Chemo test confusion

Terrific, @PetraSminsk.  Don't forget that breastcancer.org is an American website - so the 'who qualifies' may not relate to Aussies with BC.

All the best for your Mum's recovery from the surgery & upcoming appointments. xx

Thank you everybody this feedback has really been very helpful, and I am doing a lot of research now on whether it would be useful for mum - that link to the oncotype website by @Dory65 has helped as well. 

I'll second what @kmakm says - for most of us, chemo is definitely not fun, but not as bad as what we may have expected.  It is a very personal experience and do-able but having support from those around you makes it all so much easier.

I had a genomic test, and it came back clearly indicating I needed chemo. Or to put it another way, it revealed that my cancer was more likely to metastasise than not. I'll take the chemo thanks!

@PetraSminsk, I was petrified of having chemo. I'd absorbed all the horror stories, and two nights before had a massive, horrifying panic attack. But like many things, the anticipation was worse than the reality.

Losing my hair didn't worry me. It was an interesting experience in and of itself. No one enjoys looking like the cancer patient that you are, but you get used to it.

Lots of people have fun with scarves, or wigs. Over the years I've read posts from women who wore wigs so good that people never knew they'd had chemo.

Nothing about this is fun, but most of us tend to do what the doctors and science suggest. You pull up your big girl undies and you get through it. Your mum is under a lot of stress at the moment and I love that you're there for her. Please reassure her that we're here for her if she wants to reach out, and that we understand. We've trodden the path that she's on and she is not alone. K xox

Hi,

I had the EndoPredict genomic testing done about one month ago at a cost of just under $3000. I'm surprised they are petitioning for OncoType, as EndoPredict has better 'stats' when you get down to scientific studies comparing what it predicts versus actual outcomes.

Anyhow, only a very specific type of BC is suitable for genomic testing to determine how effective chemo will be. I was the perfect candidate, my Ki67 was low but my tumour was not small (35mm at largest measurement). Hormone positive Her negative. No lymph nodes involved. I had a mastectomy, which meant I did not require radiotherapy. 

If I was 60, my oncologist probably would have told me not to have chemo. As it looked unlikely I would have a recurrence in 10-20 years. However I'm 45, so 10-20 years and I'm still not that old. So they offered me the 'option' of chemo as an extra 3% boost at keeping it away (figures before genomic testing).

I could afford the test, so I did it. It showed I have a very low recurrence risk just on tamoxifen. It was, for me, quite conclusive that chemo would not be recommended. However, there was the risk as mentioned already of the test still putting me in the 'grey zone'. As it meant I did avoid chemo, the test has 'paid for itself' as I have used all my sick leave on surgery recovery. So each day off for chemo would have cost me hundreds of dollars in lost pay.

The test is definitely not suitable or needed by everyone. Without it, many already have a very clear picture if chemo is necessary or not based on other factors and the oncologist will be able to support your mum with all of that information. That will include whether or not she is a candidate for genomic testing.

"Who is eligible for the Oncotype DX Breast Recurrence Score Test?

You may be a candidate for the Oncotype DX Breast Recurrence Score Test if:

• you’ve recently been diagnosed with stage I, stage II, or stage IIIa invasive breast cancer
• the cancer is estrogen-receptor-positive
• the cancer is HER2-negative
• the cancer is lymph node-positive or lymph node-negative (meaning you may be eligible for the test whether or not the cancer is in the lymph nodes)
• you and your doctor are making decisions about chemotherapy

Most early-stage, estrogen-receptor-positive, HER2-negative breast cancers are treated with hormonal therapies, such as an aromatase inhibitor or tamoxifen, after surgery to reduce the risk that the cancer will come back in the future. Whether or not chemotherapy is also necessary has been an area of uncertainty for patients and their doctors.

If you’ve been diagnosed with early-stage, estrogen-receptor-positive, HER2-negative breast cancer, the Oncotype DX Breast Recurrence Score Test can help you and your doctor make a more informed decision about whether or not you will benefit from chemotherapy."

https://www.breastcancer.org/symptoms/testing/types/oncotype_dx

Hi @PetraSminsk,
Firstly, good on your for supporting your mum.
I did have the Oncotype DX test and avoided chemo. It is not suitable for all breast cancers, as you will have read above. There are other tests which some of our members here might know more about. Ask the surgeon for a copy of the pathology results, and ask them to explain the type of breast cancer. From that point, you can discuss treatment options.

All the best. xxx

No, I didn't have any test done @arpie.  The oncologist told me the percentages (can't remember them now), said that he would be happy to go through the predictors with me but also advised that they are heavily skewed to IDC.  His recommendation was for chemo given the size, node involvement and that it was pleomorphic.  I also know that he talked about percentages in much the same way as @allyjay has said.

my understanding is that testing often depends on the type of cancer and the negative/ positive parts of the cancer . It’s not automatically a option ( if you can afford it ) for everyone .  If you discuss with oncologist he may be able to clarify that for you ? 

Dear @PetraSminsk

If you and your mother have faith in your oncologist, be guided by him/her. Mine was very clear that in his opinion chemo was an important part of treatment. If he’d said it might make no difference, then I might not have had it. I had some side effects but no fatigue or nausea, kept working and as I wore a wig, most people had no idea about any of it (I was 68). As many people have pointed out, even the oncotype may leave the decision primarily up to the patient! My breast surgeon refused to advise on chemo (referring me to my oncologist) but said every percentage point counts. Like @AllyJay, that stuck with me. I’ve once been the ‘one in 10,000’ (nothing to do with bc and all happily fixed), and you really don’t want to be on that side of the percentages. Best wishes whatever you decide. 

Yep, I saw that petition and I’m so happy someone started it, I just didn’t know it was a doctor. Good on whoever it was! This test costs $5000 to do, and there’s another one here in Oz that costs $3000 or thereabouts, but to me that’s a lot of money that most people don’t have lying around!! And in my opinion shouldn’t have to pay out of pocket, but should def have it offered to them, especially since in the US and UK patients get it for free. This test shows you how likely it is that chemo will help in preventing recurrence. If it’s a small percentage, that means chemo won’t be of much benefit at all, and so it’s much better to skip than risk getting some side effects that could be lifelong, such as an arrhythmia. That would mean more long term medication with its own possible side effects, and so on. So if you can skip chemo, I think it’s a good idea to do so. I couldn’t afford the test, and my onco told me I was a grey area, with him being comfortable with me not doing it so I skipped it. I was told having chemo in my case would not prevent a recurrence (God forbid!) and possibly getting one would not be cos I skipped chemo. So in that case, I didn’t see the point. I was told hormone blockers would be much more effective in my case. So the test is def a good idea but if it’s for free. I think you should have your mum’s onco tell her how likely it is that chemo will be beneficial for her without doing the test, and then decide based on that. Some ladies who had the test still got inconclusive results that were in the grey area, so for them it ended up being a waste of money. That’s why if you can’t afford it, don’t mention it, but tell the onco he needs to decide and do his best based on what info he already has.