Cancer of undetermined Origin

barb0305

Ok, so a week has past since the PET scan and the follow up visit with the Dr was this morning. Here is where we stand. The PET scan did not show anything but he does have some lesions on his back which are malignant. Doc says the cancer has spread to his back bone but they can't determine where the cancer originated.

I don't even know what to think at this point. It seems so strange that they can't find where it is coming from even though it has spread. Since the cancer has spread, that puts us at a lower survial rate. The doctor would not tell us what we were looking at timewise just that it has a 30%-40% rate.

Tom goes for a port tomorrow and will start chemo on Thursday.
The thought of starting Chemo so soon scares the living crap out of me. Are we doing the right thing by pouncing on this or should we consider a second opinion?

What can we expect from Chemo? Are there things we can do to make it go smoother?

I am sure others are going or have gone through this. Any info you might share would be most appreciated.
Melissa

3Mana

Unsure
Melissa,
My husbands cancer started with a back ache and we figured it was from all the yard work he did in summer. This was Aug. 2009. He finally went to the doctor in December and they had him go for a chest X-ray and that showed nothing. They ordered a CT scan which showed some fractures in his spine and told him to see an onocologist. He said to get a back brace & take Ibuprofen and come back in January. Then they did an MRI, and Brain Scan cause the fractures had changed. They determined that he had a tumor in his lung and said that was where it originated. The brain scan showed lesions there too. Surprise? Yah we were too. So he had 2 weeks of radiation to his back & brain. That showed good results. Then he started chemo. Had one treatment which consisted of 3 chemos, one of which was Avastin. He seemed good the week after, but then started coughing up blood. So we went back to the onocologist and they did a scan. Good news, the tumors were shrinking, but said no more "Avastin". So he had his next chemo in March and he died March 25th from a rare side effect from the Avastin. Have they checked your husband thoroughly to find out where it originated?? what are they doing for him?
I sure hope this didn't scare you, but make them find out.
Hope everything goes good. There are many on this site who help alot and maybe can give you more info. Take care!! Carole

barb0305

3Mana said:

Unsure
Melissa,
My husbands cancer started with a back ache and we figured it was from all the yard work he did in summer. This was Aug. 2009. He finally went to the doctor in December and they had him go for a chest X-ray and that showed nothing. They ordered a CT scan which showed some fractures in his spine and told him to see an onocologist. He said to get a back brace & take Ibuprofen and come back in January. Then they did an MRI, and Brain Scan cause the fractures had changed. They determined that he had a tumor in his lung and said that was where it originated. The brain scan showed lesions there too. Surprise? Yah we were too. So he had 2 weeks of radiation to his back & brain. That showed good results. Then he started chemo. Had one treatment which consisted of 3 chemos, one of which was Avastin. He seemed good the week after, but then started coughing up blood. So we went back to the onocologist and they did a scan. Good news, the tumors were shrinking, but said no more "Avastin". So he had his next chemo in March and he died March 25th from a rare side effect from the Avastin. Have they checked your husband thoroughly to find out where it originated?? what are they doing for him?
I sure hope this didn't scare you, but make them find out.
Hope everything goes good. There are many on this site who help alot and maybe can give you more info. Take care!! Carole

test after test
Carole,
Thanks for the information. Tom was admitted to the hospital after complaining for a couple months of being sick, losing weight, fevers, and sweats. I swear he went to his family doctor, 2 GI doctors, and the emergency room on numerous occasions. Finally, he called one of his doctors back and told them look, if you don't see me and do something, I am going to die. The doctor then ordered another round out test this time the blood work came back "funny" and they admitted him into the hospital.

For 2 weeks they ran a battery of test.....CT scans, Xrays, MRI, Upper and lower GI's, he has gulped down cameras (from both ends lol), and drank so much junk that he should glow in the dark. He has had biopsies of the prostate and urinary trac, stomach, duodenum. He has had a bone marrow aspirate, clot section and biopsy with a peripheral blood smear...and numerous other test. All test were to determine where the cancer orginated that has spread to the spine (metastatic lesions on the spine). Everything has came back normal.

