Advice RE my dad

[ALCLFC]

Dad had upper right lobectomy December 2019 (T1C L0). There has been question about mediastinal lymph nodes since August 2019 but 3 separate biopsies returned negative, so continued to monitor. Check up CT has shown considerable growth in lymph nodes since February, so he now has to have EBUS and PET scan, with potential Chemo and Radio/ Immunotherapy based on results. He has experienced slight dizziness when bending down recently and has a little shakiness on right side following surgery. He is also tired and has a slight cough occasionally, but he is 66 and a full time plasterer. I am FREAKING out that the PET scan might show that it has spread considerably since February. Would a spread show symptoms?

I know we will have to wait and see for the results, but I'm devastated. Can anyone give me any hope that my dad will be ok from their own experience? Is Chemo/ Radiotherapy effective at destroying it?

Any help is appreciated.

Thank you

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear ALCLFC

Welcome to the forum where you will find support and encouragement. Sorry to hear about your Dad and how this is a worrying time for you all.

Any new or change in symptoms could be a number of things, e.g. your

Dad must be getting tired working full time at the age of 66, especially if he went back to work too soon after his lung surgery.

If the doctor does not know about his dizziness and shakiness on his right side do let them know.

Waiting for results can seem like a very long time of fear and worry, but hopefully you will know soon and your Dad can start treatment.

It is encouraging that your Dad was early stage when he had his surgery. Thankfully lung cancer treatments are improving and there are other options available now in the form of new drugs called Immunotherapies or Targeted Therapies.

We have a section on all the treatments used in lung cancer and can be found on this link:

roycastle.org/help-and-supp...

You may wish to read some inspiring accounts from those living with lung cancer from this link:

roycastle.org/campaigns/lik...

Hope you will hear some encouraging experiences from those in the forum. If you wish to discuss anything 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 Helpline

[JanetteR57]

I had upper left lobectomy in Dec 2010 and returned to work 3 months later. I was 52 and also got tired... I'm still working. Bending down still sometimes winds me on the side of surgery. The dizziness may or may not be related. I know it's scary thinking that every symptom is related to his initial diagnosis - we all cough occasionally - it's our body's way of dislodging irritants - but that doesn't mean all coughs are bad news or some terrible disease. My partner recently revealed he's scared every time I have a chest infection (and I've ended up in hospital with several of these in the last few years) that it's returned. I had to stop myself thinking like that quite early on and had bronchoscopies and scans but thankfully turned out to be inflammation. I found a book called 'cancer is a word not a sentence' by Dr Rob Buckman put everything in context. We all had illnesses before surgery and are likely to afterwards.... mild or serious. The combination of diagnostic tools - imaging and ebus are the standard approach to determine the best way to tackle it if it turns out to be anything related - and as advised already, many of the tests, diagnostics and referrals have been delayed due to pandemic. will keep fingers crossed for him but do try not to be alarmed as he may pick up on that.. It's still early days for your dad and doing a physical job is both good at keeping him active but will also tire him physically. hope he/you get some answers soon.

[ALCLFC in reply to JanetteR57]

Hi JanetteR57,

Thank you for your positivity. You are absolutely right. I seem to have developed anxiety since dad's initial diagnosis and every time he coughs or yawns or has a headache I panic!!

Glad to hear you've recovered well and everything is good 10 years later!

Best wishes

Aimee

[JanetteR57 in reply to ALCLFC]

I certainly never thought I'd get to this point... but appreciate every day.... and will certainly when I get to 10 years - which will be January 2021 when I had the diagnosis. To answer one of your questions, many patients respond well to chemo/radiotherapy/immunotherapy even if they're not eligible for surgery. new treatments are being discovered all the time for lung cancer but at the moment, it isn't clear that's what he has - hence the investigations. will keep everything crossed and hope he has tests/results soon so you can both get on with dealing with the 'what is' rather than imagining the 'what if'... good luck.

[sammyj71]

Hi, I have NSCLC I had radiotherapy as a first line treatment due to covid 19, I had tumour in left lung measuring 2 cm and extensive mediastinal and hilar enlarged lymph nodes on both sides of chest all cancerous. I had 10 sessions of high dose radiotherapy on the mediastinum and on the tumour. My last ct scan 3 weeks ago showed that there had been a 50% reduction in the lymph nodes and my Tumour now looks to just be scar tissue although this is not 100% definite and will be monitored. I am about to start chemotherapy on monday for 6 cycles of carboplatin and premetrexed for nodes in my clavicle area neck and a spot next to my thyroid and remaining nodes.

I would definately say that radiotherapy is and can be effective it was for me.

I hope this puts you at ease and wishing you and your father the best of luck.

sam

[ALCLFC in reply to sammyj71]

Hi Sammyj71

Thank you for replying and for your positive post. That's fantastic news.

Wishing you all the best for the future.

Aimee

[HenryEtta]

Hi there fingers crossed for your dad until they do the Ebus they will not know . I had that in May to check lymph nodes they will clear so had the top right lobe removed . Now having chemo x 6 cycles to blast anything left