Post treatment follow up

Ok here is a question ,how many people in the UK after lobectomy and lyphm node involvement get Ct scans as routine follow up ?I only get an xray and sometimes I have to request that . Diane

[hedgehoggy]

Hi Disne

I thought everyone were monitored regularly and had 3 monthly CT scans but it may differ in different circumstances but your oncologist should know what the best is for you to have. Push for it!

Best wishes

Hoggy

[hedgehoggy in reply to hedgehoggy]

Sorry Diane my phone is on a different planet.

[Hidden in reply to hedgehoggy]

Thanks Hoggy ,that's just what I was trying to figure out really, It seems to be so variable in the UK post code led rather than diagnosis led ,I am just not sure how the NHS works it out who decides who and why some do and some don't .I don't want any scan unless useful to all concerned as they cause anxiety I did get one in January this year because I requested one and for no other reason than it was a year since surgery .I have been lucky so far apart from side effect symptoms but I am still here and that's the main thing .Thanks for your input Diane .

[906-9269]

I'm in the U.S. I've been followed with a CT very six months. We're led to believe this is the standard of care. If you've had nothing but an x-ray, I'd insist on a pet scan at this point. Please advocate for yourself and perhaps consider a new medical team as well. Good luck together with a hug.

[Hidden in reply to 906-9269]

Thanks for replying I did have CT scan in January of this year which was negative ,I did ask for this and they did then offer one ,so they are amenable and reasonable it just that it is not this trusts policy unless a clinical symptom occurs .To me that is too late .I am going to have another chat with my oncologist. I am trying to not assume the worst all the time cancer sort of takes you there .Hope you are well and Thanks for the advice. Diane

[Jackie46]

i know I'll have a CT at end of this month but this is the first post treatment scan. I will ask about subsequent ones. I am attending a focus group in December run by our CNS all about follow up after surgery for lung cancer and so will ask about this. Looked at NICE guidance and very woolly

[Hidden in reply to Jackie46]

The Nice guidelines are woolly in fact they emailed me, saying it was down to the hospital trust .These is no evidence to suggest either way which way is best .It doesn't stop you worrying about it though.

[Hidden in reply to Jackie46]

It would be interesting to know what your focus group has to say about follow up ,nothing happens down here in Devon I don't even know anyone else of my age who has been treated for lung cancer ,breast cancer is a different story and much better supported .This group is good though and gives us all a link with each other .Thanks for your reply Diane

[Hopeforthebest]

I had surgery in September and have my first follow up ct in early December - I'm told ct every six months for two years then decreasing for a further 3. I've been told however that they'll "squeeze" the ct timings slightly at the front end so that they are about every 5 months for first 2 years .

[Jaynair]

Hi Diane, my lobectomy was almost 4 years ago. I started off with an xray every 3 months for a year with a ct scan done at end of year - after that I was moved to 6 months - have had follow up ct and pet scans along with biopsies if consultant was concerned about anything that showed up on xrays (3 occasions, thankfully 2 turned out to be scarring etc. I investigation is ongoing at moment). Probably best to discuss with consultant / oncologist and tell them your concerns. Good luck x

[Hidden in reply to Jaynair]

Thanks Jaynair,I think that's what I will do ,I am trying not to feed my anxiety ,but I am also concerned things might be missed .

[Janey_H]

Hi Diane

I have had CT monitoring since surgery with an MRI head scan done at the same time. The timings I am on are:

First year - every 3 months

Years 2-5 - every 6 months

Years 5-10 - annually

I paid privately for a PET scan at the end of the first year before going to the six monthly scan times. Luckily that was clear and I am due my next routine CT / MRI in a couple of weeks.

As you know I was stage 3b and had had chemo / radio before surgery so maybe my monitoring is a bit different as it was more advanced when diagnosed?

Would still suggest you ask for CT if you are worried though xxx

[Hidden in reply to Janey_H]

Hi Janey, I thought I had replied Couldn't have submitted it .They variations across the UK are just bizarre although most people are suggesting CT's are the norm not down here in sunny Devon .Symptoms first CT scan later not sure what is right but I think I am going to ask for another one at my next visit it will be over a year since my last one then .They do mumble to me that this adenocarcinoma is slow growing mmm, they might have a point I am a little concerned about scans because my kidneys took a hammering with chemo just not performing as well as they once did.

