Urgent Advice required regarding Lung Cancer and Radiotherapy

[PussinJimmyChoos]

My Grandad is 78 years old. He had bladder cancer a few years ago and it was treated successfully with the removal of his prostate and bladder and then radiotherapy. However, he hurt his shoulder in March and since then, the pain has not gone away.

He went to the GP who sent him for an X ray and they found a mass. He had a CT scan and saw the oncologist today and they confirmed it was malignant and lung cancer. At present, I don't know the grade of the cancer, whether it has spread as I wasn't there to ask the questions and as my Grandad didn't ask them, my Gran was afraid to as she didn't know what he was ready to hear

They have said they will give him radiotherapy to shrink the mass and control the pain but not chemotherapy as at his age and in his condition, it would be too much for him. They didn't use the words terminal, but we are assuming it will be? There is a three week wait for the radiotherapy which we are angry about as think it should be sooner and we will be complaining to the hospital to get it brought foward

What is the usual course of action with these things? Does radiotherapy buy time or?? He is already losing weight by the week and is very tired

Any advice appreciated as we are all over the place

TIA

Puss

My dad is 77 and has terminal lung cancer. He was not given chemo either because he is frail and too ill and had radiotherapy ~ 2 heavy bursts of it only. He was, I believe, told it was terminal fairly soon after the mass was discovered as it is inoperable. Radiotherapy has made a slight improvement, but don't underestimate how ill it will make your grandad feel. My dad has lost almost (all his body fat. They cannot eat much afterwards for quite a while as food tastes awful and they feel too ill. I know this is usual as exMIL also has terminal lung cancer, though she did have chemo and radiotherapy.

I think your Gran should be able to phone his consultant and ask the questions she needs answering. I also think that if he gets visits from the hospice nurses, then youyour gran/grandad can also ask them all your questions. They are very good IME.

I do hope that things are good for your grandad, but you have to be strong for him and gran and he has to have a positive attitude which is sadly something my dad is short of.

Oh I'm sorry puss, I saw your thread last week

No advice but thinking of you xx

bump for the evening crowd

Pussin i would imagine it is terminal if they aren't operating.
Radiotherapy may buy him some time assuming he has decided to go for this ?
It is worth asking his consultant so he can decide what he thinks is best.
Radiotherapy is very hard to endure especially if he is already feeling very unwell.
Am so sorry that it has come back for him life can be very cruel

Sometimes they can't operate if it's in an awkward place(as my dads is)or if the other lung is not efficient enough to cope alone.

Really sorry to hear about your Grandad Puss.

It sounds like this radiotherapy will be palliative - so with the aim of controlling his pain, and extending his life, but not with the aim of curing the cancer outright.

3 weeks is about normal waiting time for radiotherapy - it's not something that is just given, he'll need a special planning CT, then a physicist will work out way of delivering the radiotherapy that gives all the dose to his tumour that the doctor has asked for while minimising the dose to other places, then he'll probably need to have a simulation where they check that the plan can be delivered accuratly. Obviously all this takes time, so it's not really a wait, its the delay in getting everything ready.

Side effects do vary, and where someone had only two fractions of radiotherapy they are usually worse than having a number.

The staff will be more than happy to discuss everything with you

You sound very clued up on this CMOT, thank you from me!

All my professional career has been in radiotherapy, so know it pretty well by now.

It's one of those things that no one knows about (especially that it is totally individually tailored to each person), so always happy to talk about it

sad subject though...

Yes, it's not something anyone ever wants to know about. But it's good to be able to explain to people how the process works and make it a bit less daunting

Sorry to hear that your fears were realised, Puss.

Have you been to the cancerbackup website site? There's a forum there.

It must be very frustrating not knowing what's really going on. Do you suspect that the lung cancer is a secondary cancer or a different primary one?

Thanks for all your replies.

He had bladder cancer before and got the all clear so whether this would be seen as a primary or secondary cancer, I don't know.

Am puzzled though as the CT scan that he had this week, which showed the mass, is the first one that he's had...had he had one earlier, it may have been spotted. Its only the shoulder pain that started off all the investigations. Have the hospital been negligent in only focusing on the bladder/prostate area and missing this??

I have so many questions, but very difficult to get answers due to data protection etc. I'm going to write questions down for my Gran to take to the next appointment...I wanted her to give me the oncologist's e-mail and put them in an e-mail but Gran seems adamant that they wont like that.

Grandad isn't asking any questions really and obviously, as he's sat right next to my Gran, she doesn't want to ask stuff like prognosis, time scales as if he's not asking them, she is worried he doesn't want to hear the answers iyswim..its a bit of a mess to be honest. She did mention remission to the Dr but he shook his head no when Grandad wasn't looking so its probably terminal

He's going to have 5 sessions of radiotherapy..they have given her a leaflet for the Mac nurses and I'm thinking she should get into contact with them sooner rather than later??

