Recently diagnosed, operable

[Dalow]

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]

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]

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

[WifeampMum]

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]

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]

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]

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]

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]

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.

Edited July 28, 2016 by Veema

[Dalow]

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

[Veema]

Absolutely nothing to lose.

[RLF]

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]

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]

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 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

[WifeampMum]

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

[Dalow]

Gosh, thanks to you all, I'm overwhelmed by your support! The initial 'operable' diagnosis was by the Spanish specialist who did the biopsy, he thought it was touching the portal vein. Then today at my meeting with a surgeon in Scotland, he said they had looked on a high resolution screen and the tumour had invaded the portal vein and tracked down it, making it unlikely to be resectable. One hour later, I was in the hair salon,and my Spanish GP who was so helpful in the beginning, phoned to say she had had a top Spanish surgeon look at the results and unfortunately, he also thought it inoperable because it had invaded the portal vein. The U.K. Surgeon said that chemo was hard to tolerate and only added weeks to life, the Spanish GP said 'please fight on' as she had another patient with a worse diagnosis, i.e. metastases which had almost disappeared with chemo, healthy diet and lots of walking. The U.K. Surgeon is going to do an MRI to double check and complete the staging, but despite the fact that I am a young and healthy 72 year old, they won't do an op if they are correct. I can't tell my husband yet, just fudge the issue as he is 83 (tomorrow) and has angina and will have to have some hope to stop him having a dizzy turn. My kids have been told the truth and are fantastic support, my daughter flying up on Monday to do something for my birthday! We have a family get-together planned fo one week in Spain later in August so I hope I can join them all, including my 6 precious grandchildren, as planned. I want to carry on for them, we are all very close.

[Dandygal76]

Hi Dalow.

There is a lot of literature out there on the formal cancer websites (eg Macmillan) that state various things about being refused treatment because of age. Looking at it all, on top of PCUK, I would contact Macmillan because they seem to be at the forefront of fighting this and have several pilot geriatric oncology projects going on at several hospitals. Regardless though, you can call them on their support line or e-mail them and they may be your first port of call to find an oncologist more supportive in your area in the UK. They liaise with Age UK as well. There is also age equality policies in the NHS and you should be treated for your fitness to be treated, it is not about age.

I hope you enjoy your lovely week of birthdays and your precious grandchildren. x

[Dalow]

I'm sorry I was unclear, but it was the surgeon who said I was "young and healthy" and despite that, they wouldn't operate if they couldn't be sure they could remove all of the tumour. He didn't say I was too old, just that the tumour had affected the portal vein past the point where they could respect it. I'm going to phone the nurses today for more information as I have absolutely no experience to know what to expect next. Thanks again for taking the trouble to help me.

[Dalow]

Resect not respect, predictive text!

[Dandygal76]

Hi Dalow

I did get the bit about them willing to operate and that it was vein involvement. For some reason I thought they were saying no chemo may be because you are 72 because I could see no other reason why they would not want to do it and seem to now be giving a poor prognosis and I have heard of this happening before if you are older rather than looking at your overall health and youth! If you are fit enough to have been operated on then the other discussions seem strange.

I am glad it is not for that reason around chemo and I hope the PCUK nurses assist you with better advice!

x

[Dalow]

I thought it was time to add a little more information about my progress, but first I must thank Dianne who spoke to me at length 10 days ago with such kindness and valuable advice, and also Jeni who spoke to my daughter in depth last week to help her understanding of this condition. My daughter followed this conversation up with phone calls to our local cancer centre, my allocated nurse and anyone else she could get hold of, to let them know we were not going away, and asking why I still didn't have a date for my MRI. It is difficult to push too hard when I knew there were 6 new patients last week, and I wouldn't be comfortable with maybe pushing someone else further down the list. We went to the GP to arrange for another private scan in Edinburgh but were told it wouldn't be any quicker. My elder son also got on the case having been told by my husband that we could go anywhere, whatever the cost. He contacted all of which have been back in touch to offer any help anytime. We passed this on to my surgeon who phoned me to say that he realised we were determined to fight, and he had spoken to his oncology professor who agreed to offer the latest appropriate treatment once I had more scans to finalise staging. The pathology bloques are arriving from Spain on Monday, another CT on Tuesday and MRI on 15th. My surgeon also said would give the same view as he had trained under him for 5 years ( and I already knew he had a great CV and reputation.) He said he prefers to be cautious, to under-promise and over-perform. As all the results will take a couple of weeks, I'm joining the whole family, 12 of us, for our pre-planned holiday in Spain before I have to start with the chemo. I'll update this when I get more details but hope a week with my nearest and dearest being pampered and cosseted in Spain will set me up for whatever is to come. Our 10th anniversary trip to Palm Springs for October and November will have to be cancelled, we were so looking forward to it, but maybe next year! Best wishes to all of you on this same journey.

[Dandygal76]

Yes... next year you will go and it is something to hold onto when you go through treatment.

If no one will operate and you have funds then the alternative I would go for right now is Dr Robert Martin in the US. He does open surgery nanoknife with really encouraging results.. I have seen amazing results. Perhaps your son could join Nanonknife Surgery Warriors on Facebook for good info. He won't treat stage IV but I think you may be a great candidate for the treatment and it seems more effective than external nano. x

[Dandygal76]

[Dalow]

Hello again, I had a wonderful week with all my kids and their babes in Spain, arrived back on Friday night late, stayed in Hilton, Edinburgh airport and met a sister-in-law and her partner to see some 'Fringe' shows and an outstanding Cosi fan Tutti in the Festival Theatre on Saturday, home to my husband at night. Now have to face my Folfirinox on Wednesday with a preliminary meeting to check my bloods etc tomorrow. My tumour has grown slightly, so much for rushing down to Spain on July 2nd for CT to save time, this is the earliest they could fit me in. Also artery involvement showed up on MRI. I don't know if it will shrink enough for Whipple, but maybe nanoknife will be a possibility. Nausea and a little pain some days and I had to come off paracetamol because it was affecting some liver function, but no one has mentioned lymph or metasteses yet so fingers crossed. Lots of questions for tomorrow :- will I be in hospital overnight on Wednesday, how soon will I feel the side effects, will I be able to drive home, ???. They don't seem to give out as much info as I would like although the oncologist was straightforward with her statements about median survival times! I pointed out I had been a statistician and that the median figure gave a more negative view to un-mathematically minded people than was necessary and if one survived the first year, the chances of surviving the second diminished less, and after that, longer term up to 5 years, diminished only slightly. I asked for a letter confirming all we talked about so I am now included in reports to my GP. I don't suppose I'll sleep much the next few nights. My husband is now being given more information by me, I'm still protecting him a bit, and tonight he said to leave the kitchen to him, he will tidy up, fill the dishwasher etc so that is good that I can let him do little jobs to feel helpful. He also said I was looking great! Pity it took this to lose that extra stone from last year's trip to Florida. Keep going!

[Veema]

My husband had a PICC line inserted so he could come home with his 5FU part of the folforinox on a pump...the other parts of the cocktail were administered at the chemo unit.

Good luck for wednesday...hope you tolerate it well.

Vx