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

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

Re: New diagnosis.

Postby lottied » Mon Feb 16, 2009 10:42 pm

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

Re: New diagnosis.

Postby kay1961 » Thu Feb 26, 2009 1:37 am

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
Posts: 47
Joined: Mon Jul 07, 2008 2:22 pm

Re: New diagnosis.

Postby chinup » Thu Feb 26, 2009 5:14 pm

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
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: New diagnosis.

Postby Nardobd » Thu Feb 26, 2009 7:09 pm

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

Re: New diagnosis.

Postby Ellie » Thu Feb 26, 2009 8:00 pm

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

Re: New diagnosis.

Postby kay1961 » Thu Feb 26, 2009 10:42 pm

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

Re: New diagnosis.

Postby kay1961 » Thu Mar 12, 2009 2:33 am

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

Re: New diagnosis.

Postby Ellie » Thu Mar 12, 2009 9:21 pm

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
Last edited by Ellie on Fri Mar 13, 2009 8:33 pm, edited 1 time in total.

chinup
Posts: 47
Joined: Mon Jul 07, 2008 2:22 pm

Re: New diagnosis.

Postby chinup » Fri Mar 13, 2009 8:42 am

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