Monitoring post lobectomy

[Benjy2018]

I had a lobectomy in April 2017. Please can someone advise how often I should be monitored by way of CT scan? I last had a scan 6 months ago and am now under the care of The Brompton after a difficult journey of mis diagnosis at a previous hospital. They have decided to change my scan due in October to an x ray. I am unhappy about this. Does anyone know the guidelines or is it regarding individual care pathways within different trusts? many thanks.

[Briangemmell]

I had a right lung removed in 2014 and all I ever get when I see my respiratory consultant twice a year is a chest X-ray, this seems to be the normal.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Benjy2018

Hope you have recovered well from your surgery. There are national guidelines in place for England and Wales, this is the link:

nice.org.uk/guidance/cg121/...

The guidelines state initially a 6 week post surgery follow up and then regular appointments; it does not state 3 or 6 monthly, or whether chest xray or CT scan.

It may depend on local hospital policy for their follow up care. Some hospitals would follow up 3 , then 6 monthly as you are. Discuss with your lung cancer specialist nurse what is their normal procedure or have a chat to your GP.

This is some information on follow up appointments from cancer research UK:

cancerresearchuk.org/about-...

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

[Benjy2018 in reply to RoyCastleHelpline]

Thank you, that is very helpful.

[janeg4]

Hi Benjy2018

I had lobectomy in 2012 and discovered that what was considered routine follow up in the UK is normally chest x-rays every 6months .I had a look online and dis overex that in the states and in particular most of Europe the guidelines are ct scan every 6 months for first 2 years then annually for the remaining 3 years of follow up . I like you was not happy and how can I put this “ strongly requested “ that my follow up would be with ct scans , my reason for this was that if the cancer was going to return it would be found as early as possible and that as I was only 49 at the time I was healthy enough to have further surgery . The type of nsclc I had could spread quickly , the medics advise of concerns around exposure to radiation this may be an issue for you . I am happy to report that I am almost 6 years post cancer still NED and I am a great believer in being your own advocate which is why I was given ct scan follow up . I wish you well in your recovery and post cancer journey.

Jane

[Benjy2018 in reply to janeg4]

Hi janeg4

Thank you for your reply and helpful information. I quickly realised that self advocacy was going to be the norm and there was no support offered post surgery in April 2017, a very lonely place indeed. Thankfully I recovered well after VATS surgery and returned to gym and walking etc. quickly. Given I was not happy with my first hospital (they kept telling me it was an infection) and they declined my request to bring forward my routine appt. due to an occasional cough my GP asked for a scan at an alternative hosp which identified a small nodule. At this stage I looked up who was the nodule expert and found a Consultant at The Royal Brompton. At my request I was referred to him afer sevceral letters etc. etc. I was followed up in April 18 with this and thankfully it had disappeared. I was given an appt for a scan on 16th October, however when checking dates and time with the sec yesterday I was informed that it would not be a scan but an X-ray and a scan if there were concerns and that my appt was on 27th September with another Dr under my Consultant. I am far from happy with this and not sure on the way forward to get the scan. I have been very lucky as the tumour was small, but I understand that key to recovery is early diagnosis. Given I had no symptoms and my cancer was found as a result of another problem I am very keen to have a CT scan. I suppose it amount to funding and will have to pay myself. I am not sure of my NHS rights. It is all so draining when you just want to get on with your life.

Kind regards

Benjy2018

[Benjy2018 in reply to janeg4]

Hi janeg4. I am just about to go through all my file to establish my CT scan and x ray history. I wish you well and am glad you are well.

Susan

[JanetteR57]

I had my left upper lobectomy (and removal of 7cm tumour) via open surgery in December 2010 and was told the type I had didn't benefit from chemo so my only treatment would be 'vigilance' on the part of the hospital. Yes, in the UK, chest x ray is the normal - both for diagnosis and follow up as the majority of our CT scanners deliver a much higher dose of radiation than those in the US or Europe so there is a risk of radiation exposure (especially if continued regularly) actually 'harming' us. Equipment is slowly being replaced in UK hospitals and we're also trialling some low dose CT scanners (in Manchester) at the moment for earlier detection/targeted screening for those most at risk. Follow up timing depends on the protocol of the lung cancer pathway, the Trust itself and the patient's recovery as I understand it. I recovered well and was put into a 12 month follow up after having had one at 3 months and another at 6 months. About 18 months later, I had a severe chest infection so was sent for another in case I had relapsed - thankfully I hadn't. I had annual chest x-rays for several years. Whenever I've developed a chest infection at either GP or walk-in centre, I've often been sent for a chest xray given my history and have had a couple of CTs when something suspicious has developed but thankfully, nothing sinister to date. It's not about funding per se but protecting patients from unnecessary radiation. I guess if the funding was there to replace all the UK CT scanners to those that offer lower dose scans as in other countries then that would be a different matter. There are strict guidelines for the National Optimum Lung Cancer pathway and national cancer targets within every hospital and Clinical Commissioning Groups (I work for one of these) that if your GP suspects anything untoward, you have to be seen within 2 weeks and follow up treatment should follow these national guidelines. There is a lot of evidence now about 'overdiagnosing/overtreating' both prostrate and breast early and causing patients unnecessary harm so there is caution that lung cancer should not go the same way. I understand your fear of recurrence very well - I found a book 'cancer is a word not a sentence' by Dr Rob Buckman helped me understand it better in context. good luck.

