Diagnosis - is it bad news?

Hi Delilah27, Its not good news but it is not terminal according to what you have been told. So sorry but these diagnosis are very upsetting for all concerned. Maybe when you see the oncologist it will be more specific including the treatment. The treatment offered is to prolong life, but some oncologists are very vague as to prognosis and some are spot on, I guess due to experience. One day at a time is the way forward, enjoy it as well as you can. You both will need lots of support  including maybe some extra care fror your husband at times .  Gps now ask if you want a respect form, which can confuse family members ,  its merely for them to respect the patients wishes , if a decision has to be reached . It is natural to feel its the end but times have changed  there are lots of treatments available these days  even for cancer. Good luck to you both for next week, and hopefully you will soon be looking back and ringing the bell to say your husband is cancer free. 

Thank you Katie.

We were told yesterday that this will cause his death.

We’ve not asked when as we were too scared to and we’re not sure if we want to know.

Only treatment on offer is radiotherapy to remove pain and stop the main tumour growing. They walked my husband lazy in the appointment which I can assure you he isn’t. He’s just been in so much pain with little support that when the pain does ease he’s exhausted and has rested. We weee told he should do this. Now that’s backfired as he’s not fit enough for any type of chemo or immunotherapy. She said that she was led to believe he was healthier than he is. He also suffers with chronic fatigue due to a brain injury so it’s like a further punishment from that injury.

We’ve also learned the PET scan showed spread to the other lung despite us being told previously it hadn’t.

We are wondering whether to get a second opinion because this oncologists POV might be different to another’s.

I’ve at the moment lost all hope of any length of life let alone a cure.

So sorry to hear of your distress, and your hubands discomfort brought tears to my eyes because it is bad enough  to be seriously ill with this disease, without being told lies the details being changed every time you see the cancer team plus the planning being aimed at treatments that are not always aimed at best care of patients symptoms. No thought for the families  either emotional back up seems none existant. Like your husband it was as if I was just an older person , declining in years who could improve my lot by being more active , Its the activity that worsens my symptoms AS a ray of hope to you my pet scan showed the one lung radiotherapied was the least likely to be cancer. Now the records have changed again . I feel there should be a way to get a fast independent  second opinion otherwise in the patients & families eyes every avenue is blocked when it comes to hope. Changing the facts  or juggling them won't help  the patient will it or build any convidence in the oncology team treating the patient.? I think you have to come to a decision about a second opinion and I would be interested to know if you find someone. Take one day at a time , me & my family have a sort of everyday bucket list and if I am ill on the day  we choose something else to do . I also spend lots of days trying to deal with my own business of running a home , coping with pain etc so you will need to take into account your husbands health situation even if that just means watching TV  together . Don't feel alone people are there and realise what you are going through, I lost my husband to pancreatic cancer twenty years ago, do take care you will be in my thoughts for today. Every best wish.      

Thanks Katie. I think that’s what we’re going to do re a second opinion. I just don’t want that request to anger our consultant and change her opinion on whether or not he is worth any treatment at all. The MacMillan Nurse is calling this afternoon, but she’s also been not great at understanding our emotion or pure panic at the treatment plan. She said yesterday, ‘when I call, how is that conversation going to go?’ A bit like saying, we won’t be discussing what I know you want which is immunotherapy as it’s not on the table.

Unfortunately only the consultant or DR can talk to you about the medical pros and cons. But Macmillan nurse can help with emotional feelings . Some feelings are very common. I understand your fear about  a second opinion we had one for my husband in the end but I understood the top liver specialist , it was not a good result but he put it over with great care so I understood . We then went off to the chocolate factory to enjoy the rest of our day (smiles) and my husband got his last chance to share time. Delilah 27  do you have any family ? How does your husband feel about second opinion, all these things have to be considered including quality of life for you and your husband sometimes treatment is not best option, symptom control  is better. But you need to know so you and your husband can consider whats best for your circumstances and another thing is what is available on the NHS. Sometimes I expect treatment  plans have to change as some cancers can change quite rapidly. Hence the need for quick action. So hopefully for you both quick appointments will ensue  and help ease your fears. take care

We’re going to ask for advice from the GP about a second opinion on Monday. We don’t want it to the delay the treatment he has been offered. Even though I have family and friends, I still feel very alone. Coming on here helps with that. I’m absolutely terrified to be alone, to be with my husband while he’s ultimately dying and to try to support him while I feel I can’t function myself.

We don’t know a prognosis but I’ve inadvertently a minute ago found out it’s probably less than 12 months because they’re filling in an SR1 form to help us get PIP quickly and that’s one of the criteria.

He’s sat next to me and has no idea. This would break him and I can’t tell anyone else who knows us in case this gets back to him. So I have no one to talk to.

I’ve been telling him all day the vile protein drinks and everything he’s doing to try to be permitted immunotherapy in 7 weeks time may help him have years when realistically the doctor doesn’t think that.

My thoughts are with you too and your family. I’m so sorry you’re finding things challenging like we are.

Thank you for your reply Delilah27, the first thing I was asked to fill in and sign was a no resusitation form or in modern terms a respect form. With the SRI form it does help you get  the money with less hassle . I don't have one of them because I get pension and disability allowance and it only changes if my care needs change  or I become iller.I suppose it would be difficult for you to talk to someone alone really. Now I can help you on the being alone I was not with my husband in the final hours , I was with him on the day & the family, he was in hospital for care relief and died during the night. It can be quite peaceful in the final weeks. But as yet that might be some time to go for you & your family. Good news here my tablets from the hospital are coming  Tuesday to help relieve the symptoms. I  have heard of the protien drinks none of the reports nice. Just noticed another report has gone to my Gp . Hopefully by January everyone will have had their say and I can have mine. Once again thank you for reply every best wish

Just on the SR1 form and the PIP application. Our MacMillan nurse didn’t originally submit these as at first it was hoped my husband’s treatment programme could potentially be ‘curative’. When a scan after 2 rounds of chemo/immunotherapy showed that wasn’t the case, and he was inoperable and incurable, she has now submitted them.

She has been very clear with my husband this is NOT the same as saying his prognosis is less than 12 months, his treatment plan is so aggressive they’d hope for 3 years plus. But seeing as it spread to the nodes in the second lung he’s officially classed as stage 4 incurable and the SR1 can be issued. 

Please don’t panic about this form. Plenty of people got them to get PIP and are here 5, 7, 8 years later xx 

Yes, we have four children all grown with their own families and our parents. We’re both only children and I’m seen as the source of support for everyone. Although I do talk to the children regularly. 

My husband is keen to have a second opinion.

Thank you so much for sharing your own experiences. They’re very helpful and reassuring.

Thanks for letting me know how it was in your situation. I’m genuinely hoping my husband will live a lot longer, but he sleeps often and is in pain all the time. I’m worried about watching him die in pain as morphine isn’t touching him.

Im so glad your tablets are coming to relieve the symptoms.

Nick likes the expensive protein drinks at M&S for example but as I’ll be moving to Statutory Sick Pay that is a small worry. He would highly recommend though.

Gold luck for January. Please do let me know how it all goes as I will you.