Seems a long time

My husband was diagnosed with Right upper lobe T3 N0 M0 non-small cell lung cancer in June 2021. Because he also has COPD they said they couldn’t operate so he was given 20 sessions of radiotherapy in October 2021. Since then he hasn’t seen his oncologist at all, just a phone call every 12 weeks. He spent 6 days in hospital earlier this year as he caught covid. He now has a constant cough which his oncologist, over the phone, tells him it’s nothing to do with his cancer but is from his COPD and the fact he had covid. I would like to think he’s right but am concerned that he is making a decision on a phone conversation. He said he will have him in for a scan in October and then see him in November. Does anyone else think he should have been seen before then or am I just over sensitive?

[sassassas]

Hi Hidden It does seem like a long time to wait and I don't think you're being over-sensitive at all. It is really hard to not worry when some new symptom crops up.

For what my opinion is worth....

It sounds like this cough has been going on a while. Is it getting worse? If it's not changing, that would suggest the COPD / covid explanation is not unreasonable.

But if its getting worse, or if you and your husband just don't feel its right to wait until October, I would go back to the doctor to ask why he's so sure its nothing sinister. If you're still unhappy, I would try to the scan brought forward.

Hope that helps

[Hidden]

Hi Knitterlb, I would have thought that one get a ct scan 3 months after treatment so 3 months after end of radiotherapy to see how successful it was. As for the cough, radiotherapy itself can make a cough worse due to scarring. I had same problem. It is supposed to go over time and indeed for me is improving. What about contacting the lung cancer nurses. They are usually very helpful and knowledgeable and can act as a lint to the oncologist. Good luck to both of you

[Hidden in reply to Hidden]

Thank you for your advice, think we need to get him seen sooner than Oct/Nov.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Knitterlb

Welcome to the forum and so sorry to hear of your husbands lung cancer.

For stage 3 lung cancer, surgery is not usually an option, however radiotherapy can be given, sometimes this is followed up with other treatment, e.g chemotherapy or new treatments such as immunotherapy or targeted therapies.

Routine follow up would be 3 monthly CT scans and if your husband has not had this since his radiotherapy, you have a few options.

You could contact the oncologists secretary through the hospital switchboard and ask for his CT scan to done earlier than October, and , or request to speak to the oncologist sooner to discuss this.

Your husband is entitled to a second opinion within the NHS and this can be done either through his GP or his oncologist. This will not affect his ongoing care.

It seems too long to wait for a follow up since his radiotherapy and if you have no success through the secretary, you may wish to consider contacting PALS (the Patient Advisory Liaison Service), they are within most hospitals and they can act as an advocate for your husband: nhs.uk/nhs-services/hospita...

Given his history of lung cancer, his ongoing cough needs to be medically reassessed and not assumed it is from his COPD, which it may be, but this needs to be examined, face to face by a doctor.

Your husband could speak to his lung cancer nurse specialist at the hospital, if he has never had one, this can be requested by his GP or oncologist.

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp... , alternatively you can email our support coordinator at [e-mail]

We offer a one off grant of up to £150 for anyone with lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

I am sorry to hear you have both had such a difficult time and you are not being sensitive at all in your concern, please do not hesitate to contact us, ask the nurse, either by email at [e-mail] or our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Hidden in reply to RoyCastleHelpline]

Thank you so much for this advice. It says what I thought but never having been in this position before I thought I was making too much of it. Will persevere to get seen sooner.

