Cancer of Unknown Primary

Hi

Thank you for taking the time to read this and help me if you can.

I am the daughter of a beautiful woman who has cancer. I just lost my dad to cancer 3 years ago and don’t know how to put a brave face on. I manage to do it, but its getting harder.

I feel for many of you on this site, and keep you all in my prayers, I am proud of you all for being so strong.

That being said, I did what I did for my wonderful dad, knowing the kind of cancer he had and helped him with the fight, but with my Mom it’s a different story. I am told she has stage 4 cancer that has settled in her liver. This was in December 09. She has had many many tests, but they cannot find where the cancer is coming from. She is on her second type of treatment, lost her hair….. My question is how on earth is it possible not to know where it’s coming from. They are treating it as if it were upper GI area. The first type of chemo was working for awhile, but new cancer started to develop. Can anyone advise? This new one, don’t have the name, but she takes it home, and its on fanny pack which pumps it on over a 48 hour period, she is sensitive to cold and metal. (side effect) Yesterday was round 4. Got a call from her doctor that the tumor markers are going up again….going for another pet and ct scan next week, but what now?? They call it CUP Cancer of Unknown Primary. Even all the sites like this one, don’t have any information on it. At least if we knew exactly where it was coming from perhaps we could fight better, or at least not do any treatments that will not help.

Any help would be greatly appreciated.

Vicky

That had actually happened with my aunt too.....it was the late 1980s.  They had thought it had started with the female organs, but could not determine it.  For her, it had spread so much by the time they discovered it they couldn't say what was the primary.

God bless.  You are in my prayers.

thanks, I hoping with the passing of time that there are tools that will not let this happen again.

Bless you too!

And thanks for responding,

On Aug 05, 2010 6:25 PM SadVicky wrote:

Hi

 

Thank you for taking the time to read this and help me if you can.

 

I am the daughter of a beautiful woman who has cancer. I just lost my dad to cancer 3 years ago and don’t know how to put a brave face on. I manage to do it, but its getting harder.

 

I feel for many of you on this site, and keep you all in my prayers, I am proud of you all for being so strong.

 

That being said, I did what I did for my wonderful dad, knowing the kind of cancer he had and helped him with the fight, but with my Mom it’s a different story. I am told she has stage 4 cancer that has settled in her liver. This was in December 09. She has had many many tests, but they cannot find where the cancer is coming from. She is on her second type of treatment, lost her hair….. My question is how on earth is it possible not to know where it’s coming from. They are treating it as if it were upper GI area. The first type of chemo was working for awhile, but new cancer started to develop. Can anyone advise? This new one, don’t have the name, but she takes it home, and its on fanny pack which pumps it on over a 48 hour period, she is sensitive to cold and metal. (side effect) Yesterday was round 4. Got a call from her doctor that the tumor markers are going up again….going for another pet and ct scan next week, but what now?? They call it CUP Cancer of Unknown Primary. Even all the sites like this one, don’t have any information on it. At least if we knew exactly where it was coming from perhaps we could fight better, or at least not do any treatments that will not help.

 

Any help would be greatly appreciated.

 

Vicky

 

I'm sorry; how horrible for you. We lost my dad to Leukemia, then 6 weeks later my FIL to brain then the next year my MIL was diagnosed with breast. My hub is currently fighting oral. I don't know why some people have to live the nightmare more then once.

Have they done a biopsy to see what type it is?

On Aug 05, 2010 6:25 PM SadVicky wrote:

Hi

 

Thank you for taking the time to read this and help me if you can.

 

I am the daughter of a beautiful woman who has cancer. I just lost my dad to cancer 3 years ago and don’t know how to put a brave face on. I manage to do it, but its getting harder.

 

I feel for many of you on this site, and keep you all in my prayers, I am proud of you all for being so strong.

