A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Dalow
Posts: 11
Joined: Fri Jul 15, 2016 12:46 pm

Recently diagnosed, operable

Postby Dalow » Mon Jul 25, 2016 9:43 pm

I have been under investigation for the last two months. I had an ultra sound on 24 June, was told I'd have results in two weeks but the next day, my GP rang my doorbell to say a mass had been found on my pancreas, (we were expecting gall bladder problems,) and she had asked for an emergency CT scan but it would probably take two weeks to get an appointment. As I live 6 months in Spain, I called my doctor there who arranged a CT scan for the next day. My daughter and I flew that afternoon to Marbella, had the scan the next day with the results and a cd the same afternoon. The results were encouraging, no spread, no lymph involvement, operable but endoscopy required. I flew back to Spain the next week and had that done on 14th July. In the meantime my appointment had come through for my CT scan in Dundee for 12th July. A nurse phoned me to check I had cancelled my CT there, and asked to be kept informed and given Spanish results. The specialist who performed the endoscopy was one of the top two Spanish pancreatic specialists and his opinion was 32X24mm in head, no involvement with blood vessels or pancreatic duct but close to both, no spread or lymph involvement apparent. Back to Dundee and sent results to them, just waiting for biopsy results which arrived midnight last Thursday, definite cancer. My Dundee nurse is off till tomorrow but I'm hoping to get an appointment to discuss the possibilities and timing of having treatment in Dundee as opposed to going back to Quiron Hospital in Marbella where they will do a Whipple very soon. I want to give Dundee a chance as it is so close to home but do not want any delays since I have been so lucky to catch this before it spread. Anyone have any info on timescales to expect for treatment in NHS. By going to Spain I have saved several weeks and don't want to waste that advantage.

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Recently diagnosed, operable

Postby Veema » Mon Jul 25, 2016 10:10 pm

Absolutely can't fault the NHS with my husband's treatment. His was initially inoperable, but all the tests, scans, ultrasound and stent fitted were done within 2 or 3 weeks. When he eventually did get the whipples (after some chemo), he made a fantastic recovery and the surgery itself has never bothered him at all.

Good luck x

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Recently diagnosed, operable

Postby Dandygal76 » Tue Jul 26, 2016 8:16 am

We had the opposite experience. We found them painfully slow and we sped it all up with private scans. From point of diagnoses through to being told stage 4 he was told it was operable and we were gearing for dad to have the op. Then they decided on pet scan few days before the op and found lesions in liver measuring in mm and a tiny bone met. Op was called off. I think it can be a bit hit and miss depending where you live. If using our experience I wouldn't waste one minute if someone is offering op quicker. I really wish we had not waited for the NHS to procrastinate and that we had run to private op immediately. What they say about 1 or 2 months to diagnoses, op or chemo not effecting things I think is rubbish from everthing I read. Pc will grow quickly and stick 2 fingers up whenever it chooses. Sorry to write such a negative post in but I think both experiences matter in your decision making. I hope you have a successful Whipple and that you never look back and lead a healthy lovely life. X

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Recently diagnosed, operable

Postby Wife&Mum » Tue Jul 26, 2016 9:12 am

Hi Dalow

Welcome to the Forum but I'm very sorry that you find yourself here.

Apart from timing you need to consider how many Whipples the surgery teams perform. A surgery team that do less than 100 a year is not good and it's probably a case of the more the better.

Good luck and do let us know how you get on.

W&M

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Recently diagnosed, operable

Postby Ruthus » Tue Jul 26, 2016 9:55 am

Dear Dalow

I am very sorry to hear about your diagnosis but I am pleased you have been found to be operable. That is very good news. I agree with the above comments. It can be very much influenced by where you live and the current waiting times. When I was first diagnosed they thought I would be operable in the UK and told me there was a wait of six weeks. However I was then deemed inoperable in the UK.
If you read my story you will see that in the end I sought private care in Germany and they booked me as soon as possible. The hospital in Germany performed 5 pancreatic procedures each day and 800 a year so I was very confident in their ability. W&M is right in stating it is important to look at how experienced the surgeons are at each of the hospitals and how experienced the hospitals are in general with dealing with PC.

We actually have a holiday home in Spain and spend alot of time there. We have recently been there for two weeks and I needed to have my cental line flushed. In the end we went to a Quiron private hospital near Alicante and they did my flush staight away! We had to pay but it was very good service.

I wish you all the best Ruth

Dalow
Posts: 11
Joined: Fri Jul 15, 2016 12:46 pm

Re: Recently diagnosed, operable

Postby Dalow » Tue Jul 26, 2016 12:19 pm

Thank you for such speedy replies! I'm going to wait till tomorrow when my case will be reviewed in Dundee to see what they say. I think I would rather be treated at the Quiron, Marbella, because of no delay, but my husband is 11 years older than me ( I am 71, until this very fit,) and visiting and help from family would be better for him here. We have only been married 10 years - I was widowed 13 years ago- my three children are all prepared to travel to Spain on caring duties, or indeed to Scotland if I stay here. The thought that it might spread if we delay is foremost in my thoughts. My Spanish doctor said I am so lucky so far, most cases she has had have metastasised.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Recently diagnosed, operable

Postby Didge » Tue Jul 26, 2016 1:04 pm

If you have a good surgeon in Spain who can operate quickly I would go with that. Unless you have a good surgeon lined up in Dundee who can match it time wise. Some tumours grow very quickly so unless the biopsy shows a less aggressive tumour I would not waste a day more than necessary.

