Hi. I hesitate to write this but I had a similar situation with my mother and I'm very sorry to say I think when it's stage 4, rare and aggressive the prospects are bleak and possibly prioritised lower. In hindsight no-one with an NHS badge actually wanted to say it out loud but the situation was way past the point of being treatable and they almost let us find that out for ourselves.
What we eventually did was in despair got her admitted to a cancer ward as an emergency inpatient (pain was intolerable) and from there she went to a hospice and it was all over pretty soon. I hope that isn't the case for you and your family, I'm only sharing my own experience because I wish people had been a bit more forthcoming with us at the time even if it's very hard to hear.
Definitely not the case. Regardless of cancer stage, the trust has a target to hit and they lose money if they don't hit it (sounds cold, I know) every single cancer case is handled as fast as possible. It's likely they were discussing all possible outcomes of various treatments before informing you, sometimes that involves a lot of discussion with different trusts to get different opinions.
They have to hit the target, but that target is 64 days (excluding testiclular which is 32) to start treatmen, including waitful waiting. If they know there is limited options, palliation is often nearer that 64 day mark than treatable cancers.
In my trust they want to get that referred and started sooner rather than later, they don't delay just to delay. But if they have the time to do try and look at all options possible before fueling that person out.
Same here also, Mum had been receiving radiotherapy and chemo, one night we rang for an ambulance to get her into hospital because she was in a lot of pain, this was in 2020, they sent her home a few hours later saying that she couldn't be on a covid ward, they told us not to admit her again, eventually we were able to speak to a doctor who was honest and told us to consider hospice care and she would be dead in 2 weeks. The following day I was giving her liquid morphine for the pain, they sent it home with her. We had to get a doctor to the house, he was superb, ordered a load of stuff from the pharmacy, started the ball rolling with MacMillan nurses and the local hospice. We got a load of her friends, neighbours and family to call in to say their goodbyes then she went into the hospice and died a week later
It's crazy that they can't just come out and say 'Treatment is almost certainly going to be ineffective, and we don't want to provide false hope or potentially prolong and increase the pain you're already suffering.' If the patient and the family still insist, then it's simple for the consultant to say, 'I'm sorry, but the NHS agrees and won't offer this course of treatment'.
If it was me, I'd want to be told outright what my chances were.
I’m sorry about your mum.
I understand OP - it’s against human nature to do _nothing_ in the face of such a diagnosis but the problem is sometimes nothing is all that there is to be done.
The thing I was most grateful for when my dad was ill - was the doctor finally just saying that he was dying.
The consultant genuinely tried. Even tho my dad was diagnosed with an incredibly aggressive and rare cancer, he was still in the chemo the week after diagnosis. Then another round of chemo, then radiography. Then they considered stem cells.
The consultant finally asked my dad what kind of news he wanted to hear (i.e how honest did he want the doctor to be), and he eventually just told us that there was nothing they could do. The cancer was too aggressive, and essentially - by the time that form is cancer is diagnosed, it is already too late.
It was almost a relief to just know he was dying. He was only ill for 5 months but god I wouldn’t wish those 5 months on anyone.
I was going to comment the same, as much as I hate to say it this is likely the correct answer. It’s incredibly challenging to handle and we went through it last year with my Dad, the endless chasing is tiring, so I send you and your family all my thoughts and support. Hospice at home care was so much better and only wish it was available earlier in the process, truly night and day compared to hospital communication and honesty. I hope you can get the support they and all of you deserve soon!
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Former radiotherapist here, I hate to say this but I believe you’re right.
More often than not patients aren’t privy to their actual diagnosis, treatment options and life expectancy.
The amount of patients I met who had no idea they were receiving palliative treatment instead of radical treatment was astonishing. Eventually they’re informed of their actual diagnosis and what that means for their future.
Many patients are left shocked as it’s often later on into their cancer pathway journey, they have already received some treatment and may have thought this was with the intent of being cured.
What is the official diagnosis and do you know the TNM score?
Diagnoses aren’t always given straight away to patients.
Diagnoses can also change during treatment and many patients are 100% not told straight away. I’ve see this countless times.
You can think what you want.
I’ve seen this first hand more times than I can count.
When you say straight away are you talking about, like that same day as a scan result comes in? Because obviously.
If you are talking about clinicians deliberately withholding a diagnosis from a patient while treatment starts or continues then that doesn't happen, and if you think it has you should incident report because it shouldn't.
I’m talking a patient begins radical treatment, their diagnosis changes, their treatment plan is then changed to a palliative plan and 2 weeks down the line there they’re still unaware of this.
