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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Annf67
Posts: 2
Joined: Mon Sep 18, 2017 9:21 pm

Speed of diagnosis is scary!

Postby Annf67 » Tue Sep 19, 2017 6:52 pm

Hi all

Well it isn't the place just 2 short weeks ago I thought I would be. Having gone to the docs with a sore calf, I was sent for blood tests to look at enzyme problem and dvt, when the d dimer came back at over 10000 I had the out of hours doc at my door with some fragmin injections and antibiotics for an infection. This was 2 Mondays ago, went to hospital on the Thursday for an ultrasound and got confirmed as having 2 clots in my left leg. Got warfarin and more injections and just carried on. Tuesday of last week, I got rushed into hospital with a pulmonary embolism in my lung. What I didn't realise at the time but the professionals do is that blood clots can indicate PC. I had a CT on Wednesday and the consultant came to see me and my partner on thursday to say it had revealed a tumour on my pancreas and metastis on my liver. I was completely shell shocked, going from a healthy 50 year old who never gets ill to now having stage IV PC in 2 weeks is unbelievable. I now have the option of chemo to extend my time or go with pain management. Still not gone in! Doc from gp practice came today and spend some time with me which was lovely of him. My partner just keeps asking them to cure it bless him, my mum is hiding her distress well, only lost my dad 2 years ago and my kids are just in a daze. You can't prepare anyone for this but i am still here for now and will spend the time with my family and friends x

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Speed of diagnosis is scary!

Postby Dandygal76 » Wed Sep 20, 2017 12:40 am

Steph may chip in but I really recommend phoning the nurses. I am really sorry this has happened to you but we will help you and some people have longevity and more positive outcomes. Please call PCUK and post updates and I am sure you will get plenty of support. You are still raw in diagnoses as well - it takes time to reconcile it all. x

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

Re: Speed of diagnosis is scary!

Postby Wife&Mum » Wed Sep 20, 2017 1:07 pm

Hi Annf67

Welcome to the forum but I'm so sorry you have need to be here. I'm sure you will find it a very supportive and caring place.

You must be absolutely reeling from the news and now have to face the incredibly difficult decision of treatment/no treatment.

Some people respond really well to chemo and it can buy months and sometimes even years of reasonable quality life. You could try it and see how you get on.

There are powerful new life-extending treatments (Folfirinox, Gem/Abraxane) which weren't available a few years ago. This means that the grim survival figures that you may have seen on the web are out of date and don't depict the current picture.
And there are treatments that haven't made it to market yet that patients can access through trials.

I hope that whatever you decide you have the best possible outcome.

W&M xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Speed of diagnosis is scary!

Postby Justamo » Wed Sep 20, 2017 8:32 pm

Hello Ann, I'm so sorry to meet you this way.

I can only confirm what W&M and DG have already said - phone our wonderful nurses for specific advice, and please continue to post on here. We will all support you, and everybody has experience of what is happening to you. I'm sorry for your family, too. So hard for your Mum.

With every good wish
Love, Mo

patrigib
Posts: 42
Joined: Sat Mar 05, 2016 7:53 pm

Re: Speed of diagnosis is scary!

Postby patrigib » Wed Sep 20, 2017 8:44 pm

Very sorry for you, don't really have the words. My husband was diagnosed sept 2014 stage 4. We just came back from the restaurant, so there is hope. Of course PC is hard, and treatments too, but just don't get focused on statistics.
Hugs from Belgium

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: Speed of diagnosis is scary!

Postby stepuha » Thu Sep 21, 2017 2:22 pm

Dear Ann,
I am sorry about your diagnosis. Welcome to the forum.
As bad as it sounds, being diagnosed within two weeks is actually a good thing, it means that you can start treatment sooner instead of going through tests for months.
I am 37 with two young children and today is 11 months since my diagnosis with stage IV PC (mets to the liver). You can read my story in the thread '36 year old PC patient treated in France'.
One thing to say is that in the last year there has been a lot of progress in PC research and a few promising agents have been successful in early trials. The field of immunotherapy is moving forward very fast. There are treatment options available now that have not been available even several month ago (Abraxane has just recently been approved on NHS).
Take it one day at a time, try and keep fit and maintain weight and most importantly get as much support as possible from friends and family to keep your mind from going mad. You need to focus on recovery. Yes, stage IV PC cannot be cured for now but it can be stabilised for a number of years and by then the cure may be found.
On the treatment side I would strongly recommend getting genetic profiling of the tumour done. This is available privately and could be well worth the money. There are more and more targeted treatments coming out and the sooner you know that you may qualify the better.
I am happy to chat with you on Skype if you find it helpful. If you have any questions, our forum members have a wealth of information and experience. PC nurses, of course, are always there to answer your questions.
Sending you strength and positive energy,
stepuha

Annf67
Posts: 2
Joined: Mon Sep 18, 2017 9:21 pm

Re: Speed of diagnosis is scary!

