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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Theresa Upton
Posts: 17
Joined: Thu Oct 11, 2018 4:39 pm

Just diagnosed

Postby Theresa Upton » Sat Oct 13, 2018 4:43 pm

Hi everyone, I have just been diagnosed with metastatic pancreatic cancer. I am 58 years of age, have always enjoyed a healthy, active life style and until the beginning of August I was still climbing hills/mountains, enjoying holidays and just keeping busy. I started to feel very tired at the beginning of August went to the doctors and 'bang'.

I have been told that I cannot beat this one because the cancer is in my liver and an operation is not possible. I find it so hard to believe that nothing can actually be done although I do hope to start chemo on Thursday with a view to prolonging my life. I know that I am my own statistic but I would like to think that someone, somewhere can offer me more hope than I have now. I have been on steroids since Tuesday, I now have more energy, I am walking every day, my appetite has returned and I am generally more positive about my future.

Theresa

KeithKerry
Posts: 35
Joined: Fri Apr 13, 2018 8:44 pm

Re: Just diagnosed

Postby KeithKerry » Sat Oct 13, 2018 6:57 pm

Hi Theresa

My Daughter is in the same boat as you. She is just 35 years of age. She was diagnosed with stage IV in March this year. The primary tumour on her pancreas was about 3cm x 3cm. There were two small patches of the same cancer on her liver and several small nodules dotted around deeper in her liver.

She is now on a chemotherapy break of 3 months. Her liver is clear and the primary tumour has shrunk considerably (I have no idea how big it is now). Whatever cancer is left is now dormant and her tumour markers are normal.

We know that it will start growing again at some point in the future. The treatment wasn't stopped because it had ceased to work, but because there was no active cancer to treat. That means that the same chemotherapy can be used again once the tumour starts growing again. When that ceases to work there is a second line chemotherapy lined up that will hopefully push the cancer back again.

We are heartbroken, but 6 months ago we did not even know if she would be here and able to celebrate her 35th birthday. It may seem like scant consolation, but there is hope of extended life of a decent quality and you can find people that are alive 4 years or more after completing just chemotherapy.

Keep positive and determined. My Daughter did and I am convinced that it helped to push the cancer back.

Theresa Upton
Posts: 17
Joined: Thu Oct 11, 2018 4:39 pm

Re: Just diagnosed

Postby Theresa Upton » Sat Oct 13, 2018 7:06 pm

Thank you so much for your response, stories like this are really positive and really give me hope. Love and best wishes to you and your daughter and I wish her all the luck in the world. My thoughts are with you.

Theresa

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Just diagnosed

Postby kate2101 » Sat Oct 13, 2018 10:45 pm

Hi Theresa,

So sorry you to hear your news. Your story is a mirror of mine, I was diagnosed in June with spread to liver, multiple lesions, just 60, healthy, no weight loss, just vague symptoms and indigestion. It was like a bolt from the blue. My life fell apart.

Strange to say, life has now settled into a routine. I have number 7 chemo next Thursday (Folfirinox), should have been last week but my platelets were low so it was postponed for a week. I had CT scan results last Wednesday and everything has shrunk and my CA19-9 levels have fallen dramatically so the chemotherapy is doing it’s job for now. I’m feeling pretty good, I lost about a stone initially but I’ve put most of that back on again.

Try and stay positive. I refuse to accept I have only months left, I’m looking for years! Stay as fit as possible, eat well and listen to your body.

I don’t want to be in this position but it’s the way it is and I have to get on with it but I mean to fight all the way.

Stay positive and make the most of every day 😊 x

Theresa Upton
Posts: 17
Joined: Thu Oct 11, 2018 4:39 pm

Re: Just diagnosed

Postby Theresa Upton » Sun Oct 14, 2018 3:49 pm

Thank you Kate for your response and believe me I am trying hard to stay positive and am doing everything I can to keep on top of the fight, like you I am looking for a few more years.

Theresa

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Just diagnosed

Postby toodotty » Sun Oct 14, 2018 4:55 pm

Hi Theresa,
I am so sorry to find you on this forum with Stage IV PC. Firstly, I am 56, also Stage IV and diagnosed back in March (also fit, active etc). Do not believe or accept the fatalistic attitude of most of the medics you will meet on this journey via the NHS. Your options on the NHS are extremely limited, there are private options available but you will need to research and fight for everything. The statistics relate to all IV PC sufferers, half of which are over 75 with a series of complex medical issues.

First advice, keep fit and active (never mind "you need to take it easy …..") and listen to your body. Make sure that you have Creon to help with the digestion of food, also consider veggie/vegan as an option. Ensure that you get copies of all your scans onto disk, and all blood test results so if you end up in A&E you can evidence that you are not about to drop dead immediately but that blood test result abnormalities may be due to chemotherapy. (I have a complete medical summary ready to go and in my emergency bag if I need to go to hospital.)

Accept that life will be different, but keep positive and don't give up HOPE.

toodotty

Theresa Upton
Posts: 17
Joined: Thu Oct 11, 2018 4:39 pm

Re: Just diagnosed

Postby Theresa Upton » Sun Oct 14, 2018 5:39 pm

Thank you toodotty. So far the attitude of the medics that I have met has been very negative, they do not appear to give a balance and I am afraid that at first I accepted what they said and gave up before I even started, however I now have the fight and am ready to push myself as far as I can go.

