Cancer Types – Neuroblastoma

I think most people have heard of Bradley Lowery by now, but just in case you haven’t, he was a young boy who touched the nation’s hearts as a young football fan stricken by a rare childhood cancer. He united the football world with “cancer has no colours” as many tried to create lovely experiences and memories for him during the last few months of his life.

Sadly Bradley passed away on Friday 7^th July 2017 at the age of six. Like so many other people across the UK, I have been touched by Bradley’s cheeky smile and he has inspired me to restart this blog. Today’s post is dedicated to this wonderful boy and his family.

What is Neuroblastoma?

Neuroblastoma is a rare childhood cancer, mostly affecting children under the age of five. In the UK there are around one hundred cases diagnosed per year. It is rarely seen in older children, teenagers or adults.

Neuroblastoma gets its name from the nerve cells it develops in – neuroblasts:

                *neuro = nerves

                *blast = early developed cells

                *oma = tumour

Neuroblastoma usually starts in the abdomen – in the adrenal glands or the nerve tissue found at the back of the abdomen. As with many cancers, it spreads to other parts of the body such as bones, liver and skin via the blood and lymphatic system. This is usually found in half of neuroblastoma sufferers.

Causes of Neuroblastoma:

Unfortunately not much is known about the causes of this cancer type at present, although research is being carried out. Around 1/100 cases will find a family history of this cancer type but this is very rare.

 Symptoms of Neuroblastoma:

Symptoms for this cancer type, like most of them, will depend on which part of the body the cancer has started in. If the cancer has already spread then symptoms may appear in more than one place.

As neuroblastoma usually develops in the abdomen the most common symptom is a lump in the tummy, which can cause the child’s stomach to swell and cause discomfort and pain.

In the occasion that it affects the spinal cord it can cause numbness and loss of movement in the lower body, as well as weakness.

On rare occasions it can appear as a lump in the neck and can cause breathlessness or difficulty swallowing.

Neuroblastoma tumours usually spread to the bones which can cause pain and swelling as well as difficulty walking.

Any of these symptoms should be urgently investigated by a doctor. It is hugely important that any lumps found in children, especially those in the abdomen, are referred to a specialist within 2 days of being presented at A&E or to your GP. If you are concerned by symptoms found in your child, please push your medical professional for an urgent referral.

Diagnosing Neuroblastoma:

As with most cancers, there are a variety of tests which can be used to diagnose the cancer as well as determine its stage. These tests are not normally painful but some may require sedation, especially for young children.

Tests could include:

*Blood tests

*Chest X Ray

*CT, MRI or Bone Scans

*A biopsy or bone marrow biopsy

*Urine tests

*MIBG –this is a particular scan to diagnose neuroblastoma as they absorb a substance called MIBG. The doctor will attached a small amount of radioactive iodine to MIBG and inject it into the bloodstream. The neuroblastoma cells pick up the MIBG and the iodine shows up on the scan.

Treating Neuroblastoma:

As with all cancers, treatment for neuroblastoma is dependent on the stage of the tumour, and the risk group of the patient – i.e. how likely is the cancer to return at a later date.

The most common treatment for this cancer type are:

*Surgery – the surgeon will try to remove the whole tumour, or as much as possible. If the tumour hasn’t spread then surgery may be the only treatment required, providing the surgeon is able to get the whole tumour and clear margins around it.

*Chemotherapy – This can be used to kill the cancer cells. Doctors may use two or three different types of chemo. The main side effects will include tiredness, hair loss, nausea and an increased infection risk. A central line will be inserted for the child to receive the chemo and will be kept in place for the duration of their treatment. We used to call Georgie’s his wiggly when he was little.

*Radiotherapy – Children with advanced neuroblastoma may require targeted radiotherapy, which is similar to the MIBG process I explained above. However, children needing this may require a stem cell transplant as the dose of radioactive iodine may damage the bone marrow.  A stem cell transplant is done by doctors who collect some blood stem cells from the patient before treatment and store them until the child is ready to have them injected back into their body after treatment.

