No biopsy, cancer diagnosed, no treatment?

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No biopsy, cancer diagnosed, no treatment?

by heatherb on Mon May 24, 2010 09:06 AM

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Hello,

I just found this community as I have just started researching pancreatic cancer this week... My father, 74 yrs old, was diagnosed on wednesday (may 19th, 2010) with pancreatic cancer. It all happened suddenly, his skin was becoming a bit yellow but was VERY yellow the friday before last. My mom, and other friends who saw him and couldn't believe his skin color,  took him to the hospital that day (he thought he looked "fine" and felt fine... didn't want to go!) and the hospital then sent him by ambulance to Hartford hospital. There, they told him his pancreas was blocked, that on the following wednesday they would place a stent to unblock, and that then they would be able to diagnose.

Well, the stent was placed successfully, my father started feeling better immediately. However, the doctor did give him the news: he has pancreatic cancer.

What confuses me is the following:

- no biopsy was performed. So he wasn't told what phase the cancer is in or anything. The doctor based his diagnosis on his experiences and all the similar cases he's seen before.
- No treatment was advised because there is no cure -- the doctor told him he would go through futile suffering (chemo and/or radiation). Is there nothing my father can do?
- He was told he has approximately 2 years, which could even be 5 if he is one of the rare cases where the cancer is slow or goes into remission...

I guess I am most worried because I WANT to be optimistic.. but how can the doctor be so sure without having performed a biopsy??

Add to all this that he and my mom are in CT, but I live in Spain with my husband and 2 young sons. So all communication has been by phone, email... I still haven't seen him.

I will be there this summer fortunately...

This is really hard! :( the uncertainty is very rough.

Thanks for reading, and I will greatly appreciate any advise, opinions, hearing similar experiences.

((HUGS)) to all.

Heather

RE: No biopsy, cancer diagnosed, no treatment?

by Chessie on Mon May 24, 2010 11:32 AM

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Hi Heather,

I just went through something similar with my husband only they insisted that the tumor in the kidney was cancer.  They did surgery and it was determined that the "huge" tumor was benign.  BUT, there were 2 smaller tumors lower in the kidney that were malignant, and each was a different type cancer. 

Point is they did not do a biopsy either.  I believe I would have to get a second opinion and see what someone else recommended.  It's true that with his age the IV chemos could be very rough on him as well as recovery time from surgery.  But for peace of mind, the 2nd opinion would help.  Then you won't be guessing or feeling you should have done more later on.

Good luck and God Bless you and your family.

 

RE: No biopsy, cancer diagnosed, no treatment?

by BCinOntario on Mon May 24, 2010 01:34 PM

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Hi Heather,

Based on what you have explained, my first thought is, get a second opinion, espcially when dealing with this kind of cancer. I have never heard of a case where a diagnosis was made without the benefit of at least : a CT, MRI, EUS or biopsy. I will say that the biopsy however, is not the be all and end all as a diagnostic tool, and can result in bleeding, so I wouldn't be overly eager to pursue this for my loved one. My mother lost her short battle with PC last year, and we had asked for a biopsy and she ended up experiencing some internal bleeding from it that caused some additional issues for her. 

Blockage of a pancreatic duct and/or symptoms of jaundice can also mean pancreatitis, which is inflammation of the pancreas. Not to say that this is the case but you need to determine and have the right to know about the presence of his tumor(s), where they are and what their pathology is. This can be determined with a CT with PET and CA-19-9 which is a tumor marker test. CT for size, PET to determine metabolic activity. In the first instance, the CA-19-9 is a bloodtest to determine presence of cancer as a result of elevations in specific antigens. The higher the number, the greater the likelihood that there is a tumor or tumors present, that are advanced and possibly unresectable. In the second instance, this tumor marker test is used while patients are receiving chemo, to determine whether the particular chemo they are receiving, is working, in monitoring the shrinkage, or lack of, in the tumors.  

If your Dad is feeling fine, and the doctor is saying 2 years and maybe 5, then he is really just guessing. This is somewhat encouraging news, and there is every reason for you (and him) to be optimistic, but, you want to be sure.

