Forum Discussion
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
- What a world of difference it makes when you stand up for yourself ...
The past week has been a difficult and scary time changing oncologists right when I was due to start chemo.
But throughout the journey - all respondents in this thread have helped and supported me.
I can't thank the BCNA Online Network enough. You gave me courage and practical advice.
Thank you for telling me to not settle!
And Cath (socoda) thank you for recommending Dr Baerin Houghton, my lovely, new, dreamboat oncologist.
Today I met him and thankfully, Baerin has taken me on as his patient so I don't have to travel to Sydney or Newcastle for chemo. He's implementing the 5-month AC-Paclitaxel which he said is longer and more ardous, but with TNBC he doesn't want to take chances. And I don't have to take as many steroids (less 'roid rage ~ gotta love that!).
Baerin is authorizing the BRCA-1 gene test and he supports me getting a power-port.
He's personable, clear, concise and thorough (ordered baseline blood tests - the other did not), and is referring me to the local radiotherapy oncologist (instead of dismissing the need for radiotherapy as the other did).
Plus, he asked me questions and actually seems to care.
The first question was "What's important to you, and what do you want?", and I replied, "Continuity of treatment and the level of care I was receiving in Adelaide".
Now it looks like I'm going to get it :-)
And, isn't that what we all really want!? To simply be treated with respect, dignity and compassion.
So, I start my regime next Friday, and although it's crap having to undergo this toxic process, at least I now feel I will be well cared for on the journey.
Wishing you all a great weekend ~ Peace & Love fellow travelers <3 - HI - totally agree with suggestion re seeking another opinion.
I too felt bullied earlier this year when I ended up with an oncologist by default after being shunted from RNSH to NCI (opposite) and in between sought another opinion.....but it wasn't until I found my 4th oncologist that all the ducks lined up - and I just know she will see me thru to the very end - and I have 101% confidence - and that is essential I think - when we can feel and be so vulnerable in all other areas x - So glad to hear Kelli was supportive & helpful. Just to be taken seriously is a very positive step forward from where you were at a few days ago. Hope the new oncologist is more supportive of the original treatment plan & at least actively listens to your concerns.
Mel - Well done Karen <3 <3
- Well done Karen, that is excellent news!! Its so hard having to fight when you are in a very vulnerable place medically. Let us k ow how you get on both with your port and the other oncologist. I think you're brilliant. Xx Cath
- And Mel,
Joanne is away at the moment, but I met Kelli, who'll be my nurse through this and she was fabulous. I will get this resolved. Then we can have that coffee!!!
Karen - Well today was tough, but I ultimately had a good session with two chemo nurses, to whom I explained my concerns and they are not facilitating my transfer to the other Onc in town. He used to do breast, more lungs, thoracic now. Still, he's the only other option in town and if he sticks to Adelaide's plan I'll be happy.
I have said I want a port. They are still trying to talk me out of it, but I stated that unless I get one, I'm not doing chemo, as I only have one good arm and want to keep it thus.
Referral from the GP tomorrow for the other Onc, and a psych.
Let's see how things progress.
Again - thank you all for your lovely advice, your moral support and kindness ladies on the BCNA online network. Karen B - Hi Karen,
Well that's a very different treatment approach indeed - no wonder you're feeling so anxious.
As well as your GP, you could also try talking with Joanne Woodlands (Breast & Gynecology Cancer Nurse Specialist) at the Mid North Coast Cancer Institute.
Mel - Agree with the above. I am having chemo in Broken Hill through the RAH in Adelaide. They said wait and see if I needed a port...but by round 2 it became apparent it wouldn't do ss I was having ACT-H. ..the taxol given weekly...so 12 doses instead of 4 every 3 weeks. I had one put in prior round 3 of AC. I hope you can get someone else you feel comfortable with.
- Get loud. Refuse to agree to anything until you're listened to. Nothing can go ahead without your consent. :heart:
