2nd DVT, Lifelong Rivaroxiban & no scan

[debbiewalker]

Hi all.....I was diagnosed with a second DVT, 1 year after the first. The first was classed as unprovoked and the second too. When the DVT was identified the Consultant in Medicine said that they would refer me for an abdominal CT scan presumably to rule out any discrete abdominal cancer. I chased the scan appointment twice and today was told that the radiographer had reviewed the request and my details and cancelled the request as he said it was not necessary. I am a bit annoyed that I have had to chase something that the radiographer has just cancelled without notifying me and all the wasted time that accrues for everyone (in an already cash strapped NHS) but more to the point how can a decision be made by the Consultant, he obviously felt it was necessary at the time for someone else to decide it wasn't' needed. I have since read the NICE guidance and that seems to say that for unprovoked DVTs then the scan should be carried out. Has anyone else had this experience or similar or been followed through with a scan?? I am still not really any the wiser as to what is causing the DVTs. I think it would have been appropriate for the decision to be relayed and the specific reasons for the cancelled scan to be stated or do I wear rosie-coloured glasses?

[rainey999]

I would complain to the hospital PALS team....give them the questions you want answered, such as why was the consultant's request overruled, why did nobody contact you. ....etc...they will chase down the answers for you.

[Mallard]

I would ring the Consultant via his secretary, I'm sure he wouldn't be very happy to be undermined. Hope you get your scan. Best wishes

[SpeedyH]

I had an abdominal scan four months after dvt. As you say it is nice recommended and cancer can be an underlying cause of clotting problems.

[misswoosie]

When you say the Consultant in Medicine, was he a Haematologist? TBH if the first DVT was unprovoked you should have been seen by a Haematologist to check for inherited blood clotting disorders. Do you have a close relative who's had blood clots? Seems like they haven't referred you to a Haematologist this time either.

Maybe the Consultant radiologist (it wouldn't be a radiographer who cancelled it) cancelled the CT request because other simpler investigations haven't been done first? There's a significant dose of radiation involved in a CT and if he feels that the clinical reasoning behind the request is flawed then he won't approve it.

The NICE guidelines only recommend a CT abdo and pelvis in specific situations ie in a first ever unprovoked DVT in people over 40, and even then only after other investigations have been performed and no evidence of cancer has been found. Are you up to date with any helath check appropriate for your age eg cervical smear, mammogram? Have you got compression stockings to wear and a follow up appointment? I would agree that you should contact the secretary. Apart from the NICE guidelines, it's possible that the Trust has a DVT /PE clinical pathway which they should be following. Try googling "trust name DVT clinical pathway".

From the NICE guideline

<b>Investigations for cancer and thrombophilia testing

Investigation for cancer

The National Institute of Health and Clinical Excellence (NICE) recommends that people diagnosed with unprovoked deep vein thrombosis (DVT) who are not already known to have cancer should be offered the following investigations for cancer:

A physical examination (guided by the person's full history).

A chest X-ray.

Blood tests (full blood count, serum calcium, and liver function tests).

Urinalysis.

NICE advises that further investigations for cancer with an abdomino-pelvic CT scan (and a mammogram for women) should be considered in all people aged over 40 years of age with a first unprovoked DVT who do not have signs or symptoms of cancer based on initial investigation.</b>

[debbiewalker in reply to misswoosie]

Hi sorry ...yes radiologist it was. I work in pathology and my first DVT was not picked up by my workplace. I had a swollen calf and a colleague said I should get it checked by ED, ED referred me to the ambulatory team who started heparin as D-Dimer was sky high and all things pointed to a DVT. A Doppler scan a week later did not pick up a clot and so discharged. As I was still having problems with swelling a week later I thought it must be due to something else and so visited my GP who requested another D-Dimer which again came back as high and this time he referred me the next day to the hospital I live in the catchment area for - they then identified the DVT from a second Dopler scan and I was on Warfarin for 6 months as the DVT was in the popliteal being at back of knee. I saw anticoagulant team but only a doctor who started me on the Warfarin and I didn't think that was a haematologist. I came off warfarin in Feb 2018 and had a few scares since but put up with swelling as after another false alarm felt a bit neurotic to be honest. Then in August the swelling was significant and I felt I couldn't overlook it. Interesting thing this time was that the D-Dimer was very low and they only did the Doppler because of previous clot 'to be on safe side'. Hey presto the scan showed another clot. I am under a haematologist with the anticoagulant team but I have never had a consultation with him. I suppose in answer to your question at this point I have had 2 confirmed DVTs with never any investigation into cause and so I was annoyed that the scan was cancelled. I understand the reasoning about radiation etc and why the radiologist may have cancelled but surely at the very least it should have been discussed and reasons put forward. I feel I would like to have an understanding of the cause of the DVTs. I am over 40, had breast screening, recent chest X-Ray and having read NICE guidance a few times seem to meet the criteria. But I will go back to my proactive GP and see what he thinks as they are very good at my surgery.

It all just seems a bit slap dash.............I am not used to being on this side of the counter though and so maybe this is the norm.

Thanks for your advice.

[misswoosie]

I like slap dash! Disorganised. I'm an ex nurse and previously worked for 3 years in a hospital based anticoag' clinic managing about 2,500 patients. So "organised" anticoag' care!

It's not easy being on the other side. I've had poor experiences with myself (hospital where I worked misdiagnosed a ruptured, ovarian cyst as a pelvic infection and if it hadn't been for me demanding an ultrasound I would have ended up septic) and both my elderly parents more recently. father was started on Apixaban (whilst an inpatient) for stroke prevention and given no written information re the drug or what to look out for when you're anticoagulated. When I called the ward the nurse , very reluctantly as she didn't seem to understand the need, agreed to send a leaflet out of the drug box ("Well I'll have to open a new box to get one"!) in the post.

Re the NICE guidelines, the only thing I can see is that this is your second unprovoked DVT, not your first, BUT how does that work if they didn't do a CT when you had your first?

The radiologist may also have decided that the CT wasn't warranted because the request didn't come from a Haematologist. Additionally, the Haematologist may be under the impression that you're going to get a CT scan, as the request is probably documented in your notes. He most likely won't be aware that the request has been cancelled.

Some, but not all, of the blood tests for inherited clotting disorders can't be done whilst someone is on warfarin , if my memory serves me correctly as it's 12 years since I worked there, appointments with the Haematologist weren't arranged till after the end of the treatment. Just had a very quick look and it seems to be the same for the NOACs.

Now you've been told that you're on anticoag' for life I think a Haematologist would probably want to do the tests now and hemay also re-request the CT with more info on the request form. Sometimes Dr's in ED are rushed and don't put all the relevant clinical indications down.

Another thing is do you have compression stockings? You don't say where the clot is but NICE recommend them for distal DVT's ie below the knee. Hope you're elevating your leg when sitting and not sitting for too long at any one time.

If the anticoag' clinic is hospital based then I would also contact them and raise your concerns. If you don't get anywhere fast then contact PALS.

Hope this helps and take care of that leg, especially of it's the same leg as last time.