Hello, I'm new on here

[68mamma]

My wonderful partner was diagnosed with lung cancer five weeks ago. The top of his left lung has collapsed because of his cancer. Up to now he has had a PET CT and bronchoscopy/EBUS,which was 11 days ago. How long does it normally take for a patient normally to receive an appt with the Oncologist. I know they have to have an MDT meeting first.i m just so worried about him. He's on Diazepam and a sleeping tablet,because he suffers with anxiety and hasn't been sleeping. His appetite has picked up a bit,but he's not interested in going into the garden for some fresh air. He's just staring at the tv. I'm so worried and anxious about him at the moment and feel quite lonely. Any dvice greatly received xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello68mamma,

Welcome to the forum, I am sorry to hear your husband has lung cancer, it is understandably a stressful and anxious time for both of you. This time waiting for tests and results is the most difficult time as until they are all complete and the results are available no one can really give you any definitive answers, it's understandable that your emotions will be all over the place.

Normally the results from the biopsy’s will take at least 2 weeks, sometimes longer, after that the team will meet MDT ( multi-disciplinary team) from here they will discuss your husbands case and propose a treatment plan.

Lung cancer treatments have improved greatly in the past ten years with new treatments of Immunotherapies and Targeted Therapies.

This link will take you directly to our booklet on 'Managing your lung cancer diagnosis'

roycastle.org/app/uploads/2...

You should have a lung cancer nurse specialist allocated to you, they are a great source of advice, information and support. If you do not have one this can be requested either through your GP or consultant.

All our information booklets can be found on this link: These range from diagnosis, staging of lung cancer, treatments and living with lung cancer.

roycastle.org/help-and-supp...

As others have said on the forum, many lung cancers can be treated although not always curable. The waiting has its own stresses, however some people find that gathering as much information during this time can be helpful.

If you are looking anything up online, we would advise that you keep to the following websites, that provide accurate and up to date information:

roycastle.org/

cancerresearchuk.org/

macmillan.org.uk/

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link:

roycastle.org/help-and-supp...

Our campaign section provides encouraging accounts from those living with lung cancer:

roycastle.org/campaigns/

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Lushmush88]

Morning, we’re on the same weekly stage as you for my dad atm. Me and my mum suffer with anxiety and it’s been so awful waiting and watching him through this. Not sleeping through anxiety is the worse! I can fully sympathise. I really hope you get some progress soon and he perks up once he knows his treatment plan. What hospital are you under?

I feel your pain. Been 4 weeks since all dads tests were carried out. Fingers crossed, the last biopsy that is needed is ready for his oncology appointment this coming Thursday. The MDT was 3 weeks ago. This one delayed result and subsequent cancelled appointments has really devastated us every week. He’s not got much appetite as it is and he’s been on lots of morphine for his extreme leg pain which has made him so sickly and not want to eat so he’s naturally lost quite a bit of weight (he was already a naturally skinny man) so worried that they then won’t want him to have any treatment!

[Cockailschemocancer]

I’m sorry your on here. Hopefully the advice that has been given will help. Once you know what’s happening you’ll both feel a lot stronger for the plan ahead. Xx

[ArtHopeLove]

Hi there,I’m so sorry to hear about your worrying time & you’re right it can make you feel quite lonely. I’m sure in time your partner will feel more inclined to participate in other than the tv but it’s early days & no doubt he, as well as you, is in shock. My husbands oncology appointment is this Thursday, though it was postponed due to a delay from his neck biopsy results from last week - otherwise it will have been 3 weeks from the Respiratory/Lung Clinic consultation. I do hope this helps & that things start moving along quickly for you. Sending kind regards for a positive few days ahead.

[JanetteR57]

Sorry to read of your situation and anxiety is perfectly natural. it's also natural to have your head spinning towards worse case scenarios. not everyone sees an oncologist - it depends on if lung cancer is detected whether it's localised and can be removed by surgery or requires systemic treatment like chemotherapy, radiotherapy, immunotherapy or targeted agents or combinations of those. I waited over a month for a CT after a 'lesion' showed on my chest x-ray when I turned up at A&E in mid October - the scanner broke down so had to wait for parts, then had the results and sent for another type of scan (PET) then a letter calling me to see a thoracic surgeon about 10 days later but then had a call telling me to go in the next morning first thing to see the surgeon. he told me the large mass had to be removed with half my lung and another few weeks later that was done. in the January I was given my diagnosis of non small cell lung cancer (adenocarcinoma) and a 7cm tumour had been removed. That was in January 2011. I was back at work by March.

I tell you this to hopefully reassure you that lung cancer isn't and wasn't a 'zero sum game'. Treatments and knowledge about the many different types that have emerged in the last decade or so and even more in recent years have proved that different treatments work for different types (determined by yet more tests) so unfortunately all this results in more waiting for the results to ensure the most appropriate treatment.

I became involved in lung cancer research 2013 and was amazed to meet patients who were many years out from their diagnosis and have continued to meet and work with others. Everything treatment type has changed since my diagnosis even the surgery I had is now majority via keyhole rather than open in the UK.

However if patients have known people with worse outcomes these will automatically be dominating their thoughts so distracting and keeping active may help.

One thing I do know is that treatments require a level of fitness which can quickly disappear if only sitting around and thinking more negatively as our mental energy saps our physical strength. there are many resources on The Roy Castle lung cancer foundation website that is a trusted site, regularly updated by clinicians and reviewed by a patient panel on all aspects of investigations and waiting for results. googling can frighten most people as it's full of outdated and inaccurate information and a lot from other countries - so please use a dedicated lung cancer charity or British lung foundation/asthma uk or CRUK, Macmillan (more generic sites with cancer support). Roy Castle charity also offers a helpline (nurse led) for anyone affected not just the patient so maybe you and he would find that useful.

take care. thinking of you both.

[68mamma]

I want to thank each and everyone of you replying to me. I rang the hospital this morning, his MDT was last Friday. He is seeing a respiratory physician this Thursday and a couple of other medical people to discuss the plan they have for him. So will let you know what happens

Huge hugs to you all and sending much love. Xx ❤️❤️