Postby Annf67 » Fri Sep 22, 2017 6:06 am

Hi everyone. Many thanks for all your lovely words, it's true that at first you start reading stats and figures and scare yourself stupid with it all. I stopped doing that, today I am still waiting for more tests and consultant visits, to be honest i left hospital with this diagnosis on Monday and feel a bit out on a limb now, i am sure the wheel of MTD are turning but having heard nothing from them is a little frustrating. My head is all over the place, I think as I really don't feel ill, yes a bit of back ache and indigestion it still doesn't feel real to me. Going through the stages of anger it has happened to me, sadness for my family, frustration etc. And mostly feeling lost and very alone, yet surrounded by wonderful friends and family. I will definitely talk to the nurses on here for advice esp around treatments.

Chereene17
Posts: 1
Joined: Sun Sep 03, 2017 8:44 am

Re: Speed of diagnosis is scary!

Postby Chereene17 » Wed Sep 27, 2017 4:08 pm

Dear Ann, Your post has really struck a chord with me. You have been given this terrible diagnosis but despite the initial shock, I feel that you are a very positive person who is going to do their best to survive this awful disease. I was diagnosed with PC last December and I had no inkling at all that my ultra sound guided biopsy would reveal a 10cm x 14cm cancerous tumour growing from the tail of my pancreas. I remember asking the lady if it was the size of a walnut and she just said "no, it's bigger than that". I had six cycles of Folfirinox which really is the Rolls Royce of treatment for PC and my tumour shrank by 4cm making it possible for me to have an operation. I had this sixteen weeks ago and although I now have no left kidney, no spleen, a resection of the pancreas, stomach and bowel, I came through it! There are some marvellous treatments, everyone you meet will do their utmost to care for you and support both mentally and physically and there are some wonderful surgeons who really do perform miracles. Whilst you need to be aware of the side effects of chemo, I wouldn't recommend reading too much about how other people have been affected as we are all individuals and it's not bound to happen to you. I was lucky that I never lost my hair on Folfirinox and I know that made a huge difference to my positivity. You are at the beginning of this chapter of your life and you cannot know yet how it will develop but stay positive Ann because the mind really can help you through thick and thin when you are faced with something as challenging as this. I wish you well Ann, I really do and I hope you have someone you can talk to about your fears and emotions which I know are very real and raw right now. I am more than happy for you to contact me if you feel I can help in any way - please don't feel alone!

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: Speed of diagnosis is scary!

Postby PCUK Nurse Jeni » Wed Sep 27, 2017 4:16 pm

Hello Ann,

Thank you for taking the step to post on the forums despite being in shock from the diagnosis you have had. You will find plenty of support on here as has already been demonstrated.

Please do not hesitate to contact us should you need to. Our contact details are below.

Kind regards,
Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Mags
Posts: 6
Joined: Thu Aug 03, 2017 11:34 pm

Re: Speed of diagnosis is scary!

Postby Mags » Wed Sep 27, 2017 8:16 pm

HI Ann,

sorry to hear you are in the same position as my self and a lot more. I was recently diagnosed with PC stage 3 and tomorrow I am starting my second session of chemo [Folfirinox]. My first one went not to bad,not gruelling but not a breeze,like its already been said everyone is different and my next session may be different from the last. Im just taking evey day as it comes.

I saw my oncologist on Monday who seemed pleased with the way things had gone. He has ordered me another scan which I will have next Monday then see him again the following Monday. His reasons for doing is so he has something more recent to compare with when I get to my half way point,as my last one was 3 month.I know by now it may already have grown but he is not worried about that as it wont suggest that the treatment isn't working as it really is still early days for me. Hopefully he will have the results of my scan back,by my next appoiontment,which will be 3 days before my third treatment,but if not Im not going to let it get me down,as I said every day as it comes.

Keep your chin up Ann,difficult I know but please try. Remember everyone in here understands what you are going through and will support you in any way possible,so keep posting and let us know how you are getting on.

If you want to read my story its under the heading 'what lies ahead'.

Fingers crossed for you. Sending lots of hugs.

Mags