Hi!First time stepping out from lurking and I just want to say thanks to everyone who has posted/commented anything on here. It has been so good to read about real (and Australian) BC experiences. I promise I'm going to add some photos in the Choosing Reconstruction group soon to pay forward the support.I'm 45yo and 2.5 weeks ago had a single mastectomy with immediate implant reconstruction plus sentinel node biopsy on my right side after a diagnosis of invasive ductal carcinoma. Due to the size, it was hoped my nodes would be clear - which they thankfully were, hence the immediate reconstruction. That took radiotherapy off the treatment table, as I'd hoped when opting for a mastectomy.I had no symptoms of cancer. I had a small lump pop up, red and sore, earlier this year. It was nowhere near my cancer and has since been determined to have been a cyst. But in checking it out, they found a patch of microcalcifications. Nothing could be seen on ultrasound nor palpated. I had a sterotactic biopsy and mri prior to surgery.Following surgery, I had my first appointment with the medical oncologist this week and, unexpectedly, the team had decided that I should be given the option of Chemo. So now my head is swimming with statistics and so on.Specifics of my tumour is 35mm at its widest (which matched the MRI, which had it at 35mm x 25mm x 10mm - quite flat which I assume is why no lump could be felt). It is strongly ER and PR positive. I have a history of lean PCOS (a hormonal condition) and taking the pill, Yasmin - so some hormonal risk factors. It is HER2 negative. There were no other tumours etc found in the rest of the breast and as mentioned, nodes clear.So hormone therapy is 100% first line of attack for keeping it away. However, due to my younger age (I don't feel that young, but in the breast clinic waiting room I could see that I am in the world of breast cancer) and the size of the tumour, they wanted to give me the option of TC chemo.I'm definitely in the 'oncotype testing recommended' group as it is not clear cut that chemo will do that much.So my question. My Ki67 was 9%. Which is low (just). I'd love to hear from anyone who had any form of oncotype (or the other similar ones) testing. How did your Ki67 compare to your final tests?I'm thankfully in a position to be able to afford the test - it would cost less than days off for chemo now that I've used all my sick leave. Just concerned as so far this has all been a slow process and I don't want too many more delays.

Hi @StrongCoffee. My tumour was just under 2cm. My ki67 was 19% and I had a strong family history of BC. I was strongly ER+ but not strongly PR+. Lymph nodes clear. My BS kept telling me I was difficult because I was such a grey area!Despite the initial plan being lumpectomy and radiation, all things considered, my oncologist said if she was in my position and could afford to, she'd do the genomic testing. She said that there was a number and if you were above it you did chemo and if you were below it you didn't. When my results came in I was "clearly" in the category where chemo was warranted and so TC it was.There were rude words screamed in the car after the phone call that gave me the results but I have no regrets. I'm in the 'throw the kitchen sink at it' category and I have the peace of mind that I did everything I could.For what it's worth that's my story! Hope it's useful. K xox

Yes, very understandable. I would worry too. These are such difficult decisions! I actually had 3 lumps in my right breast, and one in my left. The biggest was grade 1, the others were grade 2. The fact it was both multifocal and bilateral made me worry too,and think seriously about having the chemo. I did ask my onc if that made things worse and he said no. The main reason chemo was suggested was cos of my age. But your lump was bigger. However, despite its size, you still had no node involvement. So I think it probably was just sitting there for a while, growing slowly and minding its own business. My onc compared my biggest tumour to a cocker spaniel, and the others to a Jack Russel (tiny node involvement). Yours sounds like my cocker spaniel, not aggressive at all. However, ca is ca, and if you have the funds, maybe you should do the test. I have read comments of a couple ladies though, who did the oncotype, only to still get inconclusive results and still be told it was a grey area. Another lady (@Dory65 ?) did it, and it came back she didn’t need chemo. Same ca type as ours I think. This bc business ain’t fun 😕. Good luck with your decision ♥️

Hi @StrongCoffee,I've messaged you privately with my statsSee https://www.bcna.org.au/news/2020/02/oncotype-dx-again-rejected-for-medicare-subsidy/“MSAC advised the Minister for Health that the evidence presented for Oncotype DX did not give the Committee confidence that the test would identify those patients who could safely avoid chemotherapy or those patients who would benefit from adding chemotherapy,”However, my oncologist seemed to think the test is reliable, planned my treatment base on it, and said they would offer it to everyone if they could. (Please note they did not inform me of its existence - I was booked in for chemo - I only knew about it because my clever surgeon suggested it). It's certainly not a clear-cut, resounding vote of confidence, but I think I'm glad I skipped Chemo. Time will tell. It's been hard enough without chemo. Hats off and heartfelt best wishes to those who had/have to endure it and the side effect.