How are you doing ?are you still running around hills etc and have you recovered well since your lobectomy .I met you at the Cardiff Roy Castle conference last year, I don't think you had had a lobectomy at that point but I know you were hoping to get one .I hope that's right life is Woolley at times .Take care Diane

[Janey_H in reply to Hidden]

Hi Diane - good to hear back from you and yes I remember chatting to you in Cardiff and the differences you were experiencing in the south west!

I am still running - had had my lobectomy in june last year so would have had it when we met. I did snowdonia marathon again this year - a few weeks back so am still going strong. A bit nervous about forthcoming scans but can't do much to change anything - what will be will be!

Hope you get some way forward at your next appointment. Keep us posted xxx

[Lovey1000 in reply to Janey_H]

Are you doing well??

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI diane55

It is a really good question and I would discuss with your lung cancer specialist nurse to ensure no imaging is being missed as part of your follow up.

JaneyH response was what we would expect as protocol. the NICE guidelines state regular appointments be maintained (as per protocol of the Oncologist team), therefore your lung cancer specialist nurse should have this information.

From the responses it is interesting to see there is a variation across different health boards.

Our free nurse led helpline as always is on 0800 358 7200 if you wish to discuss anything.

All the best

The Roy Castle Support Team

[woozer]

Every three months for the first year .... every six months since . I wish you well ...

[Hidden]

Hi Diane

My husband was 3b at diagnosis. Alimta damaged his kidneys and the contrast for a CT scan can be harsh on your kidneys. His last three appointments which have been every 3 months, he has only had a xray. Due to neck pain he has recently had a MRI. He has never had a PET scan as he was never eligible for surgery. Currently NED. We have been told he would have a CT if any changes appear on an xray. We live in Yorkshire and he is over 65.

[Hidden]

Hi ,I am glad I am not the only one not having CT scans ,maybe xrays can also give enough information ,I wish your husband well with his MRI scan and that it is just neck pain and nothing else to concern him .Also glad the xrays are Negative as well. Wishing you well and thanks for the response .Diane

[Jackie46]

Just to update. Been to focus group meeting today and our local hospital area (Halifax and Huddersfield) are recommending a CT scan at 3 months and then again at 18 months and in between 6 monthly CXRs for 5 years. Apparently this is based on European studies. I was surprised at not having 6 monthly CT but apparently this is thought to be best way to monitor unless you have new symptoms in which case they would probably do a more detailed scan. Hope this helps.

[Hidden in reply to Jackie46]

Thank you for that Jackie ,that seems quite reasonable to me and I am not so far away from that with my own follow up ,however I expect I will still have to ask for an 18month scan . I would like to think that my follow up so far has been enough and over zealous either. It is reassuring to know that it is .Thanks Diane .

[Jackie46]

Following my last post I have been researching follow up regarding European guidance overnight. I have found info from European Respiratory Society and also from European Society of medical oncologists. Both suggest more frequent CTs than was suggested by the nurse specialist yesterday. I am going to take along the info when I see my oncologist next week to question this. It is frustrating that we do not have uniform guidance on follow up in this country. Sorry if I am confusing the issue but seems to me the issue is confused!

[Hidden]

I agree with you it is very confusing ,just like no one can quite make a decision on it .Good luck with your appointment hope it goes well.

[JeanneLe]

I am in Bedfordshire and under a Buckinghamshire hospital. I was diagnosed two years ago with stage IV lung cancer. I have had two different types of chemo over the two years and one lot of radiotherapy. I have a contrast CT scan every 3 months. I had a pet scan right at the start 2 years ago. I have had a head MRI due to headaches.

I had my last one at the end of November and its come back stable again, there doesn't even seem to be any movement again. I'm still on tablets daily so down for a 3 month checkup.

There does not seem to be a standard action it seems to be purely on Docs preferred action. I did potentially have a reaction to the contrast scan this time so not sure they will agree to do one again.

Jeanne

[Hidden]

Hi Jeanne ,thanks for the reply ,understandably we are all different maybe some decisions are made with that in mind .As you said you are stage iv and doing well by the sounds of things even with medications .That could be why you have had more scans than most ,I have been lucky as only a stage 2 although always concerned that it could return, hence my inquiries and interest in how surveillance varies around the uk.

Wishing you well and a good Xmas Diane.

[Hidden]

I too only have been offered Xrays and i too had a lobectomy with one lymph involved am am due in January for another xray i think i will insist on scan