update respiratory consultation

[mishamilo53]

So met with respiratory consultant this afternoon , he’s explained that my tumour is in top right lung but that two lymph nodes alongside my windpipe appear to be affected as well as the lymphs bottom right lung  …. I’m devastated …. I’ve been referred for petscan and EBUS ….. I’m in complete shock they gave us that little bombshell then sent us on our way to wait for petscan / EBUS dates etc …shocking ..so very frightened x

[IanM1957]

Hi Elly,

I'm sorry the diagnosis wasn't what you were hoping for/expecting.

I didn't have an EBUS as part of my diagnostic procedure so I'm afraid I can't advise on what to expect.

I would expect that things will start happening very quickly now and you'll have appointments for the PET Scan and EBUS before you know it.

I hope you have a good support network around you - close family and friends you can talk to any time just to act as sounding boards and offer you encouragement and support.

I suppose it's times like this when the mind could go into overdrive so it's important that you have people you can talk to - The Roy Castle Lung Foundation has an "ask the nurse" service where you can speak to one of their nurses for advice/guidance/support - roycastle.org/help-and-supp...

All the best and please do keep us all informed on how things pan out.

Ian

[mishamilo53 in reply to IanM1957]

Thanks Ian I was shocked I wasn’t expecting that certainty before petscan etc and really wasn’t prepared for that level of information today … and wasn’t really given anyone as a contact to discuss anything afterwards ….. thanks for your reply I will certainly use the support resources x

[Hope2782]

Hi Elly the 1st consultant appointment is very frightening. I was in the same position as you at the end of February this year. There is a defined pathway of tests and PET scans, EBUS and CT guided biopsies are part of the pathway. The EBUS whilst not pleasant is OK, and you will be well looked after at every stage. You should have a clinical nurse specialist who will support you as per the information from RC, please do read all the information possible also on cancer research and Macmillian sites.

I had a lobectomy and reaction of lymph nodes at Papworth in April and have Egfr exon 18, so just coming to the end of adjuvant chemo, and will progress to targeted therapies as its a rare mutation not easily treated.

Take one day at a time, the MDTs at hospitals meet almost daily to plan patients tests and treatment. The worst part is the waiting for what will be the next test of which there are many.

Keep positive, if you need anything please private message me.

BW

Hope

[mishamilo53 in reply to Hope2782]

thank you Hope for your kind reply , I guess I just panicked about the windpipe lymph activity , and because the whole conversation didn’t sound too hopeful . I honestly left feeling like a dead woman walking with no hope ….. I’ve put my positivity pants in this morning , well more denial pants really ! Thank you again for your support especially as you are going through your own journeys on here x

[JanetteR57]

so sorry to read of your situation and poor communication - although there is often a lot of support at the time of being told the official diagnosis and treatment plan, this in between limbo stage is one of the most anxious we face. I'm not sure which is worse as I'd been reassured for months after being hospitalised and misdiagnosed that my lung lesion that showed up on chest x-ray at A&E and my symptoms were uncontrolled asthma although it felt completely different to any asthma I'd had and didn't respond to asthma meds. After my CT and PET, things moved quickly and I saw a consultant who said my treatment (no options) would be losing half my lung together with the large mass at the top of my lung and as it showed so clearly they wouldn't waste any more time with a biopsy but would send it off to the lab for analysis. I had my op in the December (having been hospitalised after A&E in the October) but didn't get a diagnosis until January although by the time I saw the surgeon he'd said it was suspicious for lung cancer. That was in 2010/2011 and things have changed beyond measure in the lung cancer research and treatment space. Try not to google as much of the information is outdated, inaccurate and from other countries so can confuse.

I've been involved in lung cancer research since 2013 and now appreciate even more the treatment I had - the majority of patients in the UK are detected too late for surgery to be an option so most are treated with a variety of treatments dependent on the results of the various diagnostic tests and many have combinations of treatment types.

Trusted information can be found on Roy Castle lung cancer foundation website and it's regularly updated by clinicians but even with regular updates, it's hard for them to keep as there are always new treatments being introduced. Every type of treatment has changed since my diagnosis/treatment - even the surgery I had is mostly now done via keyhole method. However there is so much now that they have to find out which is why they do the EBUS and PET scan that it's easy to be baffled by the alien terminology at a time of shock and disbelief. Take it an hour or a day at a time at this stage.... ask questions or write down any questions you have. Roy Castle charity also offers a nurse led helpline and online group sessions, phone sessions and online or printed information that can be posted.

Most patients are allocated a clinical nurse specialist - a specialist lung nurse but for many this doesn't happen until all the results are in and you get an appointment to see the consultant who will lead the discussion about treatment options.

thinking of you at this challenging time.

roycastle.org/about-lung-ca...

[mishamilo53 in reply to JanetteR57]

thank you Janette just trying to keep my positive pants on , think it’s more denial at the stage though ! X

[Elt79]

Hello Elly - the start of this journey we are all on is very scary - I well remember being told it was also in my brain and adrenal gland then having to wait for further scans, biopsy etc. It felt as though my world was ending. But despite my poor prognosis it will be 4 years next month since my diagnosis and I am doing well. I pray you get these appointments swiftly and then treatment etc can be planned for you. As as been mentioned once they have all the results you should be allocated your specialist lung nurse who will be able to give you support. Try to stay strong and positive, very hard I know and I wish you all the best going forward x

[mishamilo53 in reply to Elt79]

thank you for your kind reply , nothing to do but be patient I guess but it’s so so scary …. They asked me yesterday why I thought my BP might be out of control ?!? Hmmmm let me think …… x

[Elt79 in reply to mishamilo53]

😂 I wonder!!! X

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mishamilo53

Welcome to the forum and so sorry to hear you have lung cancer. You should have been allocated a lung cancer nurse specialist who could have gone over the information that you were given. It is understandable that it has left you feeling quite shocked and overwhelmed.

You can request a lung cancer nurse specialist through your oncologist or GP. There have been excellent replies from others in the forum and I have added some links that may help.

This link will take you directly to our booklet on 'managing your lung cancer diagnosis' it details the investigations, the types of lung cancer and treatment options: roycastle.org/app/uploads/2...

All our information booklets can be found on this link:roycastle.org/help-and-supp...

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...

It can feel quite isolating having cancer and please know that there are plenty of support available, including the forum.

You may have more questions after your scans and please know you can contact us 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

[mishamilo53 in reply to RoyCastleHelpline]

thank you x