I’m a 33-year-old awaiting a diagnosis. I’m expecting confirmation that I have chronic myeloid leukaemia (CML) on Monday after an excruciating, anxiety inducing 61-day wait.
I feel as prepared as can be, having done a colossal amount of research on the condition. Thankfully, I have a good support network around me and my partner’ll be coming along too.
Strangely, I think it would actually throw me more off-kilter if I’m told that I don’t have CML because I’d be back in the dark not knowing and I have somewhat resigned myself to having the disease.
Anyway, I’m hoping to draw on other people’s experiences.
Do you have any practical tips about how to handle a cancer diagnosis or being left in limbo?
What should I expect on Monday? How do these things normally go?
What questions should I ask the consultant?
Is it reasonable to ask for confirmation of any diagnosis in writing?
How about print outs of test results?
Are questions around more practical, everyday problems best dealt with by a clinical nurse specialist?
Any advice the community could offer would be greatly appreciated.
Hello there Chris
I certainly don’t have any words of wisdom but I didn’t want to read your post and run. I do hope that you get your CML diagnosis as you expect as I can appreciate that you want to know what’s wrong with you and what you/they can do that treat and move forward. 61 days must seem a very long time from start of process to diagnosis. My husband is living with a rare form of lymphoma and was diagnosed 4 yrs ago now - we both remember keenly his diagnosis. What I would say to you is for your partner to take a notebook and make notes. Perhaps agree qts beforehand if CML diagnosed such as asking about treatment options, what monitoring is required, implications for ‘normal’ life, is immune system compromised, are there any fertility repercussions if on treatment, what support services are there, any info you need to pass to an employer to ensure you’re best supported, what are the best ways to contact the consultant or ward etc … This is your chance to ask these - there will be other opportunities of course but my experience suggests diagnosis appt is one of the longest times you get with your clinician. If CML isn’t diagnosed then I imagine youd be wanting to ask what happens next to find out what’s going on, how can they best support you to get answers, what other specialist options do you have, what other blood disorders have they explored and what can you do to best look after yourself til answers found.
I appreciate there are perhaps too many qts above but it was all info we wished we had been told, even in the midst of the upset. We needed that info within the first few weeks and it was very distressing being passed from pillar to post to then get it. I don’t think a diagnosis in writing is important unless you require it for a specific purpose such as treatment meaning you need to cancel a pre booked commitment for eg. I note all blood counts down as we’re not allowed prints outs now - I do make a point of getting the numbers and I make no apologies for ensuring I get them
Our experience was an appt with a consultant where we found a Macmillan nurse present before anyone told us it was cancer - that kind of gave the game away even if we were fully expecting to hear it was cancer as he was so terribly ill.
I think everyone deals with a cancer diagnosis differently and some of that depends on whether it’s a chronic or acute cancer, whether it’s treatable or curable and the anticipated impact on daily life.
Any which way this turns out, I wish you and yours well. I wouldn’t wish this on anyone but there are moments of peace and joy still in cancer and it does change life as you know it. But it’s still life and it’s your life. Don’t be afraid to ask qts and start as you mean to go on - playing an active role in your care. Look after yourself and always know how hard this will be for r your partner too and take solace in each other. Do keep us posted
@sisyphus I cannot imagine how you are coping with waiting so long for your diagnosis, and I hope that when you see the doctor you are told what the problem is, even if it is not CML. I am pleased that you have a good support network and a partner who has been sharing this burden. Some people who are waiting for a diagnosis see it as their problem and do not share any information, even after diagnosis. From my experience honesty is the best policy, and if children are involved you cannot pull the wool over their eyes.
Although my experience is not of CML, it is perfectly reasonable for you to ask for a copy of the letter being sent to your GP.
After your diagnosis you may want to have a look at some of the information on the Bloodwise Site, as they have several publications which you can look at online, or ask for hard copies to be sent out free of charge. There is also the support line which is there if you need to talk to someone.
