The fake cure scandal

Recently there have been a lot of stories in the news about fake cancer cures. This includes a letter in a national newspaper expressing understandable annoyance about cancer patients choosing fake cures over science.

I believe in science. I firmly believe that there is no big pharma conspiracy to conceal the cures for cancer. To claim otherwise is highly offensive to the incredible people working in cancer research. I’m following conventional treatments for my cancer and listening to my oncologist. However, I don’t blame the patients that choose the deadly path of alternative treatments. They are vulnerable, terrified and clinging to hope wherever they can find it. Tragically their choice will probably kill them, but they have that right. They are potentially being pressured by terrified family and friends who have done “research” out of love and hope of helping. Knowledge is power and patients need much more power to help them make better choices.

Instead of blaming the patients who make the wrong choice I blame three groups for their tragic fates.

Firstly I blame the evil, cruel and manipulative beings (I can’t call them people) that promote fake cancer cures for profit or personal gain. They are deliberately exploiting incredibly vulnerable people and their families. They disgust me. I think they should be thrown in prison for as long as possible. Nobody should ever be allowed to profit from harming cancer patients. If you tackle the liars then patients and their families will be able to find genuine information far more easily.

Secondly I blame the media and social media companies. I’ve lost count of the number of irresponsible articles I’ve seen in major newspapers about cancer. Especially claims of miracle cures and treatments that are usually based on very early research studies. These articles might seem harmless but can promote cancer cure myths and encourage people to make radical and often unnecessary lifestyle changes. They can also generate false hope leading to broken hearts, which leaves people vulnerable to the fraudsters. There needs to be guidelines for the media on responsibly reporting about cancer treatments.

Similarly social media companies need to get serious about dealing with people promoting fake cancer cures. Twitter for example is littered with fake cures ranging from red liquorice to green tea. However, there is no specific category to report these accounts under. There needs to be a way of quickly reporting accounts promoting fake cancer cures that results in their immediate suspension.

I would also like to see online companies being forced to deliberately guide people towards reputable sources of information. Surely having Google say “you appear to be looking for information on cancer, we advise Cancer Research UK as a good source” is possible.

Finally instead of blaming the patients who make the wrong decisions I partly blame the NHS and major cancer charities. The charlatans and fraudsters are filling a gap that has been left wide open for them. The charities could lobby for change in the media and to make social media tackle the liars. The NHS and charities could be promoting knowledge about cancer treatments and facts about cancer. Campaigns on heart attacks and strokes have made a big impact – imagine that amount of effort going into a campaign about the facts of cancer treatments. Vinnie Jones shouting that chemo fights cancer would be awesome. If you haven’t seen it check out the CPR video he did for charity. You’ll never forget how to do CPR!

Charities also need to think about what they put online and how accessible it is. Many patients and their families will search social media for cancer cures and treatments. Doing so is perfectly natural. Love it or hate it, social media is a massive part of everyday life. However, they are very unlikely to find scientific answers that they can understand. Reputable sources of information are often highly technical – sometimes out of necessity. Unfortunately that means that simple sounding “cures” with pretty pictures will look very attractive compared to complicated charts and big words.

Ignorance is always looking for room in this world. The NHS and charities have the influence and resources to crowd out the liars with facts and science. I would love to see them do so. Instead of just publishing information on their sites, it would be fantastic to see charities and the NHS directly challenging the liars online.

There are always going to be people that won’t believe the truth if it hits them in the face. However, I have faith that most people would support science if they were protected from fiction a bit better. If just one person can be saved it has to be worth it. I love the quote “whoever saves one life, saves the world entire”.

While I wait and hope for that world, I won’t judge the victims of fraudsters. They are vulnerable crime victims. There is lots of information out there to try and stop people from being conned out of money. Am I completely unreasonable to want more action to try and stop people from being conned out of life?

The ambrosia myth

Myth 4 – the ambrosia cure

In ancient Greece people used to believe that consuming ambrosia could make you immortal. It was the food and drink of the gods. Since being diagnosed with secondary breast cancer I’ve realised a lot of diet advice is stuck on the idea of a magical food or drink item existing.