*Immunotherapy - This is a type of drug treatment used to help the immune system kill cancer cells. It’s a biological therapy which is often used if there is a high risk of the child developing neuroblastoma again.

Recurrent neuroblastoma (where the disease had been treated previously but has returned) depends on a number of factors. This can be treated the same way it was treated previously but usually the treatment is much more intense and will include a number of the treatments mentioned above. Clinical trial treatments may also be offered.

Long Term Effects of Neuroblastoma:

Your specialist should talk to you about the possible long term effects of cancer on your child. As treatments improve these effects are lessening but they are still there. The risks include fertility issues, hearing problems, changes in the heart and kidneys, growth problems and the risk of developing a second cancer. Childhood cancer sufferers should be closely monitored as they grow up and should have access to doctors and information regarding these effects.

Research is being conducted into various issues surrounding this cancer type, including causes, diagnosis and improving treatments for it. It is a particularly cruel cancer as it affects young children and a lot of work is being put into trying to find out more about it to improve survival rates.

Obviously, your child being diagnosed with cancer is unimaginable and truly horrific. Should you be concerned then there are people that can help:

The Neuroblastoma Society is run by parents and grandparents of neuroblastoma sufferers and they have a befriending scheme for affected families.

The Children’s Cancer and Leukaemia Group (CCLG) produces booklets for parents and siblings of childhood cancer sufferers which can be incredibly helpful. I have very dear friends that are part of this group and can personally vouch for their dedication and knowledge.

You can also contact the Cancer Research UK information nurses on 0808 800 4040 between 9am and 5pm Monday to Friday. They can offer advice on what support is available. This is a Freephone number.

Regular readers of this blog will know that childhood cancer is something my family has been affected by, and a subject very close to my heart. I send lots of love and good wishes to all sufferers and their families.

xxx

Volunteers Week 2017 - Why You Should Consider Volunteering

"The greatest gift you can give is your time because when you give your time you are giving a portion of your life that you will never get back"

In October 2017  I will be marking seven years as a volunteer for Cancer Research UK. In that time I have been part of some incredible things and have had some of my proudest moments. But the defining part of my life as a volunteer is the amazing people I have been able to meet and get to know. The people I now call my friends. The people I call my volunteer family.

It's no secret to those that know me that volunteering for Cancer Research UK is one of my favourite aspects of my life. I meet incredible people and do incredible things on a weekly basis. I am challenged, I am inspired and I am frequently left in awe of the people I get to meet. I openly admit that if I ever won a significant amount of money I would leave full time employment and volunteer for the charity on a full time basis.

The charity have tens of thousands of volunteers. Most of them are like me; willing to donate large portions of their spare time to the cause we believe in. My spare time is precious, I don't have a lot of it. I genuinely have to believe in something and really want to do it if I'm going to drag myself away from the sofa to do it. Whenever I meet a new volunteer and they ask for tips I always say the same thing "once you've volunteered for one thing, you'll become slightly obsessed and find yourself volunteering more and more" that is true. I started out as just an ambassador. Now I volunteer to help at events like Race for Life, I've spoken at volunteers conferences and various other things.

When I first started volunteering my mum was really worried. I have been surrounded by cancer for almost my whole life. I’ve lost many people. I’ve experienced much sadness and loss at the hands of cancer. She couldn’t understand why I would want to be associated with the subject in such a full on sort of way. At first I couldn’t understand why but gradually I came to realise that my mum was worried that I would develop attachments to people who would eventually pass away and make the hole in my heart caused by all the loss even bigger. The truth is my mum was right about this.

I had known Dawn Green for many many years. There are not enough words to describe how wonderful this lady was. In 2008 Dawn was diagnosed with Pseudomyxoma Peritonei (PMP).

