scans

[Sharkypuss]

Does anyone know if an mri is carried out after a metastatic adenocarcinoma diagnosis to check the spread of the disease?

[Bow-19]

I had a brain MRI and thoracic, chest and abdomen CT. I continue to have those since diagnosis. It’s definitely worth writing down any questions that you have and asking your lung nurse or oncologist. Roy Castle Lung Cancer Foundation also have some useful booklets online about being diagnosed. Hope this is useful xx

[Sharkypuss in reply to Bow-19]

Thank you for replying. My husband was doing really well on chemotherapy apart from persistent neck pain which he had two ct scans on at three monthly intervals, the last one being in January. His oncologist didn't look at the scan until mid March and it then became an emergency as he had a met that was putting pressure on the nerves. They apologised and offered him the option of putting in a formal complaint but we decided it was best not to. He has now had his first mri which has shown he also has brain mets and I'm sure if this was done sooner things wouldn't have gotten so bad.

[Bow-19 in reply to Sharkypuss]

Sorry that he has brain mets. Since I was diagnosed with brain mets I have had three monthly and occasionally two monthly brain MRI scans. On occasions my CT scan has also included my neck. Hope your husband has a plan in place to treat the brain mets x

[Chas123456]

Hi,I am part of an EGFR mutations support group. A few of us met yesterday for a social. This came up. Our take was it depends on the NHS Trust. I think in the US it is the gold standard. Here NICE guidelines rule. Some of these are mandatory, some discretionary I think. The latter are a lot to do with money. One member challenged her Oncologist on this getting the reply, "you can have one if you want to" !!

I asked one of my team of 4 Oncs about it. She inferred the risk of more scans was higher than the blurb on the handouts say! A bit shocking if true. I need to follow that up.

I did have a brain CT with contrast, along with my regular quarterly thorax/abdomen, in April. Being a year since my diagnosis, I guess this will be the annual check from now on. I am stage 2. RUL last June followed by 3 chemo doses (it was found in 3 of 17 lymph nodes removed).

Now on Osimertin 80mg a day.

I hope you are well x

[Sharkypuss]

Thank you for your reply. My husband is stage 3 incurable and is being treated at one of the worst nhs hospitals in the country so I am concerned that they are causing more harm than necessary so I wondered if this was common. I read on the NHS website that an mri and radiotherapy were used to protect the brain as it is a common site for the disease to spread.

[Bow-19 in reply to Sharkypuss]

It might be worth asking for a second opinion. Which area of the country are you in? The Marsden and other hospitals in London are good for getting second opinions from, also The Christie in Manchester and hospitals in other big cities. You can ask your GP to refer you or your current Consultant x

[Sharkypuss in reply to Bow-19]

South Devon so we are under Plymouth.

[KT22 in reply to Sharkypuss]

Definitely get a second opinion.

[Bow-19 in reply to Sharkypuss]

It might be worth asking Roy Castle Helpline if they know of Oncologists near to you who can provide a second opinion. I think sometimes people are seen face to face in another hospital and that at other times it’s just the persons notes and scans that are reviewed. Your GP might be able to advise too xx

[21_er]

I was diagnosed with metastatic adenocarcinoma January 21 and have scans every 3months thankfully the targeted therapy is keeping the tumour in check. Good luck hope you have good results

[Bow-19]

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

[JanetteR57]

There are different investigations dependent on the type of cancer and its progression and spread. These are known as standards of care - part of the national optimum lung cancer pathway introduced in August 2017 adopted by NHSE and mostly followed by devolved nations. No Trust yet follows every aspect in its entirety not helped by pandemic and staff shortages.

It is accepted as the best way to treat LC patients alongside with BTS guidelines on nodule management and NICE guidelines. Comparisons with US or other healthcare systems aren't always helpful as people can be scanned for anything if they pay the bill.

These standards range from DSOC1 to DSOC4 and published by UK lung cancer clinical expert group. They are written in clinical scientific terms as their audience is clinicians and those reading the images not a public or patient audience.

UK Scans are not related to costs but clinical need but not all hospitals have their own PET scanners which tend to be centrally commissioned by NHS England. Waiting times for scans across the country can vary considerably due to differing demand and availability of readers to get the results to the medical staff.

For peripheral lesions with normal hilar/mediastinal appearances on a staging CT with no distant mets, no brain imaging is recommended. If a lesion has invasive hilar or mediastinal lymphadenopathy without mets = contrast enhancing MRI brain for suspected stage iii (DSOC2)

DSOC3 for 'contiguous or conglomerate invasive mediastinal lymphadenopathy without distant metastases on staging CT' = contrast enhanced MRI brain (CT if known small cell)

DSOC4 states if distant mets on staging CT, consider PET CT or contrast CT brain for oligometastic tumours

My 7cm adenocarcinoma diagnosed Jan 2011 hadn't spread beyond the lung . However last year I had an MRI scan and ultrasound scan due to spasms in left arm/hand (residual entrapped ulna nerve found during nerve conduction tests in 2021) and a neck x-ray. Different scans are used for different intentions.

Please ask your consultant as it's important to deal with your specific circumstances as we're all different and what applies to one won't automatically apply to another if they have different clinical characteristics and results.

National guidelines, outcomes and procedures are monitored within the annual national lung cancer audit and results fed back to Trusts and Cancer alliances (In England) to improve where they may fall behind the average or expected results.

Different scan types carry different risks - CT with contrast is quite a high radiation dose hence targeted lung health checks using a low dose CT without contrast for their screening but diagnostic scans when symptomatic or already in a clinical pathway are different. However when necessary scans should be carried out and the risks explained to the patient.

I'm less aware of risks for MRI scans but CT risks are regularly discussed in national and international lung cancer advisory committees and relevant commissioning/provider groups.

This information from Roy Castle lung cancer foundation may help explain further. Hope this helps.

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

[Sharkypuss]

Thank you for your reply. At diagnosis he had mets in his lower spine and hip and also had enlarged lymph nodes in his chest all of which were treated with radiotherapy yet no other scans were carried out. Now with hindsight I do worry that they've dropped the ball.

[Denzie]

so very sorry it came to this. Allow me to share from a different viewpoint. Sometimes a brain Mets is too small to be imaged even with an MRI. It doesn’t happen often but it does happen.

[Elt79]

Hi I was diagnosed with incurable Stage IV NSCLC with adrenal mets in 2018 - prior to starting treatment I had an episode where I lost speech and it was thought I’d had a stroke - MRI confirmed brain mets. I had SRS which resolved them and then was treated with immunotherapy for 2 years. I had MRI/ct scans every 3 months. Unfortunately brain Mets came back Dec 2020 but I was treated with SRS again in Feb 2021. My scans moved to annual since May last year - I have had issues with my speech but my oncologist says because longer term the radiation causes changes in the treatment area and one of my Mets was in the area associated with speech these changes are not tumour related at this point but do affect me. My prognosis was extremely poor but thanks to improving treatments am doing quite well 4.5 years on. Wishing you the very best of luck x

[Sharkypuss in reply to Elt79]

Thank you. That gives me some hope if the hospital gets its act together. I think I'm more frightened than my husband and this is the first time I've reached out to anyone so thank you again.

[Elt79]

❤️

[Bow-19]

Also worth googling Lung Cancer Support groups in your area to meet other people in your situation if you want to