He's already very tired, loss of appetite, quite cranky and coughing up stuff..which I believe is common with lung cancer. We are just spoiling him lots now...its my sons 3rd birthday tomorrow and so hard to think that next year he probably won't be around to see it - cancer is a fecker

Puss, if it's any consolation, they only found my dads tumour with a scan because he started to fall over all of a sudden and he already had emphasaema and heart failure so he had already had xrays for that and nothing was found.

I'm always thinking the same as you...this will be the last...etc etc, so I try to make the most of everything. I doubt dad will see my Dd's 3rd birthday, but I have to live in hope...you must too.x

I am sorry to hear about your grandad

My mum died in march of lung cancer. She (we) were told at the meeting with her oncologist that it wa terminal. She was given 3 cycles of chemotherapy (she was 56), from september to middle of november, mum then started radiotherapy the end of december.

Mum was only diagnosed as we got (this is going to awful) fed up of taking her back and fore the doctors only to be told that there was nothing wrong with her. I sort of lost it with the doctor and asked was he waiting for her to drop dead, so he sent her into hospital for x-rays and other tests. They sent her home and told us that they couldnt find nothing wrong with her. So we tried to convice her that there was nothing wrong, tried to get her to eat, leave the house.

She was called back to hospital as they found a mass on her lung (3 weeks later) it was a rollercoster from there.

Tots, that's very sad. I'm sorry you've lost your dear mum at such a young age

PJC - I'm so sorry you are having to go through this - it's taken me back to last year and it's not easy feeling powerless, not to mention stricken by the news.

Your grandma AND you can contact Macmillan - they really don't mind who they talk to and can be so so helpful.

FWIW, my dad had a lung cancer that was completely unrelated to his prostate cancer, and apparently not even related to his 30 years of smoking...... it was just incredibly bad luck.

I would suggest that you go ahead with writing down the questions and getting a phonecall with the consultant if your grandma can't go without your grandfather, and maybe go with her/listen on the speakerphone? It might be useful for her if someone else hears all the stuff because between you you might remember most of what they say.
She also might feel that is less of a cheek if she feels that doctors are busy/important/know what they're doing (I mean a generational difference in attitude, not that they're not busy!), in having a proper meeting. She might still need to get your GF's permission to talk to him though - I dont' know.

TBH, as long as the doctors have been seeing your GF consistently, blood test check etc., it would be impossible, short of a full body scan, for them to notice everything as it happens. Your GP did exactly the right thing, straight away, in getting an x-ray, and even if they'd found it at an earlier stage, doesn't mean their way forward would be any different. It's also worth considering that your GF may well have delayed going to the GP because he was concerned/thougth he knew already, what is was. A consultant radiologist lost his job because he reported my dad's scans as "normal" when in fact he obviously hadn't seen them and this was a week before Dad passed away, so I'm fairly sensitive to this I think, but from what you've said it doesn't sound as if they were neglectful. Maybe you have more details than you've given, but on face value that's my feeling.

hope I haven't gone on to much, most impt. is talk to MacM nurses, for your own sake too, and try and walk the line between satisfying your own need for knowledge and knowing your grandparents are happy with how you move forward.

I will be thinking of you,

J

Jack - thank you for such a lovely post.

I managed to talk my Gran around to letting me write a letter to the consultant on her behalf. I quoted GD's DOB and hospital number so they know its from a genuine source and I asked if the consultant could answer the following questions:

1. What type of lung cancer is it
2. What is the staging of the cancer
3. Has it spread
4. Is the radiotherapy palliative
5. What is the general prognosis

I think that covers all what they need to know for now. Gran showed it to GD and he was very happy with it so we posted it today - hopefully will be there Wed.

I also asked if it was possible for them to bring the radiotherapy treatment forward as his pain is increasing daily. He booked up a little knowing that we had started the ball rolling and my Gran seemed happier. She was a bit reluctant to contact the oncologist but as I said, you have to keep pushing at times - sadly

I am already on the Mac forums as lost my MIL to cancer in January. I printed out the helpline numbers for my Gran and advice on how to go about getting a Mac nurse - apparently you need a GP/consultant referral, which they didn't tell them at the diagnosing appt on Thurs - just gave them the leaflet

They gave the impression it was terminal but didn't actually say. Also, but because they were so bloody scant with the information, Gran thinks he will book up after the radiotherapy (he's having 5 treatments) but I'm not so sure. He's lost more weight and his appetite seems to be decreasing by the day. He's also got a chest infection and coughing up stuff, which I believe is a side effect. He's feeling the cold a lot more as well

PJC, you can phone your grandads gp's and ask them to refer him for a mac nurse. Either the gp will do it or the district nurse.

Has your Gran or Grandad been given a lung cancer nurse? We had one for my mum, and we were able to contact her for information and advice. The lung cancer nurse we had was fantastic as my mum didnt want to know anything other than treatments, it meant that we could phone the nurse and she would answer any questions. It may be worth asking if your grandad has a nurse so that you would be able to contact her and possible answer your questions that you need answers too, but your grandparents dont, if that makes sense.

