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xpataus's avatar
xpataus
Member
9 years ago

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!!!

30 Replies

  • You go girl. Your body. The port was the best thing I did at the beginning of treatment, knowing that I had crap veins. Also, do whatever you need to to get another opinion
    Take care
  • Woohoo!!! You go girl!!! Excellent - this oncologist is not GOD no matter how much he thinks he is!!!
  • Thank you, Scared Mum and Janine - a game show. He was very proud to show off his 'app' with which he formulated the chemo cocktail. Yes, I haven't been sleeping since my appointment, and have been so nervous, but really, all I have to do is as you all advise. Take charge. Calling Adelaide in the morning to ask that the oncologist there call him, getting the gene test paperwork from Adelaide also sent to my GP in Port Mac and doing it that way, and finding the right person to arrange surgery for a port when I go to the introduction to chemo session in the afternoon at the centre. My body, my choices. Thank you all!!!
  • How awful for you Karen. You need to feel confident in your medical team, don't get bullied.
    I was originally sent to a private oncology centre and met a very bright young enthusiastic oncologist who treated my appointment like a game show episode. He also told me I would receive my treatment at the 'bargain price' of $500. I felt like he was trying to sell me products. He rubbed me the wrong way. I left the appointment and immediately phoned my breast care nurse who changed my care to peter Mac public.  And every single part of my treatment was/ is free. Best care ever! 
    Dont settle you are going through a terrible time and need to feel supported by your medical team. 
    Good luck xo

  • Agree with the advice already given, can you get your onco in Adelaide to send him a letter outlining his treatment plan? Might help him to understand if he is not up to date with the ever changing treatments options.. good luck <3  <3  Oh just a thought talk to the chemo nurses on wed they will know if there is another onco you can see.. 
  • Thank you, Cath. I'll check out Houghton! Rowdy -your advice re Taree is another option, and thanks also to Afraser for your support. 

  • Agree with the advice already given. Confidence in your medicos is central to your state of mind and capacity to carry treatment. Very hard though when there are limited options. 
  • Hi Karen if you are not happy keep pushing, it is really difficult when you have been given different treatment plans. If you are going through the public system I would have assumed there would be no charge. Have you thought have maybe going to Taree bigger hospital I know it is a bit of a drive but you have to be happy
  • Hey Karen, I don't know if he is still there but there is a Dr Baerin Houghton listed as a medical oncologist also attached to Port Macquarie base hospital and listed as oncologist to mid nth coast cancer therapy centre too. You shouldn't have to fight for your treatment so I'd be asking to see him. Let us know how you get on! Xx Cath