Hi I am 5 weeks post upper left lobectomy. Was told no need for chemo. I feel a bit in the dark as to the next steps. Was told by lung nurse

[Martinet]

Hi. I am 5 weeks post upper left lobectomy and systemic nodal dissection. The tumour was diagnosed as pTa N1 PL1 R0 with lymphovascular invasion. Had telephone conversation with consultant who recommended no adjuvant chemo as he said there was nothing there to treat at the moment. I am now very anxious as to the next steps. They just said I would get an appointment in 3 months time. It has been quite difficult with covid situation as no direct contact with consultant or lung nurses etc. I was just wondering if anyone else has been in this position and what checks I will have to have in the future. Many thanks

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Martinet

Hope you are recovering well from your operation.

Follow up is initially within the first 2-6 weeks, then 3 monthly CT scans, depending on the hospitals local policy, follow up lasts for 5 years.

If you feel you have not had your questions answered or you are in doubt to what the follow up will be, you can speak to your specialist's secretary via the hospital switchboard and ask could you have a telephone consultation with your specialist or discuss with your GP.

Your GP will have had a follow up letter from your last discussion with your specialist.

This link is to our booklet on lung surgery and what follow up to expect is detailed in page 42:

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

If there is anything you would like to discuss you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[JanetteR57]

Hi Martinet, first off well done on having your lung surgery during covid 19 pandemic. After the usual whirlwind before treatment the stage after surgery can feel a bit like abandonment - or it did for me back in Dec 2010 when I had my op on 16th Dec and my follow on appointment wasn't until 13th Jan when given my diagnosis of mucinous adenocarcinoma. I was told the surgery had been a success (told immediately after surgery but they couldn't tell at that time what the large mass was so it was sent off for testing - I'd not had a biopsy beforehand). I was told there was no evidence that chemotherapy worked for the very specific type I had (mucinous BAC) so my only follow on treatment has been 'vigilance/watchful waiting' otherwise known as 'surveillance'. My next appointment was end of March 2011. I had never heard of lung nurses until I attended a conference as a fundraiser a couple of years later so certainly had never met one or been assigned one. There were no forums like this and the limited information online was terrifying.... and that was without the global pandemic situation that has resulted in changes to the lung cancer pathway (albeit temporary) to protect patients from the increased risk of contracting covid 19.

Does your appointment letter show a secretary's number for the consultant? If so, I'd suggest you call and explain your anxiety and ask if somebody can contact you about your specific situation.

These days lung cancer is much more precision and personal based than when I was diagnosed and treated - at the time the only targeted agent was for EGFR positive and I didn't have that but now several people can seem to have the same type but biologically their tumours and genome can be very different resulting in different treatments. I'd guess that as in the UK (unsure where you're based), the national optimum lung cancer pathway has been adapted weighing the risks of the benefit of adjuvant chemotherapy against risk of covid or other healthcare acquired infection for a resected patient resulting in less adjuvant chemotherapy being given and the suggested 3 month follow up.

Given your specific PTa N1 PL1 RO - is there a number between the Pt and a? usually it would state Pt1a or pt2a denoting the tumour's original size, N1 means it is in a node, PL1 - unsure as most lung tumours are shown as T (tumour) N (lymph nodes) M (metastases) R0 means no residual tumour.

I'm guessing the conversation you've had that like me, your follow up will be regular imaging - mine went from 3 months to 6 months then annual within a year due to my fitness. My tumour was 7cm and I had a left upper lobectomy through open surgery (thoracotomy not keyhole). I was back at work and swimming by the end of March 2011. There is some clearly written information about lung cancer and surgery on Roy Castle lung cancer foundation website so have a look at that -it's recently been updated, written with clinical input and reviewed by a patient panel. I also found a book really helpful 'cancer is a word not a sentence' by Dr Rob Buckman to help with anxiety and put the condition in context. Hang on in there and keep as active as you can - I was told that would make a huge difference in my recovery so I'm eternally grateful for that advice.

good luck.

