How long to get a lung diagnosis and how frequently to chase?

FormerMember
FormerMember
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Good evening - I've been browsing the forums for several months but my first post. Hopefully it's in the right place, and apologies if not.

I don't have a diagnosis as yet, the short version of my journey to this point is as below (fuller description in my profile):

I'm an ex smoker in early 50's so assume high risk.

Early Feb:

  • Coughed up very small amount of blood - x ray taken and referred for CT.
  • CT showed two 4mm nodules and bilateral ground glass changes. Advised for follow up CT in 3 months to see if ground glass had cleared up

End May:

  • Getting mild discomfort in left shoulder - really mild and quite possibly muscular/stress/anxiety
  • Second CT scan taken

Mid June: 

  • At follow up, respiratory consultant said the ground glass hadn't cleared up, however it hadn't grown either. 
  • Some small opacities in top of left lung, and a larger opacity in lower right lung
  • Since meeting, have started to get discomfort in right hand side now - again, quite possibly muscular/anxiety etc.
  • Also seem to have started getting tinnitus in left ear - probably stress/anxiety.
  • I was advised that a PET scan would be organised in the following fortnight with a follow up 2 weeks after that (i.e.mid July).

Nothing arrived in the post up until today re the PET scan (and it's been a week), so I've tried calling secretaries and so on, but it's just endless answerphones.

I've got to be honest, I'm not coping very well with the anxiety of it all. I am probably being over dramatic, whilst my partner is very dismissive which causes further anxiety.

I'm working at home permanently these days and whilst it has it's benefits such as allowing me to take the kids to school, it also leaves me alone with my thought for far longer than is healthy I think.

Part of me thinks:

"Well they are not rushing things so in comparison to others' experiences I've read they can't be too worried about what it is",

then the other part of me thinks:

"What if they have missed anything/forgot/just too busy with covid".

Whilst I'm not looking for any medical opinion here, it has been good for me to write it down - helps gather the thoughts.

I know these people are professionals, but letters get lost etc.

Is there any rule of thumb with these appointments?

Would you expect a letter to be sent within a week with a new appointment or is that a bit too quick?

Many thanks for reading and peace to all.

D

 

 

  • Hi and a warm welcome to the Online Community. I'm sorry to read of the problems you've been experiencing and the lack of answers when you want them yesterday. It certainly doesn't help when your partner is dismissive, any possibility of cancer diagnosis is stressful so you need people around you who understand what you're going through so joining this forum is the best thing could have done. 

    I myself have a different type of cancer so I can't offer you any advice I'm sorry to say so I'm going to recommend you join our supportive Lung cancer group where you will find the support group you need in these difficult, anxiety filled times. I've also tagged the Community Champion of the group who will no doubt be along to welcome you.

    The Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

    Sending you welcoming hugs B xx


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  • FormerMember
    FormerMember in reply to MrsBJH

    Many thanks for the welcome and kind words MrsBJH!

    I'll hook up with the other forum as well.

    Bit of a rollercoaster all of this!

    Peace to all,

    D