So, after a long 2 weeks they finally said, we don't know but we are gonna send you home. The oncologist set him up with a PET Scan last week (because it is the mother of all cancer testing). Today we did the follow up for the PET scan and guess what....it didnt show anything! So, we are no closer today than when we first started.

The Doc today said he wanted to start Tom on Chemo asap. So, he goes tomorrow to have a port put in and starts Chemo on Thursday.

So, to answer your question, no they have no determined where it started and it is so frustrating. You said to make them find out....how do you do that?

It is hard for me to understand how something is so bad that the survial rate is 30%-40% but they cant even tell us where it started.

Am I missing something here?

Melissa

dayemdom

barb0305 said:

test after test
Carole,
Thanks for the information. Tom was admitted to the hospital after complaining for a couple months of being sick, losing weight, fevers, and sweats. I swear he went to his family doctor, 2 GI doctors, and the emergency room on numerous occasions. Finally, he called one of his doctors back and told them look, if you don't see me and do something, I am going to die. The doctor then ordered another round out test this time the blood work came back "funny" and they admitted him into the hospital.

For 2 weeks they ran a battery of test.....CT scans, Xrays, MRI, Upper and lower GI's, he has gulped down cameras (from both ends lol), and drank so much junk that he should glow in the dark. He has had biopsies of the prostate and urinary trac, stomach, duodenum. He has had a bone marrow aspirate, clot section and biopsy with a peripheral blood smear...and numerous other test. All test were to determine where the cancer orginated that has spread to the spine (metastatic lesions on the spine). Everything has came back normal.

So, after a long 2 weeks they finally said, we don't know but we are gonna send you home. The oncologist set him up with a PET Scan last week (because it is the mother of all cancer testing). Today we did the follow up for the PET scan and guess what....it didnt show anything! So, we are no closer today than when we first started.

The Doc today said he wanted to start Tom on Chemo asap. So, he goes tomorrow to have a port put in and starts Chemo on Thursday.

So, to answer your question, no they have no determined where it started and it is so frustrating. You said to make them find out....how do you do that?

It is hard for me to understand how something is so bad that the survial rate is 30%-40% but they cant even tell us where it started.

Am I missing something here?

Melissa

My mom was diagnosed today
My mom was diagnosed today with a cancer of unknown primary. She has had back pain for few months and was treated for a strained muscle until an MRI was ordered which revealed tumors on her spine. She had a surgery a month ago and the biopsy has revealed that she had an adnecarcinoma favoring breast cancer. Her oncologist was going to start chemotherapy two weeks ago and ordered a mammogram. At the that time we decided to seek a second opinion. The second oncologist ruled out the breast cancer diagnosis and ordered a PET scan and had the pathology look again a t the tissues. Today, she visited him with her PET scan which showed that the cancer has spread to different organs but still didn't show any primary tumor. She is going to start radiotherapy this Friday to relieve her back pain and she is expected to have chemotherapy after that. I have been googling this cancer with unknown primary since teh afternoon but I couldn't find too much information about it. And most of the things I read about it do not show that patients have high chances to survive it. The 30 t0 40 % survival rate you are talking about are very hopeful especially that most statistics that I saw online are about 10 % with a median survival rate of 4 to 11 months. Please tell me that this is wrong. I hope we can stay in touch.

barb0305

dayemdom said:

My mom was diagnosed today
My mom was diagnosed today with a cancer of unknown primary. She has had back pain for few months and was treated for a strained muscle until an MRI was ordered which revealed tumors on her spine. She had a surgery a month ago and the biopsy has revealed that she had an adnecarcinoma favoring breast cancer. Her oncologist was going to start chemotherapy two weeks ago and ordered a mammogram. At the that time we decided to seek a second opinion. The second oncologist ruled out the breast cancer diagnosis and ordered a PET scan and had the pathology look again a t the tissues. Today, she visited him with her PET scan which showed that the cancer has spread to different organs but still didn't show any primary tumor. She is going to start radiotherapy this Friday to relieve her back pain and she is expected to have chemotherapy after that. I have been googling this cancer with unknown primary since teh afternoon but I couldn't find too much information about it. And most of the things I read about it do not show that patients have high chances to survive it. The 30 t0 40 % survival rate you are talking about are very hopeful especially that most statistics that I saw online are about 10 % with a median survival rate of 4 to 11 months. Please tell me that this is wrong. I hope we can stay in touch.

