[graham-cParticipant]

Just a follow up to my last post. My GP rang up the Fracture Clinic at LRI to get me seen by them, Presumably they said no and from her reaction they put the phone down on her. Her request was natural and sensible if not obligatory for someone with my background – cancer and MGUS.

Lo and behold on the following day I was telephoned at home and asked if I could get to the Fracture Clinic in an hour. Obviously I couldn’t as it would take that long to get to the bus stop, but I didn’t tell them that. The doctor observed that I was sitting awkwardly and suggested that this might be the cause of the pain. He was losing my confidence rapidly. All the time he appeared to be doing something else and it was difficult to know when he was actually speaking to me. I had taken my medicines in and he rambled off a list of what he thought I should be taking. Obviously I couldn’t follow what he was saying and I asked him to write it down. He didn’t like that and he gave me a squinty look but, as he was essentially criticising my GP I thought it a good idea to call his bluff.

He seemed obsessed with Diclofenac and I confirmed that I had taken it previously and then he left and I was moved to the waiting room as the nurse handed me a packet of Naproxen. When he returned after an hour he said that I looked better already which was puzzling and I pointed out that i hadn’t taken the pills as he hadn’t asked me to and I couldn’t read the dosage without my glasses.

I’ve only just discovered today that it’s a drug that my GP had already prescribed, though the packaging differs, so I have been double-dosing myself. He didn’t arrange an x-ray himself and I don’t know whether or not he’s have access to the x-rays taken at another hospital the day before. if he didn’t have access to those x-rays the appointment was essentially a disaster based on fundamental medical errors.

The x-ray report should be available to my GP next week and Im keen to know what it reveals. All I know is that the pain is sensational. The doctor at the Fracture clinic has arranged a Physiotherapy appointment and I’ll give it a go but the problem is essentially that I won’t allow my body to move where I know It could cause blistering pain, and if the physiotherapist goes there, she’ll understand why.

[graham-cParticipant]

Welcome abroad fozz. I’m afraid that specifics aren’t how it works with myeloma and associated conditions. It’s best to think that you’re at the start of a journey and the medics will detect any obstacles that may come your way and see whether or not your reading is having any effect on any other part of your body.

Above everything else it seems that an accelerated increase in PP’s is likely to prompt treatment. My reading is half of yours and steady,and I receive no treatment which is find by me as I suspect treatment would make me feel ill. My FLC’s (free light chains) are more significant but again they are steady.

I ‘m on the watch and wait list and basic functions are monitored through blood tests. Aside from that any other health problems must always be considered in relation to this. I have seriously ‘crocked’ my back which is a ‘red flag’ even if unrelated.

What I’m saying is that unless you are currently at significant risk you probably won’t get a definitive answer. You’re at a greater risk of getting one of these illnesses but you’ll be monitored whereas many people are at risk and they never know it.

• This reply was modified 9 years, 12 months ago by  graham-c.

[graham-cParticipant]

I forgot to mention Jeff that I had kidney cancer 7 years ago and lost one kidney to it, so my risk factors are high. I’m on 8 x 50mg Tramadol a day aside from a host of other tablets but the only difference it makes is perhaps to slightly increase my range of movement and reduce the background ache enabling me to sleep.

Hopefully the x-ray report will be available to my GP next week and I’ll visit again then. The physical checks that were performed I suspect indicated that there was’t a fracture as pressure on my spine didn’t hurt all. It’s movement in certain directions that provokes pain off the scale. I’m normally a very fast and purposeful walker and it’s very difficult being reduced to ‘fairy steps’.

I’m not being lackadaisical but if the hospital don’t address the problem I’ll inevitably end up in their care. It’s only willpower enabling me to walk. Any deterioration and I’ve had it.

[graham-cParticipant]

We all vary and we all have different personal circumstances and health histories and myeloma can occur in many different forms and in those forms affect people in many different ways, so we each have our own unique problems. For many people the word ‘cancer’ is like telling them they face inevitable and horrible death, but I lost a kidney to cancer seven years ago so the word doesn’t have the dread to me that it may have to others.

