Non small cell carcinoma in lung.

[jacic64]

I have recently been diagnosed with non small cell carcinoma of the lung by the Royal Brompton. They sent a letter to my GP requesting an urgent 2 week referral to local oncology, GP surgery said they hadn't received the part of the letter asking for the referral. I emailed them a copy as they requested, they said they hadn't received that also. I physically handed them a copy of the letter, after much back & fore with the receptionist she agreed to hand it to the GP that day. Letter was sent 22nd August, finally actioned 5th September.I've received confirmation from the hospital that I have been referred to respiratory clinic with suspected lung cancer. Is this the way they usually do this, biopsies confirmed cancer not suspected it. Does the respiratory clinic have to refer me to oncology or can the GP do as requested & refer me. I'm totally confused & really don't want to wait for another 2 week referral if I've been referred to the wrong department!

[555Violet555]

Maybe different trusts operate differently, but my process was the other way around- from GP to secondary care.The coordination between respiratory to oncology teams was direct, not via GP.

I hope it'll be sorted for you quickly.

[jacic64 in reply to 555Violet555]

Thank you, I was at the Royal Brompton for screening for a clinical trial. It was my third round of screening for various trials to help with emphysema and chronic bronchitis. The screening for the last trial is what picked up the nodule had almost doubled in size in 6 months. Thankfully within days I went back & had ebus bronchospic biopsies taken. I had the results again within days, I wasn't expecting cancer to be honest as I've had so many chest infections. Feel a bit silly now as I was worrying about the side effects of the antibiotics I would have to take if it were an infection! The Brompton referred me back to GP for onward referral to local oncologist.

[Mauranne]

Hello Jacic64

Sorry to read you have been diagnosed with NSCLC. I was diagnosed with this whilst having treatment for anal cancer. I went to the chest clinic at Croydon University Hospital, went back for lung biopsy and was then seen by a surgeon from St George’s Hospital in Tooting specialising in lung cancer. It all happened quite quickly. My VATS operation to remove the lower lobe of my lung was carried out at St George’s. I was lucky and didn’t need chemo or radiation. My recovery went well and didn’t take too long. Unfortunately my anal cancer continued necessitating an enormous amount of further surgery and chemoradiation at the Royal Marsden in Chelsea. Recovery from that took well over a year but I’m happy to say I’m now OK.

You don’t say you have an appointment date but if you have already had a lung biopsy confirming cancer then you will be seen quite quickly by a doctor to discuss your treatment, namely surgery or chemo or radiation or a mix. You will also probably have some special respiratory tests if you haven't had them already which are quite straightforward and nothing to worry about.

I have to say your GP doesn’t impress me. It might be an idea to keep a close eye on your dealings with them. I would also recommend you take up the option for copies of letters from the hospital to be sent to you and not just to your GP.

Regarding your letter from the hospital acknowledging your referral for “suspected” cancer it is probably their standard letter. It’s odd they haven’t given you a date to see someone. Ring them if you’re worried.

I wish you well and hope you get a plan sorted soon. The worry and anticipation is the worst. There are many good stories about lung cancer these days, hold on to that thought.

Best wishes

Mauranne x

[jacic64 in reply to Mauranne]

Thank you for the reply, you've really been through the mill. It sounds very positive re your lung and anal cancer treatment, so glad to read you're doing well now.Unfortunately I'm not eligible for lung reduction surgery as I'm high risk of perioperative mortality due to severe emphysema. I'm going to call the respiratory clinic later to enquire whether I've been referred to the right department. I really don't want to have more biopsies if not needed as I have been really struggling since the ebus biopsies. Obviously if they have to take more I will get it done. Really grateful for the clinical trials as they found it quite quickly.

My GP surgery is usually very good but they seem to drop the ball when getting letters from the hospital if they haven't referred me. I've had to chase them so many times & been told off by receptionist for badgering them a couple of times. I think the practice manager could be my next step for a chat.

[JanetteR57]

Sorry to hear you're being given the run around. I think the issue has been that we assume the hospital is better connected that it is.

Taking part in clinical trials/screening is usually separate from 'usual care' for conditions and maybe why this confusion has arisen in their system.

You're correct, many people are referred by GP with suspected cancer to a Trust who start investigations which would usually include imaging and biopsies by ebus/bronchoscopy before confirming any diagnosis then referring you to the relevant consultant based on the most appropriate treatment. That would seem unnecessary if you've already had those by a trusted London hospital. GPs are rarely involved in cancer care once a patient is within the secondary care system as it's such a specialist area although patients may involve them for other conditions or for medication for side effects or repeat prescriptions.