No healthcare system is perfect. Particularly not the NHS.
Patients can be left in limbo, communication between patients and clinicians can be extremely poor, communications gaps exist, conspiracy of silence can occur, misunderstandings occur, inadequate training is rife. All of these things are true.
Mistakes do happen and are made.
In just telling you what I’ve witnessed on numerous occasions. Not what I think.
I don’t think it’s that clinicians deliberately withhold informations with the intention of malice by any means. Our healthcare system is far from perfect.
Here’s an interesting study on the topic - https://pmc.ncbi.nlm.nih.gov/articles/PMC7050325/
Honestly I can’t really tell you anything without any context.
Niraparib can be used to treat, manage and extend life expectancy.
It’s also often used to prevent tumours from growing/progressing as it blocks the repair mechanisms of cancer cells.
Heck, when mum was dying she was transferred to hospice for pain management ostentiably. I work adjacent to the hospital setting and specifically asked whether this was palliative/end of life care. They told me straight to my face no, this is for pain management only as the hospice has more understanding of it.
Lo and behold, the wonderful hospice doctor who called me hours after transfer was horrified when I reacted with shock to the fact that this was end of life care and she had 'short weeks'. The hospital had been discussing discharge plans with me mere weeks before so it felt like it came out of nowhere. It turned out the specific type of fibrosis was was diagnosed with six months earlier had a life expectancy of about six months. They didn't mention that either and I'd looked up fibrosis rather than the specific subtype so was completely in the dark.
My mum was actively dying and the out of ours doc that came to the care home told me “she has a chest infection , I could give her some antibiotics” 💀😭
Dude … she’s like a few hours away from leaving this earth .. why would you EVER suggest this?
This sounds like what happened with my Dad. We had to infer more from what wasn't said, than what was, about his prognosis.
Also, I probably shouldn't find this as darkly funny as I do, but until we had the medical examiner report, no-one at the NHS *actually said* he'd died. Just brought me into the room.
My dad died of sepsis. He's in intensive care, they're calling me at midnight and I still had to bully it out of them that they wanted me to come in because he was dying. I'm like, mate, I know where he is, I know who you are, there's only two reasons to call at midnight, is he dead or dying?
I'm so sorry for your loss, I hope you're doing ok. Although, your message did remind me of something else that I found darkly funny. I saw my Dad a few hours before he died, but because no-one told me how badly he was doing (with some staff talking about a change in his pain medication that would happen when the new shift came on in a few hours) I went home to get a bit of sleep. I get a call about 4ish hours later and they say I should come in to see him, to which I said, "does this mean he is doing worse than last night?" and they said, "yes he is".
So I rush up to the hospital and they were technically correct - he was doing a bit worse, as he was dead.
Funny ol' world.
Unusually- and possibly because they didn't have English as a first language- the nurses on the 'dying' ward didn't mince words. I'd just got home from the hospital when I got a call saying 'I am sorry, your mother will be dying soon'. And she did, just before we got there.
Well I’d rather that than the craziness that happened to some of the people in this thread, where no-one actually tells them.
Sorry for your loss, I hope you are doing ok.
Thank you. She was ready to go, I couldn't begrudge it. Miss her though.
I'd already been spoken to about the 'palliative pathway', say what you like about Margate hospital but they don't keep you in the dark.
I can understand your humour. Not quite the same, but we knew my grandad was dying and it was expected he would pass in a couple of days time.
We arrived and I could tell by the staff reaction he’d already died. Those with me didn’t realise.
We were taken to a room and it took the doctor seven minutes to actually say he was gone. Even then they didn’t say died.
I'm sorry for your loss - I can imagine you understanding, but the other family members not, must have put you in an awkward position. I hope you're doing ok.
>More often than not patients aren’t privy to their actual diagnosis, treatment options and life expectancy.
That's a damn disgrace... To think I didn't believe my partner when she said doctors do withhold diagnoses from patients like this.
Its not true. People are told, clearly, but sadly they don't always take it in or accept it and that's really tricky for staff who have to tell them repeatedly. I've had patients completely stick their head in the sand and say 'well I'll fight it' after being told very very clearly their cancer wasn't curable. Others who told us never to say the word cancer and who would slam the phone down or storm out the door if we did.
People are told, they just don't always react as we'd expect.
Then again, I've had a number of NHS referrals put in for me, and noone's told me why I suddenly had a community psychiatric nurse, a care coordinator, or why I'd been referred to dietetics.