I have MGUS and I’m under the ‘watch and wait’ regime and I am receiving no treatment but MGUS could be defined as a malignant process. All treatments are a matter of risk and benefit in many respects. I have slightly bandy legs which could have been straightened years ago but it would have been painful, may have left me in constant pain and could have left me crippled. If there isn’t an immediate risk, as there isn’t with MGUS it makes no sense to potentially make yourself ill through treatment and possibly cause more health problems. With my kidney the decision was a ‘no brainer’ even though the risks and potential for adverse outcomes were significant.

My FLC results are out of range and to an extent that is medically significant with an adverse kappa/lambda ratio and all the texts I’ve read suggest that this is indicative of a poor outcome. However, I am aware that Haematology won’t act unless the rate shows a significantly accelerating level of FLC’s which can get into the 10,000’s which mine are nowhere near.

Ironically I have developed severe back pain this week which is a significant risk factor but not necessarily proof of anything. In fact at my levels it almost suggests the two things cannot be related. I only say this to point out that MGUS can affect your judgement and take over your life.

Often MGUS plus severe back pain adds up to myeloma that needs treatment, but by not allowing myself to become obsessive about MGUS I can be a little more objective. I’ve had an x-ray and will make sure I get to find out what’s in the report but there is no need for MGUS to become a controlling factor in your life. Getting the wrong treatment will do me no good and showing the medics that I’m capable of rational thought will make them trust me.

[graham-cParticipant]

Just to mention that I’m at LRI too. I’m down as MGUS with unexceptional PP but out of range FLC and significantly so with an adverse kappa/lambda ratio. As long as I’m informed what my readings are I’m happy to not receive treatment. It seems that it will only begin if the figures show a significant ‘rate of climb’ and mine appear steady. As treatment is not likely to improve how I feel and others will be a priority I’m happy with the situation.

I had a lot of trouble getting my figures as I suspect that they don’t trust patients to be able to be rational though this improved at my last blood test.

To confuse maters I have recently ‘crocked’ my back and I’m on Tramadol, Diclofenac, muscle relaxants and heavens knows what. My usual GP is retiring and I had to see a new one which concerned me but I was impressed. She tried to get me seen at the fracture clinic because of the added risk factors but they refused and put the phone down on her. I’m not in a panic but I am in a lot of pain. Unsurprisingly on receipt of my GP’s letter LRI called me in today. Basically they want me on higher dosage pain killers.

It’s easy to jump to conclusions and I’m not making assumptions but, if it worsens, whatever it is I’ll been in hospital. I had an x-ray at Glenfield on Friday and it’ll take a week to get results so I’ll try and manage until they’re available.

[graham-cParticipant]

It may not allay your fears but personally I remember little about my bone marrow biopsy except that I felt a slight a slight numbing ache. I may have been offered gas but I can’t recall. I don’t doubt that it may affect other people differently and my own ‘bugbear is having tubes put down my throat and any mention of it makes it in everyone’s best interest for me to be sedated.

If you have concerns it’s best to make them known.

[graham-cParticipant]

The priority issue is the potential malignancy and though a diagnosis of Myeloma is never good, it will help the hospital to understand the underlying cause and lead them to make further tests. To a greater or lesser extent a large proportion of the population will have these ‘clonal cells’ in their blood and whether they represent a risk is a combination of test results, investigations, current symptoms and opinion. The priority is always the conditions caused by Myeloma, as often people don’t realise they have it until they suffer an acute episode so the hospital have to treat both as well as determining whether to not it has affected any other organs.

I’m at the MGUS stage and do not receive treatment as there is no telling whether or not it will develop and where it may strike. The point is that Myeloma isn’t a good diagnosis to receive but there’s no telling what its implications are for any individual, and it affects people in many different ways – the bones and kidneys being two main areas.

I would have thought that Myeloma is quite likely but that diagnosis is actually helpful in understanding how she may be affected and what treatment she should receive. In any event the likelihood of a possible malignancy is what will receive priority.

