We are delighted to announce the launch of our new fibroids booklet. This booklet was developed in response to our fibroids survey which  showed 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% 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 the booklet covers

Our booklet provides much-needed information on all aspects of fibroids from symptoms and risk factors to treatment and prevention. It aims to ensure that women have accurate, reliable information about this condition and importantly discusses the treatment options available. We hope this booklet will be a one-stop-shop for anyone with questions or concerns about fibroids.

We appreciate all those who have helped us

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 helpful comments and suggestions.

We would also like to thank Celia Osu and Tenequa Wildy for their useful feedback and  our case studies for their willingness to share their experience and raise awareness. Finally, we are grateful to The Brielle Agency for proofreading our work and to Adrinqa for their creativity in designing the booklet.

You can download a pdf below and hard copies will be available soon.

Fibroid_LF_booklet_v0.4

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

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.

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.

On Saturday, we attended the Croydon Tabernacle Women’s Breakfast to deliver presentations on both breast cancer and fibroids.  This was a lovely event that brought together the women of Croydon Tabernacle to discuss important health issues over a delicious breakfast.

We were given a one hour slot to discuss two important health conditions. We started with breast cancer and gave attendees some background discussing what is cancer, what happens in breast cancer, the different types of breast cancer, stages, diagnosis, treatment, risk factors and current statistics.  Once we had set the scene with a bit of background we then provided attendees with information on what they can do to prevent breast cancer or ensure an early diagnosis. Here we focused on three areas, understanding the signs and symptoms, taking part in breast cancer screening and adopting a healthy lifestyle.  We finished the breast cancer session with a lively Q&A and then moved on to fibroids.

Wonderful programme. Very educational, informative and interesting. I learnt a lot – Bosola

For our fibroids session we covered what are fibroids, the types of fibroids, causes, risk factors, symptoms, diagnosis, treatment, facts and figures and prevention. It was stressed that fibroids are not usually life-threatening but can be very painful and affect fertility. We discussed the importance of understanding the risk factors and symptoms and that if they have symptoms they should visit their doctor. Information was also given on the lifestyle changes that women can make to reduce their risk of developing fibroids – being more active and eating a healthy diet.  Furthermore we noted that fibroids are more common in black women and when black women develop fibroids they tend to be more aggressive, bigger, multiple and develop at a younger age than their white counterparts.

We finished off our presentation by stressing that if women are diagnosed with fibroids they should ensure they have enough information to make an informed decision about how they’d like to manage and treat their fibroids. Women were advised to speak to a gynaecologist who specialises in fibroids to get the best possible advice.

After our session, Pastor Yinka Ayeni gave an excellent, inspiring presentation on self-esteem.

We thoroughly enjoyed this event and would like to thank Croydon Tabernacle for inviting us to attend and for their very warm welcome.

March is Ovarian Cancer Awareness Month in the UK giving us the perfect opportunity to focus some attention on a disease that gets very little attention. In this week’s blog we would like to share the key things that you need to know about ovarian cancer.

Ovarian Cancer is the 5^th most common cancer in the UK with 7,000 new cases diagnosed each year.  Unfortunately it is the biggest gynaecological killer with just under 4,300 women dying from ovarian cancer each year. Survival rates are pretty poor with only 43% of women surviving  beyond 5 years of their diagnosis compared to 85% of breast cancer patients.  There are many reasons why survival rates are so much lower than breast cancer.  It is a complex cancer which is extremely hard to diagnosis because the symptoms are vague and non-specific with over 50% of patients in the UK being diagnosed at a late stage making treatment challenging.

We can improve these bleak statistics by empowering women with the information that they need to take quick action. Increased awareness leads to early diagnosis and early diagnosis saves lives; over 90% of women diagnosed early will survive beyond 5 years compared to only 4-19% diagnosed at a late stage.

Being aware of the symptoms and acting quickly if you think you have them is thus very important.

There are four main symptoms of ovarian cancer and they are
· Persistent pelvic/tummy pain
· Persistent bloating
· Difficulty eating
· Needing to urinate more frequently

If you have any of these symptoms for more than 12 days per month, then visit your GP. It’s a good idea to make a diary of your symptoms in the days and weeks leading up to your appointment so you can have a really good discussion with your GP. The charity Ovarian Cancer Action provides an easy to use symptoms diary. Download this, complete it and take it with you to your appointment.