If you think he has a chest infection please get him to the gp as lung cancer patients can collect water on the lungs, so its worth getting it checked.

Thanks Tots - no nurse assigned as of yet..its all a bit up in the air really. So many areas not covered by the oncologist last week and my Gran was afraid to ask more because my GD was sat next to her and she was thinking oh maybe he doesn't want to know the prognosis, details or whatever and so she kept quiet

I'm hoping the letter that I wrote for them will start the ball rolling and they have the Mac numbers so will get my Gran to ring them for advice.

Its very hard because my Gran is so stressed at the moment - she's 78 and although as sharp as a razor, she doesn't like being bombarded with too much to do and keeps saying oh we can't ask the doctors, they won't tell us, data protection act.

What also doesn't help is that my Grandad is very snappy atm...understandable of course, but my Gran is treading very carefully as a result.

The chest thing has been seen by the doctor and he's on antibiotics for that, although obviously I will keep an eye out for worsening symptoms.

Can't do any phoning for them - am profoundly deaf. Obviously, could go through typetalk with minicom etc but my Gran doesn't want anyone phoning the oncology dept except her - she's adamant they won't tell us anything due to data protection - not sure if that gets waived if patient has cancer??

not sure about data protection. But i gave my mum's hospital number and told them that she didnt want to know anything, so any questions that i needed answers to, the nurse was really good. Mum would walk out of the oncologist room, as she knew i would ask questions. It was hard, i knew the prognosis, but trying to keep a brave face for my mum was hard.

tbh i didnt want my mum to have the radiotherapy, as sometimes the side effects are extreme.

Perhaps your gran is trying to protect you by not having you phone

You said that your grandad is not eating much at the moment, could you get your gran to phone the gp and ask for build up or ensure drinks they are vitamin drinks. Also ask your gran to ask about seeing a dietician, when your grandad goes for radiotherapy, as they will be able to give ideas on little meals but with high calorie contents, (like eating cheese with everything) mum would have cheese and soup (not that she ate as much as she told everyone) she was very good at being economical with the truth when it came to see her oncologist.

There are also some medications that boost the appetite. Dad had steroids to do this at first and then his consultant put him on this other drug(can't recall the name atm)and it helped a lot. My dad normally has a very sweet tooth, but he says everything is too sweet, so taste buds are obviously affected.

We bought Grandad build up shakes from Boots to try and boost his intake so he's been having those. We've also been buying all manner of his favourite foods to tempt him to eat - Mum's even going to supermarket today just to get his favourite cheese

I'm a bit that there hasn't been a referral to a Mac nurse - they were just given a leaflet..think will speak to my mum tonight and ask her to start the ball rolling regarding that. It seems as if they have been given the information and just left to wait until radiotherapy treatment - its not on is it?!

Also, there is no help with pain management atm..he just has co-codamol for the shoulder pain (due to the mass) that the doctor gave him and that's it, but the pain seems to be getting worse by the day. I think we need a Mac nurse don't you?

My mum was never refered for a mac nurse, because she didnt really want to acknowledge the fact that she had cancer.

It was only towards the end that we were refered, we never got to see one though as mum passed away.

up until the last week mum was only taking paracetamols. When she was admitted into hospital that is when they put her on oramorph.

I would ask your gran to phone his oncologist or gp if your grandad is still in pain and ask about pain relief.

I"m so sorry Puss, it sounds as if it's a bit of an uphill battle - we were very lucky to be overseas and my dad's surgeon was our main point of contact all the time...but I would surmise that the reason you have so little info is because your gp's just don't want to hear it iyswim; certainly from the way you're writing anyway.

DEF get him better pain relief, whatever stage he's at, it's the least he deserves. There should be a pain management plan, without the need for a macmillan nurse I would've thought.

Part of the apparently increasing pain will be because he's generally feeling unwell though, which can also be tackled a bit - the not eating enough, fatigue etc., just lowers your ability to deal with the pain, not that it's a reason not to treat it, just worth knowing that getting the other things covered a bit will help.

He does sound pretty unwell, I really should not second guess about the chest infection, but I know that it can look an awful lot like that and actually be more symptoms, so I'd say your gut feeling is right here, not that taking the anti-b's are a bad idea, certainly won't make him worse.

I have to say my dad was most difficult about eating - he became very tricky about it - so I'd also counsel making shakes with full milk/bananas/or ovaltine if he likes anything like that.. and even hot drinks like marmite/chicken stock etc., he's going to need a bit of salt/electrolytes and that's most painless/interesting way to go.

Things like cheese are an excellent idea - you're obviously both really making absolutely every effort and you should be so proud of yourself; whatever happens you are making a real difference. (Hope that doesn't sound patronising, just I know that when my dad recovered, the first time, he mentioned what a difference it made to him to have the choice of yummy foods not just complan etc! He really felt looked after/loved).

Maybe even try things you wouldn't normally even off the charts fatty/sugary things if he'll contemplate them - cooked breakfasts, pastries... nutella is great if you need a few calories blah blah blah...

I'll stop now!

J
x