After speaking to our valued community, we have a new strategic objective – make blood cancer a well-known type of cancer, equal to the likes of breast, lung or prostate cancer.
We know this work is vital in ensuring people with blood cancer have the same access to information and support as people affected by other types of cancers. Not to mention, the more we talk about blood cancer as a bigger category the more likely we are to raise awareness of symptoms, fund research and get blood cancer the political focus it deserves. All of which will help us save lives and beat blood cancer for good.
Last week we kicked things off by opening up the discussion at an ambassador coffee morning, but we want to ensure everyone affected by blood cancer has the chance to input! With this in mind, we’d love to know what barriers you think are stopping blood cancer becoming more well-known?
Please comment any thoughts you have below, so we can make sure we’re tackling what’s most important to our community
When I was told I had lymphoma I had no idea it was a type of cancer and certainly specifically not a type of blood cancer. I remember the consultant saying you do understand that this is a type of cancer! I think because I took the news so calmly initially.
I was called by the haematology department in the days before my diagnosis to go in for bloods - had I been a little more clued up I might have made the connection. I wasn’t and I didn’t . Didn’t even know what the haematology Department did I assume they just wanted to do a blood test !
I feel there are so many names for blood cancers but non of them end in cancer, so often the links are not made.
I have lymphoma. My sister had breast cancer. In reality my condition is incurable my sister is cured. But friends and family would view her condition as far worse than mine as the c word does not appear in my condition.
I remember some colleagues when I first told them about my diagnosis-“ ah that’s good you don’t actually have cancer then “ yes ! I do it’s incurable!!
I feel that Blood cancers need to include cancer in the title,much like every other cancer for anyone to take them seriously eg prostate cancer ,lung cancer ,breast cancer ! Difficult I know when there are so many different types.
@BloodCancerUK I am glad you are raising this issue. Someone said to me recently “Oh, I didn’t even realise you could get cancer in the blood!” As others have said most people think of cancer as a ‘lump’ of some sort or something that can be removed by surgery, shrunk in some way and then you might have chemotherapy to prevent its return. However blood cancer is so different, as everyone on this forum knows. It can involve coming to terms with watch and wait or life long medication with no cure. When other cancers are treated people are aware that the chemotherapy can affect the immune system for a while but they don’t realise that with a blood cancer, the person’s immunity is affected ALL the time. I feel blood cancer sufferers have been ‘hit’ much more unfairly by the Covid situation because they live all the time with the extra risk of infection. I spoke to a retired nurse the other day and she knew very little about blood cancer which surprised me. Warm wishes. Willow X
Such a brilliant topic to raise & I completely agree with what @Jules & @Willow have both picked up on. Blood cancer seem to be more incurable & sometimes not even instantly treatable (watch & wait) which can be really stressful to hear initially I felt like omg your going to actively let my cancer just live in my body. When your immune is not good & your body is basically attacking itself anyway it’s harder still to think the cancer is just being left to it’s own devices to continue invading your body. People seem to ask what type of blood cancer do you have which I can never understand because if you said I have breast or lung cancer nobody would then say what type. Also as @Willow says even medical people seem to know little about blood cancers especially MPNs
Speaking personally I think the reasons for it being problematic to diagnose are that the symptoms could be many other things and most people are not familiar with the symptoms of blood cancer. Plus not everyone gets every symptom, I didn’t which meant that mine went to the most extreme form of diagnosis resulting in a vertebral fracture. Also many doctors themselves are not familiar with the symptoms of blood cancer and have never seen a case. I think my GP suspected, but the hospital wanted to pass it off as a bad back and force me to walk regardless of the consequences.
Like @Jules, but with leukemia, I had no idea when diagnosed that it was a form of cancer. Not only did I not know, but a highly qualified dermatologist who I asked for a signature to get exemption from prescription charges on grounds of cancer refused, saying ,‘I know nothing about that’. Of course, now I think of it he probably just meant that he didn’t want to get involved without seeing my notes, but I ”did* wonder at the time,
As others have said; when I was diagnosed with Acute Myeloid Leukaemia in July 2021 I had no idea it was cancer, even though I was whisked into a specialist cancer hospital for chemotherapy I still referred to having leukaemia. It wasn’t until I had a letter for my first outpatient appointment which said to attend the oncology department did it finally dawn on me that I had cancer. I’m not sure that all my family and friends realise even now, although I have bought Blood Cancer UK Christmas cards which may make them realise!!
I agree with all the very good points made above. Another barrier to blood cancer becoming well known is that our GPs and practice nurses etc are not mentioning it to us.
