Newly diagnosed Mum and very confused

[Kitten]

Hello, I am new to the Board and wondered if anybody could give me some advice as we, as a family are very confused.

My Mum had a CT scan 3 weeks ago and the results where sent to her GP. When my Mum went to the GP for the results she was told that she had a tumor on her Pancreas which had spread to her Liver. She was told that she would be contacted by the Hospital to talk about treatment plans etc.

Since then, absolutely nothing has happened. We haven't heard from a Consultant.

When she went back to the Dr to tell her, the Dr made a phone call to the Hospital and the next day a letter arrived saying that she needed further blood tests and a liver biopsy (which we were expecting)

She rang the Hospital to book the appointment and the earlist they can fit her in is at the end of February!

My Mum is deteriorating so fast we are not really confident that she will be with us by then. She has lost over 2 stone in weight (she wasn;t a big lady to begin with) and had to go to the Dentist the other day as her gums have receeded so much they had to remove some of her teeth.

She was prescribed Morphine patches by the Dr three weeks ago but these are now having little affect.

We are so frustrated that someone so ill has to wait all this time for a biopsy, let alone any treatment (even palliative)

So, my question is....do you think this is the correct timescale, has anyone else experiences such a delay or is this the norm?

We have tried speaking directly to the Consultants (who he has never seen) Secretary and are told that we will be called back, but never are.

We feel that we are just sitting here, watching her deteriorate before our very eyes and noone is helping us!

Even if that is the correct timescale of events and we knew that, it would help. At the moment we feel that she has just been forgotten about and left to die because the tumor is so far spread.

I would really appreciate your advices if you have any views on this. Thank you very much

[margb5343]

Hi Kitten

We felt we had exactly the same treatment with my mum. Mum was admitted to hospital with brain tumour had that removed 2 days later. Were told 5 days later that that was not the primary and that they suspected the primary was in her stomach. We would have to wait for tumour markers to be done. A few days later we kept asking if results were back and if we could see doctor or consultant. We kept being told no results were not back, this went on for 4 weeks. In the meantime mum was in hosp all this time, eating less and less and sleeping more and more. We just thought it was the effects of having the tumour removed. They just kept saying she needs to have more scans as they couldnt find primary. We knew nothing at all until a month after surgery mum was discharged, basically sent home to die ( although we were not aware of this). My dad received her discharge letter which mentioned the pancraetic cancer, no one at all had sat down to explain. Dad had to call the next day to find out what was going on. Even at this stage they were still saying she could have chemo when she picked up. We didnt realise she wasnt going to but obviously hospital knew she never would, why give us such false hopes I ask.

Mum had an app to see oncologist (which we thought there must be some hope and an appointment arrived to see a radiotherapist) Mum was too poorly to get out of bed so we could not take her for oncologist app, we asked if we could see oncologist without mum, they said no as she had never met us. Eventually after a lot of persuasion we managed to see a consultant who was very good and told us the prognosis of 2 months, unfortunately she died 2 weeks later. Doctors obviously knew all that time and I just find it so hurtful and upsetting that no one in authority could be bothered to take the time and sit us down and tell us mum was dying. I am so angry at this.

You need to make yourself heard as its only the ones that shout that get any help. We wished we had shouted a bit more but you just think the docs know what they are doing. Unfortunatley not always.

Take care and push for scans etc before things are too late.

Take care

Love margaret

xxxx

[PCUK Nurse Jeni]

Hello Kitten, and welcome to the board.

I work for PCUK, and am an oncology nurse specialist.

Firstly, the results of the CT should have been highlighted and expedited to the GP. In fact, best practice is for the radiologist performing the scan to contact the GP immediately when something suspicious is seen. It does take 1-2 weeks before a report is done for a CT. If your GP had referred it as a"suspected cancer", it would have been dealt with differently and quicker. I do not know if this is what he did, but you can find this out. The CT would have probably been discussed at the multi disciplinary team meeting -these often only take place once a week, and if it was before the CT results, it would have to wait a week. This is the type of information which is not regularly fed back to patients, who often feel like nothing is been done. All suspected cancer cases have to be discussed at the MDT.If the hospital where your mum will be treated is not a regional centre, then they would have to wait for a visiting expert to discuss the scans. It is frustrating as well as timely. Your mum should have been sent an appointment based on this outcome.

The blood test could be a tumour marker. In the case of pancreatic cancer, this is called CA 19.9. In and of itself, it is not diagnostic, but helps to make up the picture overall. The liver biopsy, however, is crucial, and will help to formulate a treatment plan. This was also probably decided at MDT. It is common practice nowadays for a nurse specialist to contact the patient via phone to let them know the plan. Again, you could enquire as to why this has not happened.

