Adenocarcinoma of unknown primary

mm_82
mm_82 Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
My mom had been having trouble breathing for quite some time before it was finally determined that she had a pericardial effusion. She has COPD and always seems to end up with bronchitis or pneumonia. She had multiple chest x-rays done and she was always given medicine for various problems. She was referred to a cardiologist because she felt like her heart was pounding out of her chest and he ended up doing an EKG and said that her heart wasn't resting properly and then set her up for a stress test. They thought they found something so they set her up to have a heart cath shortly thereafter. Nothing was ever found and she still felt horrible with heart palpitations and feeling extremely short of breath. She finally went back to her primary physician and he sent her to the local ER to have some tests done to rule out other problems. The attending physician in the ER did a chest x-ray and told her he found the fluid around her hear and they were going to drain it and figure out what caused it. Once it was drained we waited almost 2 weeks to get the results. It turns out the "fluid" in the pericardium was actually blood and that it had cancer cells in it. So after meeting with an oncologist, having tons of blood work, and a barrage of testing... they still didn't really know where it was coming from. The PET scan she had shows cancer around the heart and in several lymph nodes in the chest, but nothing really jumps out. The tumor markers were slightly high for ovarian cancer and fairly high for breast cancer, but the MRI and PET scan came back clean in those areas. So we are still at the diagnosis of adenocarcinoma of unknown primary. She started her first round of chemo almost 2 weeks ago hoping they can stop the growth of the cancer around her heart. It seems that since they don't know exactly where the primary origin is then they can't really give a prognosis... and that sure is frustrating. Anyone else have anything remotely like this?

Comments

  • KWeiser
    KWeiser Member Posts: 16
    #2
    adenocarcinoma of unknown primary
    I am almost 32 years old and was diagnosed in October 2009. I have had back pain for years but started having leg pain so surgery was done, nothing like a fusion or anything, just shaving of the bulging discs. The pain in my leg did not go away and was getting worse. Further test showed a tumor on my right hip. Immediately I was sent to the oncologist and soon found that cancer was in the lining of my lungs, kidney, and liver. I had a rod put in my right leg and was on crutches from the minute they saw the tumor until about 2 months after the surgery. I had radiation to that leg. I then had chemo, Carboplatin and Taxol. I had 8 or 10 treatments but the chemo was only keeping the tumors stable - they were either shrinking or growing by .1 or .2 centimeters. I then had a consult for a trial, but my oncologist at home and the trial doctors suggested I try another kind of chemo first. In order to get a different chemo my diagnosis had to be changed. I was told I technically have adenocarcinoma of unknown primary but my diagnosis on paper is now lung cancer so that I can have Alimta for my chemo. Recently the cancer has spread to my other hip and my lower back. I had more radiation and have had 2 treatments with the new chemo. I have had very few symptoms from either of the chemos, so I consider my self very blessed. Is your mom able to get other opinions or go to any of the well known cancer centers across the United States? How is she handling the diagnosis? This is the first "chat" or whatever that I have ever done; just joined a moment ago. If you would like to chat through email my address is kmcantrell55@gmail.com
    Also, Caring Bridge is a great website to get your mom involved in. The support has been fantastic. You can check my site out at caringbridge.org/visit/kellycantrellweiser
  • Christine Tooker
    Christine Tooker Member Posts: 4
    #3
    Adenocarcinoma of Unknow Origin- just diagnosed Oct 2010
    I was diagnosed in Oct 2010 with Adenocarcinoma of Unknown Origin. I had a lymph noid removed from armpit and was biopsied. Had Cat Scan of Chest that could not detect even 1 single tumor. Did a PET Scan and that also detetected no tumors, but it did show all the lymph noids in the right side from lower neck down past lungs and both sides of the sternum. Had a MRI of Brain and it showed everything normal. Yet the prognosis is grim when there isn't a tumor to remove, radiate and then do chemo. Instead we are planning 6 treatments of Chemo (Alimta, Avastan, Carboplatin) every 3 weeks. Just had the second round today (Dec 1st) Doing pretty well so far but prognosis is not good. Stage 4, metastisis. We are planning on doing 3rd round then ordering new scans and checking progress. Then I decide if I want to try something else. It is so time consuming and exhausting trying to reseach and get answers. Any info you can provide is welcome. I am seriously looking at the Burzynski Clinic in Houston, Texas. (google it) please feel free to contact me my email is

    christinetooker@hotmail.com
  • Christine Tooker
    Christine Tooker Member Posts: 4
    #4
    KWeiser said:

