One patient with glioblastoma still alive nine years later
by Claudia2 on Fri Feb 20, 2009 12:00 AM
Hi! I am new on here but have been very interested in the posts in this thread on cancer of the tail of the pancreas. I am a 60 year old woman who was diagnosed with a small "hypervascular tumor in the tail of the pancreas, possibly a neuroendocrine tumor". almost a nine months ago. The attitude of the doctors is to just "keep and eye on it unless it becomes symptomatic". I have had two CTs with contrast. They keep saying I don't fall into the high risk group and tumors in the tail are rarely malignant but this makes me nervous. From what I am reading, and from your posts it is still a possibility and, by the time it is symptomatic, it may have spread beyiond the pancreas. What was any of your or your family members' early experiance with diagnosis and symptoms? Were there any tests done early beyond CTs? Thanks. I am wishing you all the best luck and care!
by GerryB on Fri Feb 20, 2009 12:00 AM
by sgmstage4 on Fri Feb 20, 2009 12:00 AM
On 2/20/2009 GerryB wrote:Hello Claudia, I had the same tests done. I had PC on the tail of my pancreas. I was lucky that it was caught early. I had half my pancreas and my spleen removed in Nov '08. It never spread so I didn't need any chemo or radiation. Early detection is critical. If you are worried I would get a second opinion. I don't know where you live but Memorial Sloan Kettering in NYC and Johns Hopkins in Baltimore are supposed to be the best. There is also a cancer center in Texas but I don't know the name. Good luck and stay well, Gerry....................
by MarkB on Fri Feb 20, 2009 12:00 AM
I would recommend a second opinion. I don't think that this is the kind of thing that you give time to! If it is a Tumor, you want a biopsy quickly to determine the type. Typically, a Distal surgery is then performed to eliminate a cancerous tumor. But "wait and see" is NOT a good strategy!!!
I'm Praying for you,
Hi and thanks for such a quick reply. Can I ask if you had symptoms and what your tumor was like (size, composition, etc) and how was it found? I have some vague symptoms of something but know they could be totally unrelated. I am on the west coast. The Texas center is M. D. Anderson. I am at a major medical center but my primary physician is on maternity leave, so I see someone different every time. I am trying to balance sounding like a hysterical old woman and being assertive enough to get answers. I just don't know what to ask or what is reasonable testing at this point. Thanks again, Gerry, so much. Your outcome sounds so positive and hopeful! I appreciate any information you are willing to share.
On 2/20/2009 MarkB wrote:Hi Claudia,I would recommend a second opinion. I don't think that this is the kind of thing that you give time to! If it is a Tumor, you want a biopsy quickly to determine the type. Typically, a Distal surgery is then performed to eliminate a cancerous tumor. But "wait and see" is NOT a good strategy!!!I'm Praying for you,God Bless,MarkB.
Thanks, Mark. I was told by one doctor that a biopsy itself can spread the cancer beyond the pancreas if it is malignant. What is your experiance with biopsies on this type of tumor? How small was the tumor in your experiance (yours?) and how was a biopsy done? Through an edoscopic proceedure? Did you have symptoms and how was it discovered? If you don't mind me asking. I am just gathering as much information as possible. My tumor is very small but I have also seen information (and I stick to good sites like Mayo Clinic and John Hopkins) that says that small tumors of this type are more likely to be malignant than large ones. Again, any experiance with this? Claudia
On 2/20/2009 sgmstage4 wrote: On 2/20/2009 GerryB wrote:Hello Claudia, I had the same tests done. I had PC on the tail of my pancreas. I was lucky that it was caught early. I had half my pancreas and my spleen removed in Nov '08. It never spread so I didn't need any chemo or radiation. Early detection is critical. If you are worried I would get a second opinion. I don't know where you live but Memorial Sloan Kettering in NYC and Johns Hopkins in Baltimore are supposed to be the best. There is also a cancer center in Texas but I don't know the name. Good luck and stay well, Gerry.................... That center in Texas is M.D. Anderson, and is in Houston, and it is GREAT!!!!