Hey
Hey dayemdom,
Sounds like we are heading down the same long road. I, like you, have googled until my head is spinning and fingers are sore. There is not a lot of information available. The National Cancer Institute has the most information that I have found. Here's one of the links I looked over. http://www.cancer.gov/cancertopics/factsheet/Sites-Types/unknownprimary

The 30%-40% is what the doctor told us yesterday but you are correct. The majority of what I have read is more like the 4-11 months you mentioned. Scary isn't it!

Do you know what type of drugs they will start your Mom on? I have got to call and get that information today.

I feel like there is no where to turn here. Even on here there is not even a catagory for "CUP".

I would like to keep in touch and discuss our findings and treatments....anything helps!
Melissa

dayemdom

barb0305 said:

Hey
Hey dayemdom,
Sounds like we are heading down the same long road. I, like you, have googled until my head is spinning and fingers are sore. There is not a lot of information available. The National Cancer Institute has the most information that I have found. Here's one of the links I looked over. http://www.cancer.gov/cancertopics/factsheet/Sites-Types/unknownprimary

The 30%-40% is what the doctor told us yesterday but you are correct. The majority of what I have read is more like the 4-11 months you mentioned. Scary isn't it!

Do you know what type of drugs they will start your Mom on? I have got to call and get that information today.

I feel like there is no where to turn here. Even on here there is not even a catagory for "CUP".

I would like to keep in touch and discuss our findings and treatments....anything helps!
Melissa

Hi Melissa,
I feel sorry for
Hi Melissa,

I feel sorry for both of us that we have to go through this. I am trying to think positively about the situation. The statistics on the internet are just numbers that can't tell anything about a specific person. 10 % survival rate doesn't only mean that only one in 10 persons will survive this disease, but it can also mean that 3000 out of the 30,000 people diagnosed with this disease every year can still make it.Our beloved ones can be among them.
I believe that each case has to be taken individually.The key issue here is the chemotherapy. Is it going to work for the specific individual or not!. So as long as the chemo is working the chances are as high as they are for any other type of cancer.

My mom is going to start radiotherapy this Friday because she is in pain due to the tumors in her spine. After that she will start the chemo treatment. We still don't know what drugs they will give her. I will keep you posted as soon as we get the information from the doctor.
By the way she started feeling pain 5 months ago and she was treated for a pulled muscle. She could make it so far without any treatment and I am hoping that with the right treatment she will be with us for so many years. In my mom's case the cancer has spread into other organs as the PET showed but only to a limited extent. I am not sure how bad is this but again it all depends on the chemotherapy whether it is going to work or not.

Have a good day.

Have a good day.

barb0305

dayemdom said:

Hi Melissa,
I feel sorry for
Hi Melissa,

I feel sorry for both of us that we have to go through this. I am trying to think positively about the situation. The statistics on the internet are just numbers that can't tell anything about a specific person. 10 % survival rate doesn't only mean that only one in 10 persons will survive this disease, but it can also mean that 3000 out of the 30,000 people diagnosed with this disease every year can still make it.Our beloved ones can be among them.
I believe that each case has to be taken individually.The key issue here is the chemotherapy. Is it going to work for the specific individual or not!. So as long as the chemo is working the chances are as high as they are for any other type of cancer.

My mom is going to start radiotherapy this Friday because she is in pain due to the tumors in her spine. After that she will start the chemo treatment. We still don't know what drugs they will give her. I will keep you posted as soon as we get the information from the doctor.
By the way she started feeling pain 5 months ago and she was treated for a pulled muscle. She could make it so far without any treatment and I am hoping that with the right treatment she will be with us for so many years. In my mom's case the cancer has spread into other organs as the PET showed but only to a limited extent. I am not sure how bad is this but again it all depends on the chemotherapy whether it is going to work or not.

Have a good day.

Have a good day.

Positive
Hey,
I think you are right about thinking positive. In speaking to others, that is the most important thing.

