Waiting on confirmed diagnosis and treatment plan

Hi Jchaz

So very sorry that you have cause to be on here.

It was not appropriate for a nurse to contact you with that information regarding the cancer pathway. 

He will need all those tests, especially the bronchoscopy, to establish if it is cancer and what type.  The biopsy will probably be undertaken as part of the bronchoscopy.

The Respiratory appointment will hopefully be the meeting with Lung Team, who will be able to fully explain the process to you and update to on the test results.

We have all been through the testing process.  Although it can be confusing/worrying, it is very much essential to obtain the full picture of what is going on in Hubby's lungs.  If lung cancer is confirmed, the results from all the tests will help the Lung team to put together the best possible treatment plan for him.

The positive is that the tests have been arranged/undertaken very quickly.

Treatment for Lung cancer has come on on leaps and bounds over the last 20 years; new treatments such as immunotherapy, older chemo treatments made kinder so less side effects.  Importantly, lung cancer is no longer the automatic death sentence it once was. Many of us on here are living with/ surviving cancer.

I hope this helps a little bit, and I wish you both the best outcomes.

Kegsy x

We’re in a similar boat although a little further along. We have some results but are now waiting for the biopsy results.

The pain and absence of support at the moment is really hard. We feel like there’s a ticking time bomb inside my husbands body that is about to go off but no one is yet trying to save him.

Has he met with a consultant yet at all? We have had one appointment with a chest specialist but we’re waiting for the MDT meeting to happen once the biopsy results are with them. This only happens on Wednesdays in our hospital. So if the results aren’t with them tomorrow morning we have to wait another week. It’s been a week and a half since the biopsy already. Other results were much quicker.

I agree, it’s really scary. I speak to our consultants medical secretary regularly and she can let us know if the results are there, but not what they are and can arrange an appointment with the consultant to discuss which was automatic in our case.

No appointment with a consultant yet. I think that could be what the appointment letter he had yesterday is for. That’s not until 10th December but bronchoscopy/biopsy is the 28th November so hoping if that is what it is they should have all the results of everything by then.

It’s a scary place being in the limbo and unknown. 
Really helpful to speak to others and hear about their experiences though

I’m almost shocked how quickly everything has happened. It’s all a bit overwhelming at the moment but it’s great to hear from people who are living with and surviving!

I’ve seen a lot of people talking about the advancements in treatment so remaining hopeful

Our initial consultants appointment was three days after it was ‘found’ on an X-ray like yours was. I’m surprised you’ve not had any appointment. I thought it would be the same everywhere. Maybe not.

Then we were told all tests would be done within two weeks, it took four.

We are now waiting for those last results. I thought five to six weeks was bad with the amount of pain he’s in. How long has it been for you so far?

We know it’s in local lymph nodes, but no other spread when PET scan was done 3 weeks ago. That’s what the PET scan and MRI tells you.

Maybe 10 December appointment is your results day?

Also, respiratory might be the consultant’s appointment or might be a Spirometry test? Have you had that yet? 

Timeline has been

Monday 28th October: GP sent husband to hospital for blood clot check and lung xray due to infection- told there was something they wanted to investigate 

Wednesday 30th October: called to come in for a CT scan that evening

Thursday 7th November: phone call to say he’s on the lung cancer pathway and expect lots of tests. There’s some kind of mass and inflammation of the lymph nodes

Tuesday 12th November: phone call to come for a full upper body CT scan 

Wednesday 13th November: Pet scan in the morning. Lung function test in the afternoon 

then Friday last week we got the letter for the bronchoscopy and then yesterday the letter for the respiratory appointment 

but not had a face to face appointment with anyone to explain anything. He’s asking at every test what’s happening and they say they’re just doing the test and can’t tell him any more. Will be at the 6 weeks ish mark by 10th December too 

The timeline seems similar to ours if not a bit faster.

11 Oct in hospital with chest infection. X-ray showed a shadow so CT was booked for next day.

12 Oct Confirmed as lung cancer by EAU doctor.

15 Oct Appointment with chest specialist who told us next steps re tests and that they’d be done within two weeks.

24 Oct PET Scan full body apart from head.

28 Oct MRI Scan on head.

30 Oct results so far via phone call.

1 Nov lung function test.

8 Nov biopsy.

Waiting since then for results, full diagnosis and discussion around treatment plan.

They found it so quickly which I was very impressed about but since then everything seems such a long time.

A good place to look for what to expect is the Roy Castle website or on the NHS website for lung cancer. Both describe each stage of the journey we are on so you know what to expect. Much love and fingers crossed the results are ok for us both.