A forum for family, friends and carers of pancreatic cancer patients

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Tessie
Posts: 3
Joined: Thu Nov 13, 2008 10:01 pm

New diagnosis.

Postby Tessie » Sun Nov 16, 2008 1:13 am

Hello everyone, with a heavy heart I have joined in this site. My husband has just been diagnosed with pc (probably with liver involvement). He does not want any facts from the medical team so therefore it will be up to me to get the information and do what I can with it. Has anyone any useful advice to share? And a bit of hope? I am in bits.

Tessie

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: New diagnosis.

Postby Ellie » Sun Nov 16, 2008 8:15 pm

Dear Tessie

I am so very, very sorry that your husband has been diagnosed with pancreatic cancer. I know the shock you are going through and the devastation you feel. Everyone on this site will know that feeling too.

My husband didn't want to know much about it either, so I did all the research, which is heartbreaking at times. I think it's important to read what you can, understand all the information and then find a way to deal with it, whatever that way will be for you. If you want practical advice, read everything on this site. Try Cancer Backup & the Macmillan site. Read other people's experiences. For emotional support, talk to your family, friends, people whose shoulder you can cry on, if you need to. That will be important - as much as you want to look after your husband, please look after yourself too. Easier said than done sometimes, but try to eat properly, rest and, at times just simply "escape". You may find it's a rollercoaster of emotions and sometimes you have to get off, to recharge your batteries. That will keep you strong and positive to face another day.

I think the one main thing to do - in my opinion anyway - is to take one day at a time. Try not to think too far ahead, or you will feel overwhelmed. Try to be positive, too. As hard as it is, as awful as the facts may be, there HAS to always be hope! Someone has to beat the odds!

The people using this site will help and support you, I am sure. Please write and get your feelings out on here and know that everyone will be thinking of you and supporting you. Once you feel you are not going through this alone, it will help a little.

Thinking of you and wishing you all the luck in the world as you try to make sense of why such an awful thing has to happen to your husband.

Very best wishes
Ellie
xx

lottied
Posts: 15
Joined: Fri Oct 24, 2008 12:11 am

Re: New diagnosis.

Postby lottied » Mon Nov 17, 2008 6:28 pm

hi, I'm so sorry that you are having to deal with this terrible news. I found out in July that my sister who is 45 has pc we didn't find out until the beginning of Oct. that the liver was involved. Tomorrow she starts her chemo at XX in Manchester. She has chosen to go on clinical trials. We like you, are hoping and praying. We take each day as it comes. She has up and down days. One day she looks srtonger then the next she looks so ill. This is when they need you to be strong. It isn't easy and I feel for you, I hope I can pass on my strength to you and if you need to talk then come on to this site. At the moment this is my lifeline and I just let everything out. Don't give up there is hope ahead. Love to you all.

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: New diagnosis.

Postby Ellie » Tue Nov 18, 2008 6:41 pm

Hi Tessie

How are you doing? Have you found the information you need? This site can be quiet, so if you are really desperate for contact with other people, try the Macmillan site too.

Let me know if you want any other info on that side of things, but you will find friends here, too.

Best wishes
Ellie
xx

Tessie
Posts: 3
Joined: Thu Nov 13, 2008 10:01 pm

Re: New diagnosis.

Postby Tessie » Thu Nov 20, 2008 9:16 pm

Thanks so much for your replies. Joseph is now home from hospital - having had an infection while an inpatient (he needed IV antibiotics) . We are going to see the oncologist next week. Any suggestions of what exact questions to ask?

He is very very tired and has awful nausea (perhaps its the antibiotic hes still on). Any thoughts?

Thank you so much again for replies

Tessie
Last edited by Tessie on Thu Nov 20, 2008 9:24 pm, edited 1 time in total.

Tessie
Posts: 3
Joined: Thu Nov 13, 2008 10:01 pm

Re: New diagnosis.

Postby Tessie » Thu Nov 20, 2008 9:22 pm

Thanks so much for your reply - I have written a general reply. Gosh I can not handle this technology! In any case Joseph is home from hospital, he had an infection before discharge and was on IV antibiotics. We are going to see oncologist next week. Any useful questions to ask? I will write more if this message actually gets to you.

Tessie
[quote="Ellie"]Dear Tessie

I am so very, very sorry that your husband has been diagnosed with pancreatic cancer. I know the shock you are going through and the devastation you feel. Everyone on this site will know that feeling too.