Dalow
Posts: 11
Joined: Fri Jul 15, 2016 12:46 pm

Re: Recently diagnosed, operable

Postby Dalow » Thu Jul 28, 2016 9:00 pm

Bad news day. Unfortunately the Portal vein is involved and both surgeons ( in UK and Spain) think it therefore is inoperable. The tumour appears to have travelled down the portal vein beyond where it might be resectable. One surgeon does not recommend chemo as it will only add a few weeks of life, the other team are in favour. Any views from experience please.

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Recently diagnosed, operable

Postby Veema » Thu Jul 28, 2016 9:11 pm

Have the chemo!!! My husband's shrunk considerably and away from the blood vessels it was engtangled with making it operable.

And lets face it...if it shrinks away from the vein, making it operable, that's the only chance of a cure.
Last edited by Veema on Thu Jul 28, 2016 9:13 pm, edited 1 time in total.

Dalow
Posts: 11
Joined: Fri Jul 15, 2016 12:46 pm

Re: Recently diagnosed, operable

Postby Dalow » Thu Jul 28, 2016 9:13 pm

Thanks Veema, I know my children will be equally positive, nothing to lose is there?

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Recently diagnosed, operable

Postby Veema » Thu Jul 28, 2016 9:14 pm

Absolutely nothing to lose.

RLF
Posts: 223
Joined: Tue Nov 19, 2013 9:30 am

Re: Recently diagnosed, operable

Postby RLF » Thu Jul 28, 2016 9:24 pm

Only add a few weeks? But you have no metastasis at the moment? To me that is very bad advice (obviously I don't know all the facts but from what you've written anyway), chemo has added years onto peoples lives here on this forum. If the chemo can shrink the tumour making it operable then even better! Glad you've got 2 doctors to talk to, also talk to the nurses on here as they have a lot of valuable information.

The chemo route is tough, but it does work well for people and hopefully that will be your case too!
Rob
x

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Recently diagnosed, operable

Postby Proud Wife » Thu Jul 28, 2016 10:01 pm

Totally agree with Rob. I was wondering why they said only a few weeks if it's locally advanced. My hubby had multiple liver mets at diagnosis, breezed through folfirinox but couldn't cope with gemcitibane/abraxane after disease progression. Everyone is different and everyone responds differently.

The choice whether to have treatment is of course yours at the end of the day but you could always try it and if you felt it was too hard to tolerate, stop but first of all, I'd get clarification as to why chemo will only add weeks. My hubby was told that after the 2nd line chemo when he was considering a 3rd. You haven't started yet.

Wishing you the very best
PW xx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Recently diagnosed, operable

Postby Dandygal76 » Thu Jul 28, 2016 10:05 pm

Wow... that is surprising advice to go from near operable to no treatment. I am sure they would have not offered the operation as a potential unless you were in decent health otherwise and could cope with it. Def go with the team that is offering it - can I ask if that is in the UK. I agree with Rob - v bad advice and you do not seem to sound as though you want a no treatment route.

You could also put forwards for a trial - there is a database that may be quicker but if you go private there are other trials (you don't pay for the trial but the initial consultation and biopsy) and this is what my dad did (you need to e-mail PCUK and they will tell you where we went to do this because they prefer no names on here). Or just ask for my e-mail. You need to weigh this up against chemo available though because I doubt you will get Folfirinox on a trial and that can have a good response with people with the 'right' kind of PC.

There is also the nanoknife option with prof nano in London (again ask PCUK or e-mail me) but that is around £13k and may shrink the tumour enough.

My dad has had shrinkage in his tumour and so yes, the chemo and other options can change things but as RLF stated - I do not know the full details. Your post of the opinions though did shock me.

If it is NHS saying no please don't forget you are entitled to a second opinion if you want the chemo here.

I am gutted for you, I thought you was going to be back with better news. Being as far as we are now and after probably overloading you with advice - the one bit of advice over all of the above - call the PCUK nurses tomorrow and they will really help. They have trodden this path with people and have so much more experience than us!

Much love. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Recently diagnosed, operable

Postby Wife&Mum » Thu Jul 28, 2016 10:59 pm

Hi Dalow

I agree with the posters above - the "no chemo" advice sounds questionable. Many times on this forum patients and carers have complained about the nihilistic attitude that clinicians have shown towards them, and sadly under-treatment is not uncommon.

Also it's normally an oncologist who decides whether chemo is appropriate, not a surgeon.

I do hope that you have much more hopeful news going forward.

W&M x