It’s also important to be aware of what increases your risk of developing ovarian cancer.  The two main factors that increase a person’s risk of developing ovarian cancer are: age and family history.

Age: As we get older our risk of developing ovarian cancer increases. The majority of ovarian cancers (80%) occur in women who are aged 50 and over. If you are in this age group it’s important that you are aware of the symptoms and visit your doctor promptly if you have any concerns.

Family History/Genetics:  10-20% of ovarian cancers are hereditary. If you have two or more family members who have been affected by breast and/or ovarian cancer then you might be at a higher risk of developing ovarian cancer.

If you have a family history of ovarian cancer, visit your doctor to discuss your risk and for more information about hereditary cancer please read our recent blog post.

In October, we launched our Fibroids Ask the Expert, a resource that aims to provide anyone with a question or concern about fibroids with accurate reliable information from an expert in the field. Since its launch, we have received a number of really interesting questions which our experts have been delighted to answer. We thought it would be useful to share some of the questions and the answers with you.  So, this week’s blog is a fibroids Q&A.

Question: “How much are fibroids are likely to shrink after menopause?”

Answer:  “Fibroids may shrink after menopause, but not always.  There have been reports of fibroids shrinking by 50% after menopause and that symptoms improve or disappear completely after menopause.  This isn’t an instant process though and our understanding is that if shrinkage occurs it is usually gradual.”

Question: “My sister was diagnosed with fibroids one being 11cm, is that large?”

Answer: “A fibroid of 11cm is on the large side. Fibroids can vary in size from as small as a coin (about 2cm) to as large as a watermelon (about 19cm).”

Question: “Would Doctors consider the use of proteolytic enzymes as a part of the fibroid shrinking protocol?”

Answer:  “Proteolytic enzymes have the potential to “shrink” fibroids, however, to answer your question, a doctor’s protocol is relative to his/her academic training.  If the physician has been trained in biomedical sciences, he/she are less likely to promote this approach, unless perhaps to assist in decreasing the fibroid size prior to surgical intervention.  Nonetheless, there have been no major studies conducted that support a significant impact between proteolytic enzymes and fibroid shrinkage.  This is just another reason medical doctors may be less likely to support this protocol.  Naturopathic or homoeopathic doctors would be more inclined to consider proteolytic enzymes in addition to other forms of treatment to address fibroids, however, this decision needs to be made in consultation with your selected physician.”

Those are just a selection of some of the questions we have received. If you have a question about fibroids, no matter what, please do submit it  here or email us

We get a lot of questions from women about what they can do to prevent fibroids. This week’s blog post follows our recent post on exercise and fibroids prevention. Today, we’ll look at diet.

Fibroids are non-cancerous tumours that develop in or around a woman’s womb. They can cause a number of symptoms including pelvic (tummy) pain, infertility, heavy and/or painful periods, back pain, anaemia, constipation, frequent urination and pain during sexual intercourse.

The exact cause of fibroids is unknown but research does suggest that they are caused by a combination of genetic, lifestyle and hormonal factors.  Those most at risk of developing fibroids are black women, those who are overweight, women of childbearing age (particularly women who are 25-45 years old), those with a family history and women who haven’t given birth.

Diet and Risk Reduction

When trying to understand what we can do to reduce our risk of developing fibroids diet is an interesting and important factor.  As obesity is a major risk factor then logically if we adopt a healthy lifestyle and lose weight then we can reduce our risk of developing this condition. But, are there particular foods that contribute to fibroids development and are there foods that are protective? Let’s take a look at what the research tells us about this.

Red Meat 

When it comes to foods that increase a woman’s risk of developing fibroids, research suggests that red meat plays a major role. One research study has shown that frequent consumption of beef and other red meat increases a woman’s risk of developing fibroids by 70%. This finding is similar to a study conducted in India which found that women who consume red meat are three times more likely to develop fibroids compared to vegetarian women or women who are mostly fish eaters.  This is in stark contrast to a recent study that found no association between meat consumption and fibroids, although in this study researchers looked at all meat and didn’t look specifically at red meat.

