or embarrassed about it. I don’t know why that would be. I have found it really beneficial to talk to other women who have had breast and ovarian cancer. It is amazing to find that people who come from different walks of life, different ages and experiences find a common thread when they get together and share their experiences. It is very supportive to find others who feel the same way that you do.

Is there anything else you’d like to say to our readers?

I think the Lake Foundation Is a wonderful initiative which will be of great benefit to many. I am happy to still be alive, despite 3 cancer diagnoses, seven years after diagnosis with ovarian cancer and 16 years after diagnosis with breast cancer.

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We’d like to say a big thank you to Adele for speaking to us about her experience. If you have any questions or comments please leave them in the comments sections below and if you’ve been affected by cancer and need someone to talk to, come along to our cancer support group. For more information click here.

Macmillan Cancer Support has commissioned TNS BMRB, an independent research company, to explore the barriers and motivations for physical activity for those living with and beyond cancer. This research will help inform the development of interventions to help those living with and beyond cancer engage with the benefits of physical activity. TNS BMRB is an independent research agency which conducts work for a range of government departments and charities.

In April, TNS BMRB will be conducting one hour face-to-face home interviews with people living with and beyond cancer. This can be at a date and time most convenient for the individual.  TNS BMRB will be conducting additional research online later in May, which will be conducted through a smartphone app and online. This may be more appropriate for those who do not wish to have a face to face interview, or prefer to participate remotely.

In the interview participants will be asked about their attitudes towards physical activity, after treatment and at other times.  Participation in interviews is flexible – we can pause or stop the interview at any time for any reason. Taking part in this research is  completely confidential and anonymous, and the information provided will be used for research purposes only. We offer all participants a £40 gift as a thank you for their time.

We wish to include a broad spectrum of people living with and beyond cancer as part of the research – so we are interested in speaking to everyone. However, we are also aiming to reach some particular groups:

• People aged 14-20
• Aged 75 and over
• People currently receiving treatment
• People post-treatment, who have a non-curable cancer, or an advanced cancer and are in palliative care
• Those who do not have very active lifestyles

If you are interested in taking part or would like more information please contact Rebecca Paton (Rebecca.paton@tns-bmrb.co.uk, +44 7831 702513)