Pseudomyxoma Peritonei is a very rare type of cancer that usually begins in your appendix as a small growth, called a polyp. Or, more rarely, it can start in other parts of the bowel, the ovary or bladder. This polyp eventually spreads through the wall of your appendix and spreads cancerous cells to the lining of the abdominal cavity (the peritoneum). These cancerous cells produce mucus, which collects in the abdomen as a jelly like fluid called mucin.

Dawn was given just three months to live and the cancer was so rare that her doctors didn’t know much about it at all. Whilst fighting the disease Dawn noticed a distinct lack of emotional support for people fighting this form of cancer.

Dawn decided to set up a charity to help others in her situation. Pseudomyxoma Survivor aims to provide emotional support for anyone dealing with this type of cancer and to prevent anyone feeling alone or isolated during their fight against the disease.

Dawn put PMP on the map. She worked tirelessly for those suffering. She raised money, she raised awareness, she helped everyone she could across the world. How she did it I will never know as most of the time she was struggling to survive the illness herself. She had major major operations and each time I held my breath waiting for the news that she hadn’t made it. But she defied the odds time and time again. I got used to this.

Dawn was a funny, kind, crazy, caring, interesting woman. She was a mum with so much fierce love for her two girls and her dog. She was an amazing friend. She was simply one of the best, and most inspirational, people I ever had the honour of meeting. The world is emptier without her. A sadder place. There is definitely a hole without Dawn for many people, myself included. I really hope she is at peace and reunited with her beloved Dad now.

So yes, my mum was right; my heart is at risk of more sadness by being involved with Cancer Research UK. But I really wouldn’t have it any other way. The people I have met are my friends, they provide me with inspiration. They look out for me. They make me laugh. They make me want to do more to help others. They hold a very special place in my heart. For Dawn we will keep on at Cancer and we will carry on helping others just like she did, hopefully with the same humour, passion and kindness she displayed to those that knew and loved her.

If you've ever considered donating some time to a cause then I can hand on heart recommend Cancer Research UK. The charity hugely appreciates their volunteers and go out of their way to make you feel informed, inspired and important. You'll meet people who will hopefully become good friends and you'll come away feeling like you've really made a difference.

There are many ways to volunteer:
Cancer Campaigns Ambassador - We ambassadors are a group of passionate supporters working hard to help CRUK effectively influence politicians, engage the local media in their campaigns and try to help them save lives. Our stories, experiences and passion have become one of CRUK’s most powerful campaigning tools and are vital part of their work.

As an ambassador the activities are varied and interesting:
* Communication with local politicians and parliamentary representatives; flagging up our campaign issues and persuading them to back us and take positive action on our behalf.
* Engaging with our local and regional press; securing coverage for our campaigns and raising awareness in our local area.
* Lobbying for specific cancer related campaigns.
I cannot find words big enough to describe how amazing I find my fellow ambassadors. We have formed a close group and we support, encourage and work together to make a real difference. It is a true honour to count myself as part of this inspiring group of people. If this sounds like something you might be interested in then I can promise you would be welcomed with open arms :)

Volunteering at an event- I  have volunteered at Race for Life a few times and it was brilliant. The atmosphere is always buzzing and the people I meet are infectious in their enthusiasm. There is also Shine, as well as Relay for Life and various other events such as marathons etc... These volunteer roles are perfect if you don't fancy partaking in a sports event but would like to be part of the atmosphere and support those taking part.

Volunteering in a shop- I'm really keen to get my grandad volunteering in one of the CRUK shops as I worry about him getting bored at home now he's retired. I've never met a CRUK shop volunteer who wasn't friendly, helpful and chatty. They are lovely people. This type of role would be perfect if you have a few hours to kill during the working day and would like to get yourself out of the house for a few hours! 

