New diagnosis.

[Tessie]

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]

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]

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]

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]

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

Edited November 20, 2008 by Tessie

[Tessie]

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

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

[Ellie]

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]

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]

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]

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]

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]

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]

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]

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]

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

[lottied]

Hi just want to thank everyone for their kind thoughts and wishes. Have been trying to follow everyones progress and up to now we seem to have a few positive stories. This is really good news and I hope things get better and better. I am thinking of everyone and still come on this site to check up how everyone is doing and can't wait for someone to beat this bugger!

Be strong, be positive and fight every day that's all you can do. Love to you all and thanks for letting me share with you all. Denise

[kay1961]

Am writing this after visiting my husband who had his whipple's operation on Monday 23rd Feb, he was really frightened before he had the op, but was optomistic of a good result. He went down for op at 9am, and I received a phone call from the consultant at 11.30am ( this was not a good sign, as we had been told that the op would last 6 - 8 hrs) he told me that they could not remove the tumour on the pancreas, and they had found some tumours on his liver, they had removed his gallbladder and part of bile duct, and rerouted it, so he has had a part whipple op, but not done the thing that we had hoped they would. I was absolutely distraught, it felt like my whole world was collapsing around me. I went to the Hosp, and my husband had just come back from recovery room, he did not know what had happened in the operation, it was very hard for me to explain to him, and still sound a bit positive. He was upset and a bit angry that he had gone through this major op, and not got the result he had expected. He was also shocked that it is now in his liver.

Today (Wed) the consultant came to talk to us, he explained that he was shocked that it has spread to his liver, and that the tumours there are very small, they took biopsies, and will know what type of cancer it is by Friday hopefully. He said that the tumour on the Pancreas is medium to advanced in size (does anyone know what stage No this is) and he could not remove it. Also the lymph nodes around it were very enlarged with cancer. He has said that chemotherapy will be offered, and hopefully this will shrink the liver tumours, as they are very small. I don't know what will happen about the Pancreas cancer, he didn't seem to explain this, or maybe I missed that bit. I tried to listen properly, but I know I never did, as I felt quite numb.

Anyway, now all I want is for John to recover from this operation, and be able to come home. We will then wait for the chemo consultant to contact us. Does anyone know if the specialist nurses will contact us, or do we have to contact them ourselves. Has anyone else had an experience like this, and what is the next step?

Thanks for letting me write this down, it does really help to do this.

Kay x x

[chinup]

Hello Kay, very sorry to hear about John's experience this week, I have certainly read of this happening before. My mum wasn't offered an operation as although her tumour was about the same size as your husbands, it was near a major blood vessel. She also had lymph involvement and a couple of spots on the liver and ovary. She had chemo for 6 months which held the cancer at bay. Unfortunately it is back with a vengence now, but to honest we are now wondering if there was more spread in her body that they weren't really telling us about as it is only two months that they claimed that the scans were identical to the ones she had a year ago. At this stage my mum was told that her cancer was advanced pancreatic adenocarcinoma. I think the advanced bit referred to the spread in her lymphs, as I said there may have been more but they didn't tell us. They were never sure what the spots on the liver, etc were and didn't seem too bothered about it. About two weeks ago she had another scan and they told her that the cancer is now very advanced throughout her pelvis area and she has just had to have surgery for a blocked bowel.

I would think that once your husband gets himself over the operation, he will get a clinic appointment and will see and oncologist who will go through the chemo options with you both, the common route seems to be something called gemcitabine and cistaplin (sorry I have probably spelled those wrongly). Most people tollerate it well, and in many cases it seems to stabilise the cancer. I am no expert but I would say that you should both remain as optimistic as you possibly can and also encourage John to get himself as fit and well as he can and to really watch his diet and keep his digestion moving, eat as well as he can, as I have heard many times that this can and often goes wrong with pancreatic cancer and can cause more trouble than the tumour in the pancreas!

If you don't hear from your hospital's oncology department in the next few weeks then ask your GP to chase things up for you.

All the very best wishes to you, keep strong and ask for all the help and advice and support you can get, get as informed as you can.

[Nardobd]

Hi Kay, and I'm very sorry to hear your news. We are just a little ahead of you in one sense - my husband, Ted, wasn't offered an op and has just (yesterday) started Chemo for his locally advanced pancreatic cancer. He is on Gemcitabine as the consultant indicated that another drug (probably the one mentioned by Chinup) could be added, but increased the side-effects with only a marginal benefit.

I'd encourage you and John to garner as much support as you can. Your specialist nurse will probably be informed but you might want to speak to him/her too. S/he will have more time to explain what will happen next. If John's experience mirrors Ted's you will get an appointment to meet the Chemo team and they will go through everything with you again just prior to John starting treatment. From what we were told, Chemo isn't 'intelligent' and will work on all cells, including the pancreatic cancer.

As mentioned by Chinup, don't be afraid to ask for explanations several times - I made Ted's chemo nurse explain one aspect of the chemo three times! I felt really stupid because I just couldn't take in all the information but it's better to do that than sit around afterwards trying to figure out what was meant. Push for appointments too - I make sure to ask how quickly the next step in Ted's treatment is going to take place and if it hasn't taken place within the timescale I'm given, I ring and ask why not.

Very best wishes

Nicki

[Ellie]

Dear Kay

So very sorry to read of your situation. How awful, thinking your husband was having the whipples, to find things were worse than you expected. It's such a shock to find out your partner has cancer, never mind then discovering it's spread.

All I can do is offer you my thoughts and best wishes and say, try to take it one day at a time . Look after YOU too, as you will need to be strong. Sincerely wishing things get easier for you.

Also, to Nikki. Thinking of you and sending my support.

Love

Ellie

x

[kay1961]

Just want to say thankyou to all who have sent messages to me. I am really appreciative of all the information and sincere thoughts of you all.

I will keep in touch, and let you all know what happens in the next few weeks.

Kay x

[kay1961]

Dear All,

Well we go to see the oncologist today and hopefully he will say that my husband can begin to have chemo to help him fight this awful disease. My husband has also got to have a "Nuclear Scan" the week after next, and we have to go to the hospital three days in a row for him to have it. Has any one else had to do this, and what's it for?

Thanks for all of your support at this difficult time.

Regards,

Kay x

[Ellie]

Hi Kay

By now, you will have seen the specialist and I hope you had some positive news on your husband's treatment.

I hope things have been explained to you a bit more now. What I found the worst thing was not knowing. The wondering, the waiting. Once you know what's happening, I think you can get on and do what needs to be done.

Stay strong and positive, Kay. Hope everything works out.

Love

Ellie

xx

Edited March 13, 2009 by Ellie

[chinup]

dear Kay

a nuclear scan is where they give the patient a small amount of radioactive medicine which on it's way through the body is somehow attracted to any cancer deposits and then when the body is scanned it shows up, thus highlighting any areas of cancer which may be missed in a normal CT scan. Because radioactive material breaks down in the body the images change over a period of days, I think this is something to do with why it takes several days. This is normal though, I went through this with someone else I knew with cancer.

It's good that your husband is having this scan though as you will know exactly what you are dealing with and where it is. Hopefully you will get a managable result, best of luck xxx