HER2 Support Group Forums - View Single Post

Chelee · 07-02-2006, 11:52 PM

CPA, As to any health issues concerning me or my family, my Dad did die of a massive heart attack at age 36. I did take that into consideration when my onc choose the TCH. But I knew NOTHING when I was first DX and didn't know about AC or anything else for that matter. My Mother has had high blood pressure but its been controled with meds. She is now 76 years old this last May and doing rather well. My brother and other family are all fine health wise.

Knowing what I do NOW verses then...I just wish my onc would of at least sat down and went over my tx plan and their choice of my chemo regimen. Nothing was discussed or talked about with me and my husband at that time. In fact I remember asking if I have any say in my treatment plan? He said "No". The only thing that he did when we first met was he got out that adjuvant sheet and told us what my chances of survial were without chemo, with chemo, combined chemo, etc. Which all of it at that time meant very little to me.

I went for my 2nd opinion at another cancer center that has been around for 30 years or more. I spent two hours with them after they reviewed my medical history, mammo's, ultrasounds, path reports, slides, family history, etc and they said they WOULD of FIRST put me on AC and did not know WHY my first onc choose the TCH for me with such an aggressive cancer?

And my NOW onc doctor that I switched to even said if I had came to her first...that would of been her choice..meaning AC first and followed by TH.
She has 22 + years behind her and my 1st onc doctor I was sent too that decided on this regimen has two years. (So there is some of my concern.)

I have NO history of heart problems...yes my Dad did. But I don't even have high blood pressure and all my ECHO'S have been fine. (Knock wood.) I just wish he would of discussed this and explained what the standard protocol was with me...and WHY he was going with the TCH. Maybe I would of been fine with it after I heard why he choose it?

I had a bad prognosis...very high risk! Nothing good about it...so it should of been AC then TH. I am stage IIIA, Her2/neu 3+++, Er & Pr positive, and 5 out of 16 positive nodes. Richardson scale 9 of 9. The big cancer center I went to did NOT see any reason that AC was not used on me...nor did my current onc. But I can't go backwards...whats done is done. I hope if nothing else anyone new on this board that was just DX and is scared out of their mind and doesn't know much about what to ask...reads this and learns they better read up, ask questions...and make sure they get answers and now they DO have a say so in their tx plan. I encourage all women to NOT just feel pressured and assume what your doctor choose is the best for you. At least do some homework.

You said one piece of advice would be for me to trust my doctors. I have..and did. I don't know why you would think I haven't?

>Your last sentence in your post to me says: Your wife CHOOSE the TCH tx option AFTER a LONG LENGTHY discussion with an oncologist at a large regional center.<

See...I did NOT have ANY options put up to me like you and your wife did. I was TOLD what my tx plan was...take it or leave it. There was NO LONG lengthy discussion with us. I would of felt so much better and had alot more trust if at any time someone would of sat down and discussed anything with me like they did with you and your wife.

All cancer centers and doctors are not the same unfortunetly for me. We have TRIED so hard to get along with these people there. We tell them we just want our questions answered...we want to know whats going on? I don't think thats asking to much. Your just suppose to take their word for everything and NOT ask them anything. My recent PET/CT scan shows things that concern me and I wanted them explained. I asked very nicely. She just said it looks fine to her and for me not to worry about it. (That is not good enough for me.) With stage IIIA, positive nodes...I have a right to know. My pet/ct scan says, increased uptake in the lymph nodes the right carotid space. I wanted that explained to me to calm my fears since my bc was on the RIGHT side. Plus I have a BIG puffy deal sticking out in that spot...but she tells me its nothing.

I don't know how I can have complete trust when I can't get answers. Even the report says it should be looked into. I have to get all my records myself now to find out whats going on with me. I have been so nice to these doctors..there is no reason for this.

I am going to have to go PAY a oncologist some where else to get answers. Most people have oncologist like you do that take the time to talk, dicuss and calm someones worries. I am so glad most are like what you and your wife deal with...because no one going through bc should have to deal with what I have had too.

It draining enough physcially and emotionally to have bc. Then not taking time to explain things to us. I get promised that they will have MORE time at the next visit...I believe them...and it never happens. I walk away worried they aren't telling me something when they do this.

I am use to doctors working with you...not against you. The other cancer center I went to told me this one sounds like its run like a MILL. Not my words...theirs.

I will be seeing my surgeon soon for a follow up since its after my chemo. At least he has been great from day one and I know he will answer my questions if he can. Thats all I want.

Thanks very much for your reply CPA. I will just pray and have faith that TCH does it for me. I do know it is a good regimen. Wishing you and your wife all the best.