The end of Feb is unacceptable. I would recommend that you find out (GP?) what will be the name of the oncologist your mum will see, and then ring their secretary. Insist that your mum be seen sooner and explain her symptoms. Most oncologists will realise when someone is very unwell and bring the appointment forward. Alternatively, you could get her GP to do this for her. You can also ask that a dietician be available to see your mum at the first appointment. Is she eating?

As for the morphine patches, there is no need these days for anybody to be in pain. She must contact the GP and ask for a higher dose. Or, the GP can refer her to a Macmillan nurse, who will come out to the home and titrate pain relief and assess it's effectiveness. This is vitally important actually, that she is referred now to the Macmillan nurse, so they can be involved straight from the start.

There are delays in the NHS -liver biopsies are often delayed as they require a bed to recover the patient after the procedure. if there are no beds, they get cancelled. It is a hard fact. If your mum has private health insurance, she may be able to get the biopsy done quicker? The biopsies are performed at radiology, but the patient is often sent elsewhere to a ward for recovery. Usually overnight.

I think that even if your mum was to be seen now, it would not be a satisfactory appointment, as they will be waiting the biopsy results. I should point out that these can take up to a week/10 days to be reported back. The other way to speed things up, of course, is to get her admitted. This would have to be a GP call, though, and if he felt she needed to go to hospital.

Please email me at support@pancreaticcancer.org.uk if I can help further.

Kr,

Jeni.

[Nardobd]

Hi Kitten

As always, I can't really add anything to Jeni's excellent advice other than to say that if the consultant/secretary isn't returning your calls you could contact the local Patient Advice and Liaison Service (PALS) - they are there to assist patients who are having difficulties.

I also agree with Margaret: shout loudly and often! Don't become abusive with the staff because that isn't acceptable but there's a difference between assertive and abusive. You are allowed to say "I'm sorry, that's not good/fast enough". You may just find it works!

Do keep posting and let us know how your Mum, you and the rest of the family are doing.

Kind regards

Nicki

[Kitten]

Thank you all so so much for your invaluable advice.

Things have begun to move really quickly now. Mum's liver biopsy was finally booked for yesterday but on arrival at Hospital we were told that it had been cancelled as her blood is to thin and is not clotting. We were then told we had an appointment with the Consultant in the afternoon. We were given the bad news that the cancer had not only spread to her liver but also to her lungs.

Today we had a call from the Consultant asking her to come in for further tests.

They have now admitted her, primarily for pain management as she is now going onto liquid morphine. She is due to have a stent inserted on Monday to open the Bile Duct and hopefully decrease the Jaundice. She has also been informed that Radiology is of no use at this stage but chemo maybe an option if she feels that the extra time this would give her would be worth it, taking into consideration the side effects.

Personally I feel at this stage that even if the stent works and she is able to enjoy food again (no matter how small) this would greatly increase her quality of life.

I am trying not to ramble in this e mail but my head is all over the place at the moment so apologies if I am.

[PCUK Nurse Jeni]

Hi Kitten,

Sorry to hear about your mum's further diagnosis of lung metastases.

Once the stent has had time to work, she should be able to have chemo. The chemo for this type of cancer is relatively well tolerated by the vast majority of people.

If I can be of help and you want to discuss chemotherapy at all, please email me at the support address above.

Kr,

Jeni.

[carmel]

Hi

So sorry to hear about your mum. I am in a similar position with my dad, although within 2 weeks he seems to have had more treatment than your mum. He was admitted on 1st Feb, He is 82 and we were told last Friday 11Feb that he has pancreatic cancer. They have already put a stent in the bile duct to get rid of the jaundice which seems to be working. We should know by tomorrow whether the tumour is operable. I am a little confused as they said that other than the cancer his health is ok and made it sound doubtful whether he would receive treatment. The cancer hasn't spread they said, and they were sending his results for analysis before they come to a decision about his treatment. I am afraid that they might just write off treatment because of his age and NHS finances. I am unsure of what questions I should be asking the doctor when we see him about dad's options. Can anyone help with this as I don't want to be fobbed off, I just want the best for dad who is willing for an operation.

Thanks

Carmel

[PCUK Nurse Jeni]

Hi Carmel,

I would be happy to chat through some of these issues with you.

If you would like to email me at support@pancreaticcancer.org.uk , and leave your phone number, then I can get back to you. (it is confidential and no one will get to see your number.)

I work for PCUK and am a nurse with 11 years experience in oncology. I have looked after several pancreatic cancer patients.

KR,

Jeni.