Tom began his Chemo last Thursday. The chemo drugs they are using are Tuxotere and Gemzar. They are also giving Zometa which is a drug to help with the bone denisity.

So far the Chemo has not be to awful bad. He has only gotten sick one time but continues to feel nauseated. Nothing seems to help this so far.

Keep me posted on what is going on with your Mom and what drugs they are using. As you know there is very little information to research.

If you don't mind me asking, what part of the country are you located? We are in the Chattanooga Tn area.

Thanks
Melissa

dayemdom

barb0305 said:

Positive
Hey,
I think you are right about thinking positive. In speaking to others, that is the most important thing.

Tom began his Chemo last Thursday. The chemo drugs they are using are Tuxotere and Gemzar. They are also giving Zometa which is a drug to help with the bone denisity.

So far the Chemo has not be to awful bad. He has only gotten sick one time but continues to feel nauseated. Nothing seems to help this so far.

Keep me posted on what is going on with your Mom and what drugs they are using. As you know there is very little information to research.

If you don't mind me asking, what part of the country are you located? We are in the Chattanooga Tn area.

Thanks
Melissa

My mom started radiotherapy
My mom started radiotherapy today for two weeks. After that she should start the chemotherapy. We didn't ask the doctor yet what drugs he will be using but we know that he will not be using different one to see which one is working. He suspects that ovaries are the source but couldn't confirm that. He may be able to confirm the source based on her response to the different drugs he will be trying. My understanding about chemo is that it has side effects that vary from a person to another. Just put in mind that all the side effects will disappear after he finishes the treatment. How does his chemo schedule looks like?.

She is doing fine and she still goes to work everyday. If she hasn't been feeling pain in her back due to the tumors pressing on the nerves we wouldn't have believed that she has cancer.

My mom is out of the country but she is being treated at a hospital which is affiliated with an american university abroad. A professor from MD Anderson is visiting the hospital and she will be seeing him for a second opinion on Friday. We are waiting for his opinion to see whether it is necessary for her to move back to the states or not. She doesn't want to do that unless it is necessary because she doesn't want to lose her job.

Thank you

Dana

josever

dayemdom said:

My mom started radiotherapy
My mom started radiotherapy today for two weeks. After that she should start the chemotherapy. We didn't ask the doctor yet what drugs he will be using but we know that he will not be using different one to see which one is working. He suspects that ovaries are the source but couldn't confirm that. He may be able to confirm the source based on her response to the different drugs he will be trying. My understanding about chemo is that it has side effects that vary from a person to another. Just put in mind that all the side effects will disappear after he finishes the treatment. How does his chemo schedule looks like?.

She is doing fine and she still goes to work everyday. If she hasn't been feeling pain in her back due to the tumors pressing on the nerves we wouldn't have believed that she has cancer.

My mom is out of the country but she is being treated at a hospital which is affiliated with an american university abroad. A professor from MD Anderson is visiting the hospital and she will be seeing him for a second opinion on Friday. We are waiting for his opinion to see whether it is necessary for her to move back to the states or not. She doesn't want to do that unless it is necessary because she doesn't want to lose her job.

Thank you

Dana

Adenocarcinoma of unknown primary
Dear Friends,

After 12 months, my wife Laura continues the fight (metastatic adenocarcinoma of unknown primary). After 5 months of chemotherapy in 2010 (Taxol, Avastin), Laura resorted to Phase-1 clinical trials (MD Anderson Cancer Center, Houston, TX).

What keeps us up at night is that this disease has progressed despite standard therapy and that no standard therapy exists.

April 2011, two clinical trials failed, and Laura may not qualify for other trials due to liver condition (further growth of multiple tumors are blocking bile ducts, resulting in high levels of Bilirubin).

To prevent further tumor growth, next step is infusion of Irinotecan directly to her liver, followed by general chemotherapy (Erbitux + Avastin). Oncologist estimates that approx 1 in 3 treatments prevented further growth but not necessarily shrink the tumors. Oncologist also mention - if this treatment is not successful, there may be no further treatment options at MD Anderson.

We can not accept any "no-options" decisions. I am reaching for advice.
Thank you for listening- Jose