Chelee

07-02-2006, 11:52 PM	#5
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	CPA, As to any health issues concerning me or my family, my Dad did die of a massive heart attack at age 36. I did take that into consideration when my onc choose the TCH. But I knew NOTHING when I was first DX and didn't know about AC or anything else for that matter. My Mother has had high blood pressure but its been controled with meds. She is now 76 years old this last May and doing rather well. My brother and other family are all fine health wise. Knowing what I do NOW verses then...I just wish my onc would of at least sat down and went over my tx plan and their choice of my chemo regimen. Nothing was discussed or talked about with me and my husband at that time. In fact I remember asking if I have any say in my treatment plan? He said "No". The only thing that he did when we first met was he got out that adjuvant sheet and told us what my chances of survial were without chemo, with chemo, combined chemo, etc. Which all of it at that time meant very little to me. I went for my 2nd opinion at another cancer center that has been around for 30 years or more. I spent two hours with them after they reviewed my medical history, mammo's, ultrasounds, path reports, slides, family history, etc and they said they WOULD of FIRST put me on AC and did not know WHY my first onc choose the TCH for me with such an aggressive cancer? And my NOW onc doctor that I switched to even said if I had came to her first...that would of been her choice..meaning AC first and followed by TH. She has 22 + years behind her and my 1st onc doctor I was sent too that decided on this regimen has two years. (So there is some of my concern.) I have NO history of heart problems...yes my Dad did. But I don't even have high blood pressure and all my ECHO'S have been fine. (Knock wood.) I just wish he would of discussed this and explained what the standard protocol was with me...and WHY he was going with the TCH. Maybe I would of been fine with it after I heard why he choose it? I had a bad prognosis...very high risk! Nothing good about it...so it should of been AC then TH. I am stage IIIA, Her2/neu 3+++, Er & Pr positive, and 5 out of 16 positive nodes. Richardson scale 9 of 9. The big cancer center I went to did NOT see any reason that AC was not used on me...nor did my current onc. But I can't go backwards...whats done is done. I hope if nothing else anyone new on this board that was just DX and is scared out of their mind and doesn't know much about what to ask...reads this and learns they better read up, ask questions...and make sure they get answers and now they DO have a say so in their tx plan. I encourage all women to NOT just feel pressured and assume what your doctor choose is the best for you. At least do some homework. You said one piece of advice would be for me to trust my doctors. I have..and did. I don't know why you would think I haven't? >Your last sentence in your post to me says: Your wife CHOOSE the TCH tx option AFTER a LONG LENGTHY discussion with an oncologist at a large regional center.< See...I did NOT have ANY options put up to me like you and your wife did. I was TOLD what my tx plan was...take it or leave it. There was NO LONG lengthy discussion with us. I would of felt so much better and had alot more trust if at any time someone would of sat down and discussed anything with me like they did with you and your wife. All cancer centers and doctors are not the same unfortunetly for me. We have TRIED so hard to get along with these people there. We tell them we just want our questions answered...we want to know whats going on? I don't think thats asking to much. Your just suppose to take their word for everything and NOT ask them anything. My recent PET/CT scan shows things that concern me and I wanted them explained. I asked very nicely. She just said it looks fine to her and for me not to worry about it. (That is not good enough for me.) With stage IIIA, positive nodes...I have a right to know. My pet/ct scan says, increased uptake in the lymph nodes the right carotid space. I wanted that explained to me to calm my fears since my bc was on the RIGHT side. Plus I have a BIG puffy deal sticking out in that spot...but she tells me its nothing. I don't know how I can have complete trust when I can't get answers. Even the report says it should be looked into. I have to get all my records myself now to find out whats going on with me. I have been so nice to these doctors..there is no reason for this. I am going to have to go PAY a oncologist some where else to get answers. Most people have oncologist like you do that take the time to talk, dicuss and calm someones worries. I am so glad most are like what you and your wife deal with...because no one going through bc should have to deal with what I have had too. It draining enough physcially and emotionally to have bc. Then not taking time to explain things to us. I get promised that they will have MORE time at the next visit...I believe them...and it never happens. I walk away worried they aren't telling me something when they do this. I am use to doctors working with you...not against you. The other cancer center I went to told me this one sounds like its run like a MILL. Not my words...theirs. I will be seeing my surgeon soon for a follow up since its after my chemo. At least he has been great from day one and I know he will answer my questions if he can. Thats all I want. Thanks very much for your reply CPA. I will just pray and have faith that TCH does it for me. I do know it is a good regimen. Wishing you and your wife all the best. 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.