How quickly do doctors begin treatment?

sarebear · New User Joined: 01 Apr 2009 Posts: 6

My mom just found out she seems to have pancreatic cancer on Monday and that a biopsy would be performed quickly to confirm it. We thought it was supposed to happen the very next day but now suddenly it has been scheduled for next week! Wouldn't they want to get things moving along quicker than that? She is going to have the stent done on Friday so that has already been scheduled. I just wondered about the biopsy and why it was scheduled for over a week later.

My mom lost a lot of weight recently although she was watching her diet and trying to lose a few pounds so this was not alarming. She is not a big woman, very fit, just trying to lose those stubborn extra pounds us woman struggle with. Well, it came off quickly and easily. Now we know why. She went in for her annual check up a couple of weeks ago and her glucose levels were crazy. She was almost immediately put on insulin and has been trying to control it somewhat successfully. An Ultrasound indicated there were spots/masses on her liver. She was referred to a gastroenterologist who then began his own testing before he received her original results. Once he received everything, he immediately called her in for an MRI the very next day (last Friday). Monday this week she met with him along with others from the family to hear the news that it was probably PC. It has metastasized to her liver and galbladder and has compromised her intestines. I am fuzzy on some of the details as I am not close by and getting the details over the phone. It is so hard to absorb it all. And of course I am in complete shock.

I just thought the biopsy and oncologist appointment would be scheduled right away. What are your experiences with this? Like I said, Friday is the stent procedure and that was scheduled the very day we found out.

I have been on this site ever since I found out and the posts and members are very helpful. I am sure I will be posting more in the future. Thanks for your help.

TruthSeeker · Regular Joined: 01 Apr 2009 Posts: 12 Location: Canada

Hi Sarebear,

Very sorry to hear about your Mom. I just went through this with my own mother, and see the similarities. My mother too, was watching her weight and we thought the loss at first was attributed to this, but then of course, the other symptoms followed in short order.

In my mother's experience, the timeline for when tests were performed and results were available could be rather hard to pin down and there was at times a general inconsistency. When I was with her in hospital, it was almost a daily thing to get one answer from my mother's attending, another from the resident and still another from visiting residents with still another take. I learned to typically approach the 'attending' doctor about when tests would be performed and results made available, as he was the doctor who had the most say-so and oversaw all residents/specialists assigned to my mother's case.

If the radiology department is busy with other tests then there can be delays, and for biopsies, the process of determination is not a swift one. There are a few steps involved in processing the results of this type of test. Still, from my own experience, we were at first told that the biopsy would be done in 2-3 days, but then when I asked if a rush could be put on as we were interested in getting a second opinion and would need these results, the test then was suddenly scheduled to happen? Coincidence, or as the result of asking. I don't know. Depending on your Mom's condition, stability-wise, they may be wanting to build her up a bit, and space out the tests so as not to overwhelm her and to give her a chance to get settled in if she is a new patient. Not a bad idea.

In hindsight of my experience with my mother, I would definitely do things differently, and maybe not have insisted on having a biopsy done at all as her outcome was going to be the same regardless. Depending on where they do it, in my mother's case it was her liver, this can cause some bleeding and did in her case which then caused other problems.

I hope this helps some and all this best to you and your Mom as you go through this.
_________________
MEC - 1926-2009 - Your rest is well-deserved ...

Adagio7780

Hi sarebear. I am also sorry to hear of your mother's illness. The wait for the biopsy is not seem too long - probably just scheduling realities. I think my journey from first symptoms to treatment was pretty quick. Here it is:

11/23/08: See family dr due to pelvic discomfort with bathroom visits. Prostate exam negative
12/12/08: Colonoscopy, results negative
12/23/08: Results from 12/19 CT Scan show pancreatic tumor
12/29/08: EUS/FNA confirms adenocarcinoma
12/30/08: First visit with surgeon
01/07/09: Distal pancreatectomy cancelled after laparoscopy confirms metastasis to peritoneal and diaphragm
01/08-01/24/09: Investigate treatment options and clinical trials
02/03/09: First meeting with OC at Duke University Med Cntr
02/10/09: First treatment (gemcitibine + study drug)

Hope this helps, and I hope for the very best for your mom and all your family.
_________________
Man tracht, Got lacht (Man plans, God laughs)

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

I would say it is normal for drs. to take a week or two between "steps".

sarebear · New User Joined: 01 Apr 2009 Posts: 6

Thank you all for your quick responses. The unknown as far as the process is frustrating for me at the start of this. However, I do understand that too many appointments, etc. would probably be overwhelming. I guess I just want everyone to stop what they are doing and concentrate on my mom!! I just found out that she will be sedated for the actual biopsy. I am happy to hear this because I have heard the procedure can be quite painful. She is relieved too. The biopsy will probably be taken from her liver. She is under the impression that the results will be almost instantaneous. Is this possible? She is very pleased with her doctors so far. She is being seen at the University of Tampa. Anyone have experiences there to share?

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

It takes time for the biopsy. I think it gets sent to the lab. Then the Doctor will want an appointment to discuss the results and what to do next. they it takes time setting up the next options.

I personally understand wanting to know right away.

But I learned that the time between treatment options or biopsy or next steps is good. It gives everyone time to process what is happening and gives space for make clear decisions.

It's not a fun process though.