 

[graham-cParticipant]

I doesn’t make sense to refuse treatment for Myeloma considering the potential risks. Anyone wishing to hasten their end is making a mistake to choose Myeloma as the way to go to put it bluntly. She is quite fortunate to have it diagnosed before suffering an acute episode. I fully respect the right of anyone to make their own decisions but it’s unlikely she would be able to endure the potential effects of Myeloma without receiving medical intervention at some stage, but the way Myeloma affects people, you can’t wind the clock back, that’s why an early diagnosis is so important.

I’m still at the MGUS stage and have concerns about the possible side-effects of treatment, if I should find I require it in the future, but the potential symptoms of Myeloma mean that I wouldn’t ever turn it down.

[graham-cParticipant]

You don’t mention whether or not she has any symptoms or conditions that reduce her current quality of life but my concern, if I were in her situation, is that long term, refusing treatment may reduce life expectancy but the greater risk is the  pain and suffering from the conditions she would be at risk of having to endure could last many years without treatment.

 

[graham-cParticipant]

The hospital tried to offload blood collection to my GP surgery but the surgery wasn’t set up to handle it and the hospital don’t support it, and so I no longer take any notice of that. I won’t list all the things that went wrong but the look on the nurses face when I handed her a container with a 24 hour urine collection was a picture, not that the surgery had supplies of the containers and neither had the hospital given me any.

Having noted that specimens for urine electrophoresis must be kept refrigerated I doubt that the surgery had appropriate facilities let alone the nurse in transporting it.

As long as I have the forms I can get my bloods taken any time I want without an appointment at the hospital and I know the details to put on my SAR. Previously I’ve had problems with SAR’s but the hospital appear to understand the implications of not handling them properly and I got results in two weeks last time, and I don’t mind paying £10 for a simple hassle free experience that doesn’t involve argument.

[graham-cParticipant]

All I’ve ever been told is that my results are ‘okay’. If I hadn’t had copies of my blood test results I wouldn’t even be aware that I have a malignant condition and I would expect to be discharged in due course. Understanding myeloma in all its manifestations is difficult and I have your variation Jan T but at a much less advanced stage. I can quite appreciate that those who have the greatest risk of bone degradation are a priority, and similarly those with obvious symptoms of organ failure and, though I have many rather non-specific symptoms, it’s case of waiting and seeing where the disease manifests itself.

To a large extent and in simple terms a person may have the illness, but where it’s affecting you is the aim, and treatment will deal with that unless your results become so great it has to be addressed. I’m happy to go along with that as I presume that treatment won’t make me feel any better than I do now.

<span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 27px;”>…</span><span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 23px;”>.. the Consultant concerned instructed to withdraw the provision of results altogether</span>

Quite simply the Consultant doesn’t posses that authority. The right of a patient to be informed of the the results of medical tests and treatment is embodied in the NHS Charter (in slightly vague terms) and also more directly under Data Protection Legislation. All I require is four figures – paraprotein level – free light chain level (which ever flavour is relevant) – kappa/lambda ratio – eGFR.

Your GP is the most diplomatic means to get the information being withheld from you, but the Consultant could have made it inaccessible to your GP too, in which case you have to go the way of an SAR.

It’s interesting to hear about your similar experience with the 24 hour urine collection JanT. NHS protocols appear to be governed and set by the International Myeloma Working Group and I presume that this test forms a part of that, but I noticed that the first time I provided one it went straight to the ‘sluice’ which seemed peculiar. I have read that the blood tests provide better and more accurate results in all instances apart from testing for amyloidosis.

I did actually discover (by unofficial means) that the test was referred to in my records, though the official response was to ignore me, and I discovered that it stated that the specimen was ‘mislabelled’  which I imagine is French for it being poured down the sluice. I didn’t pursue the matter on that occasion but it’s very risky practice and one that no medical team should countenance.

 

[graham-cParticipant]

Hello JanT

I have previously had a lot of trouble getting hold of results and I have created a lot of fuss about it. There is history to this as I was treated deplorably when I had kidney cancer and neither I nor my employer were told I had cancer, which I only discovered was known to the hospital when I got my notes. I only mention that to explain why for me I’m particularly sensitive about seeing my medical notes.