[Benjy2018 in reply to JanetteR57]

Thank you JanetteR57 I will look out for the book.

Kind regards

Susan

[Janey_H]

Hi

It may depend on what stage your cancer was at when diagnosed. I had a lobectomy (after chemo and radiotherapy). My staging was 3B and originally I had been told it was inoperable.

I had CT scans to neck, thorax and abdomen and an MRI to head every 3 months for the first year, this was to go to every 6 months for years 2-5 and then annually for years 5-10. Two years after lobectomy I had a recurrence and some more surgery / radiotherapy so I am back on 3 monthly scans.

I do pay privately to have PET scans every now and then as these have picked up nodes that my CT scans have missed. It was a PET that picked up my neck nodes last October. I will pay for a PET for my next scans in November and the NHS will do MRI on head.

Hope this helps and all the best to you

Janey

[Vapcq]

Had a right lower lobectomy of 5cm tumour last June. I have 3 monthly CT scans for first year, then I think it's 6 monthly for a year then annual. I make sure these are booked. I drive it, I don't wait to be told. Hope this helps.

[Benjy2018 in reply to Vapcq]

Hi there Vapcq. I agree self advocacy is a must, but it is all so tiring and frustrating.

Kind regards

Susan

[Vapcq in reply to Benjy2018]

Hi susan

I don't know how the system works really, but I have found that by calling/writing and getting the bookings int he calendar have helped. I pushed to have an MRI a year after my first (I guess this could have slipped by a couple of months if I'd not pushed) and they found 5 small tumours in my brain, which , because they are so small have been treated and with any luck will 'die'. My next scan is end of Oct and I called them to get that in the calendar too. Yes, it is tiring and in an ideal world the care system would be reminding you - but sometimes it does have benefits to push it yourself if you possibly can.

Good luck

val

[janeg4]

Hi Susan thanks for your reply , I totally agree with the frustration and the need to fight your corner ,I am still doing it with regards to an employment issue and I am fed up that trying to get treated fairly is such an uphill battle . Best wishes

Jane

[Hopeforthebest]

Hi there. I had lobectomy via open surgery two years ago. I had ct scan after three months then every six months with the next one already booked for March. I’n between the 6 monthly ct scans I have6 monthly x rays... so ct scan, them xRay 3 mo this later, the. A ct scan three months after that then x Ray three months later etc(for two years). Have just had a ct and another booked for March (ie six months time). Ct scans are “eyes to thighs)Also have an annual mri of brain .in between I’ve had a full body pet scan and a second surgery (vats sevond time )due to a scare. (Thankfully it was fine ) Brilliant surgeon at the Brompton - brilliant oncologist at the Marsden. No chemo as stage 1b. Hope this helps. But you have to advocate for yourself xxx

[Benjy2018]

Hi there

I finally managed to get myself uner the care of The Brompton from my local hospital. I did have a scan in April 2018 after a small nodule was found. Happily it had disappreared. I received letter for a further scan in October 2018 shortly after. Due to some symptoms I was concerned about the appt was brought forward until tomorrow. The secretary has advised the CT for October is now cancelled and I should go to the walk in for an X-ray. I queried this. She said the Consultant said I don't need it and if there is anything on the X-ray I will have a scan. I am far from happy with this and have the appointment tomorrow and am wondering how is the best way to secure a scan. Maybe it will mean self funding? I do not know who to contact now. Why is it all so stressful?

Kind regards

xx

[LaurelandCallum in reply to Benjy2018]

Hi there,

Please push for a CT.

I don’t want to scare you but my mum was not diagnosed until she had An MRI. She had had countless X-rays and they all showed nothing. By the time she was diagnosed she was Stage 4 and there was nothing that could be done. She passed away 8 weeks later.

It is incredibly stressful. But your health is so important.

Please push on.

Sonia

[Benjy2018 in reply to LaurelandCallum]

I am so sorry to hear about your mum. Thank you for your support. I am going to skip the xray tomorrow and attend clinic for discussion and fight my corner. Kind regards Susan