These are just the tip of the iceberg when it comes to the types of volunteering positions available with the charity. For more information you should take a look here: http://www.cancerresearchuk.org/support-us/volunteer/help-at-an-event

Cancer Treatments - Tamoxifen

Hello everyone,

This post is dedicated to Anna, a very lovely and brave lady currently undergoing treatment for breast cancer. Her Instragram posts are among my favourites because they are always so positive, even when she isn't feeling it. I hope you have a lovely Christmas with your famiy, Anna, and I hope 2017 brings you better health and lots of happiness.

What is Tamoxifen?

Tamoxifen is a hormone therapy used to treat breast cancer both before and after the menopause. It can also be used to treat other cancer types but the research I looked into focused on breast cancer, as with this post.

How It Works:

Many types of breast cancer are hormone sensitive and are stimulated by oestrogen and progesterone and Tamoxifen is usually prescribed for women with these types of breast cancer as their cancer cells have oestrogen recepters. The receptor is part of the breast cancer cell and the oestrogen attaches itself to this and stimulates the cell, causing it to divide and grow. Tamoxifen blocks this receptor. It also lowers the risk of the cancer returning after surgery as well as lowers the risk of the cancer developing in the other breast.

Male breast cancer is rare but it can also be treated with Tamoxifen if the same receptors are found.

Treatment with Tamoxifen:

Tamoxifen can either be prescribed as a liquid or tablet and is taken daily.

Common Side Effects:

*Hot Flushes and Sweats – these affect around 45% of women taking Tamoxifen

*Period Changes – If you take Tamoxifen before entering the menopause then you may find your periods become irregular or stop altogether. They suaully restart around six to twelve months after you finish your course of Tamoxifen, unless you are nearing the menopause.

*Fatigue – around 25% of women taking Tamoxifen suffer from tiredness and fatigue.

*Pain in Joints- Around 25% of women taking Tamoxifen suffer from painful joints

*Sickness – Around 20% of women taking Tamoxifen suffer from sickness but this can usually be treated with anti sickness tablets.

TAMOXIFEN IS NOT A CONTRACEPTIVE AND IT IS STILL POSSIBLE TO BECOME PREGNANT WHILST TAKING IT SO PLEASE SEEK ADVICE ON CONTRACEPTION FROM YOUR DOCTOR. TAMOXIFEN MAY HAVE A HARMFUL EFFECT ON A DEVELOPING FOETUS.

Occasional Side Effects:

*Vaginal Discharge or Vaginal Dryness

*Fluid Retention or Weight Gain

*Headaches

*Depression

*Hair Thinning

Rare Side Effects:

*Tumour Flare – If you have cancer that has spread to your bones then you may suffer from increased pain whilst taking Tamoxifen.

*Thrombosis – Your risk of blood clots can be slightly increased whilst taking Tamoxifen.

*Liver Changes – This are usually very mild and your liver will normally go back to nromla after treatment. Liver function tests may be needed.

*Eye Problems – Your eyesight may change but this should be checked out

*A Skin Rash may occur

*Womb Cancer – Your risk of developing womb cancer increases very slightly whilst taking Tamoxifen

Additional Benefits:

A recent study has indicated that breast cancer is less likely to reoccur in women that have taken Tamoxifen for ten years rather then the previously recommended five years. It is estimated that taking the drug for ten years reduces breast cancer deaths by a third for the first ten years and by half after that.

I hope you found this blog post informative. Please visit www.cancerresearchuk.org for more information. I would be very interested to hear from any women that have taken Tamoxifen in the past or are currently taking it so please do get in touch if you have/are!

xxx

Cheer All Through The Year 2017!

Following on from the amazing success of Christmas Cheer 2016, I have decided to create a whole year of cheer for 2017. This is partly inspired by my friends, Luke and Faye, who do amazing fundraising events all year around for The Veronica Claxton Memorial Fund.

So, every month we will fundraise for one or two causes. Sometimes these causes will be linked to a specific campaign or awareness month, and sometimes they will just be because someone has suggested them or they are in the news. We will have fundraising pages open during that month and will aim to raise as much money as possible for those causes. The aim is to raise 5,000GBP by the end of the year for these causes combined and really make a difference to some deserving people in 2017.