I will defend the NHS slightly here. Having witnessed this with my mum and dad (dad being the sick one) it was that they just didn’t want to hear it. It could have been written in the sky in 10ft letters and they would have turned round.
Some of it was panic, some of it was denial and some of it was bloody awkwardness. It was very very hard for them. Even though both were early 60s and of sound mind, I found unless I was in the appointment, I wouldn’t get a proper version of what had been said. I could even be there and they’d try and tell me something different.
Any cancer treatment I’ve been offered it was always explained to me what the differences were with Intent to cure , Palliative intent etc …
I’d be hoping even those with non intent to cure options would have been walked through this when they sign their treatment agreements. But I suppose I can’t be surprised between NHS being a mess, people not being able to advocate for themselves , others not even bothering to pay attention .. or even just being sad, confused , alone and no idea what’s going on.
I wish that was the case for everyone (it should be).
Sadly many people are left with no real idea/genuine understanding of their prognosis and what means for their future.
You would be shocked at how common this is.
My mum died of metastatic stage IV lung cancer two months ago.
When we went to see the oncologist she was very open and explained that the genetic sequencing of mums cancer meant that it was particularly aggressive and when asked she said that mum had 5-6 months left and that there was a very real possibility she may not see Christmas.
She explained that she could offer chemo but it would only extend her life by about 2 months and could mean she would be in and out of hospital all the time so mum decided not to have it.
After that it felt like everyone just washed their hands of it and no support other than MacMillan offering singing groups or painting groups was given for the next 5 months. Finally she caught pneumonia in early Jan and was finally admitted to hospice in late Feb for ‘pain management’ before we got the call at 5am to get to the hospice quickly. Mum died at 07.34 that morning.
I cannot fault the hospice as they were great. They’d sent her from the hospice to the hospital a few days before she died for an xray and the hospital left her in a corridor for over 8 hours with people literally dying around her before deciding it was too late to xray her and sent her back to the hospice.
A couple of days later she died. I’ll be eternally grateful that I saw her the day before and she was lucid.
She originally never wanted to go into hospice as she wanted to stay at home with my dad caring for her, but by the time she died, her pain was so severe she was grateful to go in.
It was an incredibly tough time and I struggle with how the hospital treated a dying woman and how we had to fight for carers to come in and for her pain meds to be increased etc
Unfortunately two weeks is standard these days. For rare cancers that don't have as many specialists, it can be more. There is a shortage of oncologists at the moment, and even worse for histopathologists. . However there is one plus, two weeks isn't that long in terms of cancer growth. It doesn't spread as fast as people think it does. Some specialist tests you need to start cancer treatment can take at least a week. And they would t do anything to put your family member at unnecessary risk.
However, this should all be explained to you. I am so sorry if it hasn't, and I hope your family member has pain relief etc if not. Do speak to your specialist nurse, you can still be referred to the royal Marsden if need be. Ask the nurse what the hold up is, is there more testing of a biopsy needed? Has a report of a CT been delayed? If you feel that it's been too long you can speak to PALs.
Oncology nurse here working in diagnosis clinics.
Firstly I’d recommend getting copies of all the scans and biopsies from the NHS trust where they were treated originally.
If you wish to go private you will need these.
Secondly the delay is often due to decisions that need to be made by specialist doctors at their weekly meetings. If this meeting is due to take place on a Monday and it’s a bank holiday… well the decision is delayed. By a whole week. It’s awful and I can’t believe it’s true, but it is. A week in real time for a person who’s just had a stage 4 diagnosis is interminable.
I would also say - the squeaky wheel gets oiled. Call, call, call your nurses and your consultants secretary. I know that sounds bad. But make yourself a nuisance. Ensure they know your name. Trust me. It helps. Good luck
My mother in law's diagnosis was delayed by a couple of months from first attending oncology, by that point she was in terrible pain and the family had to call 999/111 twice as she had no pain medication. When the hospital called her in, her daughter asked how long she had and was told 2 weeks. Those couple of months with pain medication and being made comfortable would have made a big difference.
It’s just so awful and I’m so so sorry she went through that. I’m transitioning out of these services at the moment. I’m completely burnt out from the suffering and the terrible wait times we put people through.
Ex-cancer patient who was treated at the Royal Marsden. Do everything you can to be transferred there, the treatment is world class and the staff are absolutely amazing.
It's just shit, there's nothing more to say. Look after yourself, lean on your friends and family, let them help when they offer. Don't try to face this by yourself.
PALS is a good suggestion, but the 2 week wait pathway was for diagnosis and also doesn't exist anymore.
The target/standard in OP's case is that it should be 62 days from referral to starting treatment, ideally.