[Martinet in reply to JanetteR57]

Thank you Janette for taking the time to respond to me. Funnily enough just before I read your post I had a phone call from a Macmillan Nurse at the hospital I had my lobectomy at. It was very helpful. I am now under oncology at my local hospital. The number on my diagnosis was pT2a

I do live in the UK. Your shared knowledge and journey is truly helpful, as I come to terms with my new normal.

Still not sure whether I should be shielding or keeping to the social distancing rules. I don’t go anywhere but was just wondering if you knew. Many thanks for your help help. Keep well

[JanetteR57 in reply to Martinet]

So pleased they've been in touch - that must be a relief. Hopefully they've given you a number to call if you have questions but you can also write them down - there are suggested questions to ask in the Roy Castle information so do take a look at their website if you get change.

The T2a means that your tumour was between 3 and 4 cm.

The shielding recommendations don't specifically mention resected patients - it features in a Frequently asked question on European Respiratory Society covid page that states 'resected patients are no more at risk than others'.

Those who have been contacted are usually because they have another condition such as severe asthma or COPD alongside their LC diagnosis.

However if you're recently out of any surgery, I'd be taking every precaution to protect your health but do exercise (walking) if you can but practise social distancing and suggest you don't go into areas with lots of people (shops etc) if you can avoid it.

I initially recovered well and have continued working, swimming and travelling.

In recent years I've been more susceptible to chest infections that resulted in being hospitalised including isolation for a respiratory virus in hospital last year so I'm being cautious. I've been out and about for fresh air as my usual 4 times a week (for 2-3 hours) swimming sessions not possible so my lung health needs me to keep active. I was told by my surgeon that if I kept active the lung would reinflate and develop to fill the space (although never fill it completely) like a balloon that you keep inflating - but with a thinner surface - but if I just sat around, the risk was of it not developing or sticking together (collapsing) which would not serve me well. This may be useful.

blf.org.uk/support-for-you/...

Good luck with your recovery...

[Martinet in reply to JanetteR57]

Thank you so much janette. Your replies are always so helpful. Sending all good wishes to you

[RLP49 in reply to JanetteR57]

Hi, firstly I’m glad your surgery went well Martinet and that as your tumour was <4cm you don’t require chemo, and that you now have a point of contact to help with questions too.

Janette - could you please post a link to the FAQ/article about Covid and resected patients. I’ve been trying to find out about this as I received a shielding letter back in March but I wasn’t sure if that was purely because I was having chemo and the fact my immune system would have been suppressed (my tumour removed in Dec ‘19 was 4.8cm), however my chemo was stopped in March after just 2 cycles as I was told the risk with Covid vs benefit was too high). I have continued to shield although have been out for walks at quiet times since last week’s announcement but I do want to understand if I’m still ‘extremely vulnerable’ 3 months after my last chemo session or more vulnerable due to having had a lower left Lobectomy 6 months ago.

Many thanks

Ruth

[JanetteR57 in reply to RLP49]

Hi, here's the link - there are two specific questions about resection - one states' I have hd part of my lung removed' and the other says' I have had VATs and pleurodesis'.... both responses suggest no increased risk. there's quite a lot of detail in here about all types of respiratory conditions and covid 19 not just lung cancer.....

europeanlung.org/en/covid-1...

[JanetteR57 in reply to JanetteR57]

you need to click on the tab for 'specific respiratory conditions' to find the Frequently asked questions part. sorry had thought it would open directly on that part. hope this helps.

[JanetteR57 in reply to RLP49]

Your shielding letter would have been because you were receiving chemotherapy - it's specifically listed in the category of those to be shielded....as is radiotherapy and immunotherapy, it's only lung surgery that isn't cited.... gov.uk/government/publicati...

shown in the first two and fourth bullet points in the list of those to be shielding

as you can see some restrictions have been relaxed last week and shielding has been a matter of choice but for most, they've erred on the cautious side as the risk may be too high for their health. hope this clarifies.