If your doctor and private rheumatologist think a CT scan of chest and abdomen is needed to check for possible undiscovered malignancy, how long would you expect to wait through the public health system for it?
Because I can't afford the scan, my private Rheumatologist has had to make a request to the public Rheumatology Department. I get a letter today that they will see me for an "assessment". It make take 4 months for an appointment.
I have already had an assessment and treatment for over a year privately! It's my symptoms and health that have led to this possible CT scan. When someone mentions we better check for anything nasty just in case, it kind of sits there in the back of your mind.
I feel quite unwell and I despair at having to wait so long just to get my foot in the door. Am I being unreasonable?
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Peep44
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25 Replies
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Hi Peep44, I am so sorry to hear this... you must be quite upset by it! Try to think positive, although I know how ridiculous that sounds!
Are you in UK?
Here (below) is a Delivering Cancer Wait Times document for the UK. Did your Rheumy actually say it is to "rule out undiscovered malignancy?"
I am in New Zealand. My rheumatologist did say undiscovered malignancy in the referral but didn't ask specifically for a CT. I know it's probably just a precaution..........I hope.....
Don't know how public medicine works in NZ...but can't you go to your GP & get an urgent referral.......in UK that would mean you should get a test/scan in a couple of weeks. Explain to GP it's not just a scan for RA?
If your Private Rheumatologist thinks you may have an " undiscovered malignancy" he must have a reason,& thinking about it...all malignancies are undiscovered until tests prove the opposite......I would definitely explore every avenue to put your mind at rest.
It was the doctor who wanted me referred. I suppose she didn't want to step on the toes of the Rheumatologist without talking to her, but it seems to have ended up in me getting a basic rheumatology referral instead of a radiology referral.
Hiya Peep44. It's understandable that you'll be on edge given the lengthy period between suggestion of something possibly being amiss, assessment & investigative scan but here in the UK (particularly at my hospital) we're just grateful they're at last using the CT scans as part of investigations! Apols for seeming glib at such a worrying time for you but it was so frustrating for us that at one time they limited use because of cost, more so because our first one was paid for by public donation, but nowadays we can expect a similar lengthy wait as an outpatient if we're not considered to be an urgent case, although if actually in hospital it's quite different of course. Suspected malignancy is altogether another thing though.
The only thing I can suggest is asking your GP if he thinks it's a reasonable length of time to wait for assessment at Rheumatology & from that a further wait for an appointment to be scanned, he should have approximate waiting times, & if he could intervene in any way. Actually though you can also ask if he thinks it's necessary to be reassessed in order to have a Rheumatology-related scan given you've had treatment in the private sector for a year now, sorry I don't know the ethics of your health system in New Zealand. Other than that try not to panic, you don't need a stress related flare on top of everything else. If you can make yourself available at short notice you could ask to be added to the cancellation list if there's no chance of bringing your assessment forward, if it turns out it is necessary.
I hope it turns out you've nothing to worry about, it could be your Rheumy is being extra careful ordering a CT scan, erring on the side of caution & being private more commonly a CT is ordered whereas in the public system an X-ray would probably be done first due to cost. If that reveals something of concern then a CT scan would be the next step. I had a bit of a scare recently but all was revealed on an X-ray, an infection & inflammation in my lower left lobe, no CT scan, & extra cost, necessary.
Hi Nomoreheels. I have had a chest xray and an abdominal ultrasound in the last couple of years.
In my last few blood tests, there was something going on with white blood cells. I didn't really ask what, but it started back when I started feeling even worse than normal.
The sweating is really bad. It runs down my face and legs, and even my ponytail ends up wet. Low grade temps most days extreme fatigue, breathlessness and itching. Feel like I am going crazy!
Ok, if you haven't had any imaging recently, say since your WBC's have risen, then I would think a repeat current one is necessary. It sounds as if you could be fighting some kind of infection or something if your WBC's aren't your normal (we each have our own 'normal', they may not be necessarily within the lab's parameters, so if it's an unusual reading for you then it would suggest something's awry), & why your Rheumy wants imaging done whichever type it turns out to be. When you say you started feeling worse than normal are you meaning with your RD or specifically with your chest & abdomen?