It was a national change. Some staff are still referring to it because patients are familiar with it and understand what it means, but its not measured anymore. The new target is the 28 day Faster Diagnostic Standard, which is to get from referral to either diagnosis or exclusion of cancer within 28 days. Its actually a better target as the old 2 week one was just to the first appointment.
The data doesn't need to be submitted nationally but I know of a few trusts that still use/aim for and measure 2WW for first appointment as well as 28 days.
I'm so sorry to hear this OP, this is an awful time for you and it's being made worse by the long waits and unclear information.
It might be worth asking for a GP to try and get them an urgent bed in a local ward? Idk if you have any cottage hospitals near you.
I understand that in some places it's almost impossible to get a GP on the line.
Are you getting district nurses attending the home at all?
From my experience with my father, who had a rare, aggressive stage 4 cancer, I’d say do what you can by following up with the relevant clinical nurse or department, but know that much of it is outside your hands. Focus on spending time with your loved one, supporting them, and taking it day by day.
When my father was diagnosed, he was initially supposed to see the oncologist in three weeks and then start chemotherapy two weeks after that, which felt like such a long wait. Luckily, we received a call offering him an earlier appointment, and he was able to start palliative chemotherapy the following week.
I expected we only had weeks left, but in fact we had nine more months with him, and I was so grateful for that time.
While statistics can help us understand the reality of a situation, they don't define every individual outcome. I'd say don't give up hope, just take each day as it comes.
It is probably more important to know about pain management options, what to do when in a lot of pain and need help. Consider if you need hospice support, as that could take quite a while after referral! I believe you can ask to be referred to hospice support once one receives a terminal diagnosis.
I am so sorry that you are going through this.
My friend was given a stage 4 diagnosis last year for breast cancer "that had spread to the spine and sternum ". She paid for a private consultation at the Royal Marsden who, after scanning her, downgraded the diagnosis and tore our local hospital to shreds regarding her treatment. I don't want to give you false hope but if you can afford private then do it. My MIL was diagnosed with a rare and aggressive cancer (cholangiocarcinoma) and all the private care in the world couldn't help her, some cancers are, statistically, a death sentence from day one. I hope you can get the help you need ❤️
Come on, pal. "a *very rare cancer*" and "*highly aggressive*" and "*stage 4*"
*A* cancer specialist at Royal Marsden
Some diseases are so rare there just aren't many specialists. When a cancer is "highly aggressive" and "stage 4"... mate there's probably nothing they can do at this point. Nobody is being plain about it to OP and their family, and that's not OK, but there we are.
Absolute bollocks. Should be being supported with a hospice at the very very least.
I can guarantee you a million percent that ‘we can’t do anything’ wouldn’t be the treatment you’d get from a private provider.
Hospices are only for either temporary symptom management placements or for the very last days of life, and there aren't nearly enough beds in them for every dying person to get one.
The cost/benifit is a political issue and decision though. We don't have the resources as a country to spend hundreds of thousands to millions to fund low chance potential life-extending/saving care that puts the person through a lot of suffering. If paying for it privately you care about your own situation, not a populations, the fact that the money could be also spent improving the life for 10 other people doesn't play into your decision.
What everyone deserves is someone having the frank conversation with them about their situation and the options they have. Not being left wondering what is going on and what will happen. Especially when they have limited time left, maybe finding out 2 weeks earlier means they can plan to do more things before they are unable.
I love that you’ve completely ignored what I said about hospice support.
Yes, if it truly is terminal, it’s down to the patient to choose. But they should be referred at least and be able to make that choice.
Oh, and we totally DO have the money, it’s just that the NHS is so incredibly badly run it wastes literally billions upon billions and places more value in expanding its management bureaucracy than anything else.
No other health system wastes as much money. Your mind would be truly blown if you actually understood how foundational that waste is.
I'm sorry ☹️ have you tried contacting PALS. It wasn't cancer related but they sped things up for me. Also ask to be on any cancellation list for any consultant apts and phone alot to see your position in the que x
MacMillan, PALs and (depending on their age) AgeUK. MacMillan and Age UK were fantastic for my Dad.
I don't know the specifics of the cancer, but I would also suggest taking a note of the NHS Continuing Healthcare (CHC) scheme. I hope you don't need it, but for certain patients with chronic cases that require much more complex healthcare support (e.g. home support, or a residential placement), it can be invaluable.
Wishing you all the best
I’m really sorry to break it to you but you should make the most of your time with that family member. Stage 4 aggressive is a low priority because it’s just not going to get better. Especially given it’s a rare cancer.
