Delayed communications - this is starting to worry me!

Glad the situation has improved for you but it just shouldn't have happened. ?

Well - the GP did manage to get the information - I do not know how.

Apparently there is a "signal change" on the MRI at T4 in my spine. They consulted the radiologist about it and he recommended that I have the thoracic spine CT and the whole body bone scan to try and decide what it is. So.....still don't really know what it is about, but it sounds as though it might not be something very bad. GP recommends that I have the scans because the radiologist has recommended this.

So - in some ways I am no further forward, but the GP thinks it should be checked out, so I will go and see what happens. I don't feel quite so worried about it now.

Lucky - I admire your patience and hopefully you're on the way to getting some answers.

Having been in a similar situation with my mum last year I was calling the consultant's secretary twice a day; each morning I told her I would ring for an update in the afternoon and each afternoon I told her that I would call again in the morning. I apologised for being a nuisance and explained that I understood she couldn't give me information herself, but that I needed to have it so that I could make necessary arrangements as quickly as possible. Three and a half days and seven phone calls later I spoke to the consultant - and thereafter he always took my calls.

Do feed back your experience because it will be happening to other people too. There's obviously a glitch in the system.

Thanks queenie - I appreciate your good wishes and also hope that some action will appear. My GP was very clear that it was not acceptable to ask me to have these investigations with no idea of what they are for.

I've not looked at this thread for a day or so, that's awful that you're still not sure of what's going on. It's a fine balance isn't it between being insistent then being labelled stroppy on the one hand and not pushing enough for answers to perfectly reasonable questions on the other. Let's hope your GP galvanises into action now and gets you some answers pronto!

I have just been to my GP who agrees that the communication is terrible and that I cannot just go for a scan with no idea what it is about. She has arranged to chase it up and to ring me tomorrow. Fingers crossed.

Thanks bookdreamer - I rang the GP surgery and asked if one of the GPs could make a doctor to doctor call in order to unlock this situation. I left it with them and what they did was to ring the secretary, which was what I have been doing. I am fairly new with this practice and don't want to get a name for being a pest. I can only think that I might try and book an appointment with one of them.

It is 10 weeks since I had the original scan on which, I presume, the decisions about these further investigations are based; and at least 4 weeks that I have been trying to chase it all up.

It sounds as though you were a really good medical secretary with the feelings of the patient foremost in your mind - well done!

And I think the GP surgery is not being forceful enough. Perhaps the GP could ring him/herself.

As an ex medical secretary who has just retired I would say that the medical secretary you are dealing with is being very very unhelpful.

I would never have left somebody hanging for 3-4 weeks. I would have found the consultant on call, go armed with the patient's notes and ask him to look at the letter and sign it. It could be faxed then to GP surgery.

Thanks for your advice everyone. I do not wish to cancel the bone scan and realise that I would go back to the bottom of the list, but I am not happy about having it if I do not know what it is for. I will wait till Thursday afternoon before ringing again - our post does not arrive till after 2 pm, so if I wait till Friday then it is likely I will be too late to speak to anyone at the hospital.

I am also concerned because, even after these two new scan appointments, I will probably finish up waiting another couple of months before I know what is going on. It does feel a long time!

All I can do it sit tight and wait - the only other thing I can think is to go to the GP and ask him/her what they think, but I probably won't get an appointment there till the end of the week. Big sigh.

No way should you cancel the bone scan. You would then go to the end of the queue and have the same wait over again, or even longer.

The scan is for your health, not the consultant's. If you don't receive that letter by Friday afternoon - or perhaps by Friday morning, we all know that everyone likes to get off early on a Friday and they could all have left the office - get on the phone and start throwing your weight about. You are the patient! the customer! and the customer is always right!

If necessary, burst into tears and say you are so worried and scared about why they are sending you for this test, because it has not been explained to you, and you have been waiting for four weeks for more information, in spite of being promised a letter.