Thanks. I am on the west coast. We have some excellant medical centers here but do any of you know if any west coast centers have exceptional experiance with pancreatic tumors?
by MarkB on Sat Feb 21, 2009 12:00 AM
I have never heard that a biopsy can spread cancer. I suppose it is possible. I know that most cancer hospitals including my hospital, MD Anderson, will not accept patients that have not had a biopsy diagnosis because they had to wait for mine before accepting me into the hospital. I was biopsied when they placed a stent in the bile duct to clear a blockage.
I have little experience with little tumors. My tumor, at the beginning of treatment measured, at it widest point 6cm. It was located in the head of the pancreas. I was diagnosed, Nov. 21, 2007 (ERCP/biopsy). I was staged at MD Anderson sometime before Dec. 7th, 2007. Adenocarcinoma Stage IV, Mets in the liver (8-12) and lymphnodes, inoperable. I started Chemo (GTX) The first week of Dec. 2007. The first indication that something was wrong was Nov. 17th. I felt a little nausea and did not feel like eating. So, you see that I wasted little time between Nov. 17th and Dec. 7th when I started Chemo.
Claudia, I am not a doctor...but I don't know any doctor that thinks "wait and see" is a good idea with possible pancreatic cancer. When first suspected, my GP rushed me to have blood tests and even set an appontment with a GI doctor before asking me, she said "make it to the appointment. The GI Doctor put me into the local hospital on Friday and after a CT Scan and an MRI, refered me to Surgeon who performed the ERCP. All of this took place in less than two weeks! The ERCP was done two days before Thanksgiving!! The GI guy had a hard time finding a Surgeon willing to take time from the holiday to do me! When I got to MD Andrson My Oncologist saw me first on Friday, I satared Chemo on Monday. There was a great sense of urgency with each of these doctors.
So you see my GP, GI, Surgeon, and Oncologist all worked fast...the end result...I'm still here and doing pretty good 15 months later. The surgeon informed me that I only had 3 to 6 months after the ERCP. My Oncologist was a little more optimistic, he thought he could get me to my daughters wedding in June' 08.
I don't know that small tumors are more aggresive or more likely to be malignant....everyone has an opinion on all these sites, I recommend discussions with your doctor is the best source of information (but be sure you have a good one). I go to my appointments with a list of question written down on a pad. I don't leave the appointment until I have all the questions answered. These sites are best used to formulate questions to ask the doctors. BUT, make sure you understand and are satisfied with the answers.
I think I answered all your questions, don't hesitate to ask me more! I know I get a little long winded, but I try to give good answers.
I believe that God will not take me (or anyone else) from this world until it's my time by His clock. So I don't worry about the doctors predictions of how long I have. I hope you don't either.
by GerryB on Sat Feb 21, 2009 12:00 AM
by Maria_Ildonete on Sat Feb 21, 2009 12:00 AM
I had a tumor taken from the tail of my pancreas in1999. It was a golf ball size. The doctors realy didn't know what was going wrong with me. I had lost a lot of weight and had become diabetic, and also I had a type of rash. The Dermathilogist didn't know about the rash. They just gave me cream. I was diagnosted at Sansum Clinic in Santa Barbara, California, in 2005. The Doctor's name is Mark Wilson. The most interested Doctor I ever seen. He could not treat me because he is one Endocrinologist.
I am being treated at MD Anderson, in Texas. My Doctor there, is (Oncologist) Dr. Phan, a G.I. Doctor. One of the best also. She gave me 30% chance that the tumor would respond to chemo. It is responding beautifuly. In California, no one wanted to put me in chemo, because they said, that type of tumor do not respond to chemo.
Keep going. Do not wait, because this type of thing, you don't sit and wait.
My prayers are wjth you!
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