Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

Not sure what to do

Thehighlander
Posted by

Hi , the wait can normally be between 2 - 4 weeks but could be quicker depending on the priority put on the request by the consultant. My Chest Consultant is also a very good friend and he showed me how the system we use up in the Highlands of Scotland works.

Each CT request is given a Red, Amber or Green classification so once your Consultant puts the request into the system the Radiology department will act on the level of request, so say a Green request can take a good number of weeks for the appointment to be arranged and the CT done. CTs when you are hospital can be done very quickly but a Outpatient Red Flag can take a week or so.

The results are then reviewed by the Consultant Radiooligist and report completed and put into the system. This actually can be done on the day, but normally a few days. The requesting Consultant will see all his/her reports come up on the central system. Again they will show up on the report system with all the Red flags at the top. So logically the consultant will work through the top priority reports and move through the list but if more Red flags appear it will take time for the consultant to go through the work load. And to add to the time some reports have to wait for a weekly MDT meeting (Multi Disciplinary Team) to review the correct treatments.......... then letters...... then appointments......

This is a long description but it's how it works. If someone goes down the Private Route CTs will often be reported on the day.

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

julio
Posted by

Good luck Highlander,let me know how you get on.

Thehighlander
Posted by

Hi , I do hope you are doing good. I am doing great, my post was just an answer to a question about the length of time it takes for a CT to be done and the results given to the patient, often a long wait :( 

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

ItCouldBeWorse
Posted by

Hi all,

abit of an update. You are right Highlander regarding what priority the consultant puts on the CT request. I actually work in the NHS as an IT Architect and I did notice the consultant put a red request on my CTorder - this was when I saw him on Wednesday.

Yesterday morning I got a call from my local hospital asking if I could come in for the CT scan later that afternoon - so thats the day after the initial request..

Apparently there was a cancellation so they could fit me in.

Anyway I had the CT scan done yesterday and they did say that it will take a few days to be reviewed and a report written back to the consultant and he will then discuss the results with me.

 do have an appointment with the consultant on the 21st Feb - but the CT nurse did say they might bring this forward if they get the results early - but - thats down to how busy the consultant is etc.

I am glad I managed to get the CT done early - just lucky I guess..

Cheers all..

Thehighlander
Posted by

Hi , so the system does work ;) everything crossed for a positive way forward.

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

ItCouldBeWorse
Posted by

For people who may stumble across this thread who might be starting on a similar journey there are a couple of things to bear in mind..

1. Just because you have been put on the 2 week path it doesnt mean you definately have something nasty. A GP can only do so much in a 10 minute assessment and they feel your symptoms require more expert analysis. A GP might refer as there 'could be' a possibility not a probability of something nasty

2. Consultants will provide that expert assessment and may ask for tests to be done. At this point there are many many more possibilities that are more likely than something nasty. Although my consultant made a red request for my CT scan there are stil benign conditions that are more likely than malignant ones that still need a red request. For example there could be stones developing that will cause me significant pain etc if left too long.

3. Everyone is different and until all the tests have been done and a plan is put in place, it is important to remember that opening page from the Hitchhickers Guide to the Galaxy..

Stosh
Posted by

Once again, thank you, TheHighlander, for some cogent information!

Being in the US, I have a combination of public Medicare and private supplemental insurances for the coverage gaps, and that is working well for me as to prompness of treatment and test results so far.


As an aside, I'm in my 8th day of Cycle 2 (R-CHOP) and will be going into hospital next Friday for my second HD-MTX treatment. Other than some eye fatigue and minor aches and pains, I've been holding up well.


I'm happy to have discovered this Forum and wish all here better health and full recovery!

ItCouldBeWorse
Posted by

Hi All,

Sorry for not being quicker on an update but i thought i'd give you the latest news from my world..

So I saw the Urologist to discuss my CT results and he said there was absolutely nothing there (despite him saying he could feel a rubbery lump)

One can only assume (hope) that what he felt was a fatty mass and with his 'firm handling' during my examination he managed to disperse this mass.

He was a bit perplexed and did say form me to keep a close eye (or finger) on the area and if I did feel anything then to give him a shout and he would fit me in.

So all in all good news as the lump I felt can no longer be felt, and the CT scan confirms this.

