How were you given news of terminal cancer.

[kwaitang]

I wondered how other people were given the news of their terminal cancer.

Towards the end of May, my husband was in hospital being treated for what he thought was jaundice.

He had all sorts of tests, scans etc:

He was in a public ward when the doctor came and told him that he had inoperable cancer.

I do not know what was said as the first I knew about it was when my husband rang me.

I asked if they could operate on, what I thought was just some sort of blockage, when he broke down and said he had been told there was nothing they could do for him. I had never heard my husband cry. He couldn't get any more words out. I remember shouting "I'm coming down, I'm coming down". He was still sobbing when I put the phone down. The total devastation and panic took hold. I just seemed to be rushing from room to room and not really going anywhere. I did manage to ring my sister who came straight here to take me to the hospital. I went to the ward and we just held each other and cried. We couldn't talk. After a while I realised that there was curtains round the bed and I puilled these shut. The doctor came down and confirmed to me what he had told Keith. While all of this was happening I didn't notice anything else around us. But in retrospect, is a public ward with no privacy the right place to give someone this sort of news? I am so angry that there is nothing better in place to deal with this type of thing. I am angry that my husband was left on his own, feeling humiliated because he was crying. (yes I know he shouldn't feel bad). I can feel the pain of that day as if it were only yesterday. Were other people treated better than this or is this the norm. Arlene.

[cestrian]

Arlene

I guess there is no ideal way to deliver a massive kick in the gonads but I cannot help thinking that an open ward is hardly suitable.

In my own case it was left to my GP to whom it was an equal shock as he had only just opened up the report on his computer that contained the results of the CT scan that revealed the devastating news. The cancer was inoperable with lesions in liver and lungs. He could not have been more sensitive and I shed no tears, told him death held no fears for me and drove round for an hour or so wondering how to break the news to my wife and family. Of course there were initial tears as I shattered my wife's life followed by breaking the news to my beloved daughter. She undertook the unenviable task of telling her brother in London and so we all became aware of my diagnosis and determined that however long I survived this time would be remembered not with tears but with joy.

There are undoubtedly huge differences in circumstances. Age, young children, vulnerable loved ones all affect one's reaction to the awful news but one of the main factors once this has sunk in is the quality of care that is then delivered. I thank God every day for all the marvellous people who have been responsible for making me feel truly blessed to have received amazing care, respect and consideration from day one.

Today I have a mugga scan on my heart,tomorrow a further CT scan of the affected areas and Wednesday my weekly bloods, observations and whatever other checks are scheduled for this week. No chemo as end of cycle three but probably a meeting with my Professor or his assistant to discuss outcomes. Of course I'm on a clinical trial funded by the pharmaceutical company but this level of supervision should be the norm as so many problems arise from conditions that go unnoticed and untreated until they reach crisis proportions and this cannot be right in one of the world's wealthiest countries that can send millions of pounds of aid to a nation that can afford to send a rocket to Mars.

Ramble/Rant over - sorry all!!

Love and Peace

Mike

[J_T]

Mike, I have had a discussion with my MP about foreign aid. I feel the same as you. Plenty of places at home where that money would be more useful.

Arlene as to your question. Following the onset of itchy jaundice Ray had a CT scan, he wasn't feeling too chipper at the time. We waited about two hours for the results. Parking at the hospital is a nightmare and we were on limited time. In hindsight that shouldn't have mattered but anyway. A doctor in Ambulatory Care, who I now know is a renal specialist, called us into a room and talked about blockages in the pancreas. Nothing from this rang any bells. At this point I said I really must go and move the car, he didn't try and stop me and I've wondered since if I was just trying to escape the room and deep down knew it was something awful. I came back to find Ray in tears, it was then that this doctor said that it was 'probably' cancer but he was no expert, wtaf! (Hope you know your forum acronyms!). We were told there would be an MDT meeting in the next few days to discuss the case, we got NO feedback from that meeting. On the plus side he arranged for Ray to have an ERCP. We were given no clue as to what to do next regarding the cancer. No contact numbers, names, leaflets or booklets. We were too shocked to ask and walked out in a daze.

On the way home Ray said to me 'I asked him what the prognosis was'. This doctor who 'is no expert' told him 2-3 months! He sat, for the most part, this most professional of men, leaning back in his chair with one leg up across his other knee and his arms folded behind his head while he delivered this blow. I have zero respect for him.

Until our GP got involved, it was down to us, as a family, to fight for information. The MDT was a faceless bunch of uselessness for the most part. The surgeon did his bit, the oncologist did his bit. We never saw a dietician and we only found out who our specialist nurse was through Macmillan, I phoned her twice for advice that was sadly lacking.. TEAM is the last word I would use!

So to answer your question, how were we given the news. BADLY!

Edited November 11, 2013 by J_T

[PCUK Nurse Jeni]

Hi Arlene, Hi Mike,

Thank you for your posting about how a persons diagnosis is given to them. Arelne - I am very sorry to hear that Keith was told in this way. There will be, undoubtedly, more folks on here who will have had a similar experience, because, sadly, this is something which still happens.

