Dad Advanced T4N1 help?

[staceystarr]

Hi everyone.

After being in pain for 11 months the hospital finally did a CT scan for my dad.

We got told on Friday 25th Nov 2016 my dad has inoperable stage 4 pancreatic cancer . . We are now waiting 2 weeks for a biopsy and a further 2 weeks for an oncologist. Is it worth finding a private oncologist or use the NHS one? It's looking chemo won't even start till end of December. This I feel is a long time to wait with little time on our hands. Has anyone gone down private route and if so who did you contact and where do I start. I looked at the nanoknife however they need notes from the NHS and I'm unsure how I go about getting these sent over to them and will it jeopardise dads case on the NHS as we would still need the chemo to kick start.

Would you just wait till we start chemo before we look into further options or get the ball rolling now?

Any help would be so grateful.

I can't sit around and wait for this nasty cruel disease take my dad

Thank you

[Dandygal76]

I am at work so have to be brief right now but I am really sorry you are going through this.

I am taking a punt in advising you because I have no idea of your dad's circumstances but I would start with getting on a trial that will give your dad Abraxane because that is not available on the NHS (unless you are in Wales or Scotland) and you will only have the chance of getting it on a trial unless you are truly wealthy (speak to the professor - he is linked to the up to date trials).

As for the nanoknife, you only need the CT scan to be sent. This can also be done privately for around £600 and the consultation is £400.

Let us know how you get on and good luck

Edited November 28, 2016 by Dandygal76

[Dandygal76]

Okay, I have a bit more of a chance to respond now.

Stacey, we are all with you and willing you through this horrendous time of waiting on the NHS. It is a truly awful time and we get your frustration. The hospital your dad is being treated at should be able to give you a copy of the CT scan onto disk (they sometime charge a small fee) that you can send regarding the Nanoknife. However, you need to look at the mets - in my experience once the PC starts compromising the liver then that is when things can take a turn for the worse. Therefore, if you go for nanoknife I think you will find that they will recommend ablation of the mets to start with. Nano is not proven but anecdotally I see good results and if you are on facebook I would seek out the 'nanoknife warriors' for advice. The nano costs about £15k and ablation starts from £9k.

The quicker you can get to chemo the better as far as I am concerned, especially before the patient weakens. It seems quite hard to come back from an already deteriorating state around the chemo and so you need to look at your dad and make those judgements. If he is in otherwise good health then it is not so bad to wait but the illness is unique to everyone. It seems that people either get the super aggressive nothing you can do type or they get a chance to fight (this is not medical knowledge but just my personal experience of it). If your dad has been on this merry go round for a while then it does suggest you may be in the latter comment. What I will say is talk to the NHS whatever you do as there seems to be some difficulty with mixing private and NHS care that I have not bottomed out myself yet. You do not want to compromise your dads future NHS treatment.

We got dad on a trial before the NHS oncology appointment. They were dire in how we had to wait and the trial kicked in before the NHS appointment came through. It was the best decision we ever made around this. It took 2 months from diagnosis to get the chemo for dad and he is doing okay right now so the wait is awful but not necessarily a disaster.

[staceystarr]

Thank you for your help

I have emailed the professor just so I'll let you know what he says.

My dad looks in good health at the moment. So you would recon just wait till the chemo comes through?

Xx

[WifeampMum]

Hi Staceystarr

Welcome to the forum but I'm very sorry that you have need to be here.

If I were you, I would also put those questions to the PCUK Support Line - they are professionally qualified specialist nurses and very experienced and friendly.

You can contact them by phone or email:

Freephone 0808 801 0707

support@pancreaticcancer.org.uk - See more at: http://www.pancreaticcancer.org.uk/support#sthash.XOhA40ii.dpuf

Dandygal has great experience of a particular doctor and I'm not doubting his clinical expertise but he isn't an HPB specialist and I would opt for specialist care given the choice.

The private vs NHS question has no easy answers I'm afraid. Speaking from personal experience I think for PC the NHS has the edge over private care but then you have to contend with waiting lists which I appreciate can be torture. And sadly in some cases an extra wait can adversely affect survival.

Wishing you and your Dad the very best

W&M xx

[Veema]

So sorry you've had to come here.

If your Dad is stage 4, that suggests spread...do you know where it has spread to?

