Given clear ct scan but it wasn't true

[SunshineM]

I had a lobectomy last March, 20mm metastases after bowel cancer. Got follow up ct scans May 22 and August 22, told they were completely clear. Had ct scan Feb 23, told chest lymph nodes enlarged. Asked for copy of ct report and the lymph node issue was noted in the previous ct scan. I have at least 3 enlarged nodes, which have grown from 8mm to 11mm. I feel so upset that I wasn't informed of this after the previous ct scan. I haven't got an oncologist. Now being sent 100 miles for Pet scan. I feel I can't trust the hospital. Called local NHS Macmillan service in August 21. No one called me back. I eel like I'm sitting in death row again.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello SunshineM

Welcome to the forum, this understandably will be a difficult and distressing time for you and your family.

I am sorry to hear that your lung nodes have grown since February, often on CT scan a node may look enlarged, this can be due to many reasons including inflammatory changes and infection and of course it can also be a indication of cancer. If the nodes are small sometimes medical staff may want to leave them, as they are to small to biopsy and this can cause a false negative results, the plan would be to monitor regularly with repeat scans. This is a difficult time as until you have further investigations there is nobody that can provide the answer to the cause of the enlarged nodes.

Once you have been referred to an oncologist they will be able to talk you through the investigations and what you can expect, your Gp will also have a copy of all your results and can discuss them with you.

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

These range from diagnosis, staging of lung cancer, treatments and living with lung cancer.

This link will take you to our booklet on 'Managing your lung cancer diagnosis'roycastle.org/app/uploads/2...

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/

The Maggie’s centers are a great place to have a cuppa and a chat, they provide practical, financial and emotional support; maggies.org/ These centers also provide a counselling service.

We offer a one off grant of up to £150 for anyone with primary lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

To qualify for the patient grant, the lung cancer has to be a primary and it is means tested.

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

If you would like any of our booklets posted out you can request this online or send us an email to [e-mail]

We hope you hear from others in the forum and find support and encouragement.

Kind regards

The Roy Castle Support Team

[SunshineM in reply to RoyCastleHelpline]

Thank you.

[Gymbuddie in reply to SunshineM]

I’m so sorry to hear about your dilemma. You must be quite angry and most importantly the trust has been broken. However moving forward try and get all information you need and if not satisfied get a second option. Please try and stay strong.

It took the Drs 7 months to diagnose I have lung cancer with mets in 7 parts of my body. It made me angry but I just get on with it as it just eats you up.

[Looby19]

my husband was told 3 of his scans showed stable so carried on with maintenance chemo then after a scan showing large growth the oncologist had all scans checked and the cancer had been growing from dec to July not stable

Like you he felt as he’d been left and in no man’s land

Hope your oncologist gets you back on track soon xx

[JanetteR57]

Sorry to hear of your latest situation - it's common after surgery to move into 'surveillance' as check up - and many of us never see an oncologist who are usually assigned when systemic anti-cancer treatments are offered (like chemotherapy, radiotherapy or immunotherapy) rather than surgery.... I remember feeling similarly lost. Not all enlarged lymph nodes on images are sinister - and surveillance is that - i.e. if something shows that isn't correct, it should be referred on for further investigation.... as your lungs were affected by your original bowel cancer spreading to your lungs, I'm wondering whether you were given a clinical nurse specialist? I never was although it is part of the national optimum lung cancer pathway now - but still there is widespread variation across the UK and it is 12 years since my lobectomy.

Lymph nodes can enlarge with infection and inflammation so often a repeat scan can be requested or as you're finding sent for a different type of scan to look at in more detail.... fingers crossed it's not serious but that doesn't mean it won't be messing with your head and creating anxiety. Macmillan and Roy Castle lung cancer foundation offer nurse led helplines and I suspect bowel cancer charities run similar too. hope you soon get the answers you're seeking - it's easy to suspect every note we read on our file after a cancer diagnosis means it's all related but it may not be....

I remember being very alarmed reading I had atelectasis (collapsed lung) and the hand surgeon I'd been sent to asked me to ask my respiratory consultant whether it would prevent him proceeding with surgery but the consultant ant said it was common after a bronchoscopy which I'd had recently and was nothing to worry about. I had similar concerns when told the liver cyst on the CT was stable and I said 'what liver cyst' and told it has been there since my first CT before my surgery but nobody had told me.... these are often considered 'incidental findings' and observation or no action if too small are the usual standard of care. good luck.

[SunshineM in reply to JanetteR57]

Thank you for your kind words, I appreciate you replying.