Adagio7780

I was sedated for my EUS/FNA (Endoscopic ultrasound/fine needle aspiration), and my wife was there with the results when I woke up, then the doctor visited a short while later. So in my case, the biopsy was done right away. Ask your doctor ANYTHING that's on your mind.
_________________
Man tracht, Got lacht (Man plans, God laughs)

sarebear · New User Joined: 01 Apr 2009 Posts: 6

We found out today that the stent could not be done as they had originally hoped. I am not clear on the exact reason but I guess it was apparent the moment they went in to attempt it. Next week she will get the "bile bag" placed. This was obviously worst case scenario but there was talk of the bag being used for 6 weeks and re-evaluating whether they could try the stent again.

Funny thing is my mom feels perfectly fine. She looks fine - not jaundiced- although I did feel last time I saw her a couple of weeks ago that her coloring was "off." This is all a result of her annual check up. We're praying that she will continue to feel well. It just makes me wonder what symptoms would have caused her to go to the doctor in the future.

Addagio - I have read some of your posts and understand you are having good results with the study drug. How did you get involved with this process? I apologize if you have already covered this.

TruthSeeker · Regular Joined: 01 Apr 2009 Posts: 12 Location: Canada

Very good to hear Sarebear that your Mom is doing well and is feeling fine.
_________________
MEC - 1926-2009 - Your rest is well-deserved ...

starseed · Experienced user Joined: 06 Sep 2006 Posts: 51

I'm also really glad your mom feel good.

Adagio7780

sarebear, the OC should be able to advise you on clinical trials that may be appropriate. You can also Google 'clinical trials pancreatic cancer' and you will get to a list of over 200 ongoing phase I, II, and III trials. Many of them list email and phone number for study nurses. Good luck as always.
_________________
Man tracht, Got lacht (Man plans, God laughs)

sarebear · New User Joined: 01 Apr 2009 Posts: 6

Thank you all for your replies!! Yesterday my mother went in for the biliary drain with external bag and apparently everything went very smoothly. They have not actually given her a definitive diagnosis other than the dr. is 99.99% sure it is pancreatic cancer. The biopsy does show it to be cancer and now it is going through further testing to determine the origin. There was mention that it is probably pancreas, but may be bile duct or duodenum.

I am confused about the biliary drain. There was talk of having it internalized next week? Does this mean they will try the stent again? Anyone have experience with this?

frustrated daughter · New User Joined: 20 Apr 2009 Posts: 1

I read a lot of the forum a couple of days ago and was searching for a miracle treatment out there. I didn't find one other than to continue to put all of this is Gods hands and continue to cherish every moment I can spend with my dad.
What is so frustrating is that he has always been healthy. He only had two lower back surgeries for herniated disc. He then had a total knee replacement in September of 2008. This was the start of his cancer life. While he was going through therapy he asked why he is losing his muscle. He was told it was due to not excercising?? He didn't lose muscle during his back surgery and has always been a workaholic, always doing something. He just turned 68 in January and still working 40-80 hour weeks until now. He started to have stomach pains in November. All kinds of test were done and they decided to remove his gall bladder. Pain continued and he had three or four CAT scans until they found the mass and then learned it was in his liver, kidneys and lungs as well. This did not get detected until February!!
We all know now that the one chemo he is receiving three weeks, once a week, and then has one week off gets rid of the pain. He also takes Tarceva. His blood sugar was way out of whack...I finally took him to the emergency room to get attention to his sugar being over 500 and 600. Now they finally put him on Lantis and a quick release (Humalog-??) to take with his meals. Now it is down between 175 (the lowest so far) and 300. But now he feels a lot better (more energy) and can sleep through the night. Please lift him and his new wife of 7 months and the family up in your prayers! Thank you for all of the education and support! God bless!
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My dad has been a workaholic...just turned 68 and always healthy. He had a knee replacement in September 2008 and has been down hill ever since. But he is fighting for his life and wants to have a miracle and beat the high odds!! Smile

PaulaJM

Hey Sarebear,
Just wanted to let you know that my mom and I were gonna have to go through the typical wait and see game, but I could not stand it. So I started to do some research and found Cancer Treatment Centers Of America. THEY GOT ON THE BALL!!! They paid for my mom and me both to fly out to Chicago (we live in Kentucky) they picked us up in a Limo at O'hare Airport and took us to our hotel, which they paid for all but 40 dollars a night. She saw drs. that very next day, they done test the next day, and we had test results the day after that. THEY ARE WONDERFUL!!! My mom has Carcinoma of unknown primary with mets to her liver and lymphnodes, but she is doing wonderful. They told her what to eat that would be good for her (she has her own nutritionist) and they also put her on seven or eight different vitamins a day, and she has not had diahrrea or vomiting not even once, and has gained weight while on Chemo, which we started the seventh day we were down there by the way. She goes back every three weeks for Chemo, but they almost pay for everything, so it makes it really easy to go there. I just watched my Grandmother, who had lung cancer, be very sick from chemo and die in January. I did not want my mother to have to go through that, and she hasn't. We met a lady there while my mom was getting her treatment one day and she had pancreatic cancer and had been living with it for two years and doing fabulous. While I know that God is my moms ultimate healer, he also let me find Cancer Treatment Centers Of America. Please let me know if you would like to know more about them, I will give you all the information you need. Your mom and your family are in my thoughts and prayers.

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