Looking for straight answers

Cassiel240 · Regular Joined: 13 Dec 2006 Posts: 12

My mother was diagnosed with pancreatic cancer last Wednesday, and the ct scan shows that it has metastasized to the liver. It apparently involves crucial blood vessels, so is currently inoperable. I was not there for her doctor's appointment, so my information is second hand. But she said the doctor suggested that chemo could shrink the tumor enough to make it operable. From the sources I have read, however, it seems that these criteria comprise stage IV cancer, and as I understand it a Whipple is usually not done in that case. Are there possibilities for treatment in her case, besides chemo or palliative measures? What usually happens when pancreatic cancer spreads to the liver? I know it isn't good. I don't want to be surprised. I do not want to destroy her hope of recovery, but I want a realistic outlook for myself.
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There's a crack in everything - that's how the light gets in. - Leonard Cohen

missumom · Experienced user Joined: 05 Jan 2006 Posts: 65

I mush have re-written this so many times. You're looking for straight answers. Firstly, just bear in mind, that every cancer patient is different. There are living survivors of pancreatic cancer. I can only share with you what happened to my mom and just because it happened to my mom doesn't mean, it'll happen to yours.

My mom was diagnosed with pancreatic, gallbladder and liver cancer in September 2005. She passed away in October 2005. I would suggest that you try to be there when the doctor is present so that you can get the information straight from the doctor. Write down any questions/suggestions that you may have. My husband and I researched the internet fanatically to the point where we felt like MD's, even the doctors were impressed and annoyed (lol).

To some people, chemo has helped shrink the cancer. In my mom's case, I feel as if the chemo just made her worse. I think it brought on her death quicker. Chemo brought on more complications and worsened her present ones. I think that the whipple procedure is the best solution for your mom. You are racing with time because pancreatic cancer is very aggressive in terms of the speed it metasticizes. My mom was not a candidate for the whipple procedure. Several months after my mom passed away, I had read that even if a patient is rejected for a whipple here, in China (Shanghai), there is a hospital there that specializes in this type of operation, but it is very costly.

What happens when the cancer spreads to the liver? If the bile duct becomes clogged, your mother will eventually become jaundice (yellowing of the skin/eyes). This, of course, puts a strain on the liver and its functions are affected. My mom would have difficulty understanding or remembering things.

Is your mom on morphine? This also has many complications. It slowers down the heart rate, makes them sleep more and very groggy, but they need it for the pain.

Be there for your mom and treat each day as if it were her last. I truly hope that your mom would be one of the lucky ones who survive this. Please keep us posted as to her condition and I hope I have somewhat been informative.

Take care........

reenie · Posted: Thu Dec 14, 2006 6:15 pm Post subject: Re: Looking for straight answers

So sorry you are dealing with this awful disease. My husband's dx was stage lV and we were told there was NO surgical option. Chemo was for palliation only. (His was mesentery, liver, then later, lung). Our understanding at the time was automatically stage lV due to liver involvement. Sam was certainly sicker with the chemo than without it and during his treatments with gemcitabine and Tarceva (7 weeks of 1x week gemzar and daily Tarceva) the masses in the mesentery matted and grew and the one in the liver grew. While he weakened, we never saw signs of jaundice. His next chemo was oxcilplatin and xeloda- that made him so much sicker we had to stop. When we asked about what we cold expect from the chemo the oncologist said, "some people get another month". All this to say surgery was not discussed locally nor at UVA where we went for a second opinion. So does that mean they have higher hopes in your Mom's case? Maybe. I certainly hope so. Still, I would want to be there to hear it from the onc.
We all know that every one's case is different; still, there are striking similarities. You may want to call PanCan- they can answer a lot of your questions and provide detailed lists of clinical trials. Because there are so few cases a year ( and sadly an equal # of deaths),I would think you would want to get her into a medical center where they specialize in this cancer. If there are treatments that can be given locally, all the better, but at least give the experts a shot. I am sorry not to have more encouraging info.
About her Dr. visits, My husband's oncologist loved it when we brought three copies of our questions with us to appointments- that way we were all on the same page and he couldn't skip anything and we wouldn't forget to ask anything. Some folks bring a tape recorder- a very good idea -nothing gets lost in translation. Sometimes what the patient hears is very different than what the doctor says. ("This could WORK" is very different than "This COULD work").
Every once in a while I read of a survivor- why they survived is a mystery to me but I hope your Mom turns out to be one of the lucky ones.

Cassiel240 · Regular Joined: 13 Dec 2006 Posts: 12

Thanks for the replies and information. I know everyone is different, but the only way I can seem to make sense of this is by looking at others' experiences.
She already has jaundice and will go in for a stent next week...which, from my reading, suggests that they don't believe surgery will be an option. Am I correct in that feeling or did I invent that? What does a blockage of the bile duct, accompanied by jaundice, indicate? She is not on morphine, though we've been trying to get her to agree to some kind of painkillers - just to have it on hand if she needs it, even if she doesn't take it. She seems to be in pain and very tired all the time, but my parents are both very hopeful. I try to be, too, but I just have a feeling of doom at times. I wish I could somehow know whether it was justified or not.
_________________
There's a crack in everything - that's how the light gets in. - Leonard Cohen

missumom · Experienced user Joined: 05 Jan 2006 Posts: 65

I just don't want you to get discouraged by all that you have read. I don't want you to give up hope. Although this cancer has a low survival rate, it doesn't mean there is a zero chance. There are a few people out there who are living pancreatic cancer survivors. Having said that...

