Why the delays

friend2 · Regular Joined: 01 May 2007 Posts: 25

Hi to all of you. I am sorry that we are here in this forum, but thankful that it has so much support and knowledge.

I am here trying to get as informed as possible so I can help my sister and her husband get through this regardless of the out come.

My brother in-law was diagnosed with pc 3 weeks ago. He first went to hospital because of his gallbladder. He was checked and sent home. The pain got worse and he went back to hospital 2 days la
tter. He was admitted and some tests were done. He was going to have his gallbladder removed however they stumbled on a tumor in his pancreas. They took biopsies to see if the cancer had spread. Now I am not sure when the MRI was done but he was told it was ok. They said if it had not spread he would have surgery on May2.They put a stint in and he was sent home. His decline was rapid, the next day he was so weak, and in so much pain he returned to the local hospital.

They changed the surgery to the 4 and now they say the 11.

He gets morphine every 2 hours and he is still in a lot of pain. His bowels will not move. Yesterday they had to insert a rectal tube to try to release the gas. He has had several edemas ,6,but nothing seems to work.
He is jaundice and his feet and legs are swollen.

They were going to change the stint yesterday but postponed it until today. He and my sister will travel via ambulance to the larger hospital a 2-hour drive, for the procedure and then 2-hour drive back. Will changing the stint help with his bowels?

He still has not gotten the results of the biopsies.

Why do they keep changing the surgery and what is taking so long to get the results of the biopsies? Is it normal to take this long?

Any feed back would be appreaciated.

freeio · Posted: Thu May 03, 2007 9:54 am Post subject: Medical Standard Time

What your family is experiencing is what I call "Medical Standard Time." Things happen when they happen, not when you would wish them to be done. It is positively maddening to live through. Unfortunately, this is more normal than you might imagine.

It sounds like you are dealing with this through a smaller hospital. Since this may be the first point of contact, it makes sense up to some point. However, for something as major as pancreatic cancer, I would urge you to find and head for a major cancer center in your region. They have the facilities and staff to do things quickly which the smaller facilities often lack.

Let me give you an example: when I was initially diagnosed with the possibility of PC, my family doctor referred me to Kirklin Clinic (Birmingham, Alabama), which is the best cancer facility in my state. There they used an endoscope to perform the biopsies, and had results read and back to us before the anesthetic (Versed) wore off. They have pathologists who spend all day, every day, doing such evaluations. Similarly, the blood test results were back in less than an hour.

My first cancer surgery was a Whipple procedure (eight hours worth of abdominal surgery). It was done at UAB Hospital in Birmingham, by a surgeon who had done this very major surgery at least 40 times a year for the past decade. He and his team knew what to expect. Contrast this to the local surgeon who has done this a few times at most. Experience counts. You want the best team you can get, because this is a life and death matter.

I realize that this may be disruptive in some ways, but your brother-in-law has the best chance of survival and recovery in a better facility. Get a referral and go.
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

friend2 · Regular Joined: 01 May 2007 Posts: 25

Thanks for getting back to me. I am being strong for my family. Any info is great.

My brother in-law had the tests biopsies and stent done at the large hospital. They are doing palliative care in his home town hospital so his family can spend time with him as they have all come home to be with him. If and when the time comes for the operation it will be done in our major hospital.

freeio · Posted: Thu May 03, 2007 2:44 pm Post subject: About the dealys, then

My experience is that the communication between large hospitals and the outside world is slow and difficult. The big hospital typically has a computerized record system, and expects that anyone needing information has access to that system. The smaller clinic or hospital is on some other system, paper or computerized, and they cannot directly access the information from the big hospital. I have had cases where I asked for information to be sent to my own doctor, and it never got sent, because no one seemed willing to print out the diagnosis, report, or whatever, and put it in an envelope and mail it. They are overloaded, overwhelmed, and this "small" request is easily ignored.

