monitoring

[Zac2018]

ls it okay to have chest X-ray instead of thoracic scan when in the monitoring stage.

I am only 1yr post op with N2 M0, l refused ?? or should l say was sort of advised chemo would not really give much more than 5% to the 5yr survival.

I have had scans for a year, now they are just doing X-rays, they will only scan if something changes and crops up. I s it not better to scan and treat instead of, maybe not knowing and letting it spread. Thankyou in advance.

[Denzie Moderator Volunteer]

Some of the UK standard of care related to treatment follow up is different than it is here in the US. I’m hoping Jeanette pops in soon. She knows the UK standards very well.

There is a UK based lung cancer foundation you can reach at roycastle.org. Telephone [phone].

I’m very curious to hear what you learn. Wondering if you have to pay out of pocket for a low dose CT now. Please let us know what they say so we can help the next person.

[JanetteR57]

Hi Zac, It is usual to be followed up by Chest x-ray post lung surgery in the UK.

I didn't have any scans - I had my surgery in the December then first follow up in mid January, then end of March then July then November then moved into annual check ups. After my surgery I was told there was no evidence that chemotherapy had any effect on the specific type I had which I was told was rare (mucinous BAC - now reclassified as invasive mucinous adenocarcinoma at the size of my tumour 7cm) so was told to go and get on with my life. I asked what was my follow on treatment and told 'vigilance - surveillance so when I looked quizzical, the surgeon said ' on the part of the hospital, we'll see you regularly with regular imaging'. That was in December 2010 and diagnosis in January 2011.

I've been involved in lung cancer research in the UK since the end of 2013 and things have changed somewhat since then as the IASLC TNM8 staging guidelines have twice reclassified my tumour - not only its name but from T2 to T3 but the follow up remained the same. However now chemotherapy would be offered to the size of tumour I had but as you say, it only confers around 5% benefit for all the known side/late effects of treatment. Having met many patients with such long term effects with other cancers I can't say I feel I missed out.

Now the majority of surgery in the UK is keyhole not the open thoracotomy I had and genome sequencing is done (I tested negative for EGFR - the only test then as targeted agents were only available on clinical trials for that mutation). However globally some trials are showing some advantage for some by giving immunotherapy before surgery but that requires knowing all the genomic information of the tumour beforehand. I did not have a biopsy as the imaging was clear in all forms that a large mass had to be removed and it was sent to pathology lab who sent the detail for that first follow up appointment. It was my upper left lobe removed along with the tumour.

The idea of imaging is to keep an eye on things - as many patients develop infections/inflammation that can change an x-ray. if this happens, they can upgrade the image to a CT scan but generally due toradiation risk from CT scans, chest x-ray is the first image mode used.

I have had a couple of instances over the years where symptoms looked suspicious and I was hospitalised with what turned out to be pneumonia, pseudomonas and RSV and at other times, investigations used bronchoscopies and CT scan when they were unsure. That's deemed to be lower radiation exposure than scanning regularly as radiation exposure is itself a risk for triggering cell mutations. The lung health check mobile scanners being rolled out across the country are specifically low dose CT rather than diagnostic CT which has higher radiation exposure. It maybe that, in time, more scanners are changed in hospitals to enable lower dose exposure but for now, chest X-ray is used in the UK. Last week I spent a day and a half in a workshop about symptomatic lung cancer and we discussed the use of chest x-rays which incidentally Australia and some other countries use for their first monitoring mode.

I'd like to tell you waiting gets easier with time but unfortunately for many of us, anxiety can increase so I had to find a way to get on with life and stop it being dominated with thinking about cancer. I found getting involved and learning much more about it helped me but know that's not for everyone. However googling survival rates is a way to frighten yourself as unless you're involved or know where to look, all numbers are amalgamated making early stage cancer appear to have worse survival rates than reality.

Having lost 2 of my sisters and my niece prematurely, suddenly and unexpectedly and none from cancer has changed my perspective on life and cancer generally - as none had any chance to worry about what might happen as their lives were cut short suddenly without warning.

I found reading books helped me too - I'd recommend 'cancer is a word not a sentence' by Dr Rob Buckman and 'anticancer a new way of life' by Dr Servan Schreiber - both of which helped me put things into context and appreciate that although I had a tumour, it had been removed and with the scar down my back, literally and figuratively tried to put it 'behind me' and move on with life.

If your tumour was surgically removed with good margins, the risk of spread is low and why some adjuvant/mop-up chemotherapy is offered. I'm assuming that as you had N2, lymph nodes were removed too.

Using up-front immunotherapy for some may change this current approach in future but for now, be assured you're receiving the standard of care.

You can always ask your surgeon/consultant for further explanation - mine have always responded well when I've shown interest and that way, you'll get specific information about your personal case/situation and possible risks rather than general answers.

hope this helps. good luck.

[Jando2021 in reply to JanetteR57]

Good morning Jeanette, I see that you are from the U.K. I find your replies on here very helpful and informative. I would really like to be involved with cancer research, can you point in the right direction where to start please. Good luck with everything, keep well 🙏

[JanetteR57 in reply to Jando2021]

Thanks for your kind comments - glad if you find my home spun wisdom and experience helps.

There are many ways to help with cancer research - Cancer Research UK has something called 'my involvement network' and sends regular newsletters with involvement opportunities - from commenting on websites/patient literature to sitting on formal funding committees and everything in between.. some are for specific cancer types, others more general cancer experience.

NIHR (National institute of health research) also advertises opportunities for patient and public involvement contributors. NCRI (national cancer research Institute) has various cancer networks and invites consumer members (as they call those who have experience of cancer as patient or carer) to join the various networks which can be cancer specific, treatment specific (CT Rad for radiotherapy studies, CM Path for pathology studies) and cross cutting groups like living with and beyond cancer, supportive and palliative care, primary care and other themes. NCRI also has a consumer forum comprising over 100 patient/carers who've been involved in research so that when researchers have studies, they want to run their ideas by a group for feedback, we may have such bids presented at meetings.

Many hospital trusts also have patient and public involvement groups - have a look at their websites under 'get involved' for opportunities. I first became involved as part of a patient literature review panel for Roy Castle lung cancer foundation which I'm still on - Macmillan, CRUK and most cancer charities always want people to support them in many different ways.

Other lung cancer charities like Ruth Strauss foundation, ALK+, EGFR+, ROS1ders/KRAS kickers also often value input with their work as does methelioma UK. I never knew such worlds or opportunities existed until I was encouraged to get more involved when I attended a Roy Castle lung cancer foundation event in Birmingham as a fundraiser and a year later was appointed to NCRI lung group then a NIHR funding board (there are several of these) all through competitive process then others followed. Many have different terms of involvement - some time limited, some more open ended. Roy Castle lung cancer foundation also has many ways to get involved - have a look at its website.

There's also a website called 'people in research' which advertises opportunities to get involved all across the country - since the pandemic the majority of work is done online but there are still occasional face to face gatherings and conferences. I found that once on one committee I was approached to join others to help different research centres out with their studies by offering a patient perspective.

hope this helps point you in the right direction. good luck.

[Zac2018 in reply to JanetteR57]

Thankyou Janette for all your information it’s all very much appreciated x