HER2 Support Group Forums - View Single Post - Routine marker testing and recurrence... worth it?

Gina · 10-22-2007, 04:04 PM

are you an oncologist??? LOL hee hee hee hee

Seriously, folks, if any of you out there are her-2 positive at any stage, at any point in the disease, do not heed Debbie's comments.

Regular checking the tumor markers is just plain common sense, regardless of status. Her-2 mediated disease is very aggressive, and very sneaky. In the 10 years I have lived with this horrible illness, I have seen many gals who went through the first primary stuff and may have remained NED even up to 4 or 5 years, but then, the disease returned with a vengence, and I watched many die--especially in the early years-- because by the time they found out, there was not a whole lot that could be done. That is why the myth of no prolonging of survival got started in the first place. And as for NO added quality of life....surely, Debbie, you are out to lunch. Have you not read a single post on this site???!!!!!!!

At least now in the last few years especially since the wider knowledge of Dr. Carney's serum her-2 test has become available, we finally have something like an early warning detection system (tumor markers, regular scans, even ordinary bloodwork provides early clues to return of the beast), and although I agree it is FAR from perfect and in some rare cases, not accurate enough, it is still far better than the NOTHING we had before.

Also, if you have her-2 already, you need to adopt this quote into your life: "IT IS BETTER TO KNOW EVEN A DARK AND TERRIBLE TRUTH than to not know it".

Sorry to be so upset over Debbie's comment, but her words could cause her-2 folks to die needlessly and that is NOT what we are about on this site. Our goal is to get the word out to give every person infected with her-2 every tool possible in her arsenal and to support them every way we can.

Sincerely,
Gina

10-22-2007, 04:04 PM	#59
Gina Senior Member Join Date: Oct 2005 Location: Alexandria, VA Posts: 197	Sorry, Debbie, But you are just COMPLETELY WRONG!! are you an oncologist??? LOL hee hee hee hee Seriously, folks, if any of you out there are her-2 positive at any stage, at any point in the disease, do not heed Debbie's comments. Regular checking the tumor markers is just plain common sense, regardless of status. Her-2 mediated disease is very aggressive, and very sneaky. In the 10 years I have lived with this horrible illness, I have seen many gals who went through the first primary stuff and may have remained NED even up to 4 or 5 years, but then, the disease returned with a vengence, and I watched many die--especially in the early years-- because by the time they found out, there was not a whole lot that could be done. That is why the myth of no prolonging of survival got started in the first place. And as for NO added quality of life....surely, Debbie, you are out to lunch. Have you not read a single post on this site???!!!!!!! At least now in the last few years especially since the wider knowledge of Dr. Carney's serum her-2 test has become available, we finally have something like an early warning detection system (tumor markers, regular scans, even ordinary bloodwork provides early clues to return of the beast), and although I agree it is FAR from perfect and in some rare cases, not accurate enough, it is still far better than the NOTHING we had before. Also, if you have her-2 already, you need to adopt this quote into your life: "IT IS BETTER TO KNOW EVEN A DARK AND TERRIBLE TRUTH than to not know it". Sorry to be so upset over Debbie's comment, but her words could cause her-2 folks to die needlessly and that is NOT what we are about on this site. Our goal is to get the word out to give every person infected with her-2 every tool possible in her arsenal and to support them every way we can. Sincerely, Gina