[angieevangelouParticipant]

Yvonnese
I get my blood test results from my GP surgery as i get them done there with the blood request slip heamatology give me at my 3 monthly appointment. I have had to fight to get them due to unhelpful and obstructive doctors receptionists so i complained to my gp and now i have to call to get gp to call me then see what the results are then she gets them printed out and left at reception…much more complicated than it should be but we have a right to have copies of our results !
Angelina

[yvonneseParticipant]

Dear Angelina

I just want to know what’s happening with my results …..if things are staying stable or getting worse. I am borderline Myeloma and just so I can deal with this mentally I want to be aware of all the facts not just a select few. I am sure you understand that it can be difficult living on this knife edge all the time. I am still seeing Haematogist every 10 weeks at the moment but am just coming up to 1 year since diagnosed so if all is stable for moment I am expecting to be passed back to Myeloma nurse or gp surgery.

Many thanks for your reply

Best wishes

Yvonne xx

[graham-cParticipant]

I’ve mentioned it before yvonnese, but you are legally entitled to know your medical results. There is no arguing with that and, purely because I had a terrible experience of having information withheld from me when I had kidney cancer, I am not prepared to be fobbed off. I’d just ask the haematologist at the start of each appointment and have your pen and notebook ready. I only require four figures and at an appointment, the haematologist should have the information at their fingertips. Keep calm and be insistent. My last results showed an improvement and so I’m not bothered about the next results.

Purely from the fact that you are being seen at such short intervals suggests that your illness is more advanced than mine, and my own need to know is determined by how high my readings are. It also helps the patient to know if any symptoms they are experiencing may be related to deteriorating results. I have plenty of symptoms, most of which I believe are irrelevant to myeloma. If my results suddenly deteriorate then it is more important that the haematologist knows what they are.

Of course, if you know your results, it also enables you to discuss them and get some idea of the hospital’s strategy for dealing with myeloma – trigger points, tests, symptoms etc. I get much more out of the hospital being charming and polite, and knowing exactly what I want from the appointment. The appointment is actually for YOUR benefit and you shouldn’t leave it without being better informed.

If they don’t inform you of results there are simple bureaucratic processes that will get you what you want.

[yvonneseParticipant]

Hi Graham,

Many thanks for your advice. I am due more bts in a couple of weeks again and seeing haematologist 13th May. Which blood tests do you normally ask for? I usually have fbc, u&e, calcium and Immunoglobulin. I am having the Serum free light chains as well this time. It has been a difficult couple of months because I have been having bone pain in my right humerus (to the extent I can not put weight on it) both femurs and back. I have had more xrays which showed nothing suspicious. I have also had MRI on my right humerus/shoulder which came back clear. Obviously I am worried as this has been going on since end January and I still have this bone pain. I’m seeing my gp later this week to discuss this pain .

Anyway thanks once again

You’ve been a great help

Yvonne

[docmikeParticipant]

Dear Yvonne,
A negative Pet scan may give you reassurance.
mike

[graham-cParticipant]

I ask for Paraproteins, the Free Light Chain figure  (whichever one is relevant to you), kappa/lambda ratio and eGFR.  If you have a bad k/l ratio (as I d0) then I suspect it will always be bad. Your eGFR tells you your kidney function. Mine isn’t good but I have only one kidney, so actually my figure is quite good at 60. With all these figures there is usually a significant margin for error, as in the eGFR, so you’re looking for not only a deterioration but a sustained one. Even an eGFR of 50 wouldn’t be of undue concern but they may call for another test in a reduced time scale.

To complicate matters I also take medication for high BP and cholesterol which can also affect the kidneys negatively, but I know that my GP is keeping watch on this.

My figures improved last time and I feel that knowing what they are and a little more about their significance helps me to avoid wasting their time with unreasonable concerns. I’m in a fortunate position at the moment but, if they take a turn for the worse, I’ll want to know about it. Though I have a general idea of the treatment, I’m not going to research it in any detail at the moment as I feel that is just putting my mind in the wrong place.

[yvonneseParticipant]

I know what you mean re looking information up. It can definitely mess with your head and you end up tormenting yourself needlessly. I am making a concerted effort to not keep reading information. There’s not much point. Whatever will be will be – it won’t change anything.

Just got to go with the flow…..

Thanks for your input

Yvonne

[jmsmythParticipant]

Hi Yvonne

My husband was diagnosed in 2006. He smouldered until 2012 and had SCT. When he was diaganosed I contacted Myeloma UK and they sent me a diary. Over the 9 years it has been invaluable to us. It has different areas – what treatment in – what questions to ask etc. the part I use most is blood results page. It tell you what the normal ranges for different tests and areas to write results in. You can see right away if there has been any dramatic changes and can speak to consultant there and then. When we see consultant I take my diary and pen out of my bad and I’m given all the results immediately. After theses years I don’t have to ask – given right away. As others have said you gave the right to know. Hope all goes well for you

Jean

[graham-cParticipant]

I can understand why a Consultant/Doctor may wish to avoid providing results, particularly if he/she feels the patient will misconstrue their significance. After all, for most people it will be like a bolt from the blue, and to find that no treatment follows immediately after abnormal results can be hard to understand. It takes quite a bit of research to understand the illness and how it’s treated.

I’m not one to go with the flow but knowing more about the illness and how the medical profession react to patients, I know I’ll get what I want if I am polite, charming and firm and don’t give any appearance of being disturbed by my results. If I don’t get my results then a Subject Access Request will get me what I want, but I’d prefer to avoid it, and I would point out to any Consultant that it’s better for me to know now than go through this formal procedure.

As my last results were improved I am not bothered about the next results and I can go with the flow for the time being, but I’ll be using my charm again in October. After initial problems getting results I don’t think I’ll have further problems.

If your results are worse than mine AND more importantly worsening, then you are in a different situation to me and should ensure you get the information you need. If you have an active illness, potentially leading to treatment without knowing it, you can’t have a meaningful conversation with your Consultant/Doctor.

I ‘duffed’ my back in prior to last Christmas and was barely able to walk, which I didn’t think was related to MGUS but my GP still insisted that I go for an X-ray. Considering I hadn’t seen her before I was impressed but, more importantly, I understood why and I wasn’t unduly concerned. This is an example of where I felt no need to create a drama because I knew where I was with the illness. It is useful to you and can be helpful to the hospital.

Simply getting to my feet took ten minutes and kerbs were a barrier when it came to walking and if I had had any thought it was myeloma related I’d have called an ambulance and walking to the surgery would have been plain stupid. Pain relief and anti-inflammatories and it went away in about ten days. Don’t tell my GP but I’ve kept what’s left ready for the next time which should at least make the walk to the surgery easier.

[yvonneseParticipant]

Hi Jean,

Many thanks for your advice. It is appreciated. I am due blood tests again next week and see my Haematologist on 13th May for my latest results. It is 1 year since I was first diagnosed with Mgus / borderline Myeloma and I’m in a routine now with what to expect. If the results are stable I’m expecting to probably just see the Myeloma nurse next time unless anything changes. If I’ve had any queries I have emailed her and she speaks to Dr and gets back to me with the answer. You just have to get on with things as best you can. I work at a gp surgery so I am fairly familiar with how things happen.

Fingers crossed I am still stable.

Best wishes to you and your husband

Yvonne x

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