I was never offered the onco test as mine was low ki67 but pleomorphic and in the nodes. However, my suggestion is, if your onc suggest it and you can do it, do it. As long as the results are something that you will consider in your decision. Chemo is not something to take on lightly but nor is it something that you should avoid if it is of benefit.

FLClover said: Yes, very understandable. I would worry too. These are such difficult decisions! I actually had 3 lumps in my right breast, and one in my left. The biggest was grade 1, the others were grade 2. The fact it was both multifocal and bilateral made me worry too,and think seriously about having the chemo. I did ask my onc if that made things worse and he said no. The main reason chemo was suggested was cos of my age. But your lump was bigger. However, despite its size, you still had no node involvement. So I think it probably was just sitting there for a while, growing slowly and minding its own business. My onc compared my biggest tumour to a cocker spaniel, and the others to a Jack Russel (tiny node involvement). Yours sounds like my cocker spaniel, not aggressive at all. However, ca is ca, and if you have the funds, maybe you should do the test. I have read comments of a couple ladies though, who did the oncotype, only to still get inconclusive results and still be told it was a grey area. Another lady (@Dory65 ?) did it, and it came back she didn’t need chemo. Same ca type as ours I think. This bc business ain’t fun 😕. Good luck with your decision ♥️ Lol at the dog analogy. We've had 2 Jack Russells and the first one behaved more like a cockerspaniel but our current one - I would NOT want to have the cancer equivalent of that crazy little thing!! 😁The oncologist was very upfront that there is the chance the further testing also comes back inconclusive. In which case I think I would proceed with chemo. I found my decision of mastectomy versus lumpectomy so easy compared to this one! 😟

Ki67 results versus results from oncotype, etc tests

29 Replies

AllyJay
Member
5 years ago
I think the test would be useful if it gave an unequivocal "yes" or "no". I think that when people are told that they're in the grey area of maybe...perhaps..that the difficulties arise. Older members have heard me beat this drum before, but I'll repeat what I've said before. In the cancer world, each percentage point is valuable. I'f I was looking to buy a new dress, and the posters on the window said "4% off all dresses today"...I would probably walk on by. However, if a gunman entered a large school and shot dead 4% of the thousand children in the school...that would be 40 dead kids....not so insignificant now. Back in the day, when dinosaurs roamed the earth, I was a very active skydiver. All jumpers have two parachutes, a main and a reserve. The reserve adds about an extra 30% to the weight and bulkiness of the rig. It requires regular repacking and checking by a master rigger and costs quite a bit...(about three jumps). It also adds to the cost of the new rig...about the same amount. Statistics worldwide show reserves being deployed in roughly 1% of all jumps, but I've never met a jumper who doesn't have one. In all the 1634 jumps I did, I only ever chucked my reserve once, but boy was I glad I had one. Whatever your result, please ponder on this.
StrongCoffee
Member
5 years ago

Dory65 said:

Hi @StrongCoffee,
I've messaged you privately with my stats

See https://www.bcna.org.au/news/2020/02/oncotype-dx-again-rejected-for-medicare-subsidy/
“MSAC advised the Minister for Health that the evidence presented for Oncotype DX did not give the Committee confidence that the test would identify those patients who could safely avoid chemotherapy or those patients who would benefit from adding chemotherapy,”

However, my oncologist seemed to think the test is reliable, planned my treatment base on it, and said they would offer it to everyone if they could. (Please note they did not inform me of its existence - I was booked in for chemo - I only knew about it because my clever surgeon suggested it). It's certainly not a clear-cut, resounding vote of confidence, but I think I'm glad I skipped Chemo. Time will tell. It's been hard enough without chemo. Hats off and heartfelt best wishes to those who had/have to endure it and the side effect.

My oncologist seemed excellent in explaining options and so on. I'm a bit of a geek and read scientific articles for fun (well not really, but if I'm curious about anything in life I like to go straight to science). And I'm so surprised by the decision that the testing was not approved. The most recent, larger research definitely finds benefit in it for a specific group of women. It is definitely not of benefit nor should be offered to everyone, but you and I clearly fall into the 'perfect candidate for testing' category.

I had 20 minutes in the waiting room between seeing the surgeon and oncologist. Enough time to read up quickly on the specifics of why chemo was now on the table when it wasn't in any early discussions. I think that helped with talking to the Onc as I had a much better idea of questions to ask.

At the moment I'm strongly leaning towards getting the Oncotype DX done. I'm so grateful to be in a financial position that I can consider it (it will pay for itself if I avoid days off for chemo, as I have no leave left now) and saddened that other women in my circumstance have to forgo this testing.