At some point during our lives, we inevitably have a blood test or two, to check our health for various things. It takes a couple of minutes to get the equipment and to take a sample, and the nurse/doctor invariably chats. They could use this time more effectively to say, ‘It’s now our policy when taking a blood sample to raise awareness of blood cancer symptoms, so that people can spot signs early to get effective treatment. The symptoms of blood cancer are x,y and z. Here’s a Spot Blood Cancer card to put on your fridge. But dont worry, just because we’re telling you about it doesn’t mean we think you have it.’
Doing this would boost awareness hugely. Dentists do this now with oral cancers. It should be something that’s automatically said at routine blood tests (but perhaps not in the haematology/oncology clinic!)
My opinion is we make it too complicated for non-sufferers amongst the general public. People understand, breast, lung, bowel, liver,and prostate etc cancers as a general terminology. If the sufferer described it as stage 4, type 2, carcinoma etc etc it becomes too complicated. Even now I meet fellow blood cancer sufferers with a diagnose I have never even heard of before!
I certainly celebrated the day this charity rebranded itself simply Blood Cancer UK.
Today is the 10th anniversary of my ALL diagnosis, whereupon I was immediately admitted to St Bartholomew’s Hospital (to whom I unquestionably owe my life) .
On diagnosis I had no idea Leukaemia was blood cancer, being only aware that back in the 70s the children who had lost their hair and lived in a plastic bubble had this disease. When I first visited my GP with symptoms I am not sure he was any more clued up than me over this illness.
Many fellow survivors I have met on the journey tell similar stories of their initial consultations with their GP’s.
If you want my opinion it is the GP’s surgeries which should be targeted with a campaign to raise their awareness, as that is most likely the place where our journey begins and the sooner it begins the better the outcome.
I think I knew subconsciously that a leukemia was a cancer. When I looked it up a few days later it was like a second diagnosis seeing the phrase blood cancer. I agree we need to raise awareness. I have some ambivalence about talking about my cancer. At times I feel the need so people understand some of the things I find difficult. My close family obviously know and it does worry them presumably because of this vagueness about the disease so in some cases I avoid mentioning it to them because it makes them feel uneasy. Quite a few things about my diagnosis would have been good to know as a FAQ list certainly for me and possibly for them. For example, I understood my immunity might be compromised so I asked what might improve it - and was told ‘avoid anything that claims to improve your immunity’. Eventually I was told this was because lots of products that have this claim increase the number of white blood cells and I already have too many. A few more facts about the disease at the outset, possibly side effects over time, with perspective of typical treatments and case studies calmly listed in a way that can be shared with loved ones and say employers might be useful.
I think people dont think of blood cancer as a proper cancer because we dont really have visible signs we have cancer. I know I have had conversations about blood cancer and been told but its not really cancer, it is about educating people that its called cancer because it is. I had essential thrombocemia but have now myleofibrosis, had an enlarged spleen and that is how I found out I had myleofibrosis after a bone marrow biopsy. So lets get educating.
Oh @nelletap I did laugh when I read 'I understood my immunity might be compromised so I asked what might improve it - and was told ‘avoid anything that claims to improve your immunity’. So, so true.
Look after yourself
Even when you tell people it’s cancer when someone else has a “recognisable” cancer profile of diagnosis and treatment yours slips away! I’ve been surrounded by people who have had that usual and understood cancer profile whilst I’ve been trying to come to terms with mine and a watch and wait scenario and the empathy and understanding is so different. I wouldn’t have believed it if I hadn’t witnessed it. Covid also has removed us from society too which doesn’t help at all and I have gone through treatment invisibly so no one, apart from family, has witnessed it, to increase the understanding. Even following the treatment I won’t be cured and I will still need to be aware of Covid and be at high risk.
Yes. In a group like this it is nice to share and know some of what we say resonates. One of the hurdles for us patients is understanding implications. Another penny dropping realisation for me was that because I have more white blood cells the corollory is fewer red to take oxygen round my body.
Hi@nelletap @Erica,thank you for that information about the immune system and avoiding "anything "to support it. That is really useful to know.I armed myself with a bottle of the very thing to support my immune system so think its now not a good idea.
I think @Bannanacake it might be worth just checking it out with someone medical, but I was told something similar, but that was many years ago.
Thanks @Erica I will give it a miss and I love the "someone medical"made me as you say "chuckle"but I will mention it.My husband had a routine FBC and his WC count and Neutrophils are over the normal range so will get a recheck in about 8 weeks. I am glad I didnt start dosing him up oops.Think its the after effects of his fracture last Dec plus covid in July ,hope its just that.
I so agree with all you say. When I received the diagnosis the Haemotologist said JAK2POSITIVE ET was not a blood cancer. She gave me a book and the chapter on the above clearly said it was a cancer. Not sure that all GP’s realise it either.