Confused, Overwhelmed, Any information appreciated

Last week my mother was told she had a tumor on the pancreas. She had been feeling sick and she had her gallbladder removed as it needed to be. A couple of weeks later she was still having pain and they did and ERCP and the doctor said she has a tumor on the head of the pancreas. 

 We asked if the tumor could be benign/non-cancerous and he says no it cant. I did not believe this and check and sure enough they are not all this way. This is bothering me because I wouldn't expect a lie, but what is wrong with well over 95%+ or whatever of the time they are. And I knew either way is not good.

 So they go on and do the ERCP and do biopsies. This is when we find out it is int he head of the pancreas and learn it is about 21x26mm in size, but I am still confused if it is even a tumor as they say it is an area of concern, why not just say possibly cancerous tumor. 

 The biopsy comes back and they say all of it is negative for cancer. Then get hit with the bad news that it is entwining around a blood vessel (I looked and there are 4 in the head of the pancreas and I do not know which one it is). And that even though the doc said biopsies are negative for cancer it still is or he believes it is and they want to do a needle biopsy now too. But now we are told the area they want to look at can't be gotten to by a fine needle biospy, are there areas like this?  But they want to open her up and biopsy it. I am curious as to what information he will get from this, other than possibly a sign of cancer this time around

Also all the blood tests and the like are in normal range, except c9-19 or whatever it is called. it was like 51-57. But from what I read that can be elevated still from the gallbladder surgery and other medication according to a non cancer doctor friend.

 My wife told me just a few minutes ago, they "the doctors" also said that that the tumor can not be shrunk with chemo or radiation therapy? Is this true? I thought that they could happen and then possibly then the tomor could be resectable? I am really confused on this as well as the rest.

 I am trying to get her to send her results to another surgeon or go get at least a second opinion as the waiting can not be helping anything! We have found two people appear to be more forward thinking in regards to tumors that look unresectable. Maybe we can get her to give herself a fighting chance. 

Sorry for rambling, and I would appreciate any information anyone can provide, 

You should definitely get a 2nd opinion, if you have a university or teaching hospital nearby, be referred there.  We go to U of M in Ann Arbor Michigan.  This 2nd opinion will confirm the diagnosis for you and let you move forward with the best treatment.

Lisa

I agree, you should definately get a 2nd opinion. My dad, 53, was diagnosed in Late Aug with pancreatic cancer with the mass also involving (encircling) large blood vessels. They gave him 3 months, wasn't supposed to make it to the Holidays. We opted to try chemo and radiation therapy. The mass growth slowed a bit, shrunk just a bit, and either way he is still with us today.

Always get the 2nd opinion. My best advice is to read up on this, educate yourself when you can. It will help when yo talk to doctors and listen to doctors.  maybe reference where you live with doctors who specialize in this for of cancer, not just "cancer" in general.

Good luck.

Thanks...

 They finally scheduled another biopsy but it is not until wed the 23rd. IMHO this is to long to wait. It will be another non invasive one ESU or something like that, and there will be a pathologist right there to examine the biopsies. I guess this is a good thing. But how many times does it normally take to definatively diagnose this as being cancerous or not?

 She also requested the records so far so she could send them out to some other people to evaluate the results they have so far. So I am happy about that as I think the more opinions the better right now.

Lastly a relative told us that the University of Cincinnati Medical center has some pancreatic speacilists so hopefully we will have some quality people to check into for a second opinion on our options and the diagnosis. Not that  I think we should rule out going outside of our area, but it is nice to possibly have more choices.

Please get another opinion soon.  All of my husband's biopsies came back negative but he had cancer and the surgeon told him so.  It is very common for the biopsies to be negative because they have to get through a lot of scar tissue to reach the cancer.  See a surgeon.  Go to someone who does a lot of whipples.  At Columbia in N.Y. they use radiation and chemo to shrink the tumor first.  We went to N.Y.U. Cancer Center because the tumor was strangeling the bile duct not the vein.  My husband had successful whipple surgery on Nov. 1 07.  He is 52 and came home after 6 days.  He did one course of Gemzar and is now doing 6 weeks of 5FU and radiation then he will have three more months of Gemzar.  So far so good. 

Don't give up and see a specialist A.S.A.P.  Time is of the essence.  Good Luck

For sure your Mom should get a second opinion.  If possible, she needs to see a doctor at a center that specializes in treatment of pancreatic cancer.  