I would imagine they need the biopsy to determine the type of pancreatic cancer and hence the best treatment for it? We had brilliant care on the NHS until the last few months when I feel we were let down, but that was because our oncologist was on maternity and we had a string of locum doctors.

Lots of love and luck with it...it's a truly awful disease and like us you've found out about it at one of the worst times (not that there's particularly a good time, but you know what I mean). BUT...there are many stage 4 sufferers that do really well and have a good quality of life and are keeping it at bay, so fingers crossed for you.

Vx

[Dandygal76]

W&M is right that I can only advise you as to what has helped us. I think I point the way towards the Prof as well because of his access to and knowledge of the trials, they have some interesting trials at the moment if the tumour has the right biomarker. The Professor is no miracle worker but I have found the private consultations more constructive and the fact he has the access to the HCA resources. You can call the HCA and get a varied list of oncologists so please do that to access the same. I think that grabbing hold of some hope and positives really helped us and that is what this professor did for us. I don't think I agree the NHS has the edge on this - there are positive and negatives to both sides. Our experience of the NHS has not been good but that is just us. I have seen people have both positive and negative experiences in both the private and the NHS. As for us, being on a privately funded trial has been brilliant.

As for spending the money on private chemo - if you are a millionaire then go for it. If it will though cause you to suffer financially then I am not sure the gains you will make will translate into anything substantial. But, no one knows to be honest and so we cannot advise on this personal choice.

What I do know is how terrible and desperate you are probably feeling right now and it is not the time to be making crippling financial decisions that will affect the rest of your life for unknown (if any) gains. I would spend the time researching and learning. Get some 2nd opinions and private consultations to compare to what the NHS state. Have a look at the trials available because you may be able to get on these quicker. Research the nanoknife and ablations. Call PCUK and do get their advice as well.

It is an overwhelming time for you and it is a steep learning curve but you will draw strength you never knew you had.

xxx

[staceystarr]

Thank you all for your support

The nanoknife has said his tumour needs to be 4cm to operate. His is at 7cm at the moment so I am hoping chemo can shrink this. My only frustration is the waiting to get the chemo started for him as we are not meeting our oncologist till 19th December.

I have emailed that professor you mentioned and he needs my dads notes. I think i need to wait till he has the endoscopic camera and then I'll request for the notes then.

I wouldn't mind if the NHS was quicker with the biopsy and getting the ball rolling but waiting for a month seems like a long time to me.

[Dandygal76]

You can get a private biopsy for around £3k - we did this but they didn't even manage to get a sample (it is a difficult procedure because of where the pancreas is) and so it was a waste of money. The option is there though and we got the procedure within a few days. Also, they measured my dads tumour as 5.4 cm but the professor who does the nano said the size was incorrect (it is an art as well a science I think reading these scans) and he put it at around 2 cm. This is why it is good to get other opinions to cross check things. Every time my dad has a scan I get a second opinion on it... but I am nuts and obsessed with the whole blinking thing.

It may be worth sending the scan - I know it says 4cm online but I am quite sure it is anything up to 5cm when we discussed it with Prof.

Stay strong hun, this waiting part is the worst but you will get through it.

xx

[staceystarr]

Dandygal76 wrote:

> You can get a private biopsy for around £3k - we did this but they didn't

> even manage to get a sample (it is a difficult procedure because of where

> the pancreas is) and so it was a waste of money. The option is there

> though and we got the procedure within a few days. Also, they measured my

> dads tumour as 5.4 cm but the professor who does the nano said the size was

> incorrect (it is an art as well a science I think reading these scans) and

> he put it at around 2 cm. This is why it is good to get other opinions to

> cross check things. Every time my dad has a scan I get a second opinion on

> it... but I am nuts and obsessed with the whole blinking thing.

>

> It may be worth sending the scan - I know it says 4cm online but I am quite

> sure it is anything up to 5cm when we discussed it with Prof.

>

> Stay strong hun, this waiting part is the worst but you will get through

> it.

>

> xx

Thank you

You know when you your dad has a scan. Can you keep requesting this? Is it easy to get hold of his CT on disk?