If you search online for cancer cures, I can guarantee you’ll find details of that one magical item that once consumed will make you immortal or at least cure your cancer. In recent weeks I have found recommendations for:

  • Red liquorice
  • Tumeric tea
  • Green tea
  • Tea of pretty much any variety
  • Plants (including roses – I’m hoping without thorns!)
  • Olive oil
  • Carrots

I believe that the NHS is always looking for the cheapest option out there. My treatments are not cheap. If green tea cured cancer I’m fairly confident the NHS would swap my £5000 a month of treatments for £20 a month on tea. I understand that being British I’m meant to believe that tea is the cure for everything, but it will NOT cure cancer. I wish it was that simple.

Some of the above food and drink tastes great, but I have found no scientific evidence that it can cure cancer. Roses in my opinion are best kept in the garden looking beautiful.

Rather than finding the modern ambrosia to prevent or cure cancer I would remind everyone to check their medication and see if there are any food or drink items they should avoid. For me grapefruit is most definitely off the menu as it can stop 4 of my drugs from working. There is a useful scientific overview at:

Cancer Research UK overview of foods to avoid

It is true that eating healthily can reduce your risks of some cancers. Eating healthily can also help with some side effects of treatments. I don’t deny that. But I also don’t believe there is a magical ambrosia cure out there.

So if there isn’t a magical one item cure, what about the so called anti-cancer diet plans out there?

Myth 5 – the magical diet cure

I’m not a scientist but I do trust scientists. Therefore I will always try and follow their advice. As noted above eating healthily can reduce your risk of developing some cancers. So can reducing your consumption of alcohol. However, many cancers are sadly unavoidable 😢. Cancer Research UK state that 1 in 20 cancers COULD be prevented by a healthier diet. That’s a lot of cancer that isn’t caused by what you eat.

As I’m not a scientist (seriously I still can’t believe I passed GCSE science) I’m just going to link to the guidance from the actual scientists on a couple of the most recommended so called anti-cancer diet plans advertised on social media.

The Keto Diet from the Dana-Farber Cancer Institute

The Keto Diet from the University of Texas MD Anderson Cancer Centre

The alkaline diet from Cancer Research UK

The sugar free diet from Cancer Research UK

These are just a few of the diets regularly recommended on social media as cancer cures. As you can hopefully see from these links, scientists don’t really agree. I trust scientists over myths. Don’t you?

One key lesson I’ve learned is that with cancer you sometimes don’t have much of an appetite. If all you can cope with eating is chocolate cake, then go ahead. You aren’t going to doom yourself with a treat. That’s why I hate fake diet cures. They just cause stress and guilt. Eat and drink what you can.

As always thanks for reading. Any comments or feedback are much appreciated. I’ll be back soon with more myths about cancer to battle against.

The gratitude myth

Myth 3 – stage 4 patients should always be grateful and positive

  • “Don’t be negative”
  • “But ten months is loads of extra time”
  • “You sound bitter”
  • “That sounds angry and aggressive”
  • “You should be grateful for the efforts of researchers and charities”
  • “Be patient”

These are all things I’ve heard since I was diagnosed with secondary breast cancer in November 2017 aged just 33.

I should state upfront that I have massive admiration for cancer researchers. I think the Institute for Cancer Research is particularly awesome. I really do appreciate the scientists who developed Palbociclib. It is keeping me alive. These are great things. Cancer charities (especially the smaller ones) do incredible work.

The reality is though that I’m 34 years old and I am being killed by cancer. I have a disease that on average gives me roughly 3 years before I suffer a horrible death. I love finding people that have lived with stage 4 for 10 years, but that would see me to the grand old age of 43. Wow! I will never have children. Saying that might make me sound negative, but I’m being realistic. I don’t have time to be patient. Without a miracle treatment my remaining life will be best measured in months not years. Of course I’m bitter and angry sometimes, especially on the bad days in the dark hours of the night when bad thoughts love to attack me. I challenge anyone to be 100% positive with a stage 4 diagnosis. On good days I’m happy and love my life but I still know what is coming.

