girliegirlm
08-27-2003, 07:57 PM
Hey everyone...my mom was diagnosed with cancer in the beginning of july after a suspicious lymph node was removed. Since then it has been a big mess of test after test and no progress, she has had another sugery to remove more lymph nodes that became infected, and most recently had a hysterectomy bascially because they ran out of other things to do, and there was a suspicious mass on her uterous. most likely it is unrelated to her lymph node problems. They have determined that she has stage 4 cancer, and have been unable to treat her so far because they can not find the primary sight. i am posting this because i know how hard this has been on my family and how incredibly frustrating, if anyone else has stories of their own to share or advice to give that would be wonderful. i think this web sight is a great way to support others in these troubling sittuations.
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SamQKitty
09-01-2003, 11:38 PM
With cancer of unknown primary (also known as CUP or ACUP), usually the pathology will show similarities to one or two specific cancers, such as adenocarcinoma or small cell or squamous cell...something like that. The cancer cells may be poorly differentiated, but will still usually be similar to SOMETHING. Treatment is usually started with chemotherapies that will treat whatever cancers the cells are similar to. In my case, for example, the cells had some similarities to squamous cell and some similarities to small cell, so I was treated with Taxol and Carboplatin, both of which work on squamous and small cell cancer.
It's also important, since the only affected areas are the lymph nodes, to make sure that ALL tests for both hodgkins and non-hodgkins lymphoma are done. These include gram stains, electron microscopy, and other tests to absolutely rule out lymphoma.
Also, the prognosis varies a bit depending on which lymph nodes are affected, with lymph nodes near the groin area having the best prognosis.
I was diagnosed in April of 2001 with 3rd stage (CUP is never 1st stage, unfortunately). I went through chemo and radiation and, so far, have been cancer free since October of 2001. You may want to seek a second opinion. Depending on where you live, I might be able to give you a few leads to some oncology centers or doctors who specialize in CUP. Please post back with your location (state only is probably good enough.)
Also, you may want to do a google search for "cancer of unknown primary"...there's a lot of info out there. Be aware, however...if you're reading articles from prior to 1998, ignore most of what they say about prognosis (as I recall, there were some great explanations in the older articles, but the prognosis before then was really bad, and it's improved greatly since taxol came into widespread use).
Good luck, and keep me posted.
It's also important, since the only affected areas are the lymph nodes, to make sure that ALL tests for both hodgkins and non-hodgkins lymphoma are done. These include gram stains, electron microscopy, and other tests to absolutely rule out lymphoma.
Also, the prognosis varies a bit depending on which lymph nodes are affected, with lymph nodes near the groin area having the best prognosis.
I was diagnosed in April of 2001 with 3rd stage (CUP is never 1st stage, unfortunately). I went through chemo and radiation and, so far, have been cancer free since October of 2001. You may want to seek a second opinion. Depending on where you live, I might be able to give you a few leads to some oncology centers or doctors who specialize in CUP. Please post back with your location (state only is probably good enough.)
Also, you may want to do a google search for "cancer of unknown primary"...there's a lot of info out there. Be aware, however...if you're reading articles from prior to 1998, ignore most of what they say about prognosis (as I recall, there were some great explanations in the older articles, but the prognosis before then was really bad, and it's improved greatly since taxol came into widespread use).
Good luck, and keep me posted.
SamQKitty
09-17-2003, 10:36 PM
Bump