The situation with my mother has me scared to death

MarysSon

Hi all. In October 2007 my mother developed severe itching and what she thought was a nasty case of hives. She's somewhat allergic and since we live in Central Texas she has a bad time with the cedar. Anyway, she went to the dermotologist and he gave her steriods for her hives. I thought that was weird that he would just prescribe steriods to a 71 year old woman without a blood test to check liver function but my mother thought I was the crazy one. So a few weeks after that with increased itching, she turned the color of tweety bird. Bright yellow. She went into hospital and was eventually diagnosed with pancreatic cancer the day before Thanksgiving. We took her to the UT Southwestern Medical Center in Dallas. She was operated on by Dr. Roderick Swartz. He was able to remove the tumor cleanly and a good margin around it. He also took part of the intestine (I can spell it duodenum?), the gall bladder, all the duct work etc. He was able to leave the intestine. The pathology came back and they got 24 lymph nodes with it. 3 of which showed cancer. However, he said he felt comfortable with saying he had gotten it all. He did recommend chemo and radiation as a safeguard against anything microscopic that they may have missed. My mother was in surgery for 9 hours, in ICU for 3 days and then the hospital for 2 additional days. All the doctors said it was a miracle how fast she healed. She is incredibly healthy though, takes no medication isn't too overweight and runs around all day, everyday. She's got 6 kids and 16 grandkids! Anyway, the doctors said it was a very lucky thing to catch it so early. It was a small tumor - less than 2.5cm that grew right next to the bile duct and closed it off causing the jaundice. While in Dallas at this big time cancer research center and under the care of Dr. Swartz - who is an expert on pancreatic cancer - we all felt really good about her chance for her long term survival. Dr. Swartz does 60+ of these operations a year and follows up on his patients. So he has a wealth of experience to pull info from. He said based on the presentation of the cancer in my mother, his experience and her pathology, her success in surgery and post operatively he felt like she has more of a chance of dying from another cause than this cancer. He did say "she has the disease of cancer and need to be diligent." But here is where I start to worry. We came home for her to go through her chemo and radiation and met with local oncologists. She told my mother survival rates WITH chemo and radition are typically 1-2 years max. This of course scared and depressed my mother because it's so different than what she had heard before. It's really amazing the change in her in less than a week. (she had her surgery on December 14 it's now January 27). I know it's rare to survive this cancer. But I know people do. Is there someplace online that I can go to get info for my mother to show these local yahoo's are wrong? I've suggested that she take the chemo and radiation from them and don't listen to them about survival rate. Honestly the locals deal with maybe 1-2 people a year with pancreatic cancer. Going someplace else for the chemo and radiation isn't an option. Also, she's frightened about the Gemcitabine and Fluorouracil she will be receiving. She's sure she's going to lose her hair and be vomiting, a mouth full of sores and having diarrea non-stop. Yet another gift from the local oncologists drama. Anyone out there been through what my mother will be going through that can share info I can pass onto her? I would really appreciate it. It would make all the difference in the world to her to know the reality of the situation instead of a couple of really dramatized reports from doctors. She knows it's not going to be a cake walk. But she's done remarkably well so far and there's no reason to think she won't continue to do well. Ideas? Thoughts? And good luck to all of you too. If I can help you in anyway please let me know. Take care.

brainman

Hi MarysSon. I am very sorry about your mother's cancer. Pancreatic Cancer is one of the hardest cancers to treat with not a great outlook. She should receive aggressive treatment and it sounds like she is doing that. UT Medical Center is a fine place to go for the surgery but almost any oncologist can give your mother adequate chemotherapy and radiation therapy. I would not worry too much about how many cases they actually see in any given year.

I do like to know my prognosis but only in order to help me prioritize those things that I really want to do with whatever time I still have left. After that, I try not to think about my prognosis and to focus on doing the things in my "bucket list." After all, a prognosis is just a statistical probability. If my original prognosis had been correct, I would have died at least 5 years ago.