Theresa

patrigib
Posts: 45
Joined: Sat Mar 05, 2016 7:53 pm

Re: Just diagnosed

Postby patrigib » Sun Oct 14, 2018 8:27 pm

Just to add some positive news and to give you hope. my husband was diagnosed Sept 2014 stage 4 ( liver mets, only has had chemo and still here. The doctors gave him less than one year at diagnosis.
Pat

Theresa Upton
Posts: 17
Joined: Thu Oct 11, 2018 4:39 pm

Re: Just diagnosed

Postby Theresa Upton » Sun Oct 14, 2018 8:33 pm

Oh Pat, thank you so much, your reply has really given me more hope, what a great site this is. I appreciate I have a long way to go but onwards and upwards.

Theresa

Desso
Posts: 2
Joined: Mon Apr 03, 2017 6:23 am

Re: Just diagnosed

Postby Desso » Sun Oct 14, 2018 9:00 pm

Very sorry about your diagnose Theresa, but as many already has posted there is hope. I am 53 and was diagnosed with PC stage IV in December 2016. My chemo treatment was very effective, and I was able to convince my medical team to perform surgery and remove the primary tumor after 9 cycles of folfirinox. Mets are still visible on CT scans, but I have been of treatment for 17 months now without any indications that the cancer has started to grow again. I personally think the first weeks after being diagnosed was the worst. After a while you just have to adapt to a new situation and do the best out of it. Life is not fair, and we have to play the hand we are given. For me it took some time to understand and accept that, when I did I found it easier. Now I try to enjoy every day and focus positive. Best wishes<3
Last edited by Desso on Mon Oct 15, 2018 5:33 am, edited 1 time in total.

Theresa Upton
Posts: 17
Joined: Thu Oct 11, 2018 4:39 pm

Re: Just diagnosed

Postby Theresa Upton » Sun Oct 14, 2018 9:05 pm

Thank you Desso, it really isn't all doom and gloom is it, there really is hope out there.

Theresa

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Just diagnosed

Postby kate2101 » Sun Oct 14, 2018 9:23 pm

It’s so good to read positive stories, makes such a difference. I agree with Desso, the first few weeks are the worst, somehow you learn to accept the situation and life returns to some sort of normality. Most of the time I feel ok and there are days when I can almost forget about ‘the beast within’. I’m not going to let it dominate my life, I have lots to do and I’m not going to give in. I’m not going to pretend I don’t get down, the black cloud is never very far away but it’s not difficult to find someone worse off than myself. I still have a good quality of life at the moment and can do almost everything I used to do before diagnosis, I give myself a good talking to when I’m feeling miserable and read positive stories ....thank you Desso and Patrigib!

KeithKerry
Posts: 35
Joined: Fri Apr 13, 2018 8:44 pm

Re: Just diagnosed

Postby KeithKerry » Mon Oct 15, 2018 6:23 pm

Desso wrote:
> Very sorry about your diagnose Theresa, but as many already has posted
> there is hope. I am 53 and was diagnosed with PC stage IV in December 2016.
> My chemo treatment was very effective, and I was able to convince my
> medical team to perform surgery and remove the primary tumor after 9 cycles
> of folfirinox. Mets are still visible on CT scans, but I have been of
> treatment for 17 months now without any indications that the cancer has
> started to grow again. I personally think the first weeks after being
> diagnosed was the worst. After a while you just have to adapt to a new
> situation and do the best out of it. Life is not fair, and we have to play
> the hand we are given. For me it took some time to understand and accept
> that, when I did I found it easier. Now I try to enjoy every day and focus
> positive. Best wishes<3

Thaat's very interesting Desso

Thank you for sharing your message of hope. Did you have your surgery in the UK?

Alanc
Posts: 2
Joined: Tue Oct 16, 2018 4:38 pm

Re: Just diagnosed

Postby Alanc » Wed Oct 17, 2018 10:31 am

I have had a CT scan yesterday and am awaiting the results.

My symptoms have not been to severe as some on here, mainly loss of weight and pain the back, some changes to bowel movements etc.

I am slight encouraged by some of your stories cos I am of the opinion that PC is a hopeless case but comments of here suggest otherwise, I am at the point where I feel sure I have PC and just want to know how far it has gone.


Apologies if I sound irrational but am out of my mind with worry and think from comments it depends on how bad you are when diagnosed what the outlook might be.

I certainly know the meaning of fear right now which I am sure you all do.

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Just diagnosed

Postby toodotty » Wed Oct 17, 2018 2:44 pm

AlanC, you will be irrational and out of your mind with worry. PC is not always a hopeless case but you must remain positive and keep fighting. If they do diagnose you, it is really important that you get into treatment quickly, the NICE guidelines are complete nonsense with an aggressive cancer like PC. Do not be afraid to make a nuisance of yourself if necessary.
The chemo, whilst unpleasant will usually alleviate many of the symptoms, I have been living with PDAC Stage IV since March, about to have stage 9 of Folfirinox on Friday but for most of the time I am fit and healthy, I am even thinking of joining a gym now the weather is getting bad.

toodotty