Your mom is seriously ill. You have every reason to feel the way you are feeling. The doctors will have a pretty good idea of your mom's future oulook in the results of the CT scans. They are able to see the location and size of the mass. Ask several doctors regarding their opinions towards chemo. It's a tough road ahead for your mom and your family. It's a lot of ups and downs. Keep up your strength, as well as your hope.

I got this information in the internet. I hope it helps you out.

"Sometimes it is necessary to insert a plastic tube into the bile duct to keep a good flow of bile and relieve the symptoms of jaundice in patients with pancreatic cancer. These tubes are called biliary stents - after Dr Stent who first used these small tubes.

The stent forces the bile duct to stay open and allows the bile to start flowing again from the liver to the duodenum. A plastic stent can be referred to as a temporary stent for two reasons. One is that it can be replaced when it becomes blocked. The second is that it is sometimes a temporary measure to relieve jaundice prior to surgery or assessment for surgery. If Whipple's surgery is performed the stent will be removed along with the part of the pancreas and bile duct affected by the cancer and the remaining part of the bile duct will be connected directly to the small bowel without passing through any part of the pancreas.

A plastic stent should normally be used if it is felt that stenting is necessary to relieve symptoms of jaundice but it is intended, or there is a possibility, that surgery will be performed. In fact some centres may not routinely insert stents to relieve jaundice before surgery. This is to avoid delays and the slight risk of complications from the stent insertion procedure such as infection and inflammation of the surrounding tissue. The decision will probably depend on whether the patient's symptoms are tolerable and not too severe. A patient must also be fit enough to undergo an ERCP for a stent to be used to relieve jaundice.

Plastic stents generally only last about 3-4 months before they get blocked (due to build-up of deposited bilirubin/bile sludge) and need to be replaced. If there is a delay in getting back to the hospital for a replacement there is risk of infection (due to build up of bacteria in the stent). A second plastic stent may occlude faster than the first time.

It is important to realise that stents (both plastic and metal) can get blocked so that symptoms of fat malabsorption and jaundice may recur, there may be pain or more importantly symptoms of infection.

If there is a blockage of the bile duct the stools will also become pale due to poor digestion of fat and because it is bile that gives the dark colour to stools. The bile that has been produced in the liver cannot get to the bowel and it goes into the blood and through the kidneys into the urine which becomes dark in colour. Also as it is in the blood the eyes and skin become yellow - yellow jaundice. There is sometimes itching of the skin due to the jaundice.

As the tumours become more advanced, they can block both the biliary system (between the liver and the intestine) and the duodenum (first part of the small intestine) resulting in recurrent jaundice or a blocked intestine with vomiting. The preventative surgery involves joining the bile duct (above the blockage) to the small intestine (an hepaticojejunostomy) and the stomach to the small intestine (a gastroenterostomy) thereby giving the liver and stomach an alternative method of emptying even if the tumour expands."

Cassiel240 · Regular Joined: 13 Dec 2006 Posts: 12

Wow, that was really helpful information. I appreciate that so much. It's such a struggle to maintain realism without leaning either to over-pessimism or over-optimism. I try to be as even as possible in order to keep a clear head, but where your family is concerned it gets very difficult. Thanks for the information as well as the encouragement. Blessings.
_________________
There's a crack in everything - that's how the light gets in. - Leonard Cohen

den32835 · New User Joined: 24 Dec 2006 Posts: 1

Hello I am a new user of this forum and hope I am posting correct! I have been reading all the stories on this forum and hope someone will respond to mine. today is 12/24/06 and my dad was dx with stage 4 ca 15 days ago. He is not a candidate for surgery and the oncologist stated that he could receive a few radiation treatments for the mass at the lower lumbar area. This would aleviate the pain he is having. they only suggested palliative care. Because he is not a candidate for surgery we do not know where the CA started but they say it has spread to his bones. Over about 3 weeks my dad went from walking independantly to being practically bed ridden!! Now we know it is because of the mass on the base of his lumber. They beleive the primary cancer was in the pancreas and they also found a biliary tract obstruction. My mom and dad have been married for 53 years and have never been seperated. She is not taking this well at all we as a family are so worried about her we fear for her!!
We have been given two options for my dad, hospice home care or a nursing home!!!! We are devastated because even with nurses coming in we know my mom can not handle it she is not healthy herself. I have offered to bring them to live with me but my mom says no and my dad will not come either. I worked two jobs and had to quit one to go down where they live I feel as if I need to be there all the time I am so scared for myself as well as my entire family. They have not given us a time frame for my dad however the dr. said with pancreatic cancer, depending on when it was caught usually is 6months-1year. Can anyone relate to what I am going through and offer some advice please
Thank you
DL
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DL

philip · Regular Joined: 27 Dec 2006 Posts: 11

I am very sorry. Hospice is the best choice generally, but some one will need to be there to help your father.

Everyone is different, but the times you have been told seem optimistic.

This will be hard on everyone. Be strong for you father. He will need your help and love.

Big Sister · Experienced user Joined: 02 Nov 2006 Posts: 67

Den -- Please read the other recent postings for answers to your questions and concerns. Most of us who have been writing and reading have three things in common and the info is all here:

1. Either we have had our loved one JUST diagnosed and don't know what this means, or

2. We understand that our loved one has Stage IV and don't know how to help or what to do, or

3. We are looking everywhere for answers, solutions, time...or

4. We are watching helplessly as our loved one continues to slip away.

This forum gave me information I naver cared to hear but it was my only link with reality while others were talking about God and miracles.

Read our stories carefully; it's all here.

Good luck to you as you deal with this. And be strong -- you didn't ask for this, you never wanted this, but you will need every ounce of strength to handle it.

Best, Big Sister

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