Here is a link to another member who survived Pancreatic Cancer for a very long time. You might want to visit his blog as well. Unfortunately, freeio died last fall.

http://cancerforums.net/viewtopic.php?t=4067
http://cancerforums.net/viewtopic.php?t=6939

You and your mother are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma 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/

MarysSon · Posted: Thu Feb 14, 2008 10:00 pm Post subject: Update on my mother

Thank you for the responses. I was and still am scared about the potential outcome just like everyone else. But I wanted to update those reading in hopes that it might help relieve a little of the fear surrounding the post op and chemo stage. First of all, I will tell you what every single person has told me - and that is if someone recommends the Whipple procedure go someplace and to someone who does hundreds of them. It's very important to go with experience on this and a local small town surgeon doesn't have that kind of experience. Also, check into the staff of that surgeon and the hospital. Make sure they are responsive and kind. That's so important because you will be interfacing with them constantly. It's a rough surgery no doubt, but it can be survived. My mother has actually thrived afterwards. She is one of the lucky ones, true. But if you are a candidate for the Whipple, that is a good sign. They don't do it on everyone that presents with PC. The recovery is hard, like any major surgery. But it's not forever. And you can get on with a normal life. As for the chemo, it's scary as hell to go to those pre-Chemo meetings or classes. My mother was very scared but I told her to look around and realize that there are so many people in the world that would love to have the opportunity for chemo and don't. It's a good thing she's able to do it. The regime they usually put PC patients on is pretty easy. It's getting there that is the hard part. And everyone does react differently. My mother has had a tiny bit of stomach discomfort on the second day following chemo. But nothing so far other than that. The port makes the chemo really easy and she said it doesn't hurt a bit at all. I can't say enough how scary it is to get to this point. But it's all ok. The doctors other than her surgeon have been very dramatic. And I think that's because they deal with so many horrible things each day. And that they look for problems they can fix. But everything is going fine, no bowel problems, no hair loss yet - we made a fun day out of buying a wig with my mom and sisters - no rashes, etc. If you are going through all this please feel free to email me and ask any questions. I was really frightened and the people here helped me get a grip and feel better. Helped me get through it without completely falling apart. It's all baby steps I suppose but it's all so important. Take care.

MarysSon · Posted: Thu Aug 21, 2008 3:38 pm Post subject: Update on my mother

In the last three weeks my mother got the all clear from her surgical oncologist, Dr. Roderick Swarz (no "t" in the last name) at the UT Southwestern Medical Center in Dallas. He told her that there are no guarantees, but as she has now survived 10 months post diagnosis, the surgery with clean margins, chemo and chemo/radiation that it looks as good as it possibly can. Microscopically, they have no idea if there are still some cancer cells going on in there but after all she's been through he doubts it. A brutal experience getting to this point on everyone who loves my mother as well. I can only imagine what it has been like for her. We have always been a family that celebrated events and created them to celebrate, but even more so now. We had a HUGE surprise party to celebrate the end of the chemo and radiation. My mother turned 72 the day after her last radiation treatment and my father turned 76 the week after that. I don't know what's next. None of us ever do. I guess I've learned that the important thing is to do the best with the time you have and not take it for granted. During this time period I mourned the loss of my beloved dog and was blessed with the birth of my second daughter, MaryBelle named in honor of my mother. And the best thing about it all was that she was there to hold her right after her birth. Truly a miracle. For those of you just beginning or on this journey I hope the outcome is as happy as my own. But please remember that in the midst of all of it, be there. Be present. Tell people how you feel about them. Treasure all of it. No matter how it happens, it's all over too quickly and we don't have any control over most of it. That being said, find the best doctors with the most experience and be an advocate for the patient. Take care of yourselves and thank you for all of the support you gave me.

brainman

MarysSon, I am glad to hear this wonderful news about your mother!! Your comments are right on. Enjoy every day.

You and your mother are still in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma 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/

Queensland Girl

Hello Marys Son,

I am so pleased that your Mom is doing well. I trully hope she is one of the 5% that survive the disease. The odds were not with my family.

Treasure the time you have with her, and make sure your children get the most out of their Grandmother too.

I have few regrets in life, but most are related to the lack of time I had with my parents.

Bless you all
_________________
Regards,

Queensland Girl

Mum diagnosed June 1993, surgery and chemo died August 1993 (Pancreatic Cancer)
Dad diagnosed July 2007, chemo only died January 2008 (Pancreatic Cancer)

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