HER2 Support Group Forums - View Single Post

Chelee · 07-05-2006, 09:56 PM

Hi Jean, I am glad to hear you were really going with your gut and using your head. As we all know that have had this bc DX...its very overwhelming and scary when you first hear the news. Its so hard to wrap your head around it. One day all is well with the world so to speak...then BAM...your world is turned upside down.

In your case look how many different opinions you got. That makes things even more difficult...you don't know what to think or who to believe. Its a good thing you kept going and got to see Dr. Slamon.

For three onc to tell you that you did NOT need chemo...that would of concerned me too.

I sure wish I would of knew about that TOPO II test. I would of loved to of been tested before I started any chemo to see which would of worked better with me.

You mentioned that you thought there was a 3% difference in the AC verses the TCH chemo? You might be right...I thought it was 11%...but knowing me I am WRONG. LOL I will do a search here and see if I can find it. I know its been brought up here before. Alot depends on how someone respones to a certain chemo...what works for one doesn't always work for someone else. So hopefully the TCH was a good choice for me. I know I DO feel better about less chance of heart toxicity with the TCH.

I was a little concerned having landed in the hospital the first month...and MISSING an entire month of Taxo, Carb and herceptin. That concerned me...what was the cancer cells doing for that entire month?

I was looking up my/our rights in bc tx. And it says "Your doctor MUST tell you about your medical condition & about what different treatments can do for you. Many txs have side affects. Your doctor MUST offer you information about serious problems that medical treatment is likely to cause you.

It goes on to say, Often more than one treatment might help you -- and people have different ideas about which is best. Your doctors can tell you which txs are available to you, but your doctor CAN'T choose for you. That CHOICE depends on what is important to you.

I WISH I knew all this when I started because when it says a doctor MUST tell you about your medical condition, side affects, and the different treatments...and that its MY CHOICE....not one of these were done with me! Nothing was discussed. I do mean...NOTHING! I was told the cancer board met...discussed my case...and I was handed a paper telling me what drugs I WOULD be doing for chemo. (Period.) I had NO SAY in any of it. Why do they make these RIGHTS if they don't have to follow them?

My onc did NOT tell me what treatments were available to me. They say he CAN'T choose for me. Well he DID. In fact I asked if I had any say in it...he flat out told ME no I don't. (Nicely mind you...its not like he was nasty...he just told me the way things would go if I choose to do chemo.) Now six months later I find out I HAD all these RIGHTS that not one doctor explained to me. Its a bit frustrating!

Like with you Jean, it sure sounds like most the doctors took the time to explain things to you...even if you knew in your gut it wasn't what was right for you. Then you went to Dr. Slamon and he took the time to explain and go over your entire treatment plan. Also when I read CPA's reply...he said their doctor sat down and had a LONG lengthy discussion with them. Thats what a GOOD oncologist SHOULD do...and now I find out its YOUR right that they do this. So you all have fantastic onc doctors.

I can't wait till its the standard of care where they HAVE to test a womens tumor before starting treatment. That is going to be so beneficial in my opinion. I feel that is whats really necessary here. I sure they will soon enough. I can't wait...it will save so many women going through additional chemo's and such.

You are right about a positive attitude Jean...and even though I have been frustrated with my tx plan...believe it or not I have been feeling pretty positive about the whole thing. I REALLY have.

Thanks so much for your post Jean. Here's wishing you well and sending you warm and healing thoughts.

Chelee

07-05-2006, 09:56 PM	#9
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Hi Jean, I am glad to hear you were really going with your gut and using your head. As we all know that have had this bc DX...its very overwhelming and scary when you first hear the news. Its so hard to wrap your head around it. One day all is well with the world so to speak...then BAM...your world is turned upside down. In your case look how many different opinions you got. That makes things even more difficult...you don't know what to think or who to believe. Its a good thing you kept going and got to see Dr. Slamon. For three onc to tell you that you did NOT need chemo...that would of concerned me too. I sure wish I would of knew about that TOPO II test. I would of loved to of been tested before I started any chemo to see which would of worked better with me. You mentioned that you thought there was a 3% difference in the AC verses the TCH chemo? You might be right...I thought it was 11%...but knowing me I am WRONG. LOL I will do a search here and see if I can find it. I know its been brought up here before. Alot depends on how someone respones to a certain chemo...what works for one doesn't always work for someone else. So hopefully the TCH was a good choice for me. I know I DO feel better about less chance of heart toxicity with the TCH. I was a little concerned having landed in the hospital the first month...and MISSING an entire month of Taxo, Carb and herceptin. That concerned me...what was the cancer cells doing for that entire month? I was looking up my/our rights in bc tx. And it says "Your doctor MUST tell you about your medical condition & about what different treatments can do for you. Many txs have side affects. Your doctor MUST offer you information about serious problems that medical treatment is likely to cause you. It goes on to say, Often more than one treatment might help you -- and people have different ideas about which is best. Your doctors can tell you which txs are available to you, but your doctor CAN'T choose for you. That CHOICE depends on what is important to you. I WISH I knew all this when I started because when it says a doctor MUST tell you about your medical condition, side affects, and the different treatments...and that its MY CHOICE....not one of these were done with me! Nothing was discussed. I do mean...NOTHING! I was told the cancer board met...discussed my case...and I was handed a paper telling me what drugs I WOULD be doing for chemo. (Period.) I had NO SAY in any of it. Why do they make these RIGHTS if they don't have to follow them? My onc did NOT tell me what treatments were available to me. They say he CAN'T choose for me. Well he DID. In fact I asked if I had any say in it...he flat out told ME no I don't. (Nicely mind you...its not like he was nasty...he just told me the way things would go if I choose to do chemo.) Now six months later I find out I HAD all these RIGHTS that not one doctor explained to me. Its a bit frustrating! Like with you Jean, it sure sounds like most the doctors took the time to explain things to you...even if you knew in your gut it wasn't what was right for you. Then you went to Dr. Slamon and he took the time to explain and go over your entire treatment plan. Also when I read CPA's reply...he said their doctor sat down and had a LONG lengthy discussion with them. Thats what a GOOD oncologist SHOULD do...and now I find out its YOUR right that they do this. So you all have fantastic onc doctors. I can't wait till its the standard of care where they HAVE to test a womens tumor before starting treatment. That is going to be so beneficial in my opinion. I feel that is whats really necessary here. I sure they will soon enough. I can't wait...it will save so many women going through additional chemo's and such. You are right about a positive attitude Jean...and even though I have been frustrated with my tx plan...believe it or not I have been feeling pretty positive about the whole thing. I REALLY have. Thanks so much for your post Jean. Here's wishing you well and sending you warm and healing thoughts. 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.