Lung cancer in many hospitals is led through their respiratory department with a lung cancer lead. This person often sees the patient first with any imaging results to request other investigations such as EBUS/lung function (the latter usually if somebody is to have surgery) Once all results are in, a multidisciplinary team discuss those at a regular meeting to ascertain most appropriate clinical lead/treatment. If surgery, the lead consultant is usually the surgeon, if a systemic anti cancer therapy like radiotherapy, immunotherapy or chemotherapy /targeted agents are appropriate, the lead consultant would be an oncologist. If you don't know who this is, phone or check their website as lung cancer leads are usually detailed against respiratory or oncology teams then ask for their secretary to contact.

Many like me, are found during A&E/emergency admission when, like yours, the pathway falls apart too.

Mine took months despite the chest x-ray showing a 'lesion' in my left lung at my first A&E presentation yet I was discharged, readmitted the next day, misdiagnosed as uncontrolled asthma and kept in for a week,, referred for CT 2 weeks after discharge but the scanner broke down so another few weeks passed, then a PET scan, then appointment with surgeon pulled forward once PET results in then surgery removed half my lung and 7cm tumour then another month to confirm diagnosis of non small cell lung cancer. That was in Jan 2011 - I was back at work and swimming by the end of March 2011.

Treatments and processes and outcomes have changed so much since then.

Even if ineligible for surgery (as most UK lung cancer patients are due to late detection which is why screening pilot studies were introduced to detect them earlier), there are other treatments including SABR (ablation - a form of radiotherapy often called cyber knife from the machine used), and other treatments.

It's good you've had a biopsy as many treatments rely on pathology results to determine the most appropriate treatment based on any tumour mutations for which there may be targeted treatments available. I never had a biopsy as mine showed so clearly on all images and as months had been wasted and it had to be removed anyway, they sent it away to the lab for pathology after surgery and I had to wait almost a month for the results.

I've been involved in lung research and screening for years and know many people have lung nodules - the majority of which are harmless like moles on the skin. There are strict protocols for monitoring them - which it seems is what's been done at Royal Brompton for you.

As you've already had many of the investigations including EBUS biopsies, it should not be necessary to send you back to the GP to refer you to a respiratory consultant - they should refer you directly into the lung cancer pathway at the relevant Trust.

I'd suggest contacting the respiratory consultant's secretary to explain so that neither they, the GP nor you waste more time. I'd also suggest contacting the lung screening trial team for them to re-examine their process. Not everyone sees an oncologist and delaying somebody with a confirmed diagnosis from a biopsy back through a 2WW referral via a GP is wrong according to the lung screening protocol or national optimal lung cancer pathway.

Hope you get some answers soon - and highlight to the respiratory consultant how the current screening project appears to be failing patients if this happens to others too.

In the meantime, this information may help you.

Don't google as so much information that comes up is inaccurate and outdated. Roy Castle lung cancer foundation offers trusted updated information on every aspect of investigations, treatments and living with lung cancer on its website and phone/online/group support.

Good luck.

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

[jacic64 in reply to JanetteR57]

Thank you so much for the detailed reply. Happy to read you got sorted after the shaky start.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello jacic64 and welcome to our forum.

This must have been very shocking, screening for a clinical trial, not at all what you would have expected to hear.

Each NHS trust has different pathways for oncology referrals, I would request a face-to-face appointment with your own Gp where you can directly discuss the results of the biopsy’s and what the next steps are. As JeanetteR has said I would have thought that the referral should have been made by the trials team I would contact them to clarify. If you have not already been referred directly your Gp will then be able to arrange for oncology review. I below a link to our managing your lung cancer diagnosis booklet.

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

You are welcome to contact us to ask any questions or have a chat, you can call the nurse helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email ask the nurse at [e-mail]

Kind regards

The Roy Castle Support Team

[jacic64 in reply to RoyCastleHelpline]

Thank you, the leaflet is really useful. I have checked with the Brompton and they have referred me back to respiratory team at my local hospital too. I count myself lucky that the clinical trials team found my cancer so quickly. I've recommended the trials where appropriate on the COPD forum here as well.

[Kazzacrazy]

Hi After my ebus the hospital referred me to a surgeon then after my op he referred me to the oncologist. I hope you get some answers soon. I'm on a fb group which I find easier to navigate than this forum no offence to anyone. I can send the link if you want it xx

[jacic64 in reply to Kazzacrazy]

That would be fab thank you. I will still refer back here but some FB groups are great, I'm on a couple for COPD, I tend to shy away from the doom and gloom groups so a recommendation is definitely good for me.