My husband didn't want to know much about it either, so I did all the research, which is heartbreaking at times. I think it's important to read what you can, understand all the information and then find a way to deal with it, whatever that way will be for you. If you want practical advice, read everything on this site. Try Cancer Backup & the Macmillan site. Read other people's experiences. For emotional support, talk to your family, friends, people whose shoulder you can cry on, if you need to. That will be important - as much as you want to look after your husband, please look after yourself too. Easier said than done sometimes, but try to eat properly, rest and, at times just simply "escape". You may find it's a rollercoaster of emotions and sometimes you have to get off, to recharge your batteries. That will keep you strong and positive to face another day.

I think the one main thing to do - in my opinion anyway - is to take one day at a time. Try not to think too far ahead, or you will feel overwhelmed. Try to be positive, too. As hard as it is, as awful as the facts may be, there HAS to always be hope! Someone has to beat the odds!

The people using this site will help and support you, I am sure. Please write and get your feelings out on here and know that everyone will be thinking of you and supporting you. Once you feel you are not going through this alone, it will help a little.

Thinking of you and wishing you all the luck in the world as you try to make sense of why such an awful thing has to happen to your husband.

Very best wishes
Ellie
xx[/quote]

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: New diagnosis.

Postby Ellie » Fri Nov 28, 2008 10:27 pm

Hi Tessie

How are things with you and your husband this week? Did you see the oncologist? Have you found out any more about treatment etc?

Hope you are coping with this awful situation that so many of us are faced with.

Thinking of you.

Best wishes
Ellie
xx

kay1961
Posts: 7
Joined: Thu Jan 15, 2009 8:41 pm

Re: New diagnosis.

Postby kay1961 » Fri Jan 16, 2009 4:13 am

My husband has been diagnosed yesterday with PC, and I feel totally numb. He was unwell at the beginning of Dec 08, and our GP sent him for an ultrasound scan, as he was quite jaundiced and had some pain in his tummy. Had the ultrasound on 15th Dec, and they said he had a blockage in his bile duct, which they thought was a gall stone. He was told to have a MRI scan on 9th Jan 09. Unfortunately he was unwell over the new year, so I took him to A & E on 4th Jan 09, he was kept in and had a stent put in his bile duct on the 6th Jan, doctor said that there was a narrowing of his bile duct, but no gall stone in it. The doctor wanted to know why the bile duct had narrowed, and so he had a CT scan on 8th Jan, he came home from Hosp that night, and has been not to bad since although still jaundiced. We went back to the consultant yesterday to discuss the scan results, and were completely shocked to discover that he has PC, the consultant explained that it is a significant size, and that it is in the lymph nodes, so radio therapy is not an option, and his case will be discussed by the team at XX hosp on Monday am, they will then ring us to tell us when he will be seen to start treatment of chemo, it will be next week sometime. I just needed to write this down, and wondered if anyone can tell me what will happen next. I feel so angry, sad, my emotions are all over the place, I don't want my husband to see me upset, and I know I must be strong for him, and our two sons. Hope to hear from someone soon.

Kay x

lorraine
Posts: 66
Joined: Sat Aug 16, 2008 9:35 am

Re: New diagnosis.

Postby lorraine » Fri Jan 16, 2009 7:31 am

Dear Kay
Iam so sorry to hear that your husband has p/c,lets hope they can get things moving asap for him.They may offer the whipple op (its a big op )
there are alot of people who can give you support on this site.
My dad had p/c at the age of 60yrs,so i know what your going through .
Stay strong and take each day as it comes.
Thinking of you
Lorraine

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: New diagnosis.

Postby Ellie » Fri Jan 16, 2009 1:25 pm

Dear Kay

I am so very sorry to read about your husband. I know exactly how you are feeling. I've been there myself. My husband was thought to have a stone in his bile duct, which turned out to be a tumour, and he had a Whipple operation to remove it. Some lymph nodes were involved too (2 out of the 30 removed). You can't believe the diagnosis, can you? One day your life is normal, then you are faced with this.

I would think that xx is a very good hospital and they will no doubt decide on what is best now for your husband. Some people can have the Whipple op, which removes the tumour and parts of the pancreas, bowel, small intestine etc. It's a big operation, but my husband has made a good recovery from it. Some people can't have the op, if the tumour is in the wrong place, so maybe they will look at treating him with chemotherapy. There isn't a straightforward answer any of us on here can give you - it depends on age, health, size of tumour etc. You will find this is the worst bit - just waiting to hear what happens next.