Doing a biopsy for a tumor in the pancreas can be difficult.  In my case, the doctors did several tests, including scans and "saw" a mass on the pancreas that was putting pressure on the duct from my liver and it caused jaundice.  The only way they could perform a biopsy was to start surgery (Whipple), which would be abandoned if they found any indication of malignancy that had spread to other areas.  I had a successful Whipple, but it took two weeks for the final results of the biopsy, which came out as early stage PC.  The initial results of the biopsy (at the surgical hospital) was no sign of malignancy.         

You may want to check out the forum at Johns Hopkins.  There are a number of people there who were stage 4 with blood vessel involvement that were able to have surgery after chemo.  They are very good about answering questions.  Link to the site follows.   

I understand your confusion and fear.  We have been there and done that.  Here is some of what I have learned.

Yes, the vast majority of pancreas tumors or masses are malignant---maybe even 95%. Like you, our family really wanted to hang on to that 5% possibility but it was not to be.   It is not unusual to have a difficult time getting a positive biopsy.  My husband had an ERCP with biopsy and two EUS before we got the bad news in writing.  One doc explained it to us this way.  The tumor/mass could be made up of cancer, inflammation, and scar tissue.  Maybe the cancer is a very small part of it.  Poking the mass with a needle and not getting cancer cells is very possible.

Doctors are so sure about this that they were considering surgery even before the positive biopsy.  I was told that any mass on the pancreas was a bad thing and needed to come out, cancer or not. 

Unfortunately, surgery was not in the cards for us either at that point.  Husband’s tumor was wrapped around blood vessels.  There are many on the Johns Hopkins discussion board who speak of having the tumor shrunk by chemo and radiation and then being able to have surgery.  This was not an option for us as further testing showed that the tumor was strangling a major vessel and allowed no time for this approach.  We then found a very aggressive surgeon who was willing to take the chance at resection.  Five months since surgery and eight months after diagnosis my husband is still here and cancer free as far as they can tell.  It’s been rough and he had many complications though.

As far as the delays go, we had that frustration too.  Every step of the way, we were told how aggressive this cancer is and how urgent the situation was.  Then the next appointment, referral, or test was 3-4 weeks away.  It drove us crazy!  We begged and screamed and pushed things along as fast as we could.   

I hope this gave you some explanation and some hope.  Feel free to ask anything on this board or to post a private message.  Best wishes to you and your family.

My mother is in for tests today after two biopsies that did not give a definative diagnosis of cancer. The second one came back with atypical cells, which from what I read can be cacncer or even from inflamation from any number of things. But as I read anything on the pancreas like that is bad news. I will still hold out hope for something other than that. There is definately something wrong and two blood vessels are dialated meaning they are being blocked or squeezed by something.

 Today, she is in for surgery so they can get to the spot to check it out via traditional surgery. This waiting game is hard, you hope for the best, but they can not start anything until a definative diagnosis I suppose.

 I had her contact a few places and she got some results and that is pretty much what they said that they need it to be diagnoses as cancer before they could do much. But I am trying to convince her to get somoene else to look too just in case. I really do not want her possibly messing up any chance she has elsewhere, but I guess there is nothing they could really do to cause that , could they?

I am afraid to say today hit like ton of bricks although we had hoped for the best.

 Surgery took 5 hours today and started late. It was indeed a tumor and it is much larger than the EUS let us to believe. Where we were told it looked to be about 1" in size the the doctor after telling us it was indeed canererous and non resectable. He made a figure of putting his thumbs and index fingers together making a rough circle to give us an idea of the size.  It is encasing the SMA and SMV and appears to be going down that. He did manage to bypass the biliary duct to give her some relief (we pray).

She appeared to be in much pain from the surgery, but was more alert than I expected after surgery. In fact she called us on our way home, but did not ask about anything other than basic things and if they did the bypass. My wife and I feel she knows from her comments.

I have sunk into a deep disbelief and am in shock. The size shocked me and I pray that there may be some chemo / radiation or something that will at least give a chance of shinking it and maybe have a shot at surgery. The doctor did not give us much hope, but presently that is all we have.

I have no clue on what to tell my 3 girls who love her dearly and beg to stay with her on weekends. I broke down crying when the littles one (the other two where with friends since they had school and went with them afterwards) tried reaching for a phone to talk to her grandma.

I would deeply appreciate any suggestions or words of hope from anyone. I hope she agressively tries to fight this and will be praying there is something that could at least give us hope of working.

I am worn out and very tired and numb from the days events. My dad is in shock too. He had a very bad time last year and was in the hospital for 18 weeks from a kidney surgery that turned south quick. My mother took care of him and is there for him every day. I tried to get him to stay with us tonight yet he would not.

Goodnight and God Bless..