Genetic Testing in Australia

[hansjd]

There’s lots of good information on this forum about genetic testing in the USA, but has anyone had genetic testing done in Australia? If so, where was it done? How much did it cost? Was any of the cost covered by Medicare or private health insurance? Was it germline or somatic? I’d really appreciate receiving any information anyone has. Thanks.

[marnieg46]

Hi Hansjd. My husband had genetic testing last week at the SAN hospital in Wahroonga, Sydney. I'll need to check the information that was given to us to check on those things you ask about but the specialist who met with us was very thorough and we had to do an extensive map of my husband's relatives and not just ones who had died of cancer but birth and death (if applicable) of all those on the family tree. I thought a real plus was that prior to specialising in genetics she'd been an oncologist and so understood all the genetic implications for apc treatments etc.

In regards to costing we had three option to test for 5/6/14 genes (I think those were the numbers) and we chose to test for 14. One of the reasons being that to test 5 was about $450, a bit more for 6 and then then $600 for the 14. This cost was not funded by medicare or private health. Although the two samples were, in our case, collected in Sydney, it was then sent to Peter McCallum centre in Melbourne and the results are expected back, given the Christmas break, in about seven weeks when she will meet with us again. The specialist charged $550 and as we'd long ago hit the safety net we got almost all of that back from Medicare. She explained to us that the cost for the testing is sometimes funded but you need to meet a lot of criteria most I think around relatives who have had cancer and we couldn't come anywhere close even though my husband's father had prostrate cancer and his mother died of pancreatic cancer.

We really had it done thinking that it would be valuable information for our son and also knowing that if my husband's cancer progresses this can be useful information. What surprised us though was that the geneticist explained how important it was for our two daughters if my husband has the BRCA1 or 2 gene.

The specialist also explained that the government had entered into a five year moratorium with insurance companies and if you're seeking insurance eg income protection etc they are not permitted to ask if you've had genetic counselling or had testing. This legislation came into effect in July of this year.

Please feel free to message me privately if you want any further details and I'll check through the paper work and let you know more specifics as well as updating you when results are in.

Happy New Year in advance. Hope it's a good one for you.

[hansjd in reply to marnieg46]

Dear marnieg46, thanks so much for your incredibly detailed reply to my question. Very thoughtful and very helpful. Thanks for offering follow up info as well. We’ll be looking into it some more and maybe organising testing directly through the Peter Mac Centre as that’s where your samples were sent.

Happy New Year to you both. May it be a good one for you too. Cheers

[marnieg46 in reply to hansjd]

Great. Glad to be of help. Keep in touch and let me know how you go and I'll do likewise.

[AlanLawrenson]

Genostics.com.au have tests to analyse any CTC (Circulating Tumour Cells). Precision Oncology are agents for Caris Molecular Intelligence, the most prominent USA PCa testing outfit. Very expensive at A$9888.

I discuss this issue in my new book "An ABC of Prostate Cancer Today - 3rd Edition. The eBook variant will be available from Amazon Australia by Friday this week.

In my book I talk about the Color system which is No1 in the USA. It is available in Oz. Got to check my notes tomorrow.

[hansjd in reply to AlanLawrenson]

Thank you Alan for your reply. I will investigate the links you gave me and I look forward to purchasing your book on Friday. All the best and I hope your brother is faring OK.

[AlanLawrenson in reply to hansjd]

Hi. Firstly about my brother. Sadly, due to him becoming a paraplegic 4 weeks ago due to spinal compression, he has decided to forgo further treatment. Whilst Veyonda and/or other therapies might have arrested his cancer, he doesn't want to endure life as a burden to others.

Contact color.com. I believe that they have an agent in Oz, but can't seem to be able to find it. They do what is required inexpensively.

My new eBook is up for sale for $11.10 on amazon.com.au as of an hour ago. I have a few hard copies available at A$35 postage paid or $30 collect. I am in Concord/Breakfast Point. See the book web site at anabcofprostatecancer.com.au.

[hansjd in reply to AlanLawrenson]

Dear Alan

I’m so sorry to read of your brother’s situation. Is there nothing that can be done to relieve the compression on his spinal cord? Can I suggest you look at the website of Dr Ralph Mobbs who operates at the Prince of Wales Hospital in Randwick? He is a brilliant neurosurgeon. I, wife of hansjd, speak from personal experience having had spinal stenosis very successfully treated by him years ago. I know he treats cancer patients as well. Please have a look.

I’m about to have a look at the website for the hard copy of your book. Thanks for the link. It will have to by post as we live in the Top End. Just a bit far to collect : )

[AlanLawrenson in reply to hansjd]

Hi. Did you make any further progress re genetic testing in Oz. By the way, my brother is starting to have leg twitches which is encouraging, but his medical team have written him off and are not prepared to offer anything, but palliative care. I think you gave me two integrative oncologist names who might be able to help. One is looking promising, but my brother would need to be moved to another hospital where the Dr practises.

[hansjd in reply to AlanLawrenson]

Hi. I am delighted to hear that your brother is starting to have leg twitches, but not that his medical team has written him off. How appalling! I really hope you can find some help for him somewhere else.

As for genetic testing, I was trying to be proactive in gathering information about it, with the idea that we might organise testing for my husband.

Background information: my husband's first MO wasn't interested in genetic testing at all. We thought it was potentially important to have it done (his grandfather died of prostate cancer and two cousins died of breast cancer), so we sought a second opinion from a different MO who is a PC specialist. He immediately said it was a good idea. When we told the first MO we had sought a second opinion, he refused to treat my husband any more as he was "insulted" that we had done that.

My husband's current MO, who worked with the PC specialist and was recommended by him, seems to be somewhat cool on the idea of genetic testing at this point. My husband's next appointment with him is in a few weeks and we thought we would raise the issue again armed with more information. Depending on what he says, we might have to try to organise it ourselves.

It seems to us that at the very least, my husband should have germ-line testing done, as that won't change and might show important mutations. I can see some point in waiting to do somatic testing as the genetic makeup of the tumours will change.

As for your new book, I decided to order the Kindle version, which I have done. I look forward to reading it. Thanks for your continued support. I wish you and your brother all the best.

[AlanLawrenson in reply to hansjd]

Thanks for ordering the book. I am sure it will be very useful. If you find it so, please do a review and rate it.

I need to get a genetic test as I had a father with PCa, my brother and i have had it, I have two sons approaching 40 and two beautiful grand-daughters. I owe it to them at the right time.

Additionally, there are treatments that should be exclusively used to treat men with specific gene defects.