Cold Cap availability in public centres in Sydney/Newcastle
beth_again
Member Posts: 2 New Member
Hello everyone
I was recently diagnosed with T2 (2.5cm), grade 2, HR+, with micrometastases in one sentinel node, which officially put chemo on the radar for the treatment plan. I pushed for the Oncotype DX but the advice from my treatment team was that as I had a couple of red flags (I'm premenopausal, have a slightly high Ki67 score and it had already travelled to the node) the recommendation is to do 4-6 cycles of TC even if the test returns a low recurrence score, so I've cancelled the test and am now fully focused on how to limit the harm from proceeding with chemo. Keeping some of my hair and limiting the time for regrowth is a huge part of this, so it's a big priority for me to go for the cold cap.
I don't have private health insurance as I had bowel cancer exactly 5 years ago now, and had been waiting to clear it to get better premiums, plus I was treated so well on the public system that I questioned whether I needed it. But it turns out I can't access the cold cap in the Central Coast where I am based, and most nearby options are private.
I would love to hear from Sydney and Newcastle based community members who know of cold cap availability at public hospitals, especially if you were treated there and had a good experience.
So far I can see that Campbelltown, Blacktown and Chris O'Brien Lifehouse all offer the PAXMAN system, along with the Mater hospitals which I think treat some patients on public?
I go back into surgery to get better margins on Wednesday so I couldn't start before the end of November... but that's also right at the end of the 8 week guideline from my first surgery, so am feeling the time pressure to get a second referral!
Thank you so much for any guidance you can share
I was recently diagnosed with T2 (2.5cm), grade 2, HR+, with micrometastases in one sentinel node, which officially put chemo on the radar for the treatment plan. I pushed for the Oncotype DX but the advice from my treatment team was that as I had a couple of red flags (I'm premenopausal, have a slightly high Ki67 score and it had already travelled to the node) the recommendation is to do 4-6 cycles of TC even if the test returns a low recurrence score, so I've cancelled the test and am now fully focused on how to limit the harm from proceeding with chemo. Keeping some of my hair and limiting the time for regrowth is a huge part of this, so it's a big priority for me to go for the cold cap.
I don't have private health insurance as I had bowel cancer exactly 5 years ago now, and had been waiting to clear it to get better premiums, plus I was treated so well on the public system that I questioned whether I needed it. But it turns out I can't access the cold cap in the Central Coast where I am based, and most nearby options are private.
I would love to hear from Sydney and Newcastle based community members who know of cold cap availability at public hospitals, especially if you were treated there and had a good experience.
So far I can see that Campbelltown, Blacktown and Chris O'Brien Lifehouse all offer the PAXMAN system, along with the Mater hospitals which I think treat some patients on public?
I go back into surgery to get better margins on Wednesday so I couldn't start before the end of November... but that's also right at the end of the 8 week guideline from my first surgery, so am feeling the time pressure to get a second referral!
Thank you so much for any guidance you can share
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Comments
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@beth_again Check with your nearby private hospitals that do cold caps to see if they accept public patients for chemo. Many of them do. It is certainly worth a try1
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Thanks so much @Blossom1961 after some ringing around I'm pursuing two referrals, one private at the San and one public at Lifehouse. Private turned out to be not as astronomical as I thought out of pocket - $800 - $900 per day session and you get a couple hundred back from Medicare, in case this post helps anyone else looking in the future. But it's a relief to be able to access this on public with a long time off work ahead. The Mater hospitals also offer treatment to some public patients but they're a bit more of a distance from here (I previously lived in the inner west so can stay with friends if I go for Lifehouse)
Thanks again!
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