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Met questions


Tami

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I have a couple of questions about mets. When do most people generally find them? Does the doctor just find them or do you generally have an idea that something is up? Is it during your treatment for the Primary cancer or do they just show up months or years after the primary cancer has been treated or removed. Has anyone here had surgery where primary cancer has been removed but then discovered a met(s) long after that surgery with no other primary cancer (like additional disease in the same area where the primary cancer was initially?)

Does this make sense? Thanks to all of you for all your help.

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Tami,

Thanks for asking the question, I was wondering the same thing. It has never been mentioned by my onc. What tests are needed and what if we've had these tests in the last 6 months and nothing has shown up. How often are we suppost to have these tests to make sure all is ok.

Thanks everyone for your responses.....

God Bless and praying for a "Cure" for all of us

Karen

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The mets to my lymphatic system showed up, on a CT Scan, 18 months after my original surgery. There is no evidence of active disease in my lungs. I was restaged from Stage I to Stage IV, as the mets had spread throughout my lymphatic system. On september 2 I had my last cycle of 6 cycles of Carbo/Taxol. At the present time, the mets is still visble in my lymph nodes, but is stable, in other words there is no new growth.

As I am still in a clinical trial I will be followed every 3 weeks, with a CT Scan every 6 weeks. This will continue as long as I am in the clinical trial.

I was totally unaware of any mets, as I had no pain or discomfort. I did not realize that I mets in the neck lymph nodes until the PET scan. Once I knew they were there I could feel the enlarged nodes in my neck. Those nodes are gone, as the chemo wiped that cancer out of the neck and groin. The big thing now is to watch the nodes in my chest to make sure they don't grow, or other nodes become affected by the mets.

My understanding, with bone mets, there is usually pain in the area of the mets. Some people have told me the pain comes on suddenly and there is bad pain at the met site. Someone who has had bone mets will be able to answer that question better than I.

The reason mets occurs in some people and not in others is unknown. This again is an area of cancer where there is no clear cut explanation as why mets occurs. If it was known, then doctors would be able to 100% of the time, prevent metastatic disease from occurring.

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The only mets that we are now sure my Buddy had was to the brain. He was having problems with one of his legs like almost falling several times. also with his arm not being able to hold onto things. Brain scan done and showed three mets to the brain. He had whole head radiation and is now NED.

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Thank You Dave and Don,

This helps alot. I had a PET done on June 29th, 2003 and it did not show any mets, only activity in the right lung. Bone scan in February showed all was ok. Can mets form in a short period of time ? This is what is frightening, you have a scan or test and a week or a month later you've developed mets. Do blood tests tell you if you have mets? Can your Onc. tell if you have mets by examining you?

I really do appreciate your responses.

Karen

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Karen,

I just posted to you but then i saw your other questions and thought i would try and answer what I know from my Buddy's horrible experience recently.

You know your body, you know what has occurred from the time of the first diagnoses to now. With Buddy, he is to have a PET this Thurs but I sure will be looking at the results. For as I understand, the PET can light up but doesn't always mean mets. I am thinking it will light up in his right middle lobe where it could have been pneumonia or his upper right lobe where it could be radiation fibroses (not sure of the spelling and to lazy to find the report right now). If they do light up, before he will have any more treatments, i will insist they do another biopsy because that is the only sure way of knowing. I won't take any guesses or maybe's or the word "suspects" at this point. SOOOO what i am saying is that if you think you are having a problem, read all your medical records and then make sure you agree with the onc. If not ask for more tests to prove their findings, not just scan reports if you are not comfortable with the reports.

Wishing you the best.

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My dad's mets came 9-10 months after his initial diagnosis. His primary cancer was completely gone. Ironically, he no longer had cancer in his lung- he developed a met to his shoulder, one to his brain, and then a complete spread of the cancer into his skeletal system all in about a four week time-frame.

Listen to the others, if you are the teenest bit worried about mets, GET THOSE TESTS. Scream until your doctor orders one just for your own sanity and peace of mind. Being proactive will save your life. There's a member here whose father was a 20 year survivor of Lung Cancer before it ever progressed. There is not an average on when or IF someone will develop mets or not. IT MIGHT NOT HAPPEN>

Don't make yourself crazy wondering...a test will ease your mind.

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Norme,

Thank you for replying. I feel really good even though I had pnuemonia 3 weeks ago. Was in hospital 4 days, on antibiotics til today. Was in the right lung where tumor is located. Very last rib on the right side is sore, no pain, feels like a pulled muscle. Maybe it's from pnuemonia. Have not had any surgery, so lung still there. Has anyone expeienced this? Thanks for all of your responses.

Norme, praying for your Buddy every day. We are survivors and this disease is losing it's strength. A cure is in the very near future and we will all benefit.

God Bless and praying for a "Cure" for all of us......

Karen

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I don't think you or the onc can tell if you have mets without a scan. As was said, your body may tell you something is wrong in a specific area, and prompt you to check -- like pain or weakness. Lucie's primary met was discovered because she had pain, and two others signaled pain. Can the mets grow rapidly? -- I think so -- at least, fast enough to elude one scan and show up on the next -- that is why we are all anxious about scans. Lucie developed a met on her sacrum DURING chemo treatments, that was discovered through pain first, right after the total treatment was over Don

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