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

Re: Recently diagnosed, operable

Postby Dalow » Thu Jul 28, 2016 11:35 pm

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Recently diagnosed, operable

Postby Dandygal76 » Fri Jul 29, 2016 8:33 am

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

Re: Recently diagnosed, operable

Postby Dalow » Fri Jul 29, 2016 11:05 am

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

Re: Recently diagnosed, operable

Postby Dalow » Fri Jul 29, 2016 11:06 am

Resect not respect, predictive text!

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Recently diagnosed, operable

Postby Dandygal76 » Fri Jul 29, 2016 1:19 pm

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

Re: Recently diagnosed, operable

Postby Dalow » Sat Aug 06, 2016 11:20 pm

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 Heidelberg, Princess Grace Hospital, Cambridge Cancer Centre and John Hopkins, 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 Prof B from Heidelberg 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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Recently diagnosed, operable

Postby Dandygal76 » Sun Aug 07, 2016 10:55 am

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
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Recently diagnosed, operable

Postby Dandygal76 » Sun Aug 07, 2016 11:05 am


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

Re: Recently diagnosed, operable

Postby Dalow » Sun Aug 28, 2016 6:02 pm

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
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Recently diagnosed, operable

Postby Veema » Sun Aug 28, 2016 6:40 pm

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

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

Re: Recently diagnosed, operable

Postby Dalow » Mon Aug 29, 2016 10:41 pm

I feel like swearing, another setback today with my blood results, another function is raised (bilirubin) so chemo postponed. Stent is a possibility so I can have the Folfirinox they want to give me. Let's hope I get that done more quickly before something else goes wrong.

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

Re: Recently diagnosed, operable

Postby Wife&Mum » Tue Aug 30, 2016 10:05 am

Feeling for you - treatment delays are very upsetting and frustrating. Hope you get sorted asap. W&M xx

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: Recently diagnosed, operable

Postby Proud Wife » Tue Aug 30, 2016 11:18 am

I feel for you Dalow. So frustrating. Hopefully you get the stent fitted ASAP so that you can have chemo.


Good luck x

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Recently diagnosed, operable

Postby Dandygal76 » Tue Aug 30, 2016 7:15 pm

Delays around this feel horrid Dalow.. you have my every sympathy and hopefully they will resolve the issues promptly. I have learned with this that you have to keep the pressure on.. politely of course but pushing your case will help speed things up in my experience. x

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

Re: Recently diagnosed, operable

Postby Dalow » Wed Aug 31, 2016 11:52 am

Thank you all once more for your very kind replies. I'm sitting waiting for the porter to take me to X Ray to have the procedure at around 2.30, third in the queue. Being in here demonstrates how many more have our problems, some much younger and some much worse. Cheery staff up here beside the silvery Tay. Xx