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Dogsledder
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Posted: 02-09-2008 07:06 am |
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Hi, My name is Harriet. Almost 3 years ago a tumor was found in my pancreas and 1/3 of the pancreas was removed. There was no cancer in the tumor. I now go to Huntsman every 6 mos for a Cat scan or MRI. There is another small tumor in the pancreas which has been there for 2 1/2 yrs. It has not grown but is in the main duct. It has not changed in any way. My tumor markers edge down every 6 months but have not returned to normal. We are playing "Wait and See."
Is anyone else having a similar experience? Does the tumor HAVE TO change or grow? I kind of get that indication from my Dr. and that makes this an ongoing stressful experience.
Thanks for any thoughts or experiences you can share.
Harriet
Last edited on 02-09-2008 07:08 am by Dogsledder
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Hiway
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Posted: 03-31-2008 04:18 pm |
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Harriet, hope all is well and may God Bless You. I have a 5cm tumor in the head and the body of the pancrease which has been diagnoised as a neuroendocrine Islet tumor and is cancerous, but have not been advised that the cancer can be removed. Maybe they dont have the skills in Arizona. Have you or did you notice increased depression and anxiety with the growth in the pancreas and if so was there a medication that worked well to ease this. This has been my biggest stuggle. I was given Xanax and that did not help much so I discontinued it and now am taking nothing and dealing with the withdrawal from the Xanax. I would think that by not growing is a very good sign on your behalf. I wish you the very best.
Norman
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Dogsledder
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Posted: 03-31-2008 11:55 pm |
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Hi Norman, (Sorry about the above. I entered your 'name' instead of mine.)
I am doing well. I just report in every 6 mos to Huntsman for an MRI. So far so good.
I do know that my surgeon, Sean Mulvihill, at Huntsman, says that if my tumor goes canerous he will take out another 1/3 if my pancreas, if possible. If for some reason that won't work he will remove the pancreas entirely. That will leave me with diabetes that may be somewhat hard to handle. I am willing to take that option, if necessary.
Unless there is something 'special' about your type of tumor, I don't know why they can not remove the head and the body of the pancreas. The remaining 1/3, or so, can do the work of the whole pancreas.
If they don't have the surgical skill in AZ, come up to Huntsman Institute in SLC and see Dr. Mulvihill. He is one of the best in the nation and is also running research on cancer of the pancreas. (I am involved with that in that I give extra tubes of blood every 6 mos. for the study.) It is a trip but not impossible.
How are you feeling besides the anxiety and depression? Is there cancer anywhere else in your body or did the cancer start in the pancreas?
I did not have anxiety or depression associated with the tumor in the pancreas. Other life events have produced anxiety and I have found Valium or Lorazepam very helpful. I have never taken these kinds of drugs on a regular basis (even if the doctor says 'take twice a day every day' or similar), mainly because I do not want to build resistance to them. I take a pill or 1/2 of one ,when needed, and it gets me to slow down my thinking and become more relaxed.
Keep me up on what you are doing, feeling, etc. I would love to have a compatriot on the pancreatic trail, or is it trial?
Harriet
Last edited on 04-01-2008 12:09 am by Dogsledder
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Hiway
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Posted: 04-07-2008 09:09 pm |
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Harriet, I am doing better this week as I decided to go off of the Xanax cold turkey a couple of weeks ago. That experience was horrible. Other than low energy and high anxiety I seem to be doing OK. The Surgeon says this type of cancer is slow moving and I could live up to 10 years so they do not want to do surgery or radiation or chemo. The oncologyst I saw today says it is very rare, just my luck. I do have family in Utah County so that would not be a problem and it would be worth an appt. with the Dr. to get is expert opinion. Someone also suggested the Stanford Cancer Institute S. of San Fran. Thanks for the Drs. name.
Hiway
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Dogsledder
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Posted: 04-08-2008 02:29 am |
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Hiway,
You might also look into UCLA Medical Center. They have a large Pancreatic department.
Why no chemo or radiation? I can understand the 'no surgery.'
I am glad you got off the Xanax. If it feels bad, drop it fast so it can get out of your system faster.
I am also glad you are feeling better. I hope it stays that way.
Dogsledder
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Hiway
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Posted: 05-18-2009 06:44 pm |
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Dogsledder, give me an update on how you are doing. Hope all is well and God Bless.
Norman
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Dogsledder
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Posted: 05-18-2009 09:13 pm |
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Hi Norm,
Am doing well. Feel well, too.
Had my semi annual MRI and tumor marker tests about a week ago. The tumor had not changed or grown. That makes it four years now with no change.
The tumor marker CA19-9 was the lowest it has been for 4 years, not normal, but good for me. The other marker CEA has doubled up. Not good. The CEA is the primary marker for colon cancer/tumors so....Guess who will be having a colonoscopy soon. I am hoping the rise in the marker is a fluke, but if not, I will consider it good luck that the CEA marker warned me as I feel too good to have thought to have a colon test on my own.
I wish you were not so anxious. Anxiety can really grind on you. Have you always had anxiety to some degree?
I hope your tumor doesn't change or grow for 30 years and more.
Hang on and enjoy what is good is in your life right now.
Dogsledder
Harriet
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Hiway
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Posted: 05-18-2009 10:00 pm |
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Harriet, thank goodness I havn't been one with high anxiety during most of my life, but the you got 90 days to live, did set me off I am actually doing better this year than last and have been coping quite well. There is still no treatment that has been recommended other that the sandostatin shot each month, blood work seems to be about normal with a slightly low white cell count. Thanks for posting and God Bless.
Norman
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