As previously mentioned, 2016 has been a crazy year for the World. I know many people are feeling disheartened and worried about what lies ahead for us all. I was inspired to do some fundraising as a way to show people there is still good in the world and that the power does not lie with the people in charge, but it lies with us, the general public. Citizens. If we show kindness and understanding to each other then we can make the world a nicer, safer place for people around us. Little by little.

I firmly believe in volunteering. I was twenty one when I started and it changed my life. It gave me an outlet for my creativity. It developed my compassion and made me realise how fortunate I am. It gave me a circle of friends who share my interests and inspire me on a daily basis. It helps me make a real difference to the world around me.

I realise people have very busy lives and do not always have time to donate, so the idea of this is there is not much time required, I will do the work required! We will have raffles, events etc…. Or sometimes I will simply ask for donations.

If you have a cause you would like to include in this then please let me know, via email (pennyschristofi@gmail.com) or by the contact form on this site. If you have an event planned, or are taking part in an event next year and would like to be part of the team, please also let me know!

More Information to Follow Soon!! 

:) xx

Christmas Cheer 2016

2016 has been a crazy year for the World. I know many people are feeling disheartened and worried about what lies ahead for us all. I was inspired to do some fundraising as a way to show people there is still good in the world and that the power does not lie with the people in charge, but it lies with us, the general public. Citizens. If we show kindness and understanding to each other then we can make the world a nicer, safer place for people around us. Little by little.

I firmly believe in volunteering. I was twenty one when I started and it changed my life. It gave me an outlet for my creativity. It developed my compassion and made me realise how fortunate I am. It gave me a circle of friends who share my interests and inspire me on a daily basis. It helps me make a real difference to the world around me.

I am currently in the middle of my latest voluntary project – Christmas Cheer 2016.

I became an auntie for the first time in February this year and I immeadiately became obsessed with my niece, Mia Ariana. Since she came into my life I have become more aware of the fact that she is blessed to be able to grow up in a safe, loving environment. As a family we are able to provide her with material things as well as love. Many children do not have the same upbringing and I wanted to do something to change this in a small way. In honour of my niece, and to start teaching her from a young age to give back and do something to help others.

I decided to split the money between Cyprus and the UK as these are my home countries. My Stepdad works for the Metropolitan Police and takes part in their annual present appeal so I decided to support this cause. I was given a list of fifteen children, their gender and their age, to buy presents for. I also decided to help Crisis with their annual appeal to help the homeless. We will use some of the money to buy food and supplies to help them this winter. In Cyprus I decided to help the Pancyprian Volunteerism Coordinative Council with their “Adopt a Family” drive. So we will use some of the money to buy food and presents for the underprivileged families in Cyprus.

My friends and family were very supportive and in total we raised an amazing GBP618.34/EUR723.85. This weekend we will be going out to start getting our supplies ready for delivery. I couldn't be more excited. Somehow it makes Christmas more special knowing we have helped lots of other families have a nicer one. I will post photos of our supplies when we have bought them!

Let me know if you will be doing something similar this Christmas!

www.justgiving.com/crowdfunding/christmascheer2016

Neuroendocrine Tumours

Hello :)

This post is dedicated to a fellow Cancer Campaigns Ambassador, Andy Norris. Andy has suffered from this cancer type for eleven years. He is a very passionate campaigner and I hope this post helps him raise awareness of a cancer type not many people are aware of. This type of cancer comes under the category of “rare cancers” and not much information is available on them. However, I will share everything I have learnt about them with you today.

The Neuroendocrine System:

The Neuroendocrine system is a combination of nerve and gland cells and it makes hormones before releasing them into the blood stream. Basically neuro means nerve and endocrine means the cells of the endocrine system. It is also known as the hormone system as the neuroendocrine system is a network of glands and organs producing hormones within our bodies. Hormones are hugely important as they control how our bodies function, including growth, development, reaction to stress and a wide range of other things.