If I challenge a researcher or charity to do more for stage 4, that isn’t me trying to be ungrateful. I’m not criticising everything they have done to help people like me. I am pleading with them to save my life. I dream of a cure but will happily accept chronic. I believe in ambition. 10 months is great, but it is still only 10 months. My friends are planning weddings and babies at the moment. I’m planning my end of life care. Ideally I’d like a bit longer to live and cause chaos. I’m great at causing chaos! When I was born HIV was a mass killer. Now drugs have changed it to a serious but survivable illness for most. Let us have hope and aim for the stars. Please.

I’ve seen several tweets recently from cancer researchers complaining about people demanding more treatments. I really hope they understand it is nothing personal. If it meant I got 10 years I’d beg Putin or Trump for help! I suspect most patients would as well. I really admire what researchers do, I just want more! Yep I was one of those children who wanted their Christmas presents “now” and not on Christmas day. I wanted more presents then 😂. I still do!

In terms of the major charities there has been a LOT written about their lack of funding for stage 4 and bad habit of ignoring us. I make no apologies for demanding better from them.

In terms of access to new and innovative treatments I am really not grateful. The Institute for Cancer Research did a drug access report that showed the delays in getting new and innovative treatments approved. Assuming that they are approved. The system is broken and needs to be reformed. Cancer patients don’t have time to wait for approvals and cost benefits analysis. I’m selfish. If it will save me it is worthwhile. Unless I’m not worthwhile? 😢

Finally there is an ongoing discussion about which hashtags to use to raise awareness of and encourage research into secondary breast cancer. People are trying to decide how positive these hashtags should be. I can see both sides. Anything too negative risks people turning away as they find it too depressing and scary. Anything too positive risks people not realising how many are dying due to secondary breast cancer. I think we need a balance. We need to show that we are living longer and living well, that we are worth the investment. However, the fact is that 30 British people a day are killed by breast cancer. This needs to change. We deserve better. If getting better access to new and innovative treatments involves getting angry, negative, positive, bubbly or even just running for election as an MP then I’m there. I would even do a waltz outside of Buckingham Palace! I will do everything I can to live. I have to. I owe it to myself. I owe it to everyone who loves me. The only thing that outrages me is having to beg for my life. Anyone who only supports us after being begged and shown lots of positive contributions that we are making to society should think very hard about their own morality.

In the meantime I’ll keep showing positive and negative emotions. After all I might have cancer and be #BusyLivingWithMets, but I’m still human. As such I have way too many emotions! Thing is though that emotions remind me I’m alive. Alive sounds pretty good to me!

The age myth

Myth 2 – cancer is for the old

In 2017 I was diagnosed with secondary (aka metastatic or stage 4) breast cancer. I was 33. Since then I’ve literally lost count of the number of times I’ve been told I’m too young to have cancer. Cancer charities go out of their way to highlight young women are very unlikely to get breast cancer. One charity site told teenagers breast lumps are nothing to worry about 🤬. All I’ll say to that is I read a newspaper article today about a girl called Chrissy Turner who was diagnosed at 8 years old 😢💔. She hadn’t even purchased her first bra. I support not causing panic, but definitely oppose misleading people. I have also come across multiple stage 4 patients who had their symptoms ignored because of their age. This myth can literally kill.

People of any age or sex can get cancer. The tragic truth is that cancer is one of the few things in life that does not discriminate. Breast cancer is more common in older women but younger people can still get sick. Breast Cancer Care states approximately 5000 a month are diagnosed with breast cancer. They suggest that people under 40 represent 4 percent of cases. I’m bad at maths but that still sounds like a lot to me. Of course one person with cancer is one too many at any age.

There are some fantastic support networks out there like the Younger Breast Cancer Network, but there is in my opinion still a lot more that could be done to support younger patients.

