3 cm Tumor on head of pancreas

my4boys · New User Joined: 21 Jun 2006 Posts: 9

After 2 CT scans the drs have determined that what they thought was a psuedocyst is in fact some other type of tumor. I feel like I'm not getting "real" answers. I've been in a holding pattern waiting for a specialist at Columbia Presbyterian Pancreas Center to respond to my gastros letter. I can't seem to find anything positive out there with regards to finding a tumor on the head of the pancreas. Are all tumors on the head of the pancreas cancer? I'm relatively young 39 but I am a smoker. As the weeks go by I'm getting more and more scared. I have other symptoms but my dr does not seem concerned. I feel sick after eating so I eat small meals. Acid reflux especially after eating. I'm drinking alot of water that helps a little. Now I'm beginning to wonder if I'm just freaking myself out!

rechargeable

Hi my4boys,

What was it that prompted the doctors to give you the CT scans? Is there any kind of biopsy of the tumor underway? And what exactly was in this "gastros" letter? (Sorry I don't know what that means.)

I don't think there's any way to know if a particular tumor is cancerous until it's either been biopsied or shown to be growing in such a way that it is invading your body's vital systems. Unfortunately I don't know whether benign tumors frequently occur on the pancreas or not. The fact that you're waiting weeks for further testing is disappointing.

Have the doctors tested your blood sugar at all? I would think that diabetes would be a main concern with any kind of pancreatic disturbance, regardless of how little they know about it.

my4boys · New User Joined: 21 Jun 2006 Posts: 9

I was having pain in my upper ab area and they thought I could have gall bladder issues. I had a sonogram first and the radiologist happened to see this thing on my pancreas. My regular GP sent me to have a cat scan and they thought it was a psuedocyst. I decided to get a second opinion from a Gastroenterologist and he sent me for a second CAT. After the second CAT they determined that it was not a psuedocyst.
My Gastroenterologists sent a letter and my records to the specialist because he felt I needed something called EUS and a fine needle biopsy. This has been going on since February and I'm getting frustrated. I've called my Gastroenterologist and the nurse just sounds annoyed when I call. I have a number of blood tests done and when my Gastroenterologists said my CA 19-9 was normal... not to worry But I've started having symptoms that are just not normal for me.

rechargeable

You've been waiting since february!? That's unacceptable for something that's potentially so serious. I don't know what the next move is but you either have to get that specialist and/or your gastroenterologist to move faster, or you need to go to someone else.

Maybe tell your GP that you've been waiting since february for an answer from the specialist, and that since the gastroenterologist has essentially passed you off as someone else's problem to someone who evidently doesn't have time to bother, to refer you to an oncologist. Have the CT scan information shared with the oncologist (however they do that) and see what they think. Gently but firmly remind them of the potential seriousness of the situation.

Whatever you do, get someone moving on this.

How far apart were the two CT scans? If they were fairly far apart, did anyone note any change in this object?

my4boys · New User Joined: 21 Jun 2006 Posts: 9

The CTs were about 3 months apart. My Gastroenterologist did call me last week to tell me he has not heard from the specialist yet. But other than that nothing

my4boys · New User Joined: 21 Jun 2006 Posts: 9

and there was no noted change just that they said they no longer thought it was a psuedocyst

rechargeable

Well hopefully that means that it isn't growing fast, or better yet, at all.

Hope you manage to get some more feedback from them and get a biopsy ASAP. Let us know what happens.

reenie

I just saw your post and am horrified by the run around you have been through. It sounds as if you are not being treated with respect. There are times when I have had to say to a doctor's staff " I know this is common place to you, but it is all very new and frightening to us so please..."( add whatever you need them to do). If that is not well recieved then I tend to think I'm not dealing with the type of person who will go the extra mile to help and their employer needs to know that. Don't get me wrong, I try to be pleasant, attentive,and brief in my dealings, but it's all too important to not be a consumer first. Good luck. Reenie

my4boys · New User Joined: 21 Jun 2006 Posts: 9

My Dr. called today to let me know he heard from the specialist at Columbia-Presbyterian Pancreas Center. The specialist said he wants to do some kind of internal ultra sound and biopsy. It sounds scary but I'm glad things are now moving. I'm not sure of the process yet, hopefully its not too painful. I got scared just getting an iv for the cat scan medium.

I'm getting a list of questions together because I'm in way over my head. I did read in this forum "you should take control of your care". I would appreciate any input as to what I should ask or look out for during this procedure. What I should ask when the biopsy comes back. That kind of thing.

rechargeable

I seem to recall my father getting what's called an endoscopic ultrasound. I think it was uncomfortable, but measures should certainly be taken to ensure that it is not painful for you. This may be the procedure they have in mind:

http://gi.ucsf.edu/proc_eus.html

Of course that's just a link I came up with and your doctors could have something totally different planned for you, or some variant of that, or whatever, so take it with a grain of salt unless you know what you're getting is in fact an endoscopic ultrasound.

Please remember that right now you don't know what you have, and that you won't know until the results of this test come back.