Fruit and Vegetables 

The Black Women’s Health Study conducted in the US explored the impact of fruits and vegetables on a woman’s risk of developing fibroids. In this study, 22,583 black women were monitored from 1997 to 2009 and their food intake monitored.

This study found that overall fruit and vegetable intake was associated with a reduction in risk and the strongest reduction in risk was associated with a high intake of citrus fruit.  Additionally, they found that vitamin A from animal products (liver and dairy) was linked to a reduction in risk too.

These findings were similar to that of a small Chinese study which explored the association of fibroids with diet, physical activity and stress.   This study took place between 2009 and 2011 and researchers found that fruits and vegetables significantly reduced risk of developing fibroids with women consuming the most fruits and vegetables (eating fruit and vegetables more than three days a week) being 60% less likely to develop fibroids.

Finally, a study conducted in 2009 found that a high intake of green vegetables reduced the risk of developing fibroids by 50%  and fruit consumption reduced risk by 20%.

Vitamin D 

In 2013, one of the first studies looking at whether vitamin D is linked to fibroids was conducted and this study found that women with sufficient levels of vitamin D were 32% less likely to develop fibroids than women who are vitamin D deficient. Furthermore, another study published in 2013 found that women with fibroids had significantly lower levels of vitamin D compared to women not affected.  These studies suggest that vitamin D is protective.

Conclusions

It is clear that diet is very important in the development of fibroids. By adopting a healthy diet we can reduce our risk and women should pay attention to their fruit and vegetable consumption, reducing their red meat intake and making sure they have enough vitamin D.

It’s important to note that surveys conducted in the US have found that African Americans consume fewer fruits and vegetables than their white counterparts, it is important that we change our lifestyles and work on increasing our fruit and vegetable intake, our health depends on it.

Fibroids are benign tumours that develop from the smooth muscle cells of the womb. They are the most common tumour amongst women with an estimated 30 – 40% of women between the ages of 25-45 expected to develop them.

Research has shown that fibroids are more common in black women with an estimated 55-80% of black women affected. In addition, black women are known to develop fibroids at a younger age, are more likely to develop larger and multiple fibroids, and tend to develop more severe symptoms.  The reason for this is unknown but it is thought to be a combination of genetic, environmental and lifestyle factors.

Through our interactions with black women, we have anecdotally found that whilst fibroids are very common there seems to be a lack of information and support for women who are affected.  To explore this issue further we conducted a survey that aimed to explore the needs of women with fibroids, determine if there is a need to develop information and support and if so,  the survey aimed to inform our development of a fibroids information and support programme.

The survey explored four areas:

• The level of knowledge of fibroids prior to diagnosis
• Treatment and diagnosis
• The effect of fibroids and its treatment on quality of life
• The availability of support and information

The key findings from  our survey were:

Awareness of fibroids prior to diagnosis

• There was a general low level of awareness of fibroids amongst participants prior to their diagnosis
• There was a good level of awareness of some 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

Pathway to Diagnosis

• The majority of participants delayed seeing their GP for six months or more after first noticing symptoms
• After visiting their GP, most women received a confirmed diagnosis within 4 weeks but over a quarter stated it took 12 months or more to receive a confirmed diagnosis

Treatment

• Despite 79% of participants having a discussion with their GP about treatment, 63% stated they didn’t feel they had enough information to make an informed decision about their treatment
• The majority of participants (42%) had surgery to treat their fibroids
• A quarter of respondents were very happy with their follow-up and aftercare whilst 33% stated that they were not at all satisfied.

The Effect of Fibroids and its Treatment on Quality of Life

• Participants reported that fibroids and its treatment significantly affected their quality of life, affecting them not just physically, but emotionally
• Many participants did not feel they had enough support  to assist them in managing or overcoming the  emotional, physical  and medical impact of fibroids

The Availability of Information and Support

• The biggest gaps in the availability of support were in information and peer support with a small gap in emotional support

Conclusions from the Survey and Next Steps

The survey suggests that a significant number of women with fibroids do not have access to the support and information that they require. The Lake Foundation will focus its efforts on addressing the gaps in the availability of information and support by developing a relevant support system for women, particularly black women, with fibroids.

We have started this process with the launch of our ‘Fibroids Ask the Expert’ in October. This resource provides women with the opportunity to obtain accurate reliable information from experts in the field. In 2015 we will begin to develop a range of publications and explore a support programme for women with fibroids.