One of the most traumatic parts of starting treatment was having to have my menopause induced. I’m ER+ so estrogen suppression is a must for me. On the Monday I had spots and was due to start my period that week. One Zoladex injection on the Tuesday and I was suddenly menopausal. I had no support with that for ages. I had 20+ hot flushes a day. I literally had no idea what was happening. Nobody had told me what to expect. When I asked for help, as I thought it was the cancer causing problems, my GP gave me Prozac which made me really ill. I lasted two days before I had to stop taking those drugs. They made my head kill for 8 days. Cancer pain had nothing on that headache 😢 My oncologist sent me for free acupuncture which has worked miracles. I now have hot flushes 2 or 3 times a week. No idea why it worked but it did. I still have stage 4 but at least I don’t feel like I’m boiling to death all day!

My palliative care nurse gave me an advanced directive form to complete. It was funded by Age UK 😭. At 33 that made me feel great – I still haven’t completed it!

My oncology unit has great entertainment for patients while they wait. Jigsaws, Jeremy Kyle and knitting magazines! So exciting (not)! I’d love to see a wider range of magazines or some games consoles! Now that would lower my stress. Being brutally honest I’d also love a couple of treadmills. That’s my idea of fun 💪. I know those things aren’t cheap but a girl can dream! Finally could there be a ban on asking if you are there with your parents? Every time I explain I’m the patient somebody inevitably tells me I’m too young to have cancer 😭.

These might seem like small issues but they add to the stress of dealing with cancer. In these cases just a little bit of extra support or a different form for younger patients would have made a huge difference to me. Thank goodness for social media!

Regardless of the issues, I’m living proof that the idea that breast cancer only impacts older people is a myth. I’m Kit and I’m #BusyLivingWithMets aged 34.

A stage 4 myth

As promised I intend to try and challenge cancer myths in this blog. I am a 34 year old civil servant. I am not a scientist but I do have stage 4 breast cancer and a lot of opinions. For reference I was diagnosed with stage 4 breast cancer straight away aged just 33 in November 2017.

Myth 1 – stage 4 = death bed

In November 2017 I was admitted to hospital with dangerously high levels of calcium in my blood. The next day I was told I had cancer in multiple bones, my lungs and my breasts. Immediately the assumption made by most medical professionals was that I was going to die very quickly. I was pressurised to quit work and start claiming benefits so my last few months could be stress free. People stopped referring to my husband as my husband. He was now “carer”. The first time I met my palliative care nurse she asked me where I wanted to die. My GP prescribed me very high levels of morphine on the basis that I would not be on it long enough to get addicted. The side effects of that morphine will be covered in another blog. A nurse suggested it was cruel to give me a Zoladex injection because I would be dead soon. For reference Zoladex injections truly are cruel 😢. Cancer charities guidance on stage 4 solely talked about end of life care and dying. There was very little hope out there that I’d make 6 months.

Well I’m writing this blog in January 2019. In the last week I have:

  • Been to two football games.
  • Started a blog.
  • Had 2 personal training sessions at the gym.
  • Held a charity raffle, ceilidh and comedy evening to raise money for three cancer charities.
  • Done a 37 hour working week.
  • Been dentist.
  • Been to an animal park and fed some tame deer by hand.
  • Read several books.
  • Finally finished watching season 7 of Game of Thrones.
  • Spent time with my husband.

I still have stage 4 breast cancer. It will kill me on an unknown date. But as the social media hashtag says I’m #BusyLivingWithMets.

I’m not the only one. There are thousands of people who are living with treatable but incurable cancer. I wish I could say how many of us there are but I can’t. We aren’t counted by many healthcare systems including the NHS. They don’t seem capable of counting us. The only thing that is known is that 450 people a day in the UK are killed by cancer.

Don’t write us off just because we have stage 4. We want and deserve access to new and innovative treatments to keep us busy living until the day we are killed by cancer. If you want to see more people like me check out the brilliant @abcdiagnosis on Twitter or my awesome personal trainer Vicky Veness who is on Instagram as @vickyvstrongerthanc. Vicky has stage 4 lung cancer and ran a half marathon last week! They are just 2 examples of the new wave of stage 4 patients who are living. Follow the #BusyLivingWithMets hashtag to find many more.