There are options, traditional chemotherapy (GTX being a very successful option) and a whole range of holistic approaches as well. Time is of the essence. Get that second opinion, and don't take no for an answer. Arm yourself with as much information as you can on your dad's particular condition. He is not a statistic, and should not be treated as such by any doctor.

Hope this helps. I wish your Dad all the best.

RE: No biopsy, cancer diagnosed, no treatment?

by heatherb on Mon May 24, 2010 02:09 PM

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On may 24, 2010 1:34 BCinOntario wrote:

Hi Heather,

Based on what you have explained, my first thought is, get a second opinion, espcially when dealing with this kind of cancer. I have never heard of a case where a diagnosis was made without the benefit of at least : a CT, MRI, EUS or biopsy. I will say that the biopsy however, is not the be all and end all as a diagnostic tool, and can result in bleeding, so I wouldn't be overly eager to pursue this for my loved one. My mother lost her short battle with PC last year, and we had asked for a biopsy and she ended up experiencing some internal bleeding from it that caused some additional issues for her. 

Blockage of a pancreatic duct and/or symptoms of jaundice can also mean pancreatitis, which is inflammation of the pancreas. Not to say that this is the case but you need to determine and have the right to know about the presence of his tumor(s), where they are and what their pathology is. This can be determined with a CT with PET and CA-19-9 which is a tumor marker test. CT for size, PET to determine metabolic activity. In the first instance, the CA-19-9 is a bloodtest to determine presence of cancer as a result of elevations in specific antigens. The higher the number, the greater the likelihood that there is a tumor or tumors present, that are advanced and possibly unresectable. In the second instance, this tumor marker test is used while patients are receiving chemo, to determine whether the particular chemo they are receiving, is working, in monitoring the shrinkage, or lack of, in the tumors.  

If your Dad is feeling fine, and the doctor is saying 2 years and maybe 5, then he is really just guessing. This is somewhat encouraging news, and there is every reason for you (and him) to be optimistic, but, you want to be sure.

There are options, traditional chemotherapy (GTX being a very successful option) and a whole range of holistic approaches as well. Time is of the essence. Get that second opinion, and don't take no for an answer. Arm yourself with as much information as you can on your dad's particular condition. He is not a statistic, and should not be treated as such by any doctor.

Hope this helps. I wish your Dad all the best.

Thank you so much for your reply.

So many terms are new to me... (EUS, the PET and CA-19-9...)

I do know the performed a CT, and many blood tests. Perhaps that did show enough information without the need for a biopsy? I am going to ask my mom for those specifics.

I will also encourage her to encourage my dad to see a different doctor, for a second opinion... however... it's not easy because he is feeling "at peace" with this diagnosis. He survived a heart attack 10 years ago... and is feeling that one way or another his "time" is simply coming up.

RE: No biopsy, cancer diagnosed, no treatment?

by heatherb on Mon May 24, 2010 02:25 PM

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Thank you! Yes, it's exactly what you say, that it seems like we are guessing... and it's really scary, since we are all so far away, to think that we are counting on a specific amount of time to get together... when perhaps we should be considering a different amount of time...

I am going to suggest the 2nd opinion to my parents. As I said in another comment... it won't be easy, knowing my dad. But I need to try.

RE: No biopsy, cancer diagnosed, no treatment?

by BCinOntario on Mon May 24, 2010 03:16 PM

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Good to hear that at least a CT and bloodwork has been performed Heather. Perhaps the CA-19 or at least bloodwork to test liver and pancreas function. The second opinion will at least confirm the initial findings, and/or give you more information to go on.

Wishing you strength and courage in the days ahead. Stay strong and keep us posted on how things go with your Dad.

RE: No biopsy, cancer diagnosed, no treatment?

by slimjim on Sat May 29, 2010 04:14 AM

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Heather,

Find new docs immediately. What you've described is unacceptable by any measure. Your dad should go to a hospital that treats pancreatic cancer, if that is what he has, regularly.  Large hospital centers like Mass General, Memorial Sloan Kettering, etc. are the places where one goes with a diagnosis such as the one your father got.  Please do not waste any more time at a local or suburban hospital.  Jaundice can be caused by many different diseases, not just pancreatic cancer.  Get 3 opinions, not 1, or 2.  You need a concensus, not opinions.

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