Sorry but I would be upsetting the consultant, the secretary, the GP practice and the hospital that was doing the scans by now......one thing you may not have tried...has the hospital , consultant etc have a Facebook page or Twitter account..??...I guarantee that if you can complain on line for the whole world to see something will happen quickly. Complaints going viral get the response an individual cannot get any other way these days sadly!

I don't think you should cancel the bone scan. Hopefully the letter will arrive by the end of this week, and you will be, at last, put in the picture. Try to think of something else. Not easy, and probably futile to suggest it. I think if there was anything to worry about, things would be happening a lot more speedily.

They are just being thorough.

Phone and ask to speak to the consultant?

Well the surgery rang this morning to say that they have followed this up for me and spoken to the consultant's secretary this morning who has said that I will get a letter by the end of the week! I am lost for words!

I have this bone scan next week, but I am not going to go if I still do not know why it has been ordered. If I have not heard by then I will cancel it and reschedule once I know what is going on.

I really feel totally exasperated by this - it seems so wrong and thoughtless. But what the heck can I do? I have tried it from all angles now. I do not want to read the riot act and feel uncomfortable when I next see the guy - I really do not need that.

It is over 8 weeks since the original scan; and about 4 weeks since I first spoke to the secretary and she said that the letter would be with me in a couple of days. She has said this 4 or 5 times now and is now saying "by the end of the week."

So sorry you have been left to worry *Luckygirl". My first thought is that they are simply being thorough. I had a call back and several extra x-rays for breast cancer recently and l began to worry, but all was well. I hope they soon give you the exanation you need for greater peace of mind xx

Thanks all.

At the moment I have a theory on the go!

I know I have a haemangioma in my skull - it is a benign tumour made up of blood vessels. I am beginning to wonder if they have found one in my thoracic spine (which is where they commonly occur) and this is why they have ordered a CT thoracic spine to get a closer look, and a full body bone scan to see if there are others to be found elsewhere.

I will be interested to see if my theory is right - but it is the only benign theory I can imagine that might cause a neurologist to order a bone scan. I do not want to speculate on other possible reasons. I quite like this one!

We wait and see!

Luck girl....if you are seeing consultant through hospital.....call the hospital administrator to complain. I do not believe the consultants secretary has not seen him for 3 weeks, unless he is away, she may be very nice but the consultant is somewhere and she will know where! If he was going away he should have told you. The whole situation is deplorable and I feel very sorry for you having all this worry.

Thanks Tricia - I hope you are right. He made a benign diagnosis at my first visit and ordered the full spine MRI just to check he was right and there was nothing further to be found. He said he would sign me off then.

This is why I am concerned now that he has added these further two investigations - it feels as though he has found something he did not expect and is looking into it.

The letter should explain what is going on - I wish he would just sign the darned thing and I would be in the know.

My friend here had a similar experience - balance problems. She was sent for all sorts of tests and was imagining all sorts of problems.
In France you don't have to wait so long for appts, so the stress wasn't so bad. I think it went on from Nov. to Feb. , I went with her for 2 of the appts.
In the end they said they couldn't find anything wrong, but evidently had to test for all sorts of things to cover all possibilities.
Hoping the same applies to you Luckygirl.

Well I wish they would do that! - still no news. My DD is threatening to set my Son-i-l on them - he can be a real terrier!

I get letters all the time that I receive clearly marked that they have been unsigned by the consultant but sent out to expedite matters.

Thanks bags - I have to presume that something has been found on the full spine MRI that they are trying to clarify with the further scans, one of which is to a very specific area; but unfortunately I have received these appointments before the information as to what was found.

My GP surgery are kindly pursuing this and keeping me up to speed on how they are getting on.

Unless the as yet unsigned letter comes in tomorrow's post, it will be at least Monday before I hear anything. At least the sun is shining!

Perhaps they don't know what they are looking for, lucky, except some anomaly. Whatever, I hope you get some more info soon.

Thanks all.
Good news that you are out and about Harrigran - I hope that the spring and summer sunshine (we hope!) will help to see you through the chemo.