The sweating could also be related, either infection or if your RD is not very well controlled... but this is all guesswork, I'm only relating it to my recent lung infection events. The fatigue too, though the breathlessness not so much unless there's some RD related (or unrelated) chest issue which is affecting your breathing. The itching could be medication related, as could be the breathlessness, it really is conjecture. Going back to the sweating, I'm assuming you're not of the age where you could be perimenopausal, around your mid 40's? The results, & further blood tests probably, should give more info to your Rheumy. Once he has the results back & you see him next things should be clearer.
My doctor says she is not comfortable writing off the symptoms to other things, as we have pretty well looked at most obvious things - diabetes, thyroid, hormones etc.
I would press for it. I'm in the US and "sweating profusely at night" got me a hematologist/oncologist appointment the following week and a CT the week after that. Thankfully nothing was wrong. I would get the bloods repeated. Do you have swollen glands anywhere? Is the itching at night? Have you lost weight without trying? Perhaps you could get a more up to date x-ray(s) done and/or ultrasound?
My glands on my neck go up and down. My body is tender all over so I'm not sure about the other glands. No itching and sweating at night and I'm on prednisone so no loss is weight!
Some of these meds can cause all kinds of things to happen. Docs will tell you "it doesn't cause that" and then you go to health boards and see people commenting all over the place that they do!! They also lower our immunity which can make glands go up and down while trying to fight off bugs. That could be another reason the white count is up. My hematologist said he was 60/40 for me having the CT. I didn't think anything would be wrong and I had already met my deductible so declined at the appointment. I had to think about it for a bit before doing it. But I went ahead because my husband was pushing for it so he didn't have to worry. You can still lose weight on prednisone when cancer is at work. If it's been a year and you're still working on it, I'd say that's a good sign. Unfortunately this is the conundrum we face with this disease and it's drugs. The disease itself is a punk. Hopefully everything is okay. I'd say if you can schedule one, do so, and otherwise watch and wait. Good Luck.
Hello Peep. In my experience with private health professionals is that if they say we better have a look, just to be safe. It means "I can make more money here and nobody will be the wiser and you never know there may be more to come". I know this sounds very cynical, but as I have had many unnecessary investigations. I had private health insurance because I was working as contractor and could not afford to wait for services. I just had a NHS chest CT scan. I waited six weeks and will have to wait at least that long for the report from the consultant. Am I worried? No!
What I really want to say is, I hope the CT scan won't show anything untoward and don't worry too much. All the very best.
Hi. My public doctor actually requested this course of action and asked my private rheumatologist to refer me. I don't have any health insurance and I pay full price for the Rheumatologist. She won't be making any money out of me.
The private and public health system here don't seem to work well together.
A couple of years ago when my doctor referred me to the public Rheumatology Department, I was turned away. I had symptoms and high ESR and CRP, and positive ANA 1:320 titers. This was after having time in hospital for a huge flare up of troncanteric calcific tendonitis in the gluteus medius. It.came on suddenly and I couldn’t walk for 2 weeks. Never even had pain down there before. They did some tests, to make sure it wasn't septic, and sent me on my way with crutches and codeine. No anti inflammatories, or steroid injection or physio or suggestions of why it happened. After attending my followup appointment 6 MONTHS after, I was offered a steroid injection then. 6 months too late!
Public mantra MEDICATE - MOBILISE - DISCHARGE - ASAP
I'd ask your GP because there is I believe a 14 day rule relating to suspected tumours. But I'm not a medical professional, I only know I was seen in 14 days which was what my GP said would happen. Best of luck.
It's shocking that you have to wait on something so worrying, that's what's happening nowadays, and know that if you have the money you can get it done immediately it's a disgrace! But let's look on the brighter side and maybe they are just looking for answers like in my case same thing as yourself they mention the cancer scan and one has to wait and wait, mine did not show anything sinister but the doctor I'm now with Dr Rod Hughes thinks I have something else and not PMA/GCA I will be thinking off you and say a little prayer your worrying turns out to be unessasary God bless
Hi Jamie345. I had the CT and it was OK. I still have some of the symptoms but the cooler weather has helped calm them a bit. Not looking forward to summer though!
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