You will find neuroendocrine cells in many organs including the lungs, pancreas, liver, stomach, both bowels and the oesrophagus as well as the appendix. These cells have different functions depending on where they are with the body. For example, neuroendocrine cells found within the lungs release hormones that control the flow of air and blood in the lungs.

Neuroendocrine Tumours:

NETs are very rare tumours and they develop within the cells of the neuroendocrine system. There are different types of these tumours and these depend on what body part is affected. These tumours usually take years to develop and do not cause any obvious symptoms at first. It is not uncommon for sufferers of this cancer type to discover the cancer has already spread to another part of the body by the time they are diagnosed.

There are some types of benign (non cancerous) neuroendocrine tumours, as well as malignant (cancerous) ones. Usually the benign tumours are more slow growing then the malignant ones.

There are other names for this cancer type:

*Gastroenteropancreatic neuroendocrine tumours (GEP NETs) – found in the gut or pancreas

*Pancreatic neuroendocrine tumours (pNETs) – found in the pancreas

*Gastrointestinal neuroendocrine tumours (GI NETs) – found in the bowel, stomach or oesophagus

*Functioning neuroendocrine tumours (F-NETs)

*Non functioning neuroendocrine tumours (NF-NETs)

*Carcinoid tumour

Treatment for this cancer type, as with most cancer types, will be dependent on the type of tumour, the stage and grading and whether it has spread to another body part. Treatment can include surgery, chemotherapy or drug therapy.Some of these tumours can also develop outside the pancreas. For example, gastrinomas have been reported in the medical literature to develop in the ovaries, kidneys, stomach and liver, and not just in the pancreas and small bowel area. NETs that develop in the lung are usually carcinoid tumours.

Causes of neuroendocrine tumours:

Not much is known about the causes of this cancer type at present. However, sufferers of rare family syndromes or gene mutations have a higher risk. These include Multiple endocrine neoplasia type 1 (MEN 1) and Von Hippel-Lindau syndrome (VHL). Research also shows that if one of your parents has suffered from this cancer time then your risk of developing it is slightly increased. However, this cancer is very rare so your risk is still very slight even if you have a higher risk.

I hope this blog is informative, and helps Andy raise awareness. Please contact CRUK if you wish to have further information

xxx

Christmas Fundraising 2016

Hello! 

2016 has been a year of bad news. The media is filled with it and many of my friends and family have had some real hard times this year. I think many people will be happy to see the year go. I want to inject some positivity into 2016 as it comes to an end.

Usually my voluntary work is in memory of the relatives I have lost but this time it is inspired by a very special person.

My niece, Mia Ariana, was born in February this year and has become the apple of my eye. Mia is able to grow up in a safe and loving environment, filled with people who will protect and encourage her. Many children do not get to grow up in the same way. 

This Christmas we will be collecting funds to buy presents and supplies to help children and young people who otherwise won't enjoy the festive period like my niece will.

Half the money raised will be used to buy food and presents for families in Cyprus that will not be able to afford them otherwise. They will be taken to food banks to be distributed to those that need it.

The other half of the money will be used to buy supplies to donate to Crisis and The Metropolitan Police Christmas Present Appeal. Crisis will distribute their supplies to homeless people and The police will distribute presents to children who may not otherwise get them. The supplies for Crisis will include warm gloves, hats and scarves as well as snack bars, toiletries and other things to help the homeless. My stepdad, David, works for the Met and will be one of the officers delivering the presents.

I will be spending time with Mia in the UK between 2-5th December and we will go and buy our supplies and donate them that weekend. 

My good friends, Luke and Faye, will also be collecting to donate presents to children in the UK spending Christmas in hospital - https://www.justgiving.com/teams/target250k

Please donate anything you can spare, it's very much appreciate! We will keep you updated with our progress!

https://www.justgiving.com/crowdfunding/christmascheer2016 

Lots of love xxx