I agree. Check it applies to your condition with someone knowledgeable. I also find chemists/pharmacists are really good at understanding interactions from various drugs and that could be a useful port of call. They also can be very helpful in suggesting times of day to take medications or other things such as with water / before food/ etc etc. It isn’t always possible for a lay person to understand from the general advice in drug leaflets which are the critical or more important issues.
In some ways, we are our own worst enemies in this context. It seems to be quite common on MPN forums at least, for people to say “please confirm that my MPN is not a form of cancer”. The WHO classification is completely unambiguous on this, but the message still does not seem to have penetrated the darker recesses of General Practice, or, amazingly, some haematology departments. (Stressing that this does NOT apply to the brilliant Haematology folks in Aberdeen).
We are also much too prone to downplay our cancer, for good and bad reasons. Let’s be up front about things; MPNs are cancers and can have very severe effects, though mercifully, they can also be well controlled as in my own case. For the other commoner and sadly often more severe forms of Leukaemia etc., there is no reason not to be frank. If, by being open about things, some people shun us, so be it; they are probably not persons we would want as friends anyway.
When I was told that I had Myeloma I had no idea that it was a blood cancer. Even when the doctor said the words blood cancer it didn’t register with me that I had cancer. The penny only dropped properly when I’d had 3 MRI’s, a CT scan and a PET scan and was told I was going for radiotherapy the next day…
An important place to start is to define our target audiences for raising awareness. Two of the highest priority ones seem to me to be GPs and the over 50s.
GPs have a critical role to play if we are to pick up more cases of blood cancer at an early stage. If my experience is anything to go by, they may not have all the support and information they need. So I think materials, videos and other resources to help them think about blood cancer and spot the warning signs is a good place to start.
With the incidence of the disease starting to grow for people from the age of 50, I think we need to push for annual health checks/ MOTs for everyone starting from their fiftieth birthday. GPs will need to be heavily involved in this and may argue that it’s too expensive to do and they haven’t got the time.
I think we need to build a business case to counter this that shows that the investment of time up front is more than made up for by the avoidance of the heavy cost of putting patients through chemo some years later when the disease has reached stages 3 or 4. In time, this will deliver massive efficiency savings in haematology costs.
Backing this up, we need each person who has an MOT to be given briefing materials and links to online resources that explains succinctly what blood cancer is, how it differs from other cancers, what are the main types and the symptoms to look out for. This must be kept simple and avoid any of the complicated language of blood cancer that can be so confusing.
In delivering these actions, we will build the critical level of awareness in two of the most important groups for beating blood cancer.
Great question @Alice_BloodCancerUK . I think there are a number of barriers:
Firstly, the symptoms are (seem) so ‘disconnected’ from the diagnosis, whereas a lump on the breast, for example, is potentially a bit of a clue.
Secondly, as mentioned above, there is no screening programme. People are aware of screening programmes for breast, cervical and bowel cancer at the very least because you drive past the big mobile screening centres in supermarket carparks, you get invited for tests and some test packs even appear through the post when you are of a certain age.
Thirdly, with some types of blood cancer (especially Myeloma) you don’t get that marvellous ‘Big All Clear’ situation that so many people ask me if I’ve had yet…so maybe its a question of ‘lalala’ and no one wants to think about treatable but incurable conditions.
Finally, must it be relatively rare? Sadly I think this might be changing but certainly my experienced and close-to retirement GP had never had a patient with Myeloma before me. It was only through her best-guess of sending me for a Lupus test that I was diagnosed.
Personally, I quite liked the fact that Myeloma didn’t have the ‘cancer’ word in the title, certainly in the early days when I was less comfortable about talking about it but since the pandemic I’ve been much more bold in explaining the need to distance/mask/shield etc as blood cancer because so many people don’t understand what Myeloma is.
It was my resourceful husband (in pre-pandemic days when you could attend appointments together) who asked the consultant ‘Is that a form of cancer?’ because I knew that leukaemia was cancer and I thought that was what the consultant was telling us that I had by the way he was explaining things. So I think I agree with @Jules that including cancer in the title might help with awareness and understanding of blood cancers.
I am fully supportive of your suggestion of annual health reviews for the over 50’s. I lived in Germany for a number of years and I had an annual health check. These were longer consultations at which one had an opportunity to discuss health concerns and build a patient-doctor rapport which is sadly missing in todays NHS. More importantly, the GP has baseline bloodtests of patients when they are healthy (before things go wrong).
Thank you all so much for all of your input so far on this! Here’s our new blog about establishing blood cancer as a category which gives an update on the priorities around this going forward - How we’re planning to make people more aware of blood cancer | Blood Cancer UK
My haematologist said to me, don’t know why they call ET jak2 a blood cancer so im a bit bewildered xx
Hi @MissDaisy interesting, perhaps that is a good question for your haematologist.
Please let us know the response.
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