The only thing I am left to deal with now is a recurring Basal Cell Carcinoma (regrowing a year after surgery to remove it) and a large 4.5cm x 3cm red dry scaly patch on my right temple. I guess the atch is some sort of dermatisis but i'll get the Dr to confirm this when I see them regarding my BCC.

I hope you are all doing well - and thanks for your time reading / responding to my questions..

Bless to you all..

Thehighlander
Posted by

Hi  - I would take this as a very good result with regards to the Lymphoma investigations and it was great that the system worked well for you.

So next is to get a satisfactory resolution to your BCC issue, at least this one is visible ;) 

All the best for your future and I do hope that you stay lump free in the future.

Highlander ((hugs))

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

ItCouldBeWorse
Posted by

Hi All,

I thought I would give you all an update - plus I have a question :)

Just to recap - I had large groin nodes that I had a CT scan on - this came back unremarkable. I also have skin cancer removed 18 months ago but it started to grow back, so not removed completely. The skin lession is on my left side of chest and has now started to ulcerate. I am waiting to see a derm to get this sorted out.

But - about 3 weeks ago I noticed a large lump just where my shoulder meets my neck - I think its called the Supraclavicular region.. This lump is quite noticable - Its like having half of a golf ball stuck to my neck. :(

It doesnt hurt and isnt hard - firm to squishy. The question is that all of my recent problems (groin, skin lession, and lump on neck) are all on my left side - does this matter for Lymphoma ? or is this not relevant ?  I do have very itchy skin (had this for a few years) and am going back to the GP's in a week but would like to run this past you guys prior to the GP's appointment.

Cheers

johnr
Posted by

Hi, as you know we cannot diagnose as we don't have medical training, but in general terms would say if the node is bigger than 2cms head straight to the gP to get it checked, it often turns out to be nothing, but always better to play safe especially given the skin cancer issues. If your happy to wait a week fine, if not ring and ask for an urgent appointment. 

john

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

Thehighlander
Posted by

Hi again , first I agree with John on the lump..... If in doubt get your GP to check it out ;)

Its been 2 month since you talked about seeing a Dermatologist. I would think about getting your pointy elbows on and push this as you don't want your referral to slip through the NHS system.

Highlander ((hugs))

Mike - living my new life and trying to make a difference

'Some journeys take us far from home. Some adventures lead us to our destiny' C. S. Lewis

SCT    NHL    T Cell     Community Champion

ItCouldBeWorse
Posted by

Thanks for your replies guys..

I did call the surgery and they have agreed to see me tomorrow at 18:50 !

BTW I did measure the mass and its approx 4.5cm but like I said not hard.

I'll keep you updated..

Cheers

Sleepyzz
Posted by

In response to Stosh's January question about NHS scheduling, I can report that I recently had a blood test,  an MRI scan and CT scan done in a private hospital in SE Asia, followed by a consultant review of the results,  a letter  explaining the results and copies of the scans on a CD issued, all done and given to me on the same day.

Mind you this all cost me money;  not free like the NHS. 


As far as I can see, all it took was for the test results and the consultant and the hospital's billing system to be on the same database, and for the consultant to still be in her oiffice and in control of all the data at the time the scans were uploaded to the system an hour or two later.


For the same process to take a month or more in the NHS must surely indicate a ridiculously inefficient system in desperate need of intelligent management review, mustn't it?


If this is normal  pace things get done,  it's no wonder the NHS can't cope with the demand.  It's not so much money they need as an intelligent new approach to the systens they're stuck with.


P'raos it's worth adding that my experience wasn't in a fast modernised expensive country.  It was in a developing country where lots of things aren't so well organised yet.


    +   John

ItCouldBeWorse
Posted by

Sleepyzz,

Its true there are many systems in the NHS that are old and not integrated - however I do know there is an initiative to address this acorss the whole of the NHS and not just each individual trust - the bad news is that this will be very complicated indeed and will take around 5 years to implement!! - One other thing to point out is that there are probably more people utilising the free health care system in the UK rather than a country in Asia that you need to pay for - so investments are more likely to be targeted rather than the whole spectrum of healthcare.

@Highlander, et al. I dod have my appointmnet with my GP yesterday regarding my mass above my collarbone - He did take quite an interest and after a good prod he said it doesnt feel like cancer as it wasnt hard - however he dissmissed it being a lipoma and talked about lymph nodes in the area.He is arranging a scan for me to get a better picture of what it is.

Cheers