Forum Discussion
xpataus
9 years agoMember
Worried about new treatment plan!!!
I had my mastectomy in Adelaide on September 6th and the needed to relocate interstate for the chemo and radiotherapy due to my support network being stronger where I am now living. On Friday I met the local Oncologist, expecting the best, but now have some huge concerns!
My diagnosis was stage 3, TNBC, and I had two lymph nodes out. There are three incidents of breast cancer in my maternal family.
In Adelaide, the oncology team assessed the diagnosis, pathology results, risks and decided I should have 18 weeks chemo (every 3 weeks) and 5 weeks radiotherapy due to the virulence and aggressiveness of my cancer. Then, I was to have my other breast removed (they purposely left the right breast as a skin farm for the reconstruction surgeon to use after the radiotherapy had done it's damage to the left mastectomy site) and (based on the genetic test they wanted me to have) possibly my ovaries removed too.
This would all be followed by reconstruction. Clear, comprehensive and discussed treatment.
I presented all that information with my case file, pathology results, etc, and this new Oncologist dismissed any recommendations out of hand, stating I only needed four rounds of chemo and no radiotherapy. No other breast removal, no ovary removal, and just one breast reconstruction.
I questioned his logic, mentioned the Adelaide team and their plan, which he scoffed at. Taken aback, I demanded clear cold statistics.
He conceded that:
4 rounds of chemo' would give me an estimated survival, cancer free, at 72% for 5 years.
6 rounds of chemo' would give me an estimated survival, cancer free, at 86% for 10 years.
and he thinks radiotherapy isn;t needed and wouldn't discuss it...
Why the hell would he think I would want to treat this softy?! I want to hit my cancer on the head, and I'm really concerned about the 'no radiotherapy' decision.
I'm also concerned as he thinks the BRCA test is unnecessary - the opposite to Adelaide!
I am seriously wondering whether this Onc' is under-prescribing. Why - who know? For repeat business?! He's young, he's smart. What is going on? I really don't understand and am concerned by his dismissive approach. What logic is there? I told him I want to hit this hard and to never need to come back ever again.
He finally acquiesced at least on the chemo, and will now do six sessions of TAC.
He's also refusing to put in a power-port, which Adelaide highly recommended after the surgery from seeing how my veins behaved.
Not sure how to handle all this opposition....I'm scared and more than a bit nervous as I can't choose another oncologist because he's the only one in town. It's his little fiefdom.
Any advice on how to deal with this scenario gals ??? Your guidance would be greatly appreciated!
Oh, and he won't accept health care cards and charged $80 for the office visit (on top of the medicare rebate he gets for seeing patients). Adelaide did not charge anything at all.
So here I am - supposed to start chemo on Wednesday, have all these doubts about the oncologist, his plan, and I want a port.
Going to my GP to discuss, and plead for support on Tuesday, but not sure what else I can do, as this is a small coastal community and this oncologist runs the show here.
Thanks for your feedback!!!
My diagnosis was stage 3, TNBC, and I had two lymph nodes out. There are three incidents of breast cancer in my maternal family.
In Adelaide, the oncology team assessed the diagnosis, pathology results, risks and decided I should have 18 weeks chemo (every 3 weeks) and 5 weeks radiotherapy due to the virulence and aggressiveness of my cancer. Then, I was to have my other breast removed (they purposely left the right breast as a skin farm for the reconstruction surgeon to use after the radiotherapy had done it's damage to the left mastectomy site) and (based on the genetic test they wanted me to have) possibly my ovaries removed too.
This would all be followed by reconstruction. Clear, comprehensive and discussed treatment.
I presented all that information with my case file, pathology results, etc, and this new Oncologist dismissed any recommendations out of hand, stating I only needed four rounds of chemo and no radiotherapy. No other breast removal, no ovary removal, and just one breast reconstruction.
I questioned his logic, mentioned the Adelaide team and their plan, which he scoffed at. Taken aback, I demanded clear cold statistics.
He conceded that:
4 rounds of chemo' would give me an estimated survival, cancer free, at 72% for 5 years.
6 rounds of chemo' would give me an estimated survival, cancer free, at 86% for 10 years.
and he thinks radiotherapy isn;t needed and wouldn't discuss it...
Why the hell would he think I would want to treat this softy?! I want to hit my cancer on the head, and I'm really concerned about the 'no radiotherapy' decision.
I'm also concerned as he thinks the BRCA test is unnecessary - the opposite to Adelaide!
I am seriously wondering whether this Onc' is under-prescribing. Why - who know? For repeat business?! He's young, he's smart. What is going on? I really don't understand and am concerned by his dismissive approach. What logic is there? I told him I want to hit this hard and to never need to come back ever again.
He finally acquiesced at least on the chemo, and will now do six sessions of TAC.
He's also refusing to put in a power-port, which Adelaide highly recommended after the surgery from seeing how my veins behaved.
Not sure how to handle all this opposition....I'm scared and more than a bit nervous as I can't choose another oncologist because he's the only one in town. It's his little fiefdom.
Any advice on how to deal with this scenario gals ??? Your guidance would be greatly appreciated!
Oh, and he won't accept health care cards and charged $80 for the office visit (on top of the medicare rebate he gets for seeing patients). Adelaide did not charge anything at all.
So here I am - supposed to start chemo on Wednesday, have all these doubts about the oncologist, his plan, and I want a port.
Going to my GP to discuss, and plead for support on Tuesday, but not sure what else I can do, as this is a small coastal community and this oncologist runs the show here.
Thanks for your feedback!!!
30 Replies
- xpatausMemberThanks Lyn, Commenced my chemo regime finally, and on that hell journey.
Chanel - Yes, Thnx I did all that, and am very happy with my new onc' and the way things are proceeding, with a port. Chemo is no fun, but at least I know now I'm being given the correct treatment and care. I so appreciate the support here. This online group really saved the day for me. Now I will no doubt be here in chemo fog brain mode asking other questions. Hugs to you all :-) - lrb_03MemberWell done Karen. It's just a shame that it took so much to get you to this point.
Take care
Lyn - ChanelMemberYou must be confident in who is looking after you. You should get another opinion, even get in touch with the team from Adelaide and voice your concern . There must be someone who can guide you and put your mind at ease. I wish you well. Let us know how you get on, sending you love and hugs xo
- JanineGMemberYay Karen.
- kayvieMemberWell done Karen. Glad you have the outcome you wanted and good on you for sticking up for yourself!
Enjoy the weekend - InkPetalMemberI AM SO PROUD OF YOU. :star:
- socodaMemberKaren, That is absolutely fantastic news!! Well done to you because you instigated the change, which is an incredibly hard thing to do!!! Wishing you a week of relaxation, calm and piece of mind. <3 <3 Cath
- AfraserMemberHooray! A good news story! Well done and here's to perseverance.
- primekMemberGreat outcome.
- ElaineGMemberSo good to hear the perseverance paid off! It's amazing how good it feels when you discover a great and caring oncologist :)