Mike - good to hear a positive story, although ideally, you should always be told such news when you are accompanied by someone, especially if you then have to drive a car. However, that said, its quite clear from many of your postings that you are a very strong person, who as you said, does not fear death. You may well be in a minority there, as the general population probably requires more support.

Arlene, and anyone else reading this, there are policies in place in every hospital in the NHS regarding the giving of news such as this. These are known as Breaking Bad News policies. There should be a copy of these on every ward, and on the hospital intranets. These policies should be adhered to on each occasion a person is given bad news. They will include things like environment - they are meant to take people to a private room, away from the bed, if at all possible. If nothing is available, then they should be sensitive to multi occupancy bays and the fact that curtains, although offering some privacy, are not soundproof. The person being told should not be told alone, so an arrangement should be made for when a family member is there, and at a time to suit the schedule of the hospital staff. Language should be clear, understandable, as well as empathetic, and there should also be a nurse there, unless in extreme cases.

There is probably a lot more in there, but generally, these are the main pointers. If anyone has had an unpleasant experience with the way they have been told, then it is perfectly reasonable to go and ask whether this policy was implemented, and even ask to see a copy of the Breaking Bad News document. Being able to read what should happen will allow you to compare your own experience, and perhaps give constructive feedback. PALS (Patient Advice and Liaison Service ), if available, may also be able to assist you.

Jeni, Support Team.

[Slewis7313]

Hi Arlene (and others), looks like I am jumping to NHS Wales' defence once more. The lead up to my diganosis was (unlike many) not a particularly difficult one as I had felt ill for a while, but none of the symptoms were bad enough for me to be Hospitalised and I felt quite well. We had as a family beem briefed the week before that i had a lesion on my pancreas which was probably cancerous and would need to see the surgeon. This happened quite quickly and we attended en-mass expecting to discuss surgery. The 2 senior surgeons had obviously been busy so the clinics were being run by a single registrar, meaning our 4PM appointment turned out to be nearer 7:30PM. We were taken to a quiet room and the registrar turned up with a Specialist Support Nurse in tow. He was as diplomatic as possible in the situation, but confirmed it was indeed cancer and also that it was inoperable. We were given probably 15 minutes or so for the tears and everything to sink in before being left, with the nurse asking me to contact her as soon as possible to discuss any questions.

Maybe not perfect, but I think they made as good a job as they could of breaking the news and obviously done much better than for many of you out there.

Take care

Steve

[PCUK Nurse Jeni]

Steve,

Thanks for sharing this - its important that we tell the good stories as well as the not so good ones. Don't feel guilty for "defending" a hospital or NHS Trust - it is actually GOOD when it is positive news and how it should be! Its also good in terms of sharing practice, and maybe other Trusts could learn from how they do things elsewhere, in order to improve things? This is one of the good things about sharing, hopefully, is that others get to glean from positive experiences. Maybe by posting on here, if there is someone waiting for a diagnosis, they can be aware of the BBN policy, and try to make sure in advance that it is being used. Although, I accept it might be the last thing on a persons mind in that scenario, but worth keeping in mind.

Thanks all,

Jeni.

[MisterM]

Arlene,

I'm sorry to hear you news, from reading the forum quite a bit over the last nine months it seems that many PC patients get a rough ride. In February, my parents were told my dad's diagnosis in a private office, but then asked to leave straight away as the Dr had another appointment.

They were left standing in a corridor after being handed a death sentence. No specialist nurse or support for them. I am still furious about this, but at the time we had a lot else to worry about. He died in August and a stiff letter to the hospital is still very much on my to-do list. Jeni, the existence of a BBN policy is news to me, so I'll be raising that.

The GP already knew the diagnosis, but later admitted that he couldn't bring himself to tell them himself!

Best wishes to everyone affected by this horrible disease.

[J_T]

MisterM - same here re letters to write and likewise did not know of BBN. No specialist nurse at our consultation either.

[Cathy]

Hi folks

Well, just to stick my little oar in, Jonathan found out alone in a meeting with the consultant in a private room and afterwards he was offered a counsellor.

The news was completely unexpected as he was really well other than some low level pain. We both thought he was going in for a routine check. It was so unexpected I'd gone off to Southampton for a work meeting for the day and found out initially by text, on the train heading home. I can never think of Southampton now without shuddering. Apologies to anyone who lives in Southampton.

I asked afterwards if this was normal practice, to be given such awful news without being asked to bring someone with you. I was told not but the scan results were not what they had expected either - his appointment had been made before the scan had been looked at.

Cathy xx

[Birchen]

Hello Arlene

My husband was also told in a shared hospital bay in June 2013 that he had inoperable pancreatic cancer. He was totally on his own and was told at 9.30 am and our son did not arrive to visit until 4 pm. We were absolutely shocked that he had been told in this way so we made a complaint to the hospital trust to save any other family having to go through the same. After a meeting with the consultant (first time we had met him even though Terry was in hospital for 9 days) and the patient care team they have advised that under normal circumstances you would go into A & E and would be referred to a consultant but as Terry went into A & E and straight to a ward this was not the case. They have apologised and hopefully will take on board our comments but we can only say the nursing staff were brilliant, there does however seem to be a shortage of doctors, especially at weekends. Hope everything goes well for you and your husband.

Lyn xx