Take one day at a time, be kind to yourself, and have a look at different topics on the Forum which might apply to you and those close to you. Best wishes
Hi, You must be in such shock and I really feel the not knowing is the worst part, I know my head is like a washing machine with fears, questions, thoughts and feelings whirring around. I found writing all these down really helped me because when I am in shock and when I walk into an appointment my mind goes blank. I either take someone with me or take notes and write down the answers myself. I am also big and brave and ask that follow on question now as well. I found giving myself time to reply to questions or treatment options helps me. I did tell family, friends and employer immediately and I am pleased I did although I found it difficult to explain what I did not understand myself. The Bloodwise website provides a range of useful downloadable information leaflets from telling family and friends and employer about watch and wait (active monitoring) to treatment choices. We are here to support you and if you feel the need to talk to someone the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day.
Please let us know how you get on and take care of yourself and have the odd treats.
Sorry to hear your situation. I was diagnosed with CML 6 years ago and it’s a tough thing to be told. For your appointment on Monday I would suggest asking your partner to make notes as it’s a big thing to take in and it’s easy to forget things afterwards. In terms of questions, the most common gene mutation that causes CML is the translocation of chromosomes 22 & 9 commonly known as the Philadelphia chromosome mutation so perhaps check that with your consultant.
If you haven’t had a bone marrow biopsy you might ask if you will need to have one. This determines the molecular level of the condition. Treatment could well be a daily TKI (tyrosine kinase inhibitor) tablet, most common one to start with is Imatinib but your consultant will tell you about what treatment is right.
I get follow up letters from my consultant with the diagnosis on it, what my latest results are and treatment. In the first few weeks they will be looking to make sure your white blood count comes down to normal; these tend to come down quickly once you start treatment. The molecular level takes a considerable time to come down so patience with this is recommended. I’m competitive and wanted it to be undetectable in less than a year but it’s taking it’s time (6 years!) and I’m not undetectable yet. Just go with the flow, you don’t have any choice so I wouldn’t stress over that. It’s the downward trend that’s important, not the speed. But that’s looking further ahead. The molecular measure is the PCR-ABL and make a note of it each time you have your check ups, you’ll be able to plot your trend over time.
In the immediate term, your emotions are going to be all over the place for the first few months; you may well go from one extreme to the other. A lesson I learned was that you are going to have bad days occasionally, accept this and don’t waste energy fighting it. Save the energy for the good days.
The internet can be a mixed blessing, once you get diagnosis confirmed and treatment started, make sure you live your life. I’ve been working full time since diagnosis and got involved with Bloodwise and have seen and done some amazing things. I did lots of research too but it made me depressed so I stopped.
There is a Facebook group for CML patients (Chronic Myeloid Leukaemia UK - CML UK) and it’s useful in the first year or so to check in with other patients on side effects etc. You can ask anything on there and you’ll get good answers; get confirmations from your CNS though (Clinical Nurse Specialist who will be assigned to you - they are brilliant).
Probably enough from me for now, good luck for Monday and if you’d like to chat through anything, I’m more than happy to. Let Bloodwise know and we can arrange direct communication.
Hi Paul, a great big welcome to our community forum. I am glad your feet have touched the ground long enough to share your experience and wisdom here. I have found this forum very supportive and informative and it is growing every day. Take lots of care. xxxx
Hi Chris, I’m a little late to give advice as I see your appointment is today. There’s some great advice here so I hope it has helped you go to your appointment today as prepared as you possibly can be. I really hope all goes as well as it can do. I’m glad you have great support around you, but please ask anything you need to on here, there’s a great depth of knowledge. Wishing you all the best. Lisa
Hope your appointment today goes well Chris, we’re all thinking of you! Our support services are here, as Erica said. Don’t feel under pressure to remember everything and ask all the questions today, you’ll have more opportunities as things move along. Best of luck, Dawn