The same thing happened to my granddad last year and they held off on treatment because it’s prolonging the suffering. He had enough time to get his end of life sorted and say his goodbyes to family. He would have had more time with grandma if she’d accepted it. Grandmas gonna carry that one till she dies.
I’m so sorry but your family is fighting a fight that can’t be won. Make what peace you can with your loved ones death and make sure they don’t face it alone.
I'm sorry for what you are going through having walked that path recently I emphathise and know how hard it is - the constant delays don't help.
Unfortunately in my experience it comes down to getting shouty. Talk to PALS, to the lead of your GP surgery, talk to your MP and regional councillors, talk to local press if necessary.
You should not have to do this but the NHS is massively under resourced and unfortunately your family member is one of thousands of people in the treatment process.
We had weeks of being pushed from person to person, with a few days delay at every stage. By the time treatment had started the cancer had metastisized massively.
While it was Stage 4 and the delays wouldn't have affected the outcome, they definitely reduced the life expectancy and I regret not being more pushy.
I’m unfortunately going through this exact situation with my Dad right now (Stage 4 melanoma) and I’m getting so frustrated at the lack of urgency seemingly shown by the NHS with them not giving us updates or just sending letters out which are then for an appointment a week later
It may be that the next step is palliative care I’m sorry. You may want to look at options as palliative care could be done via community teams and your family member could stay home.
My mom is stage four. We had to constantly call the ward ask charities for the best advice. PALS can also help with cancer treatment it has seemed quicker then when I needed help before.
It can also be really hard between is the treatment going to help or if it is going to help and I know that's not a reality anyone really wants to hear.
I hope this helps in a small way. I also can only say that if you ever want to vent to a stranger that gets it feel free to DM
I actually work in a cancer team and I can tell you that basically the 2 week rule was scrapped a while back, though trusts still try and get the first opa booked within that time.
Your referral can take up to 5 days to triage depending on how that's done, then it will go through an mdt (meeting with all doctors) which often occue once a week.
The next step is usually either an appointment, more imaging, or discharge. In your family members case I'd expect either further imaging or an appointment to discuss treatment. It just depends how far diagnostics are and how complex the treatment will be.
Sometimes it can take more than two weeks before you really hear anything because the NHS lacks capacity to keep patients updated with every step, but I'm willing to bet you're on someone's list and there's someone like me harassing all the relevant teams to get it all done. If you're not convinced then PALS is your best bet.
Had the same with my Dad. We got him out of a particularly nasty hospital ward and with the help of MacMillan Nurses, got a hospital bed at home, where he wanted to be.
He passed peacefully, pain free and surrounded by those who loved him, even enjoying a few sips of a G&T on the afternoon before he died the next day.
The NHS is fucked. You are best of going abroad.
Someone I knows relative got referred to a specialist & put on a waiting list, flew to the states , tried an experimental treatment, unfortunately passed away, got buried, & a few months after burial got a letter from the NHS with an appointment date.
Someone from my family had a growing lump, got told she will have to wait 10+ months to have it properly checked. Instead of living almost a year in constant stress, she went to Poland & had an X-Ray, MRI, all sorts of blood tests & results after 2 days. For around £200. Thankfully turned out to be nothing serious.
Go to eastern Europe, go to east Asia, even the states if you can afford it. The health care here is beyond a joke.
If it has been almost 2 weeks you can try contacting the specialist at RM yourself, but I would wait until this Wednesday and then ring your relative’s oncologist’s secretary to press for an early appointment.
Depending on which cancer this may be, as it is rare, the oncos will doing multi-disciplinary team meetings, trawling through waiting lists and possible drug trials, and trying to work out pathways.
And you can read up on the condition and prepare yourselves for understanding how chemo, gene therapy, radiotherapy, and palliative care may work.
Cancer is uncontrollable cell proliferation. All cells have an ‘off switch’ because we have constant cell replacement schedules. Sometimes - for many possible reasons - that ‘off switch’ stops working and unhealthy cells don’t die off as they should. Sometimes we can’t find or create an off switch.
It sucks.
I hope your relative and their medics negotiate the ways ahead with agility and good luck. Make memories now (recordings are lovely but also scrap books, photos, storytelling, and going out to smell the flowers) while you can. Love each other well.
Sorry to hear this op, my Dad went through something similar before passing away recently. I would say that we got the most information from the hospice palliative care nurses, the actual hospital don’t care. If your relative is admitted to a hospital I’d push for them to get a hospice space, the hospice for us were amazing, the hospital were shockingly bad.
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