Dad diagnosed yesterday - confused

[caroline74]

Hello

My dad was diagnosed yesterday and I am a bit confused about the diagnosis. He has a hearing problem and the haemotologist did not speak english as a first language and all my mum has said is that it "it is the bad type, the monoblastic one". Having looked at all information on here this doesn't seem to fit with any of the types mentioned. Does anyone know what this might be?

(It may be of course that they do no know what it is but are trying to protect me from the truth? I am really confused.)

I have asked them to ask for a written diagnosis - my mum has said that this is being prepared for them.

To be honest I am really angry about the length of time it has taken to get a diagnosis - it was back in January that my dad first had blood tests and he has had to wait about a month for the bone marrow and other test results AND get an appointment with the Haemotologist to get this diagnosis. Also, he was told to go in for a blood transfusion at the A&E today - when he got there he was made to wait 5 hours because they obviously didn't know he was coming in. I don't know why he didn't have an appointment made at the place he has had his previous treatment.

I would like to sit in on my dad's next appointment with the haemotologist but I do not know when this will be. I know their is a Centre of Excellence in London and wondered whether it is worth asking for a referral (they live in Kent) ? I am not sure if this would help/benefit?

Sorry this is all a bit random at the moment. Experiencing a lot of different emotions and wish I knew more about the diagnosis

Thanks

[chris]

Dear Caroline

So sorry to hear of how confused you and your family is at the moment. It would be really helpful if doctors could pass a brief information sheet to patients so there was no chance of mis-hearing or mis-understanding. There is no point in anybody speculating on what type of MDS your Dad has - and should we presume that it is actually MDS? The written information should help. Once you have this, please call Sophie Wintrich who will be able to de-mystify the diagnosis.

Unfortunately a gap of several weeks following a bone marrow biopsy is not unusual as the lab results can take a while and then appointments are not always available. The messing around at the blood transfusion is unforgiveable and he should have been expected and had everything explained to him.

For people in Kent, King's College Hospital would be their Centre of Excellence and this is something your Dad might think about if he does not feel confident in the local haematology department. You have the right to ask to be referred there and maybe share care with local hospital to save too many treks up to London.

These early times after diagnosis can be very upsetting and confusing for all concerned so I hope you are soon able to get the information you need.

Best wishes

Chris

[caroline74]

Thanks for your reply Chris
I had considered the worst outcome from the tests to be Leukaemia or maybe aplastic anaemia and hadn't even heard of this condition.
It is definitely a comfort to have support from others who have experience of this condition.
Thank you so much for your message and support.
Caroline

[janetstanford]

Hello and welcome to the site
Sorry to hear about your dad and yes you will all stressed and confused and like most of us it comes as a shock as the condition is rare and not commonly known about and most of us have found it all confusing and have learnt as we go along and by joining forums such as this
Chris has given good advice when you have that letter which lays out the information ring SOPHIE and she will be able to help
I really shocked that the blood transfusion was done in A&E i have approx 15 a year and not once has it happened like this a few times when i have needed some quickly they have tried a few wards to find me a seat and instead of going in at 9 i have had to wait till 1 but not an issue i would suggest if you attend the next clinic appointment you discuss this with his doctor perhaps they could book him onto a day ward or if they have one a chemo day unit ( this may sound bad but i have been on the one at my hospital and they great tea and biscuits provided ) also has he been assigned a nurse specialist if so you could ring her or ask to see and discuss the issue of the transfusion and other things this may help both you dad and mam to know if you have a problem she can help resolve these
best wishes to your dad
Janet

[caroline74]

Thank you Janet for your comments and support. It is so good to know there are others out there.

Hopefully the written diagnosis is in the post to us and then I will do as suggested and speak to Sophie.

My mum just told me today that she has a printout of all the dates for dad's chemo sessions. One thing I am absolutely gobsmacked about is that they have split the sessions between their nearest hospital in Maidstone Hospital (7 miles) and Pembury Hospital (18 miles). I can't help but feel this will confuse things even more.

Going down to see them (I live in Manchester) on Sunday so I can be there for my dad's first chemo session on Tuesday. Hopefully will find out more then.

Thanks again to you both for your support.

[caroline74]

My sister has now been to see my parents and apparently the doctor had highlighted my dad's specific diagnosis in one of the information leaflets. He is RAEB, Intermediate 2 risk. As well as the Azacitidine they are going to give him G-CSF.

He ended up staying in the hospital last night ( apparently there was a norovirus outbreak on one of the wards where the blood transfusions normally take place) and they only managed to give him 2 of the 3 units before he went to bed. It then took them 3 hours to sort out the final unit this morning. Apparently my dad was so angry he told them he would go and get it himself!

Feeling despondent about the standard of care he is getting and the potential of him getting shunted about for chemo.

[janetstanford]

HMMM
Yes you will be i also had chemo but i was able to take mine at home (oral) i really can understand your concern i think you need a list of questions for tuesday concerning the transfusions chemo and the issue of being shunted about i think the main issue is to find out Why is this to be done for the hospitals ease ??? or maybe his doctor works at both on certain days ( mine does ...i believe chemo has to done where he is more comfortable and feels secure and not only that but also so his family are within ease reach ....you have a lot to discuss
as a transfusion dependent i find this unreal that they would give 2 then 1 a couple of times i have had to wait a few hours but thats because i have the green stuff (irradiated graft v host ect ) and mine has to be mixed else where you should ask what his blood type is and where it comes from ( hospital /blood bank ) and getting it himself yip ive said that a few times
remember you do have the right to be treated where and when you want
Here from you soon
Janet

[chris]

Hi Caroline

I'm glad that your parents did seem to be given some information and that your Dad has a schedule for treatment, albeit at different centres. I have found some information about Azacitidine on the Macmillan site so hope this is helpful. Azacitidine has to be given for 7 days (often done as 5 days followed by 2 the next week) so maybe the different centres have to be used to ensure this continuity? Do encourage your Dad to ask about the reasons and the possibility of having it done at a single site.

http://www.macmillan.org.uk/Cancerinfor ... idine.aspx

Best wishes

Chris

[caroline74]

Thanks again for all your comments and help

My dad had been given the wrong schedule and his new one has all his appointments at the one hospital, closest to him. Phewww!

He had his first Azacitidine this afternoon and was very brave! Treatment delayed by 90 minutes due to all the pharmacists deciding to take lunch together (grrr) but I could not fault the staff on the day ward and the nurse was very good at explaining what would take place. We also managed to collar the Haemotologist's PA to ask a few more questions about the G-CSF etc.

[janetstanford]

Good good you sound so much more positive in your post stress levels down
hope your dad is fine and more positive himself
take care Janet