What is Lupus?

Lupus is a chronic (it lasts a long time) disease where the body’s immune system doesn’t function properly and begins to attack healthy cells, tissues and organs.

There are four types of lupus. The most common type of lupus is systemic lupus erythematosus (SLE); it can affect many parts of the body such as the heart, kidney, brain and lungs. The second type of lupus is called discoid lupus erythematosus (DLE) and this affects the skin causing rashes and a change in the colour of the skin. Drug-induced lupus is caused by certain types of medication (for example hydralazine and procainamide which are used to treat heart conditions). It tends to be a mild form of lupus and goes away when the medication is stopped. Finally, neonatal lupus is a very rare type of lupus that affects newborn babies.

It is not contagious, the severity of the disease varies from person to person – it can be mild or severe – and today, patients rarely die from lupus as an improved understanding of the disease and advances in healthcare has meant that patients can successfully manage their condition.

What  Are the Causes?

The exact cause is unknown but it is thought to occur due to a combination of genetic and environmental factors. There are certain triggers that cause someone’s immune system to become activated inappropriately and attack the body. These triggers include infections, drugs, sunlight and hormonal changes. These triggers as well as a genetic predisposition are thought to lead to lupus.

Researchers have found that there are a number of different genes that together dictate whether a person will develop lupus, what type of lupus they will develop and how severe it is.

What are the Symptoms?

Because lupus can affect a number of different organs and tissues, it can cause a variety of symptoms. The most common symptoms are:

• Joint pain
• Swelling of the joints
• Muscle pain
• Fever
• Rashes, mostly on the face
• Chest pain
• Hair loss
• Pale or purple fingers or toes
• Sensitivity to the sun
• Swelling in legs or around eyes
• Mouth ulcers
• Swollen glands
• Fatigue

Less common symptoms include anaemia, headaches, dizzy spells, depression, confusion and seizures.

The symptoms and the severity of symptoms vary between people. Some sufferers will have episodes where they experience symptoms followed by periods where they have no symptoms whilst others will have symptoms all the time.

Diagnosis and Treatment

Diagnosing lupus is very challenging because recognising the symptoms can be difficult. This is because the symptoms can seem quite vague, are similar to those of a number of other conditions and they may come and go; this makes it hard to pin down what may be causing the symptoms. Furthermore, there is no specific test for lupus and this all means that it can take years for a patient to receive a confirmed diagnosis.

To make a diagnosis doctors have to carry out several tests and they’ll also have to look at the person’s medical history. The American College of Rheumatology has developed the ‘Eleven Criteria of Lupus’ to help doctors diagnose lupus. A person must have four or more of these criteria for a diagnosis of lupus to be made.

Lupus is incurable so when it comes to its treatment patients are typically given medication to help manage their symptoms and are also given advice on lifestyle changes such as avoiding triggers.

Who is at Risk?

Lupus is a fairly rare disease and in the UK it affects just 5 in 10,000 people. It is more common in women with 90% of suffers being women and most of these women are aged between 15 and 44.

Black women and Hispanic women are at a higher risk of developing lupus as are people who have family members with lupus, have taken certain medications and have been affected by specific infections such as Epstein-Barr virus and cytomegalovirus (CMV).

This means that the key risk factors for lupus are:
1. Age
2. Gender
3. Ethnicity
4. Family history
5. Taking certain medications
6. Certain infections

Black Women

Black women are three to four times more likely to develop lupus than their white counterparts and results from the Lupus in Minorities study has shown that black women develop this condition at a younger age, experience more severe symptoms and overall develop more complications. When looking closely at these complications, black women with lupus tend to develop more neurological complications (such as seizures and strokes) and are more likely to develop lupus-related kidney disease.

Researchers are trying to understand why it is more common in black women and why it is more severe. It is thought to be due to a combination of genetic and environmental differences.

The Black Women’s Health Study identified four specific genetic differences that are associated with a higher risk and these were seen in black women with lupus.

As work continues in this area we can begin to gain a better understanding of why lupus is more common in black women and hopefully this will provide information that can help in the development of effective treatments.

For more information about lupus please visit Lupus UK’s website and if you are concerned about any symptoms you may have, visit your GP.