Linus Posted November 9, 2004 Share Posted November 9, 2004 Hello everyone, I am new here. I am so sorry to hear of everyone's stories but I am encouraged by all of the positiveness of this site. My question is: Has anyone had any experience with a primary tumor not being found? My Mother was diagnosed with stage 4 metastatic lung cancer this past summer. The only tumor showing is in her brain. She had surgery on that to remove that tumor. All tests such as PET, CAT and MRIs do not show any tumors in her lungs. But the cells from the tumor in her brain resemble lung cancer cells. Is this unusual? It just seems to me that the Dr.s should be able to find the tumors in her lungs if, indeed, there is one. Also, I wondered if anyone has experience with Temador for chemo for brain tumors? I have not seen a mention of that drug on this site yet. My mom just finished up her treatment with Temador and her Dr. thinks that Temador will prevent her brain tumor from regrowing. Thank you for any replies, Linus Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 10, 2004 Share Posted November 10, 2004 Hi, Linus, and welcome to the forum. Yep, it is unusual to have lung cancer and it not be in the lungs, but it does happen. My wife has Stage IV non-small cell lung cancer, with mets to various bones. No tumors showed up in the lungs. It was not until they got enough sample of the cancer from her leg bone that they determined it was lung cancer. Her main bone met was a large tumor on her upper spine at the C7-T1 area. The docs surmize that the main tumor in her left lung moved over to the spine area next to it. The first time a tumor in the lung was detected was last June when a small tumor appeared in her right lung. There are cases of cancer where the primary location is never determined, so at least they were able to tell in your mom's case that it is lung cancer. Best to you and your mom. Don Quote Link to comment Share on other sites More sharing options...
Wendy Posted November 10, 2004 Share Posted November 10, 2004 Sorry to hear about your mother. You did however come to the right place. There always seems to be someone who has experienced similiar circumstances to chat with. Best wishes to you and your family. Wendy Quote Link to comment Share on other sites More sharing options...
Nushka Posted November 10, 2004 Share Posted November 10, 2004 Linus, Can't help with the origin question but can welcome you to our family. There are many people who have gone through WBC and other brain procedures here. Many do great after. Glad you found us. Nina Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted November 11, 2004 Share Posted November 11, 2004 Linus, I have learned something new today from you and Don. I never knew this about Luci, Don. How facinating! Linus, I pray that the find your Mother's primary soon. God Bless, Cheryl Quote Link to comment Share on other sites More sharing options...
john Posted November 11, 2004 Share Posted November 11, 2004 Temodar is supposed to work pretty well for brain mets. It is also called Temozolomide. Temodar is the brand name. Iressa may help with brain mets. If your mother did not smoke it *might* even be more effective, since Iressa and I believe Tarceva work best in women non-smokers. It is good that there is only one met and surgery was done. I just read on a site that survival is double when there is one met and surgically removed vs multiple mets. If you do a search on CUP or "Cancer of Unknown Primary" It is fairly common. I think around 2-5% of cancers? One site said 72% of CUP with brain metastasis are lung tumors. Brain metastases from unknown primary neoplasms are most likely to be from a primary lung cancer (72%), followed in frequency by breast cancer, colon carcinoma, and melanoma. I guess they ruled out breast, colon and melanoma? The pathologists do Immunohistochemistry to determine keratin proteins (CK7, CK20) and other markers. This will give them clues to what the primary is but is not exact. Others are trying to use gene expression to determine the primary. http://professional.cancerconsultants.c ... x?id=29034 Quote Link to comment Share on other sites More sharing options...
karen335 Posted November 11, 2004 Share Posted November 11, 2004 John, Thank you! Please keep the info coming. It helps many of us with our decision making for treatment... God Bless and prayers, Karen Quote Link to comment Share on other sites More sharing options...
rwoodburn Posted November 13, 2004 Share Posted November 13, 2004 linus, Metastatic brain tumor without a known primary can occur. It is not clear if the primary is simply too small to be detected or if the primary spontaneously disappears. Anyway, the prognosis can be good in this situation. Was radiotherapy given after the surgery? Bob Quote Link to comment Share on other sites More sharing options...
Linus Posted November 13, 2004 Author Share Posted November 13, 2004 for all of the replies! Well, my Mom told me today that she thinks the brain tumors are back again. She is having the same symptoms as she did before the crainiotomy. (nausea and headaches) She did have WBR for palliative care and finished that 2 1/2 weeks ago. The Dr.s are saying that she is getting palliative care only. I believe this is due to the fact that she had lung cancer 10 years ago. There is a weird spot on her spine but as of yet noone is sure if it is cancer or a bulging disk or whateverelse. We go for a MRI on her head the day after Thanksgiving so I guess we will know more then. Thanks everyone! Linus Quote Link to comment Share on other sites More sharing options...
Linus Posted November 13, 2004 Author Share Posted November 13, 2004 Ha just wanted to say sorry for the double post and all of the typos! I am humbled and will forever more use the PREVIEW button! Linus Quote Link to comment Share on other sites More sharing options...
Ry Posted November 14, 2004 Share Posted November 14, 2004 I took off your double post Linus. I hope all goes well for your mom. I just noticed you are in Michigan....care to give us a hint where you are at or where your mom is getting treatment? Quote Link to comment Share on other sites More sharing options...
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