They are investigating lymphoma, right?

[OddBoots]

I am trying not to google too much but my dad is having some investigations.

He was prompted to go to the GP as he was a platelet donor and his iron levels were dropping, he was also getting more tired and forgetful but at they were in the process of some major house renovations that may be unrelated. He has also been losing weight and having night sweats.

He has had an endoscopy and colonoscopy that showed some minor things but nothing that would explain the drop in iron.

He has had further blood tests and his iron continues to drop and his ESR is high (60) and rising. An abdominal CT has been done and as a result of that and the blood test the GP has phoned him and said some lymph nodes have shown up (exact wording unclear as it was a phone call while he was shopping so took him by surprise) so they have made him an urgent referral to the haemotologist.

I know there are likely to be many other possibilities but is the reason it is an urgent referral likely to be because they think is could be lymphoma?

I am trying to work out if I should try to take the day off work to go with him and my mum to that appointment or if it might be better to save any leave I have in case it is needed later.

No medical advice I'm afraid, but perhaps save your time off for the actual results?

Thank you, I think that I'd probably for the best too.

I think if he's got your Mum with him I would leave it and save it for after the results. I had lots of medical tests last year and generally when its rushed through its a cancer test, most do turn out to not be cancer but sadly some do. Although its scary to be rushed through its good to get seen so quickly. Sorry for your Dad, glad he's got a lovely daughter and your Mum.

It does sound as if lymphoma is a possibility (the symptoms you describe are common to many forms of blood cancer).

What I will say (as a haemotology patient myself) is that some blood cancers are very treatable now. But there is still a lot of info online from before the newer treatments which is way more scary/pessimistic.

So if you can hold yourself back, don’t google but if you want more info, start with a reputable site like Bloodwise.

Try not to fret too much at this stage, though I know the early days of not being sure what you’re up against can be the worst. I hope the appointment goes well and that he and you get answers soon)

Having now seen the CT scan it says the differential is Lymphoma or lymph node spread from a primary tumour so it looks like lymphoma would be (comparatively) good news.

He's had more phone calls, it is slightly complex as he has a quicker option from choose and book getting the scan at a different hospital to our local one so he went there but they feed into a different big hospital so he now has an appointment with a doctor at the scanning hospital on Wednesday, the appointment with haemotology at the local hospital a week Tuesday and another appointment for a PET scan coming from a bigger but specialist hospital a few miles away that was decided at a meeting between the scan hospital and yet another hospital yesterday. It's getting a little bit crazy and I know I can't do every appointment so I am going to have to think carefully.

That sounds very complicated located just from the admin POV.

I suggest he needs a folder of project book, where all letters can be stored, plus a master check list of who needs to be seen, when and where, and he needs to stay on top of it to make sure that everything is happening (and at roughly the right time).

Getting the direct numbers for clinic receptionists can be terribly helpful. As can finding out as early as possible if there is a single person who can be point of contact for everything (including what’s going on with other teams/other hospitals). A good one of those is worth their weight in gold.

The first bit, when you know it’s likely to be serious but you still don't know quite what and don’t have a treatment plan to be getting with, us one of the hardest.