[Dandygal76]

Because dad is on the trial he gets scanned every 8 weeks for the trial data. This always happens the day before he starts a chemo cycle and we get the results the next day. The trial and the professors I mention etc are all linked on the HCA system. So, the moment I have the results from the trial doctors I then get a professor (usually Professor ) to look at the scan on the system and so we have no need for disks from that aspect. We have been very fortunate in the path we found (touching lots of wood - I don't want to tempt fate!) and the trial that we are on. The fact that everyone we need right now are linked is helpful. We are going back the week after the next scan and are paying for an additional consultation with Prof so that we can throw a few questions his way and also, his consultation was so informative for us last time. We cannot have nano whilst on the trial (even though the trial drug has finished). We want to touch base and revisit our plans.

If you want to then you can get private scans and we have done this - they are between £500 and £1000 depending on the scan. However, if you have a recent scan on the NHS they will provide it on a disk and they are used to these requests and it is easy for them. We got the scans from dad's NHS hospital very easily and they charged £10 for it. I ordered multiple copies and sent them to every Tom, Dick and Harry in desperation at the time.

Have I missed it in your posts or did you say where your dad's metastasis are?

[staceystarr]

Metastasis? Sorry I am new to this.

I think it hasn't spread anywhere apart from lymph nodes near by the pancreas. We was told it was T4N1 so I think that's what it means.

I have messaged that email you gave me and he has asked for notes. As soon as dad has his biopsy on the 13th I shall request for the notes to send over to him

In the mean time I'll get his. CT scan and send over to nanoknife to see if the tumour is any smaller than what the NHS says.

Where do you go for your private scans?

Everyone has been more than helpful thank you so much. Xx

Dandygal is there anyway I could speak to you on other means of social media. Just easier to check messages on facebook

[Dandygal76]

Stacey, I think I have just seen your comments from this morning on Nano Warriors. Please don't ever worry you will offend people on the NHS for making these requests. This is your dads life and it is his data. The NHS are used to this. They are used to second opinions etc because most people want that on a terminal diagnosis - no professional in their right mind would take offence. They are used to requests for information as well and people seeking alternatives. I have never had any issues with getting information from them and whilst a lot of oncologists do not agree nano helps they have always respected my dads decision around this. The Macmillan nurse at the start packaged all my dads records to send to Germany and didn't even blink at the request even though she absolutely knew we would not get anywhere with trying to get the operation there. You do what you need to do and don't worry about offending anyone over these things. x

[Dandygal76]

I will send you a message now - it will be in your 'other' I assume. Bear in mind I am full of ideas but have absolutely no medical qualifications whatsoever! All ideas are best run past professionals and PCUK nurses.

[Justamo]

Stacey, I am so sorry to hear about your Dad. You will get plenty of support and experience on this forum, but please phone the helpline too, because the PCUK nurses are totally brilliant.

Have you tried to get an earlier appointment for the biopsy and the oncologist ? Might be worth speaking to department secretaries to see if earlier appointments can be squeezed in. I did it for Peter right sat the beginning and it worked. They said he could have his 'urgent' CT scan in three weeks. I told them my definition of urgent was 3 days, not 3 weeks, and suddenly an appointment turned up for 5 days time.

It is disgraceful that he's been in pain for 11 months. I am so sorry, and do hope that you can get a plan in place soon. How old is your Dad ?

Love

Mo

[staceystarr]

Hi Mo

He is 57.

We have called up the NHS and said we want faster appointments. They said they will let us know if there any cancellations. Very frustrating!

I have also requested my notes now so as soon as I get them I'll send them off. I'll keep you all posted and if anyone knows of any more places I can try please let me know xx

[Justamo]

Keep on phoning Stacey. And be terribly polite but persistent. The water dripping on a stone method usually pays off in the end.

57 is no age at all. Is he otherwise healthy ? No heart problems or anything ?

Love Mo

[PCUK Nurse Jeni]

Hello Stacey,

Thank you for your posts on the forums, and as others have pointed out, not a place you would wish to be. However, I see that you have already had some great support from the others who have found themselves also on here. Thank you to everybody who has replied to Stacey so far.

I apologise that we have not responded prior to this Stacey, due to staff leave.

I am very sorry to hear that your dad has recently been diagnosed with pancreatic cancer, and it is good that he has you advocating for him, and information finding, which can be a big thing to face.

I note that others have posted our details on here also, so please do feel free should you wish to contact us. Our details are below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707