I hope that after reading this blog you agree that stage 4 does not automatically equal death bed. My hope was boosted this week by @lwhlaura on Twitter. She has made it to ten years with secondary breast cancer. That’s hope right there. Stage 4 needs more of everything and that includes hope and dreams of living rather than dying.

Stay tuned for my attempts to bust more myths about cancer. Feel free to disagree with me. Just be polite about it. I am dying after all!

Kit vs cancer myths

I was diagnosed with secondary breast cancer aged just 33 years old in early November 2017. I was diagnosed straight away at stage 4 which is the stage that kills. It was one of the worst days of my life.

I spoke to the highly trained medical professionals and doctors to see if they could explain why I had cancer. They couldn’t. I was 33. I exercised. I had never smoked.

I immediately started thinking how did I cause this? I cried thinking of boozy nights at university and bacon baps at the football. I’d seen the charity adverts about cancer. They made it clear in my messed up head what was happening. After all cancer is described as preventable and clever people are picked up long before stage 4 according to those ads. People in their 30s are rarely featured. So logically I must have messed up somehow and I accepted and sort of dealt with that guilt.

It wasn’t until I saw a geneticist a few weeks ago who suggested there is a genetic cause for my cancer that things changed! The idea that I possibly wasn’t to blame shocked me. It wasn’t until that point that I realised how guilty I had felt. The idea that a dodgy gene I’d never heard of had killed me actually cheered me up! Tests are ongoing to identify the gene and to see if it could hurt my other family members in the future.

If I could change two things for cancer patients (other than finding better drugs) they would be:

  • Order cancer charities to show a wider range of people having cancer in their adverts. They can give the impression that only children and older people get ill. That is a myth.
  • Teach people not to ask people why they got cancer. A very wise woman pointed out on Twitter the other day that nobody asks what she did to get epilepsy. So why is there so much blame about cancer?
  • There are a massive number of myths out there about how people get cancer, the impact it has and how to cure it. I’m a great believer in science and research. False science and fake cancer cures outrage me. It’s dangerous, irresponsible and it can kill. They also make it a nightmare once you’ve been diagnosed as you try and sort fact from fiction as you search desperately for the answers. So I plan to try and highlight these myths and why scientists have proved them to be wrong. As such this may be a multi-parted blog series as I find new myths to destroy and perceptions to change.

    There are just a couple of caveats I want to flag up:

    1. I am not a scientist. I will always try and source my comments though.
    2. I’m in the UK so will focus on UK institutions, charities and statistics.
    3. I have secondary breast cancer. I’m 34 now. I’m female. My perspective may be different to many other people. No two cancer patients are the same. We all have unique views.

    So over the next few days I plan to start myth busting. Please stay reading! My first 5 myths to obliterate in no particular order will be:

    • Cutting out sugar prevents/cures cancer. This will also cover the myth that certain foods can cure cancer.
    • Cancer patients all lose their hair.
    • Stage 4 = on your death bed.
    • Some cancers are easier than others.
    • Thinking positively can cure cancer.

    Myths like this deserve to be destroyed. For as long as I stay #BusyLivingWithMets that is my mission.

    See you next time!

    Who am I?

    I’m 34 years old. I work full time. I work out with a personal trainer. I have a wonderful husband and lots of great hobbies. Sounds great doesn’t it. The slight flaw in my life is that I was diagnosed in November 2017 with Stage 4 Secondary (aka metastatic) Breast Cancer. In other words the odds are not in my favour that I’ll see my 40th birthday. My cancer will kill me before then.

    These blogs are about key parts of my life 14 months after my diagnosis. Some will be happy. Some will ramble. Some will be sad. Others will be angry. So strap in and prepare to join my rollercoaster ride through cancer. We’re all in it together. At least until the end of the ride. At that point you’ll step off and continue your life. I’ll leave the ride when I’m dead.