All I can say is, try to take one day at a time. You can find a lot of info on the internet (this site & Macmillan), but that can frighten you, if you don't know what the real diagnosis is (type of tumour, where it is ). I'm afraid pancreatic cancer doesnt get many positive write-up's, but.....you have to try and think positive and hope for the best. Someone has to beat the odds!

I really do feel for you. My husband had his op last July and he's still undergoing chemo, so we've come a long way. The time has flown by and things could have been a lot worse. It really does help to come on here and write down your feelings. You need to stay strong and positive, especially in front of your partner, but we all need to get our feelings out, so use this site for that. It helps to know others have been, or are going through the same as you.

I wish you all the very best and hope you will hear what the next step will be very soon.

Best wishes
Ellie
xx

kazzie
Posts: 40
Joined: Wed Nov 05, 2008 7:39 pm

Re: New diagnosis.

Postby kazzie » Mon Jan 19, 2009 7:26 pm

hello Kay
I'm also using this site like Lorraine ,Ellie and Denise,on other topics,which I suggest reading ,it really makes you feel that you are not so alone and we are all there for you.
My dad was diagnosed after alot of back and forth from two local hospitals,in september,he has now had 12 weeks chemo and his 1st scan and we have had some fairly good news as well as it could get with this disease,so keep on in there and be as positive as you can even though we are at a good time I still have my moments and something sets me off.I think I speak for most of us on this site and we think of all of us because we all know what its like.Thoughts with you and keep posting
Karen Xxx

kay1961
Posts: 7
Joined: Thu Jan 15, 2009 8:41 pm

Re: New diagnosis.

Postby kay1961 » Fri Jan 23, 2009 9:03 pm

Just wanted to let you all know that we went to see consultant at xx on Wedneday. He says that he will operate on my husband, although he has said that if any major blood vessels are attached to the tumour they will just sew him back up and start chemo. If he able to have the op, it means taking about half of the pancreas, bile duct, gallbladder, duodenum, and part of the small intestine. It is a big operation, but the Dr feels its my husband's best chance. We both came out of the meeting with some hope to hang onto too. My husband is now waiting for xx to ring to have his pre assessment, and then the op, the Dr said it will be in the next couple of weeks.

Thanks to everyone who has sent me messages, they have all been received greatly by me.

Kay x

lorraine
Posts: 66
Joined: Sat Aug 16, 2008 9:35 am

Re: New diagnosis.

Postby lorraine » Wed Jan 28, 2009 8:20 pm

Hi Kay
I hope your husband has the op and everything goes well for you both.
Try to stay positive,i know it can be hard sometimes.
Will be thinking of you both,keep us informed with what goes on, as believe me it does help to talk to other people who know what your going through.
Take care
Lorraine

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: New diagnosis.

Postby Ellie » Fri Jan 30, 2009 7:01 pm

Hi everyone

Just wondering how everyone is getting on. Not heard much from the newer members of the site - Kay, Tessie, Joyce, to name a few. Hope things are going ok and you are recovering slightly from the initial shock of the diagnosis etc. It takes time to come to terms with the awful situation, but hopefully things will be improving for you all.

Wondering how Gill is? How is your Dad doing now? My husband is still doing well. Just past the half-way point of his chemo. We had a few days away in Cornwall, staying with our daughter, who we don't see often, but he survived the 6 hour journey there and back, as well as some hectic sight-seeing while we were there! That was a good sign! At one time, he couldn't stand the 5-min journey to the doctors because of his Whipple's op.

Lorraine - I think it was your Dad's funeral today? If so, I hope it went as well as these things can be expected. Thinking of you.

Please, everyone, let's keep in touch and keep the support going. That's what we all joined the site for.

Best wishes to all

Ellie
xx

kay1961
Posts: 7
Joined: Thu Jan 15, 2009 8:41 pm

Re: New diagnosis.

Postby kay1961 » Wed Feb 04, 2009 3:55 pm

Hi Everyone,

Thought I would let you all know that My Husband will be having his op on 23rd Feb. He is doing ok, trying to eat as much as he can to build himself up. Obviously he is worried as I am, but we are very hopeful for a good outcome. So sorry to hear about the two recent bereavements (Lorraine's Dad, and Wendy) my thought's are with their families. Will let everyone know how my husband gets on, after the op.

Love

Kay x