    adenocarcinoma of unknown primary
    I am almost 32 years old and was diagnosed in October 2009. I have had back pain for years but started having leg pain so surgery was done, nothing like a fusion or anything, just shaving of the bulging discs. The pain in my leg did not go away and was getting worse. Further test showed a tumor on my right hip. Immediately I was sent to the oncologist and soon found that cancer was in the lining of my lungs, kidney, and liver. I had a rod put in my right leg and was on crutches from the minute they saw the tumor until about 2 months after the surgery. I had radiation to that leg. I then had chemo, Carboplatin and Taxol. I had 8 or 10 treatments but the chemo was only keeping the tumors stable - they were either shrinking or growing by .1 or .2 centimeters. I then had a consult for a trial, but my oncologist at home and the trial doctors suggested I try another kind of chemo first. In order to get a different chemo my diagnosis had to be changed. I was told I technically have adenocarcinoma of unknown primary but my diagnosis on paper is now lung cancer so that I can have Alimta for my chemo. Recently the cancer has spread to my other hip and my lower back. I had more radiation and have had 2 treatments with the new chemo. I have had very few symptoms from either of the chemos, so I consider my self very blessed. Is your mom able to get other opinions or go to any of the well known cancer centers across the United States? How is she handling the diagnosis? This is the first "chat" or whatever that I have ever done; just joined a moment ago. If you would like to chat through email my address is kmcantrell55@gmail.com
    Also, Caring Bridge is a great website to get your mom involved in. The support has been fantastic. You can check my site out at caringbridge.org/visit/kellycantrellweiser

    Adenocarcinoma of Unknow Origin- just diagnosed Oct 2010
    Would love to talk to you. You can contact me at christinetooker@hotmail.com

    Thank you, Christine
  • Christine Tooker
    Christine Tooker Member Posts: 4
    #5
    KWeiser said:

    adenocarcinoma of unknown primary
    I am almost 32 years old and was diagnosed in October 2009. I have had back pain for years but started having leg pain so surgery was done, nothing like a fusion or anything, just shaving of the bulging discs. The pain in my leg did not go away and was getting worse. Further test showed a tumor on my right hip. Immediately I was sent to the oncologist and soon found that cancer was in the lining of my lungs, kidney, and liver. I had a rod put in my right leg and was on crutches from the minute they saw the tumor until about 2 months after the surgery. I had radiation to that leg. I then had chemo, Carboplatin and Taxol. I had 8 or 10 treatments but the chemo was only keeping the tumors stable - they were either shrinking or growing by .1 or .2 centimeters. I then had a consult for a trial, but my oncologist at home and the trial doctors suggested I try another kind of chemo first. In order to get a different chemo my diagnosis had to be changed. I was told I technically have adenocarcinoma of unknown primary but my diagnosis on paper is now lung cancer so that I can have Alimta for my chemo. Recently the cancer has spread to my other hip and my lower back. I had more radiation and have had 2 treatments with the new chemo. I have had very few symptoms from either of the chemos, so I consider my self very blessed. Is your mom able to get other opinions or go to any of the well known cancer centers across the United States? How is she handling the diagnosis? This is the first "chat" or whatever that I have ever done; just joined a moment ago. If you would like to chat through email my address is kmcantrell55@gmail.com
    Also, Caring Bridge is a great website to get your mom involved in. The support has been fantastic. You can check my site out at caringbridge.org/visit/kellycantrellweiser

    Adenocarcinoma of Unknow Origin- just diagnosed Oct 2010
    Hi, I would love to talk to you. You can contact me at christinetooker@hotmail.com or 616-846-5576

    Thank you,
    Christine Tooker
  • amulreaney
    amulreaney Member Posts: 1
    #6
    adeno
    Hello - It's been a while since you first posted this, but I came across it and my mom is now going through a similar situation. She first had a tumor protruding out of her chest, which is how she discovered she had cancer. They have diagnosed her with an adenocarcinoma, unknown origin, poorly differentiated. She has gone through countless tests, had a hysterectomy(at one point they thought she had ovarian cancer), chest surgeries, chemotherapy and radiation. We live close to Johns Hopkins, where she had her chest surgery, but still they cannot find a primary site. THey say her tumors were close to her heart(she has approx. 5 tumors in the chest wall). I am not sure exactly what chemotherapies she has been on, but she is going through her thrird time on chemo, she is on the 4th round of her 3rd treatment. (meaning we have been dealing with this for a long time, almost 3 years) She has lost her hair for the second time now, but has a great wig!

    I'm curious what has been going on with your mom and if they were ever able to diagnose and/or cure.

    -Michelle
  • Denison
    Denison Member Posts: 1
    #7
    amulreaney said:

    adeno
    Hello - It's been a while since you first posted this, but I came across it and my mom is now going through a similar situation. She first had a tumor protruding out of her chest, which is how she discovered she had cancer. They have diagnosed her with an adenocarcinoma, unknown origin, poorly differentiated. She has gone through countless tests, had a hysterectomy(at one point they thought she had ovarian cancer), chest surgeries, chemotherapy and radiation. We live close to Johns Hopkins, where she had her chest surgery, but still they cannot find a primary site. THey say her tumors were close to her heart(she has approx. 5 tumors in the chest wall). I am not sure exactly what chemotherapies she has been on, but she is going through her thrird time on chemo, she is on the 4th round of her 3rd treatment. (meaning we have been dealing with this for a long time, almost 3 years) She has lost her hair for the second time now, but has a great wig!

    I'm curious what has been going on with your mom and if they were ever able to diagnose and/or cure.

    -Michelle

    Chemo
    My wife is going threw almost the same situation as you mother she has several tumors in her chest and abdomen and I would really appriciate it if you would contact me Michelle my email is cjoe78@yahoo.com please email me at your earliest convience. thank you, chris

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