Stage IV Adenocarcinoma of Unknown Primary

My dad was diagnosed with Stage IV Adenocarcinoma of an Unknown Primary last week.  He is 54 and otherwise healthy.  He suffered with back pain and weight loss for about a year which lead to a CT scan which showed a large mass in the left side of his abdomen.  Because this mass encases arteries it is inoperable.  The prognosis is months not years and our options are chemo to stunt the cancer spread or radiation to shrink the tumor in his abdomen.    There are pros and cons to each and we are uncertain with which to begin.  I refuse to accept that he will not be with us this time next year and I am seeking all advice and suggestions.  Any information or advice would be greatly appreciated.  Thanks.

On 8/2/2009 Treelee wrote:

My dad was diagnosed with Stage IV Adenocarcinoma of an Unknown Primary last week.  He is 54 and otherwise healthy.  He suffered with back pain and weight loss for about a year which lead to a CT scan which showed a large mass in the left side of his abdomen.  Because this mass encases arteries it is inoperable.  The prognosis is months not years and our options are chemo to stunt the cancer spread or radiation to shrink the tumor in his abdomen.    There are pros and cons to each and we are uncertain with which to begin.  I refuse to accept that he will not be with us this time next year and I am seeking all advice and suggestions.  Any information or advice would be greatly appreciated.  Thanks.

I am sorry to hear about your dad. My mom was diagnosed with metastatic adenocarcnimoa in her right lung. It was in Aug 2007 when she  had pleural effusion (fluid) in her right lung. She is still with us, althout she had couple of episodes when her condition was serious. Now we are up against this metastasis in the bones. 

First thing, don't lose hope and have faith in God. Try to spend time with your dad as much as you can. There is no alternative to parental relationship. 

In terms of treatment, try to ask your doctor about the drugs and protocol they want to use and what kind of coverage they are expecting to have from those drugs. e.g. For my mom, doctors gave her chemo for lung as a primary. Since your dad had a backache, have the doctors advised a bone scan to rule out any metastatis to bones ? Please bear in mind that I am not a doctor, I am just sharing my experiences. 

My heart goes out to you and I really wish that you have some good time with your dad.

On 8/3/2009 miracleshappen wrote:

 

On 8/2/2009 Treelee wrote:

My dad was diagnosed with Stage IV Adenocarcinoma of an Unknown Primary last week.  He is 54 and otherwise healthy.  He suffered with back pain and weight loss for about a year which lead to a CT scan which showed a large mass in the left side of his abdomen.  Because this mass encases arteries it is inoperable.  The prognosis is months not years and our options are chemo to stunt the cancer spread or radiation to shrink the tumor in his abdomen.    There are pros and cons to each and we are uncertain with which to begin.  I refuse to accept that he will not be with us this time next year and I am seeking all advice and suggestions.  Any information or advice would be greatly appreciated.  Thanks.

I am sorry to hear about your dad. My mom was diagnosed with metastatic adenocarcnimoa in her right lung. It was in Aug 2007 when she  had pleural effusion (fluid) in her right lung. She is still with us, althout she had couple of episodes when her condition was serious. Now we are up against this metastasis in the bones. 

 

First thing, don't lose hope and have faith in God. Try to spend time with your dad as much as you can. There is no alternative to parental relationship. 

In terms of treatment, try to ask your doctor about the drugs and protocol they want to use and what kind of coverage they are expecting to have from those drugs. e.g. For my mom, doctors gave her chemo for lung as a primary. Since your dad had a backache, have the doctors advised a bone scan to rule out any metastatis to bones ? Please bear in mind that I am not a doctor, I am just sharing my experiences. 

My heart goes out to you and I really wish that you have some good time with your dad.

Hi.  Thanks for your reply.  I greatly appreciate any advice or story from anyone.  It helps to gain a patients perspective and I think I have been able to gain more information from other patients and family members than I have from the doctors.  The doctor told me it had spread to his bones based on the PET scan but they have not done a bone scan.  I don't even know if they can be sure its in the bone via PET scan.  We meet with the doc in teh morning to discuss treatment plans. 

I too just found out about 3 months ago that my 54 year old father has stage IV adenocarcinoma with mets to the bones.  They also told us it is not operable and not curable but possibly treatable.  He too suffered for about a year with side pain and weight loss before they found it.  I can empathize with you.

 As of right now, we have just finished 4 chemo treatments and are going tomorrow to see what the latest CT results show.  They have never told me how much time they believe he has and I never ask, I had a doctor tell me that no doctor should ever tell a patient that because they start to believe it and they are not GOD. 