 

That being said, I did what I did for my wonderful dad, knowing the kind of cancer he had and helped him with the fight, but with my Mom it’s a different story. I am told she has stage 4 cancer that has settled in her liver. This was in December 09. She has had many many tests, but they cannot find where the cancer is coming from. She is on her second type of treatment, lost her hair….. My question is how on earth is it possible not to know where it’s coming from. They are treating it as if it were upper GI area. The first type of chemo was working for awhile, but new cancer started to develop. Can anyone advise? This new one, don’t have the name, but she takes it home, and its on fanny pack which pumps it on over a 48 hour period, she is sensitive to cold and metal. (side effect) Yesterday was round 4. Got a call from her doctor that the tumor markers are going up again….going for another pet and ct scan next week, but what now?? They call it CUP Cancer of Unknown Primary. Even all the sites like this one, don’t have any information on it. At least if we knew exactly where it was coming from perhaps we could fight better, or at least not do any treatments that will not help.

 

Any help would be greatly appreciated.

 

Vicky

 

btw; are you comfortable saying where she is being treated? Maybe it's time to move on to a better center that has more technology?

NIH Cancer of unknown primary -

http://www.cancer.gov/cancertopics/factsheet/Sites-Types/unk

Quote -

In recent years, microscopic and other diagnostic techniques have improved dramatically. For this reason, doctors can now determine the primary site in about four out of five cases first diagnosed as CUP. In some cases, the part of the body where cancer cells are first found helps the doctor decide which diagnostic tests will be most helpful. Doctors also have other clues that help them find the primary site:

• The pattern of spread may suggest the location of the primary site. When the metastatic cancer is found in the upper part of the body, the original site is likely to be above the diaphragm (the thin muscle under the lungs that separates the chest from the abdomen) at sites such as the lung and breast. If the metastatic cancer appears first in the lower part of the body, the primary cancer is likely to be at sites below the diaphragm, such as the pancreas and liver.
  
  
• The type of cell found in the metastatic cancer can also provide clues about the hidden primary site.
• Most patients with an unidentified primary tumor have a cell type called adenocarcinoma. The term adenocarcinoma refers to cancer that begins in the cells in glandular structures in the lining or covering of certain organs in the body. Common primary sites for adenocarcinomas include the lung, pancreas, breast, prostate, stomach, liver, and colon.

from there - I would look at this pageI think it would be considered small intestine?

http://www.cancer.gov/cancertopics/types/cancersbodylocation

~Hugs

Hi Rose,

Cutie puppy btw! Thanks for the info, but I must say I am still lost, perhaps I am burned out. She is being treated in CT. We have faith in her doctor, she has been wonderful to mom, and very caring and also very sensitive to her feelings. In todays market doctors with feelings are hard to come by. At this time, I truly dont think mom do any tests. She is an emotional basket case (i say this in the most loving way) She is very depressed and angry which I can understand. For this moment in time she is holding, which is good. So I am not going to rock the boat, with scary tests. I know this sounds stupid, but I truly dont think she could handle it. Also I am a true believer that stress plays a big part in cancer.

Big Hugs!!

On Sep 18, 2010 6:28 PM SadVicky wrote:

Hi Rose,

Cutie puppy btw! Thanks for the info, but I must say I am still lost, perhaps I am burned out. She is being treated in CT. We have faith in her doctor, she has been wonderful to mom, and very caring and also very sensitive to her feelings. In todays market doctors with feelings are hard to come by. At this time, I truly dont think mom do any tests. She is an emotional basket case (i say this in the most loving way) She is very depressed and angry which I can understand. For this moment in time she is holding, which is good. So I am not going to rock the boat, with scary tests. I know this sounds stupid, but I truly dont think she could handle it. Also I am a true believer that stress plays a big part in cancer.

Big Hugs!!

Is she being treated at a large center or small one? I've found there is a difference. My dad was treated at a large center; when he moved to a small local one; he went downhill fast.

My dad & hub filled out something called 5 wishes (link below). My hub did it even though he had an 85% chance of survival. Even though I am healthy, I should fill one out too.

http://www.agingwithdignity.org/five-wishes.php

Is there a social worker you can talk to to get help for your mom? They can put her on antidepressants - my hub was on effexor; it worked great. They can also give you a counselor that she can talk to that deals with cancer.

~Hugs