So that you don’t think I live on the brink of hysteria I would mention that a registrar at Haematology described me as a ‘charming gentleman’ in a letter and having had one brush with cancer I’m quite blasé about it, but I resent being fobbed off or not being given facts when I know that the information is available.

Last year the hospital lost a 24 hour urine specimen for which they were going to perform a urine electrophoresis and then they denied they ever took it. As the only comment they are ever willing to make is ‘okay’ I wasn’t then pleased to learn that my light chains had increased by 20%. I’m not receiving treatment and nor am I banging on the door to have anything done, but I do have a lot of inexplicable symptoms. I could ask my GP for the results but I don’t want to risk getting her involved in what seems to be a problem area as we appear to have a decent relationship.

I therefore make Subject Access Requests to the hospital and they are legally obliged to provide the information requested within 40 days which costs £10. They could refuse on the grounds that it might affect you psychologically but I think that some hospitals are introducing it as a policy which they can’t do. A hospital cannot introduce a policy that overrides an Act of Parliament unless they have a regiment of tanks or can form a quorum of the crowned heads of Europe.

If you look up your hospital website and ‘Subject Access Request’  it will tell you how to go about it. Previously I have still had trouble but, if they had let me down this time, I know an inexpensive way to take them to court. This may sound extreme but the frustration of having something withheld to which you are legally entitled is a ‘red rag to a bull to me’.

I’m sure that it’s more inconvenient and costly for them to have to retrospectively look up results and go through the Subject Access procedure than give the results at the time. The nurses always presume that I will get the results almost immediately when they take the blood and with some devilment I was looking forward to telling them I was taking the hospital to court over the previous set, but I got them promptly this time, and I sent an email ‘thank you’ message.

I have never found PALS to be very helpful. Your GP is the best bet and mention that you are legally entitled to them using a Subject Access Request if he/she can’t help. Being polite and firm helps.

• This reply was modified 10 years, 4 months ago by  graham-c.

[graham-cParticipant]

I did finally get the blood test results. i can only say that my attempts to uncover anything about my illness has been met with a complete shambles, indeed if I didn’t get my results, I would’t even know that I had the illness as all I’ve ever been told is I’m ‘okay’. Based purely on that I’d be expecting to be discharged, and the Consultant wrote to my GP saying that my results were ‘stable’, when in actual fact my FLC’s had risen by 20%.

The hospital should realise that refusing to disclose results merely fires a person’s curiosity.

Unfortunately I do have some quite severe symptoms that may or may not be related to the illness, but no one knows or has investigated and  I need test results to attempt to make sense of it all. I’m not banging on their door demanding treatment as I don’t know whether or not it would adversely affect my symptoms, but no one does.

[graham-cParticipant]

In response to my comment on Patient Opinion I received an offer from the Haematology Department to investigate, and I used the email address provided in the response to make contact. I have heard nothing.

The only concern I have about my eGFR is that the hospital refuse to disclose what it is. Though Myeloma is a complex illness I use four figures to monitor its progress and, having raised FLC’s and the kidneys often being victim, it’s handy to know how they’re functioning. I cannot ascribe a motive for withholding that result as doing so contravenes NHS policy and their legal obligations.

I intend to issue a final warning this weekend and I will take advice on serving the hospital with court papers in early April.

[graham-cParticipant]

I think that for general purposes four figures give a decent overall picture – Paraprotein Level – Free Light Chain Level – Kappa/Lambda Ratio and eGFR. Of course the type of Paraprotein and Free Light Chain is relevant but I presume that the hospital can work that out for themselves. It’s not difficult.

If you have other health issues or after you have begun treatment then other levels may come in to play but I haven’t reached that stage.

The thing is that I have every confidence that my eGFR will be satisfactory, but that only raises the question of what will be disclosed if, at some future date, it isn’t satisfactory. The only outcome of withholding results is a loss of confidence in the hospital. Having lost a kidney to cancer and with raised FLC’s, eGFR is potentially the most relevant indicator of disease progression.

[Author]

Posts