The only way I have seen around this is to cultivate a good relationship with the nurses and administrative staff at the big hospital. Since I deal with the same oncology staff a lot, I can usually ask for something to be printed and either handed to me or mailed, and it will usually happen. I do have to ask the right person, one who has access to the information, and is authorized to give it to me. I am the patient, and so I qualify. Someone else, even family, will have a much more difficult time getting that information.
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

friend2 · Regular Joined: 01 May 2007 Posts: 25

Freeio

I just heard that they are keeping my brother in-law at the main hospital instead of sending him back to the local hospital as was the plan. Being here as support, I will have to wait until my sister is able to phone me.

friend2 · Regular Joined: 01 May 2007 Posts: 25

Can anyone tell be the survival rate for pancreatic cancer?

Jim5523 · New User Joined: 25 Aug 2006 Posts: 6

It is my understanding that only 15% - 20% qualify for the whipple. It is great that in your case a wipple will be completed. I hear the normal motality rate for a whipple is 18 months. I had a whipple and I am feeling relatively good. 3% or 4% make it past 5 years. I know these are bad percentages, but some of us are doing relatively well.

friend2 · Regular Joined: 01 May 2007 Posts: 25

I am happy that you are doing well. Thanks for giving me some hope. We are not sure if he will have the operation. It depends on if the cancer has spread. We are waiting for the results of the biopsies.

friend2 · Regular Joined: 01 May 2007 Posts: 25

I am so happy. We just found out that the cancer has not spread and that my brother in-law will have surgery in 2 days. My god we've been blessed.

So what questions should my sister be asking the Doctor regarding the recovery.

brainman · Posted: Wed May 09, 2007 4:15 pm Post subject: Re: Why the delays

Good news indeed friend2!!!! I wish him the best and will be thinking of all of you on the 11th. Keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

friend2 · Regular Joined: 01 May 2007 Posts: 25

My brother in-law's operation was a go ahead this morning. They could not remove the tumour. To say my sister is devastated is an understatement. They did some bypasses to help with the pain. They will be putting a feeding tube in so he can get some nutrition. He has stated that he will not have chemo or radiation.

Thanks to this forum I was able to get the information I needed to prepare myself and be strong for my sister.

brainman · Posted: Fri May 11, 2007 12:54 pm Post subject: Re: Why the delays

friend2, You have been on a roller coaster ride to put it mildly!! I wish I could tell you that the ride is over. There will be up days and down days in your brother-in-law's future. I am sorry that they could not remove the tumor.

The forum is here for you when ever you need.

Best wishes,
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

friend2 · Regular Joined: 01 May 2007 Posts: 25

We were told that my brother in-law has 3 to 4 months. If everything goes well he will be able to go home in 7 to 10 days. With the bypasses that we done he should have a few months of good life. The doctor said that the last 3 weeks will be harder on the family than him. His meds will be increased and he will sleep much of the time.

I joined this forum trying to get information regarding everything. I now know,kinda what to except. Even though my questions were answered, I will continue with updates to help the next individual that comes looking for information.

brainman · Posted: Sun May 13, 2007 9:08 am Post subject: Re: Why the delays

friend2, thank you for keeping us up-to-date on your brother-in-law's struggle. Make the most out of the time he has left. If he wants to go somewhere special and it is at all possible, take him there. If he wants to do something and he is physically able, help him to do it. Ask him what he wants to do. Of course, anticipate his grief. He will need to express his anger and frustration and sadness to someone. Make yourself available for that too.

Even though your main questions have been answered, I have found that the more I know the better I am at asking questions on that subject. Other questions will arise in time.

I hold you and your family in my heart today and always.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

friend2 · Regular Joined: 01 May 2007 Posts: 25

Sad to say but I am back at my sisters. I live 1100k from her and after the operation I went home to my husband. My sister and her husband had a month of not so bad but he is back in hospital. The room is very lovely and the staff is great. He turned 57 yesterday. The had a good day.

It will only be a matter of days now. As much as my sister loves him she can not wish for him to be with us because of the pain.

My sister tells everyone that I am her rock and I am afraid that I will let her down by not being as strong as her. I don't know where she gets her strength. She is one of the strongest people I know.

	Cancer Forums Forum Index -> Pancreatic Cancer Forum	All times are GMT - 5 Hours Goto page 1, 2 Next
Page 1 of 2

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others