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Chelee · 07-07-2006, 03:08 PM

Jean, Great post. It is so true that no one thinks this will happen to them. I know I certainly didn't. I have no cancer in my family...I've had check ups...then you get this news and your world is turned upside down in seconds...never to be the same again.

Your SO RIGHT when you say we HAVE to be our own advocates. I learned that the hard way. You want so badly to just trust your onc doc...but I find you HAVE to do your own homework and research as all oncologist have different ideas about what should be done. It gets confusing at times! Its so time consuming just making all your doctors appts, lab work, scans, and you name it. Its like a FULL time job without the pay. Then you ADD all the time online to check out..and research what you have been told...and it doesn't leave one much time to relax and enjoy it seems. There is so much to learn, and know about this dreaded disease.

I can relate to you Jean about the FISH test. They WEREN'T going to do one on me either. I had to PUSH them SEVERAL times till it was done. So I know what you mean. The only difference with my oco is I was told several times they WOULD do the FISH...then I would wait a week or so..and ask them...only to find out it STILL HAD NOT been done. But I finally got them to do it. But one should NOT have to work that hard. The FISH IS important as you know.

Your onc at cornell that flat out told you NO is a bit much. Mine never really say no....they LEAD me on to believe they ARE going to do whatever it is I ask for or need. But then it NEVER happens till I continue to bring it up. So you must of been in SHOCK to hear flat out "No" about your FISH test. Wow!

Also like you...I had to fire my first onc doctor...and now I am on my second one. Which I liked alot at first...but now I am running into alot of problems with this one too. But I have heard others down at this place complaining about many of the same things I am. So its not just me.

Its awful to have to fire your doctor and start all over again. There are some really *awesome* doctors out there that really care. But then there are others that just seem to forget we are even human it seems? They need to STOP and ask themselves if this is how they would treat THEIR own wife, husband, mother, father, brother, sister, or their own childern. (for some of them...I think NOT!) Its those few bad doctors that make it harder on the REALLY GOOD ones...and there ARE plenty of them still...thank goodness. Its just finding them. If you find a good one...they usually AREN'T accepting new patients. (You can't win.)

Jean, I am sure sorry to hear all the nonsense you had to go through to get where your at now. How frustrating to say the least...but thankfully through all that you wound up in the right hands.

One positive thing came out of it.

I sure wish I could change again to a new doctor...but whats bad for me is in my HMO...you are IN what they call a GROUP. These doctors are all connected to one hospital where you would go if need be. You CANNOT go OUT of this group of doctors unless you pay out of pocket which for most of us is impossible and these doctors know it. (Your allowed one 2nd opinion...but you CAN'T use another doctor or hospital.) ARGH!

So even though I fired my first onc...I had to go to one in the same building...they are all friends/peers. We can only change ONCE a year to a new plan. And right now as far as I know its only Kasier and that would not work for us. Been there...done that. Never again.

So I feel stuck. I would like to change doctors again...but not sure it would change a thing at this point? I just don't know why this is happening to me? Its bad enough to have bc...and stage III...but to have doctors that won't give you the time of day is a nightmare. Our health care system needs a complete over haul in my opinion. The bigger the HMO's get...the more control they have over the doctors and the care we get. (I am glad to have insurance...but there has to be some major improvements for us patients.)

Good point you made about if you treated your clients the way some of our doctors treat us that you would be fired. Boy...you got that right. But most these doctors KNOW they are safe when in these HMO's...or so it seems to me.

Wow Jean, that one doctor you mentioned really DID have QUITE the EGO didn't he. With a ego like that...did you get a chance to see if his head fit through the doors he tried to walk through. lol (takes all kinds...huh.)

I haven't gotten to write Lillie yet..but I sure plan too. I am looking forward to it.

Thanks a million Jean.

Chelee

07-07-2006, 03:08 PM	#13
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Jean, Great post. It is so true that no one thinks this will happen to them. I know I certainly didn't. I have no cancer in my family...I've had check ups...then you get this news and your world is turned upside down in seconds...never to be the same again. Your SO RIGHT when you say we HAVE to be our own advocates. I learned that the hard way. You want so badly to just trust your onc doc...but I find you HAVE to do your own homework and research as all oncologist have different ideas about what should be done. It gets confusing at times! Its so time consuming just making all your doctors appts, lab work, scans, and you name it. Its like a FULL time job without the pay. Then you ADD all the time online to check out..and research what you have been told...and it doesn't leave one much time to relax and enjoy it seems. There is so much to learn, and know about this dreaded disease. I can relate to you Jean about the FISH test. They WEREN'T going to do one on me either. I had to PUSH them SEVERAL times till it was done. So I know what you mean. The only difference with my oco is I was told several times they WOULD do the FISH...then I would wait a week or so..and ask them...only to find out it STILL HAD NOT been done. But I finally got them to do it. But one should NOT have to work that hard. The FISH IS important as you know. Your onc at cornell that flat out told you NO is a bit much. Mine never really say no....they LEAD me on to believe they ARE going to do whatever it is I ask for or need. But then it NEVER happens till I continue to bring it up. So you must of been in SHOCK to hear flat out "No" about your FISH test. Wow! Also like you...I had to fire my first onc doctor...and now I am on my second one. Which I liked alot at first...but now I am running into alot of problems with this one too. But I have heard others down at this place complaining about many of the same things I am. So its not just me. Its awful to have to fire your doctor and start all over again. There are some really awesome doctors out there that really care. But then there are others that just seem to forget we are even human it seems? They need to STOP and ask themselves if this is how they would treat THEIR own wife, husband, mother, father, brother, sister, or their own childern. (for some of them...I think NOT!) Its those few bad doctors that make it harder on the REALLY GOOD ones...and there ARE plenty of them still...thank goodness. Its just finding them. If you find a good one...they usually AREN'T accepting new patients. (You can't win.) Jean, I am sure sorry to hear all the nonsense you had to go through to get where your at now. How frustrating to say the least...but thankfully through all that you wound up in the right hands. One positive thing came out of it. I sure wish I could change again to a new doctor...but whats bad for me is in my HMO...you are IN what they call a GROUP. These doctors are all connected to one hospital where you would go if need be. You CANNOT go OUT of this group of doctors unless you pay out of pocket which for most of us is impossible and these doctors know it. (Your allowed one 2nd opinion...but you CAN'T use another doctor or hospital.) ARGH! So even though I fired my first onc...I had to go to one in the same building...they are all friends/peers. We can only change ONCE a year to a new plan. And right now as far as I know its only Kasier and that would not work for us. Been there...done that. Never again. So I feel stuck. I would like to change doctors again...but not sure it would change a thing at this point? I just don't know why this is happening to me? Its bad enough to have bc...and stage III...but to have doctors that won't give you the time of day is a nightmare. Our health care system needs a complete over haul in my opinion. The bigger the HMO's get...the more control they have over the doctors and the care we get. (I am glad to have insurance...but there has to be some major improvements for us patients.) Good point you made about if you treated your clients the way some of our doctors treat us that you would be fired. Boy...you got that right. But most these doctors KNOW they are safe when in these HMO's...or so it seems to me. Wow Jean, that one doctor you mentioned really DID have QUITE the EGO didn't he. With a ego like that...did you get a chance to see if his head fit through the doors he tried to walk through. lol (takes all kinds...huh.) I haven't gotten to write Lillie yet..but I sure plan too. I am looking forward to it. Thanks a million Jean. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.