[Unicorn3344]

Hi KnitterlbMy husband was also diagnosed with non small cell lung cancer in June 2021 and he also has COPD.He had an operation to remove part of his lung in August which is known as a right upper lobectomy.He then had 4 sessions of chemotherapy and he was supposed to have radiotherapy next to make sure they had got all the cancer cells but was told because of his COPD he wasn’t fit enough to have the radiotherapy as he was out of breath and struggling to speak just from walking from the hospital car park to the consultant’s office so they said there was nothing else they could do as the radiotherapy could make him worse.They said they would give him regular check ups and scans.He did have CT scans and MRI scan before his operation and he had CT scan 2 months after his op in October and then another CT scan in December as they were concerned it had spread to his lymph nodes .Finally in May he got the all clear and was told his cancer has gone.He did have a couple of follow up appointments by telephone but until he had that last appointment face to face with the oncologist he couldn’t believe it had actually gone.I can understand you being worried if you ‘re husband is just having telephone appointments as it is very scary and not knowing is the worst thing.My husband had a chest infection nearly every month and I kept asking is it the cancer or the COPD but they couldn’t say for sure.Fortunately we have an urgent care service where you can walk in and be seen by a doctor so I take him there and he is prescribed antibiotics and steroids.We are still trying to manage his COPD which is a horrible disease in itself and I think the cough and the chest infections are going to be an ongoing thing.I would say speak to your lung nurse specialist and try and arrange a face to face appointment with your oncologist and write down any questions you have.I hope you get some answers and results to put your mind at rest.Be persistent and explain how worried and stressed you are.I know everyone’s diagnosis is different and a lot depends on your overall fitness as to what treatment you can have but don’t give up .I understand what you are going through.It is horrible to have to watch someone suffer and feel helpless but keep speaking with your GP and lung nurse and oncologist and hopefully they can help .Take care of yourself too

[Hidden in reply to Unicorn3344]

Thank you so much. My husband is unable to have the operation because his COPD is quite bad. He has constant chest infections and seems to constantly be on steroids and antibiotics. The oncologist said, over the phone, that it wasn't his cancer causing the problem but his COPD and the fact he had COVID. Just don't see how he can say this if he hasn't seen him. Think I may phone his cancer nurse and see if we can get an appointment, I haven't phoned her at all since the beginning.

[Unicorn3344 in reply to Hidden]

Hi hopefully the radiotherapy sessions have got rid of the cancer .I assume your husband had a scan afterwards to check on this and if so you should have had an appointment to discuss the results.Definitely phone your lung nurse and ask .Hope you get some answers to your questions

[JanetteR57]

Sorry to hear of the long wait and experience of your husband as well as your understandable concern. my tumour was also T3 due to its size classed as stage 2b and I had a lobectomy to remove the 7cm tumour in Dec 2010. When a patient has a condition like COPD or asthma or chest infections there can often be overlap with the symptoms or assumption that everything is related to the cancer when it isn't. however I would expect that at some point you should be seen in person by somebody who can confirm or deny this - who 'manages' his COPD? is it his GP or does he have a respiratory consultant? This overlap between primary care and secondary care often results in assumptions being made by one that the other is 'overseeing' the patient when in fact that isn't the case. I suggest you contact whoever is supposed to oversee his COPD and request a face to face appointment and then ask them to contact the oncologist with any real evidence. good luck.

[Hidden in reply to JanetteR57]

Many thanks Janette He was seeing a consultant regularly for his COPD but that seems to have come to an end since the COVID epidemic. I will try and contact someone to see if they will see him so we can find our which illness it is that is giving him the problem.

[JanetteR57]

that sounds sensible - and especially given the pandemic, still important to be seen to keep COPD in check. it seems that many people (including me) were able to manage their conditions better during the pandemic with increased hygiene measures everywhere, social distancing, less exposure to germs etc (which in my case often trigger chest infections) so imagine that if patients haven't been too bad, they've reduced the appointment contact or lengthened the time between reviews. My GP practice contacted me recently for an asthma review (although they have letters from the hospital confirming I do not have asthma) so looks as if some respiratory follow up action may be restarting in some parts of the country.

[Cockailschemocancer]

I can’t offer any more advice that what others and The Roy Castle Support Team have said, but if you are ever concerned then you really do need to speak up and be the advocate for your own care - or husbands in this case. Best wishes.

[HopefulAnnie101]

Hi Knitterlb I would push for a PET scan. My dad had a continuous cough after treatment and they put it down to radiotherapy scarring etc. It wasn’t until they did the PET scan that activity showed which was done approx. a year later. At least you will know for sure! Wish you all the best x