I do know that I make a list of all my questions and talk to the doctor about it.  I am currently wanting to find out about some new advanced lung cancer maintenance drugs that help prevent it from spreading once chemo is complete. I will let you know how it works for my dad.  I know it is hard right now, but keep the faith. 

It was devastating to our family when we found out and it has not gotten much better, but I have to believe that he will get better.  I wish there was more advice I could give you.  The best advice I was always given was make sure you get a second opinion.

On 8/4/2009 mistyd wrote:

I too just found out about 3 months ago that my 54 year old father has stage IV adenocarcinoma with mets to the bones.  They also told us it is not operable and not curable but possibly treatable.  He too suffered for about a year with side pain and weight loss before they found it.  I can empathize with you.

 As of right now, we have just finished 4 chemo treatments and are going tomorrow to see what the latest CT results show.  They have never told me how much time they believe he has and I never ask, I had a doctor tell me that no doctor should ever tell a patient that because they start to believe it and they are not GOD. 

I do know that I make a list of all my questions and talk to the doctor about it.  I am currently wanting to find out about some new advanced lung cancer maintenance drugs that help prevent it from spreading once chemo is complete. I will let you know how it works for my dad.  I know it is hard right now, but keep the faith. 

It was devastating to our family when we found out and it has not gotten much better, but I have to believe that he will get better.  I wish there was more advice I could give you.  The best advice I was always given was make sure you get a second opinion.

Hi.  I really appreciate you sharing your story and taking time to reply to my post.  I am so sorry to hear that you are experiencing the same situation.  We too have been told that surgery is not an option and we have also been told that there is no chance for remission. 

We did seek a second opinion because the first oncologist seemed as if he wanted dad to give up.  He told us that the average person with dads condition was expected to live less than a year which is why we sought a second opinion.  I refuse to believe that he is not treatable.  The oncologist that we chose feels that he can treat and possibly control the cancer with chemotherapy. 

Dads first treatment was this past Wednesday and so far he has had no adverse side effects outside of being tired.  He even claims that his pain has lessened already!  If you don’t mind…I am curious as to what medications they are using to treat your dad and if the CT scan showed progress.  Also, how often does your dad receive chemo?  Dad received a mix of Taxol & Carboplatin.  He will receive two more treatments over the next 6 weeks before they do a CT scan. 

I agree with you on not wanting to know what the prognosis is and I wish the first oncologist wouldn’t have given us that information.  The reality is that each person responds differently to treatment and even if they can’t cure the cancer they can control it which can significantly extend the expected survival.  I keep reminding myself that the doctor can not predict the future! 

I also keep a notebook of questions, medications, appointments etc.  There is just far too much to remember if I don’t keep it written down.  If you have time I would love to hear how your dad is doing and I will keep you posted on my dad as well. 

Dad had 4 chemo treatments of carboplatin and taxol.  After 2 treatments they did a CT and said that it had not grown and they did a brain scan to make sure it had not spread there and it hadn't.  Then after the last 2 treatments we had another CT and they said that they could not tell if the cancer in the lining of the right lund had shrunk or not because of the placement, but they found no new spots in his lung.  They did however feel that the cancer in his right rib had gotten a little worse so they suggested radiation for the pain.  As far as I understand, after his radiation he might go on the Alimta pill which is a chemo pill.  He said he didn't want to put dad on it right now because he wants him to build some strength up from the chemo treatments.  I just keep praying that it all works and helps hold it off.

I have not ruled out taking him to the Cancer Treatment Center in Chicago.  I hear that they are excellent there, but dads oncologist says that the treatment they are giving dad is standard across the board and since dad is so weak, he is not eligible for clinical trials.

 The dr. tries to explain to me that we are not trying to shrink it exactly but control it.  I am trying to be an optimist and believe that it will shrink.  I have read of that happening before.  I too keep a notebook and write everything down.  It is so hard to describe to other people what you are going through.  I have never had to face anything like this in my life and I am at a loss for words most of the time when people ask me how my dad is.  Please update me and tell me how your dad is and how you are.  It helps to have some people to relate to.

On 9/15/2009 tinaged wrote:

did you check into CyberKnife? This is a radiation treatment that sends about 1500 beams of radiation in all different directions to the tumor and not the healthy tissue around it, shrinking the tumor within days. You may need to have up to 3 treatments in one week. look it up on line. I hope it helps.

I have heard about this treatment.  We get dads first CT scan results since treatment next week.  That will really guide us to our next decision.  Hoping for the best!