That being said, if you do end up needing the following information, I found this excellent list of questions at the Johns Hopkins pathology site: http://pathology2.jhu.edu/pancreas/questions.cfm

I recommend reading that whole article as well. It seems to have very comprehensive info on the subject. I didn't realize this, but Johns Hopkins is apparently involved in a phase 2 trial of a pancreatic cancer vaccine, though I imagine that if they'd found a magic bullet, it'd be all over the papers... anyway there's info about that at that link too.

Good luck with your test. I hope it's happening soon.

reenie

I'm so glad things are finally moving along for you.
My husband had an EUS/FNA (edoscopic ultrasound/ fine needle aspiration)in April at University of Virginia. The EUS is done first and if there are cells worth looking at they take them by FNA. It was just like a regular endoscopy for him, he was medicated and felt no discomfort- or at least remembered none. He was up and out of the hospital about an hour or so after the procedure. We stopped and had lunch on the way home. I hope, if this is the procedure you are having, it is as easy for you. Sam and I were given the results right away.
Best of luck! Reenie

my4boys · New User Joined: 21 Jun 2006 Posts: 9

Thank you all so much. I think one of the most difficult things may be the unknown. I don't know if it's cancer. I don't know the procedure. I don't know how to talk to the doctors(it seems like a secret society!) And all this time I've been thinking and feeling the worst. I'm afraid of the possible pain. Of being alone. I just can't describe it. I don't even mention the possibilities to my husband or family. I just don't think they can handle it. So I've been unable to express my fears. I just want you all to know that I've learned so much from this site. The previous link on the procedure was very helpful. I just need the mystery removed. If I know what I'm facing.. I can prepare. I know this sounds like rambling but I've got a good life. A great husband, 4 amazing sons and a faith that can move mountains. What ever this thing is.. There is a reason for it's presence. Whether that be God calling me home or sending me on quest. Either way we need more awareness. We need more research, I'm completely appalled at the mortality rate of pancreatic cancer. How can something be so insidious and most people so unaware? I just don't get it! How can there be no early warnings or tests? How is it possible that by the time you show symptoms it seems virtually too late??! I apologize but I'm getting angry and I'm already scared.

bk0521 · New User Joined: 25 Jun 2006 Posts: 1 Location: Toronto

This is my first time posting to this site, but I felt compelled to offer my best wishes to you and your family. My 64 year old mother is currently suffering from pancreatic cancer, diagnosed just over 2 months ago. I hope your luck is better than hers but I must tell you your suspicions are very well founded, statistically: Around 95% of masses on the head of the pancreas are malignant adenocarcinomas.

I urge you to use every strong emotion you are feeling - fear, anger, whatever - as productively and constructively as you can, in order to mobilize your medical caregivers into swift action. You are an important person, a mother and wife, and these doctors are there to serve your needs. Prepare and ask lots of questions. If they don't make time to answer them, it's time for another doctor to step in to give you your answers.

A mass that has not been thoroughly checked cannot be rightfully diagnosed as a pseudocyst. Do you have a history of pancreatitis? Pseudocysts are typically caused in that way, according to this page:

http://www.nlm.nih.gov/medlineplus/ency/article/000272.htm

I'm glad you're finally being checked. I also hope you can be open with your family about this, because they must be given the chance be there for you as I'm sure they would want to. It isn't healthy to carry this pain yourself. I don't know but perhaps then you'll feel less alone?

Good luck to all of you.

my4boys · New User Joined: 21 Jun 2006 Posts: 9

Looks like things are moving rather quickly now. I got the call from the specialist's office at The Pancreas Center at Columbia Presbyterian. He has accepted my case and they've scheduled the EUS with fine needle aspiration for Wednesday. I've read some amazing things about Dr. Lightdale and I'm confident that I'm in good hands.

I'll post results as soon as I know something. Thank you all for your strength and wealth of information.

Wunderchu · Regular Joined: 21 Feb 2007 Posts: 29

[quote="rechargeable"]I seem to recall my father getting what's called an endoscopic ultrasound. I think it was uncomfortable, but measures should certainly be taken to ensure that it is not painful for you. This may be the procedure they have in mind:

http://gi.ucsf.edu/proc_eus.html

Of course that's just a link I came up with and your doctors could have something totally different planned for you, or some variant of that, or whatever, so take it with a grain of salt unless you know what you're getting is in fact an endoscopic ultrasound.

Please remember that right now you don't know what you have, and that you won't know until the results of this test come back.

That being said, if you do end up needing the following information, I found this excellent list of questions at the Johns Hopkins pathology site: http://pathology2.jhu.edu/pancreas/questions.cfm

I recommend reading that whole article as well. It seems to have very comprehensive info on the subject. I didn't realize this, but Johns Hopkins is apparently involved in a phase 2 trial of a pancreatic cancer vaccine, though I imagine that if they'd found a magic bullet, it'd be all over the papers... anyway there's info about that at that link too.

Good luck with your test. I hope it's happening soon.[/quote]

the latest news on development of a vaccine seems promising, in my opinion: http://www.medscape.com/viewarticle/551111
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