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Unknown primary

kim mom of three
Posts: 26
Joined: Apr 2011

Anyone out there with unknown primary cancer....I was diagnosed with mets to liver unknown primary. I had a series of testing, two surgeries and still inconclusive. I would really like to hear from someone in the same situation

insert clever name here's picture
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Posts: 8
Joined: Mar 2011

i allso dont know if my liver cancer is primary or not, had some test done and found nothing. but im heading to the cancer center this month so im sure they will run diff test and figure it out, i will let ya know when i know,

kim mom of three
Posts: 26
Joined: Apr 2011

I was diagnosed with breast cancer in 2001. I had a lumpectomy, chemo and radiation. Then in Nov. 2010 I had my gall bladder out and the surgeon noticed a spot on my liver. He did a biopsy and it came back positive for cancer. I was told it was breast cancer mets to liver. My oncologist wasnt buying that so he had another pathologist review the slides and he was inconclusive. Then I had a battery of test, PET scan,CT scan, MRI and a lot of blood test. After all that I was a candidate for liver resection. In Jan 2011 I had segment 5 of my liver removed. Of course it was sent to the pathologist and came back inconclusive. So then the slides were sent to Mayo clinic and they said that they wouldn't rule out breast cancer mets to liver but highly unlikely. They feel its possible bile duct cancer. So final diagnosis is unknown primary mets to liver. I will have CT scans every 3months along with blood test every 6 weeks. I should feel good about that but, I'm not. I'm scared, confused and still in pain from resection. Any suggestions on how to move forward and shake some of my anxietys and fears. Please Help!

Posts: 100
Joined: Mar 2011

Hi kim mom of three,

Sorry to hear about your diagnosis and the ongoing confusion regarding the origin of your cancer. Last June I was diagnosed with stage IV cholangiocarcinoma with spinal and liver mets. As terrible as the news was, it was my wake up call to start taking care of myself, not only for me but for the sake of my two young boys. My symptoms before my diagnosis mimicked those of stress, so I kept telling myself once the stress was gone I would be on the road to recovery. Wrong! Since the first week of July I have been taking a gemzar/cisplatin combination for the bile duct and liver cancers, and have had two TACEs one in December and one in February of this year) all in the hopes of stabilizing and/or shrinking my lesions. So far we've been successful. The lesions in my liver have neither grown nor multiplied, and two have shrunk slighty. Both of my oncologists are pleased with the results which is great news for me. I'm very fortunate that I experience minimal side effects for both the systemic chemo treatments and the embolizations. This is coming from a person whose sister was told by an emergency room doctor last Summer to take me home and call hospice because I wasn't going to make it through that season. And here I still am, feeling better than I did before my diagnosis. Don't ever give up the fight! Your designation as kim mom of three speaks volumes as to why you need to pick yourself up and move forward. I can't imagine what it's like to have to fight cancer again, but don't give up hope. You beat it once, you can and will beat it again! I do have days where I just want to curl up in a ball and give up, and I do just that but only for a little while. My attitude is F-cancer, I won't let it get me and I certainly won't let it take me away from my boys. So far the only outward symptoms I have of the cancer are the chemo-brain and the fatigue from the systemic chemo (usually doesn't last more than a couple of days and has only been debilitating one time when I had a dose right after recovering from a respiratory infection). Oh yea, and I lost my hair due to one of the chemo drugs given to me for the TACEs, but that's no big deal, you can't have a bad hair day when you ain't got none! The TACEs do cause a fever of about 102 and pain for about 48 hours, but both are easily controlled by Celebrex and pain meds. Since you've had a resection, it sounds like you have the liver lesions under control, and that the CT scans and blood tests are to ensure that if any other problems occur your team will be able to address them in a timely manner. I understand your anxiety and fears as your team seems unable to give you a firm diagnosis of the origin of your liver lesion, and that every three months you'll be holding your breath while you wait for your test results. I'm facing that also as both of my oncologists want me to take a break from the TACEs and the systemic chemo treatments. I'll go back for a CT scan at the end of May to determine if more embolizations are warranted (after the first two, the oncologist wanted to give my healthy liver tissue a break and also didn't want me to suffer complications from being dosed with cisplatin for both the embolizations and the systemic chemo), and will have scans and blood tests every three months should I decide to take a long-term vacation from systemic chemo. My doctors are both vague regarding whether or not either treatment is actually stabilizing the lesions. The only way to tell is to go on a vacation and see if the lesions grow or multiply (geez, what a choice!) But I remain confident that a with lot of positive thought, good nutrition, and prayer I will be a long-term survivor. Cancer has given me a whole new perspective on life and living and what's important to me. No matter what negative things happen during any given day, every time I wake up and feel good is great! And I now look forward to adding years to my age and wrinkles to my face and sags to my body, because that will only mean that I've kept this demon at bay! Take care, you will be in my thoughts and prayers!

LeeandShirley's picture
Posts: 122
Joined: Apr 2011

My husband was told by his surgeon that he had primary liver cancer when he had his surgery. When a CAT scan showed in April 2011 that he had multiple tumors in his liver and swollen lymph nodes throughout his abdomen, he was referred to an oncologist. His oncologist now lists his cancer as liver cancer, primary unknown. They did all the tests they could and couldn't find a primary site. Sometimes the primary site has only a few cells that cannot be detected, but a few did seed elsewhere. Like the liver. They continue to treat it as liver cancer, because there is no other cancer site detected. Not really sure why his oncologist lists it that way. It may be to get the treatment. Insurance has very specific requirements to pay for treatment, and diagnosis is one.

offutt9's picture
Posts: 88
Joined: Jan 2004

Hi! I have a rare cancer called angiosarcoma of the liver ! Some of the doctors say its primary but others say they don't know where it came from...I know it only in my liver... Please look at my page Miracle in work God has a plan me.

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