Advice re: Second Opinion

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JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 8/10/2005 10:15 AM (GMT -7)   
As many of you know, I have disagreed with my med and rad onc regarding my prognosis. They measure my tumor at 2.9 with 5 positive nodes, er+ HER2 -, having had 4 A/C and 12 Taxol, and 36 rad (not yet complete). Both have told me that if I have a recurrence, I will die -- med onc says she has only had 2 or 3 patients with recurrence that have lived over 5 years (she is head of dept at large med center), rad onc says with recurrence no need to do chemo early -- will affect my quality of life. Neither doctor suggests any kind of testing such as tumor markers.
 
My question is this -- What is your collective experience on this forum with recurrence, life expectancy, etc? I have looked on the internet since June 2 when I was first told this and I can find nothing regarding life expectancy after recurrence. These doctors have suggested I get a second opinion at M D Anderson in Houston. I do not want to waste my time nor the insurance company's money if what they say is pretty much the truth.
 
Need your experiences asap because I need to make up my mind soon. Won't go for consult until after last rads in Sept.
 
JUJU
 
 

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 8/10/2005 12:07 PM (GMT -7)   
Juju-
The fact that they are SOOO negative is enough that I would drop them in a second. A hot second. The recurrance is too hard to predict and shame on them for not considering soooo many variances. A recurrance can be local to the breast area, in which case technically it does not change your life expectancy. A recurrance can show up at just one little spot and be easily treated and remain cancer free for years and years. Or a recurrance can be very responsive to chemo or other meds, holding stable for a long time. Also, if, big IF you got a recurrance say in 3 years, who the heck can predict what new treatments may be available that radically change the face of breast cancer?

Cathi has been stage IV with bone mets for over 5 years (or almost 5, not sure the exact date). Connie lived with bone mets for about 12 years before it began to spread to soft tissue. Becky lived for about 6 years with mets before it took her. And Deb has been about 20 or more years with mets to the sternum that was treated successfully and she has been cancer free since then.

Stage IV is serious, but can be managed as a chronic illness and not a death sentence. And years from now, who knows what will be available.

SHAME on your doctors for talking to you that way and for assuming every case will be the same. It also depends on other variables, such as the tumor pathology and histology.

What do you hope to gain by a 2nd opinion at Anderson? Would you travel there for aftercare and followup? Sue did that, traveling from Florida. Are you looking for a doc to tell you if there is more you can do now? If it were me, I would first contact another onc in your local area. Just make it a regular consult/eval, and see what he/she has to say. if you like the surveillance plan, stick with it. Before going through the hassle of going to ANderson I would encourage you to think about what it is you are looking for there.....Usually people go for another opinion like that when they are at a crossroads in terms of chemo or other treatment options. If you are done, I am not sure it pays.

But in a hearbeat, I would drop those negative doctors, and find someone who will fight for you.

Lori


Jo-Ann
Veteran Member


Date Joined Jul 2003
Total Posts : 829
   Posted 8/10/2005 2:41 PM (GMT -7)   
Drop the doctors you have now like hot potatoes. The last thing you need, ever, are doctors who have given up on you before they even treat you.

There are some here whose oncs don't do tumor markers but I would be sure my new onc does them. They are critical tests to see the responses of your body to their protocols.

I had my radiation done by an extension of M D Anderson in Dallas. One of the nicest doctors trying to skirt around the issue that there were clearly 15 or so tumors growing around the mastectomy site. I would chose M D Anderson again if, God forbid, I ever needed radiation again.

Please, forget the current team and acquire a new team. You need every weapon available to fight this disease.

Hugs, Jo-Ann
A good friend will bail you out of jail...
but a true friend will be sitting
next to you saying,
"Dâmn... that was fun!".


wackygal
Veteran Member


Date Joined Jul 2003
Total Posts : 857
   Posted 8/10/2005 4:04 PM (GMT -7)   
Not only would I drop these doctors, but I'd print off Lori's and Jo-Ann's responses and give them to these people so that they can be enlightened on what REAL SURVIVOR's SAY. We are NOT statistics, we do NOT all react the same way to treatments, and we WILL fight. If I ever hear the words Stage IV you'd better believe I want a Dr. who will understand that. Telling you that she "has only had 2 or 3 patients with recurrence that have lived over 5 years" is ludicrous and shameful. Are there never any exceptions to her 'rule'? Aren't new meds being approved each year?
How sad for her to dash your hopes..........these are people that are supposed to be our advocates against this dreaded disease. too bad we have to fight them too.
Stefanie
Stage IIB 4.5 cm tumor, 5 positive nodes, er-/-pr-, her2neu 3+++ and surviving 4.5 years so far.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"It's been worth everything I've been through,
 To do what I do"

                       To Do What I Do   -Alan Jackson, 2004


MNlady13
Veteran Member


Date Joined Jul 2003
Total Posts : 2044
   Posted 8/10/2005 6:23 PM (GMT -7)   
All I can do is endorse everything Lori, Jo-Ann and Stef have told you. I agree completely! Good thing these doctors were not treating Lance Armstrong. Good luck, Lauri
"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 8/11/2005 8:18 AM (GMT -7)   
Deb, one of the long time members of this board has passed her twenty year mark as a survivor, she had a recurrence once during that 20 year time, I am not sure exactly when, maybe two years after original? Jo-Ann who posted above didn't mention her original doctors told her that she had nine months to live. She is almost nine years a survivor. She had a second mastectomy in 2000 with a second breast tumor. So you see that no one can really make a statement like your doctors have made, they can't see into the future. I agree you need to find a new oncologist, one who believes in the medicine they are practicing. You might as well take care of yourself and practice your own medicine as work with these people. Hugs and many prayers, MK

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