Anyone tested for basal cell?

Linda, I wonder if the test is widely available, since it is so new? I found this article, you may have read it, but it sounds like in Feb they were still working on getting a lab to actually run it.  There is nothing on my path report about it, so I'm sure they didn't do it on mine either. I have a feeling if it's this new, insurance may no cover it either, if you can get it, and if it's a genetic test it's bound to be very expensive. I have mixed feelings about knowing which it is, since if you had the basal type you might automatically assume you were going to have a pour outcome, which might not be true. Normally I'm the "I want to know everything" type of person, but when it's something they can't really do anything about, I'm just not sure. I guess I need to think about that some, and my brain isn't thinking too clearly these days. Well, don't know why I can't get it so you can just click it, that brain thing I guess lol

http://www.eurekalert.org/pub_releases/2009-02/wuso-ngt020909.php

I was tested for this with my first biopsy.  After receiving this news my doctor's made a prediction for me with that I had three to six months to live because my first mast showed 24/27 nodes positive.  Well that was almost four years ago...I'm still here but I have never stopped treatment.  My doctor felt this was value information.  With this info he got Avastin approved for me back in May 06 off label with Gemzar & Carbo. My insurance welling paid for this combo that was not approved yet.  This was very cutting edge for the time.

I guess you can think of it like the Brac test. This does not change your treatment either. I do have a basal tumor but I'm Brac negative. Go figure...

Flalady

Thanks ladies for check with me and praying for me. I really in need right now. I getting ready to due my 2nd tx with hyperthermia/Doxil.  This is another Phase I trial.  I doing ok except I have a large right arm that has cancer and lymphedema in it.  Just could not believe that bc could go into your arm? (this is through skin mets) I also already looking for my next treatment option.  Debonthelake...I was also convinced that I would be brac positive??? Could not believe it when they told me.

I will probably have to go too another clinic for by next tx.  My doctor's are telling me they don't want to do more chemo because it is just in the skin?? I have tumors in my neck you can see from the outside.  How could this be just in the skin? How about my arm.

Flalady

I'm sorry FlaLady, I'm sure it's very discouraging when you want to fight, and they don't want to help you. Are they saying  that they don't want to give chemo because it's "just in the skin", meaning that even though it's there, it's not like when it's in the liver, or the lungs, and effecting the function of those organs? I mean, can they treat the skin part symptomatcially, for pain or swelling,for a while, without you having to go thru more chemo right now? I didn't relize you even got cancer in your skin until I started reading on here, I mean not mets from breast or other cancers. I hope you can find the help you need

Linda, I was thinking, that since they keep tissue from our breast at the hospital where we have surgery for years, if they decide there is something they can do for the basal type, they can always go back and test it. I'm just afraid if someone told me, like they did FlaLady, that because the test was positive I only had a very short time, I might not have as much fight in me.

Tamara,

My bc spread to skin six months after chemo, surgery and rads.  They actual came through during the last week of rads.  We did get my skin into remission for two years.  I still had other small tumor's in my chest wall.  Believe it or not they are all gone and now I only have skin. You are right about them not wanting to build toxcity but I have very little toxic side effects to my 51 chemo treatments.  I only have low level neuropathy. My heart, lungs and liver are all find. (I do alot of supplements during my tx to keep me from getting toxic) The problem is that the skin starts breaking opening and looks and smells horrible. I do not want to live with large wholes all over me.  I've heard nightmare stories about the end of life for a ibc patient life. Infection is what usually takes you out.  I truly rather...to say it bluntly...die of chemo toxicity than of rotting skin.  IBC is very painful and the wounds can go very deep into the body and the smell will knock you down.  There is no real treatment for these areas.  I've tried rads for the 2nd time. Only helped a little.  Now I'm doing hyperthermia and after this?????  I hoping to find one of the new inhibitor trials locally because I can not fly with this arm.  My big concern is the disease in my neck?? I just need to find a doctor who will be proactive.  This trial I found myself and referred myself.

Flalady

Are you using supportive therapy, ie, targeted supplements?  Many of the "evidence based" supplements have been used with chemo, ie, coriolus, citrus pectin, avemar, and they add good points to the equation based on studies.

I wonder if there is a connection between not being brac and having a basal tumor?

I going to ask a FDA researcher I know.

Flalady

Nanalinda,

I will PM you the list and why I take them.

Flalady

I was never told that I was tested for basal cell, or of the importance of it.  I just happened to notice on my PET scan report that my tumor was described as a basal positive.  I wonder now if I should be tested for brca?  Do most insurances pay for this test?  I have two daughters and 3 granddaughters to think about.

Flalady:  Thank you for the list.  I plan to start some of them soon.  I want to do everything I can to fight this beast in me.  Thanks, Linda

I only have my original biopsy from 7/06 nothing more current.  I do have some family history:  paternal cousin, aunt and grandmother.  I think I will ask about it when I see my oncologist on Tuesday.  Do they have to have tissue from a biopsy?  For some reason I thought it was just a blood test.

No problem Flalady.  With everything you have been through.... no wonder.  I just hope they find something that works for you soon.  Linda

Linda:  Thank you for the prayers and hugs.  They are very much needed right now.

Flalady:  I hope it is only a swollen saliva gland.  It is very frightening to think there could be tumors around my trachea.  Thank you for your prayers and kind words.

Linda