Thanks again for your reply!
StrongCoffee
Member
5 years ago

FLClover said:

Yes, very understandable. I would worry too. These are such difficult decisions! I actually had 3 lumps in my right breast, and one in my left. The biggest was grade 1, the others were grade 2. The fact it was both multifocal and bilateral made me worry too,
and think seriously about having the chemo. I did ask my onc if that made things worse and he said no. The main reason chemo was suggested was cos of my age.
But your lump was bigger. However, despite its size, you still had no node involvement. So I think it probably was just sitting there for a while, growing slowly and minding its own business. My onc compared my biggest tumour to a cocker spaniel, and the others to a Jack Russel (tiny node involvement). Yours sounds like my cocker spaniel, not aggressive at all. However, ca is ca, and if you have the funds, maybe you should do the test. I have read comments of a couple ladies though, who did the oncotype, only to still get inconclusive results and still be told it was a grey area. Another lady (@Dory65 ?) did it, and it came back she didn’t need chemo. Same ca type as ours I think.
This bc business ain’t fun 😕.
Good luck with your decision ♥️

Lol at the dog analogy. We've had 2 Jack Russells and the first one behaved more like a cockerspaniel but our current one - I would NOT want to have the cancer equivalent of that crazy little thing!! 😁

The oncologist was very upfront that there is the chance the further testing also comes back inconclusive. In which case I think I would proceed with chemo. I found my decision of mastectomy versus lumpectomy so easy compared to this one! 😟
Dory65
Member
5 years ago
I think you should do the Oncotype, if you can afford it. More information is good. It might identify reasons not to do chemo - or it could strongly recommend it, despite your initial stats.
Sister
Member
5 years ago
I was never offered the onco test as mine was low ki67 but pleomorphic and in the nodes. However, my suggestion is, if your onc suggest it and you can do it, do it. As long as the results are something that you will consider in your decision. Chemo is not something to take on lightly but nor is it something that you should avoid if it is of benefit.
Dory65
Member
5 years ago
Hi @StrongCoffee,
I've messaged you privately with my stats

See https://www.bcna.org.au/news/2020/02/oncotype-dx-again-rejected-for-medicare-subsidy/
“MSAC advised the Minister for Health that the evidence presented for Oncotype DX did not give the Committee confidence that the test would identify those patients who could safely avoid chemotherapy or those patients who would benefit from adding chemotherapy,”

However, my oncologist seemed to think the test is reliable, planned my treatment base on it, and said they would offer it to everyone if they could. (Please note they did not inform me of its existence - I was booked in for chemo - I only knew about it because my clever surgeon suggested it). It's certainly not a clear-cut, resounding vote of confidence, but I think I'm glad I skipped Chemo. Time will tell. It's been hard enough without chemo. Hats off and heartfelt best wishes to those who had/have to endure it and the side effect.
FLClover
Member
5 years ago
Yes, very understandable. I would worry too. These are such difficult decisions! I actually had 3 lumps in my right breast, and one in my left. The biggest was grade 1, the others were grade 2. The fact it was both multifocal and bilateral made me worry too,
and think seriously about having the chemo. I did ask my onc if that made things worse and he said no. The main reason chemo was suggested was cos of my age.
But your lump was bigger. However, despite its size, you still had no node involvement. So I think it probably was just sitting there for a while, growing slowly and minding its own business. My onc compared my biggest tumour to a cocker spaniel, and the others to a Jack Russel (tiny node involvement). Yours sounds like my cocker spaniel, not aggressive at all. However, ca is ca, and if you have the funds, maybe you should do the test. I have read comments of a couple ladies though, who did the oncotype, only to still get inconclusive results and still be told it was a grey area. Another lady (@Dory65 ?) did it, and it came back she didn’t need chemo. Same ca type as ours I think.
This bc business ain’t fun 😕.
Good luck with your decision ♥️
StrongCoffee
Member
5 years ago
@FLClover thank you for sharing your experience. Mine is grade 2 and the size puts into up a level from yours as well.

However we have no idea how fast or slow growing it is beyond the Ki67 number. I could have had it slowly creeping around in there for years! There was over a month between MRI and surgery, and the removed tumour was the size measured on the MRI.

I love a bit of scientific reading, so have been reading up and if my cancer is a slow growing sort there appears to be no benefit to chemo. I just worry, as I guess the Onc team did, that given the size of it, just relying on the Ki67 to make that decision seems a bit risky.
FLClover
Member
5 years ago
Hello @StrongCoffee 🙂
Welcome. I had strong hormone receptive tumours as well, and was HER2 negative. My stage and grades both one, biggest tumour 1.5cm. I had a DMX. My onco didn’t think chemo was necessary, but also suggested I do the test. I didn’t have the money and said no. My Ki67 was 10%. He said it was a grey area, and it was my choice, but he recommended it cos of my younger age 39. I said if he was comfortable with me not having it, and knowing it wouldn’t really prevent a recurrence (his words) I chose not to have it. Chemo is harsh and leaves life long side effects, so I decided it wasn’t worth it for 1 or 2%.
Hope this helps. I think a few ladies here have done the test, so they might jump on to help you 💖

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Ki67 results versus results from oncotype, etc tests

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