Hi. I was diagnosed with an unusual mucinous BC late October 2019. Two surgeries, the second re-excision and SLNB early November. It's now December. Initially told it's Stage 2A (T2 N0 M0) but now my case will be reviewed because the oncologist thinks the tumour in the axilla might actually be a lymph node and not breast tissue. Still no clear treatment plan. Haven't slept properly for weeks. I've just paid $5000 for the Oncotype DX Breast Test. Hope it's worth it. Another two weeks wait for that and for the MDT to meet again.

I just received the 'good' news that my Oncotype DX Recurrence Score is 20. As I'm >50 years of age (54), there is no Chemotherapy Benefit (<1%). The most effective treatment will be endocrine therapy following radiotherapy. I still have an intermediate risk of recurrence and I am still worried about that, of course, but now I know that putting myself through chemo would have been of little benefit. If the report had recommended chemotherapy, I would have gone forward with confidence that the benefits outweigh the side-effects.Therefore, I conclude that the expense ($5000) of the Oncotype DX genomic assay is well worth it.My medical oncologists said they advocate for the test to be covered by the Pharmaceutical Benefits Scheme (PBS). They want patients/the public to advocate for Oncotype DX too. How do we go about that? I was able to afford it (just), but I would like everyone who is a suitable candidate to be able to access the test. In the long term, it would spare many people from having chemo unnecessarily - and spare the public health system the expense of chemo and the cost of dealing with subsequent health issues.Who Might Benefit from the Oncotype DX Breast Cancer Assay?The Oncotype DX breast cancer assay can be used by all patients newly diagnosed with early stage, invasive breast cancer who are:Node-negative or node-positive (cancer has spread to no more than 3 lymph nodes)Oestrogen receptor (ER) positive andHuman epidermal growth factor receptor 2 (HER2) negativehttps://www.stabiopharma.com/index.php?q=oncotype-dx-breast-recurrence-score.html

Waiting is the hardest. My Oncotype results kept getting pushed out a few days at a time, it was torture! A simple saying helped me greatly to live in the moment- the worry of tomorrow takes away the joy of today. I looked for small happy things each day. All the best for the results xx

I have HER2 positive BC so this test is not beneficial to me, however it does not make sense that people have to pay for this. The chemo medications cost thousands of dollars anyway and as previously mentioned by the other ladies, why make women go through chemo if this test can show there is no benefit.

It would be interesting to have more detail about why the ‘evidence presented did not give the committee confidence that the test would identify those patients who could safely avoid chemotherapy’. There may be an issue about possible legal action at some later stage if advice proves to be incorrect (these are indications, not sure fire guarantees of never having cancer again), and if the test is subsidised, it’s a sort of government endorsement. Perhaps BCNA can add more information?

Oncotype DX | Online Network

shs14
Member
6 years ago
Hi @BewilderedButHopeful I have her2 so the oncotype is not for me, had to have chemo anyway, but I'm dropping in to say you are in the right place for good listeners and advice. Its very hard this first part when your diagnosis is still pending. I do know that it gets easier for many further down the track when you have a treatment plan.
It sounds like your Oncologist is being very careful which is great. You want to be going the right way when you set off, and hopefully the Oncotype will give you more information.
I understand the sleeplessness, it is so common round here. I have been using audiobooks from the library on my phone when I wake in the night to distract my busy mind.
Sending you white light and good luck!
Mightystar
Member
6 years ago
Waiting is the hardest. My Oncotype results kept getting pushed out a few days at a time, it was torture! A simple saying helped me greatly to live in the moment- the worry of tomorrow takes away the joy of today. I looked for small happy things each day. All the best for the results xx
Dory65
Member
6 years ago
Thanks shs14 and Mightystar.
Dory65
Member
6 years ago
I just received the 'good' news that my Oncotype DX Recurrence Score is 20. As I'm >50 years of age (54), there is no Chemotherapy Benefit (<1%). The most effective treatment will be endocrine therapy following radiotherapy. I still have an intermediate risk of recurrence and I am still worried about that, of course, but now I know that putting myself through chemo would have been of little benefit. If the report had recommended chemotherapy, I would have gone forward with confidence that the benefits outweigh the side-effects.

Therefore, I conclude that the expense ($5000) of the Oncotype DX genomic assay is well worth it.
My medical oncologists said they advocate for the test to be covered by the Pharmaceutical Benefits Scheme (PBS). They want patients/the public to advocate for Oncotype DX too. How do we go about that? I was able to afford it (just), but I would like everyone who is a suitable candidate to be able to access the test. In the long term, it would spare many people from having chemo unnecessarily - and spare the public health system the expense of chemo and the cost of dealing with subsequent health issues.
Who Might Benefit from the Oncotype DX Breast Cancer Assay?
The Oncotype DX breast cancer assay can be used by all patients newly diagnosed with early stage, invasive breast cancer who are:
Node-negative or node-positive (cancer has spread to no more than 3 lymph nodes)
Oestrogen receptor (ER) positive and
Human epidermal growth factor receptor 2 (HER2) negative
https://www.stabiopharma.com/index.php?q=oncotype-dx-breast-recurrence-score.html
primek
Member
6 years ago
Best $5000 spent.
kmakm
Member
6 years ago
PV123
Member
6 years ago
I have HER2 positive BC so this test is not beneficial to me, however it does not make sense that people have to pay for this. The chemo medications cost thousands of dollars anyway and as previously mentioned by the other ladies, why make women go through chemo if this test can show there is no benefit.
Afraser
Member
6 years ago
It would be interesting to have more detail about why the ‘evidence presented did not give the committee confidence that the test would identify those patients who could safely avoid chemotherapy’. There may be an issue about possible legal action at some later stage if advice proves to be incorrect (these are indications, not sure fire guarantees of never having cancer again), and if the test is subsidised, it’s a sort of government endorsement. Perhaps BCNA can add more information?
arpie
Member
6 years ago
Disappointing that it has been knocked back - in the long run, not only would it save many thousands in chemo treatments - but also save patients from harrowing treatments & side effects.

Shame an Aussie company doesn't start off the same test here
Dory65
Member
6 years ago
"The Oncotype DX test has been available in Canada since the end of 2007, and to date, over 30,000 Canadian women have benefited from testing. There is publicly funded coverage for the Oncotype DX Breast Cancer Assay patients in a number of Canadian provinces including British Columbia, Alberta, Saskatchewan Manitoba, Ontario, Quebec, Nova Scotia, PEI and Newfoundland. Individual patients also have the option of paying for the test themselves if there is no coverage in their province, or if they do not meet pre-specified provincial eligibility criteria." https://www.oncotypeiq.com/en-CA/breast-cancer/patients-and-caregivers/stage-i-iiia-invasive/eligibility-and-testing