Breast cancer oncotyping?

[NeonHalo]

My wonderful mum (70 years) has recently been diagnosed with lobular breast cancer. The tumour was a whopping 5cm and she’s had a mastectomy. Biopsy came back to say it’s grade 2, oestrogen positive and HER2 negative and initially we were told she would need radiotherapy and 10 years of letrozole. This all felt manageable.

Unfortunately last week she found out her sentinel node had some cancerous cells in it so she will be having surgery next week to take out further lymph nodes for testing. This is so disappointing and the consultant seemed surprised as the sentinel node looked normal (by sight) during the mastectomy and underarm ultrasound showed no issues. She’s now been told that her tumour is being sent to California for oncotyping to see if she will need chemo. We’re so confused as we’re told at the start that her type of tumour doesn’t respond to chemo at all! She’s so distraught as chemo is a big fear of hers. Is this a sign that things are much more serious than we thought? I know lymph node involvement isn’t great.

Just wondering if anyone had any experience or knowledge of the above. Thank you.

Sending a gentle hug, it's such a tough time, waiting for test results, but once a treatment plan is in place, it will get easier.
I'm 55 and went through this 5 years ago.
My cancer was ER positive, HER negative, 17mm, grade three and in 2 lymph nodes....the 2nd node was just s single cell.
I was offered the oncotype test, but turned it down as I had already made up my mind to take the chemo if offered, and the oncotype results would have meant another 3 week wait.
The oncotype test is usually requested if you are borderline for chemo.
Chemo is not pleasant, but doable.
There are so many drugs available now to counteract the vomiting and other side effects.
It's a long slog, and the fatigue is cumulative, but your mum will get through this.
If you have any questions about treatment, I am happy to answer them xx

No medical knowledge but former breast cancer sufferer.
I would guess because nodes are involved they will want a belt and braces approach.
All I can say is that while chemo is unpleasant it's seldom as bad as people fear. It also gives that extra reassurance that every possible avenue has been explored.

@NeonHalo What a hard time for your mum. She can be offered chemo but you could support her in turning this down or exploring what the pros and cons of this would be. At her age, quality of life is essential and risk of secondary infections not insignificant. She can decide what she does and doing nothing is a valid option for her.

@BCSurvivor thank you for your very kind reply. I’m so pleased to hear you’re doing well five years on. This testing phase is exhausting but I guess it’s positive there are more nuanced approaches to treatment now. We’re hoping to get the oncotype results soon but I guess it will depend a bit on how many lymph nodes are involved. Thank you again.

@RedHinge thank you, that’s very true. Maybe worth seeing it as an extra level of protection. My mum had a body MRI and bone scan which came back clear so that’s reassuring but just scary not knowing how many cancer cells might be working their way through her lymph nodes. I hope you’re well now. I appreciate your reassurance about chemo.

@fourelementary that’s also a really good point. I’ve read that oncotyping can sometimes offer you a statistic eg chances of reoccurrence whether you have the chemo or not and if it’s a minimal difference I can see my mum turning it down. She’s a very healthy and active person and her quality of life is essential. We can of course support her with this decision if needed.

It was put to me that chemo can "mop up" any cancer cells that surgery / rads miss.

Your mum is only 70 and is healthy and active, all the more reason to take the chemo.
If the cancer was advanced and incurable I could see the logic in declining treatment and aiming to maximise the qualty of remainder of life. But 70 isn't elderly and the cancer is curable.

Thanks @RedHinge your post really lifted me. She has a lot left to fight for. It’s so hard not to get caught up in risk and statistics but at the heart of it she’s in good shape and should probably take anything she’s offered.

I understand yours - and your mum's - reluctance to take the chemo if offered, it's such a personal decision, and only your mum will know what's right for her.
But please don't be swayed by the side effects of chemo.
I was terrified of chemo, because of my own preconceptions and also because I'd never seen anyone I knew well go through it.
I cried through the first session, but they did get easier as they went along.
The side effects are real, and the first chemo is probably the hardest as you get a standard bag of drugs to take home with you.
But this can be tailored to suit you as an individual - for me, it was vomiting, but once the oncologist added a stronger drug for the next sessions, I was fine.
If chemo is offered, be prepared for self injecting - I wasn't - until I was handed a bag of seven pre loaded syringes after my first chemo to administer at home!

@BCSurvivor you’ve been on such a journey, thank you for sharing your experiences. I think it’s so easy to build chemo up into something completely unbearable in your head when hopefully with the right support she’ll manage okay (if it comes to that.) Her biggest fear is the nausea and vomiting but hadn’t considered that she could have anti-sickness meds and things. One step at a time I guess.

Oncotype will look at the molecular make up of the tumour and provide a "risk" of the cancer returning with and without chemo. It helps spare those chemo where they are low risk for recurrence and ensures those that need it, do get it. Hope that helps.

Just thought I’d update this thread - you were all so kind.

My mum’s oncotype score came back as a 10 which is low risk but unfortunately she has extensive lymph node involvement so will be having chemo. If I’m honest I don’t understand why she is having chemo if the tumour and it’s cells aren’t thought to be responsive to chemo (and because I don’t attend her appointments with her I don’t get to ask these questions.) Would be great if anyone knew why this might be? I assume because of the risk of the cells migrating. They took out 21 nodes and cancer cells were found in 7 of them. She is taking letrozole and will
also be having radiotherapy after the chemo.

thanks in advance 🙂

Hi, @NeonHalo the oncotype test looks at the whole makeup of the tumor.
The tumor can be a grade 3, fast growing and aggressive tumor, yet still score low on the oncotype test.
Admittedly, 10 does seem like a low score to be having chemo, but every tumor is different.
It also takes into account menopausal status and lymph node involvement.
Normally the oncotype test is only offered if there are 0 - 3 lymph nodes involvement, as more than that is usually automatic for chemo.
I would imagine that the hospital is giving the chemo due to 7 lymph nodes being involved.
The chemo is more belt and braces, to mop up any stray cells that may have migrated away from the original tumor site, and these stray cells will usually be receptive to chemo.

I have lobular breast cancer. I had several tumours, the largest being 4.5cm. No lump. I had the oncotype test and chemo was not recommended. I’m 55.

I has similar lobular 5cm cubed lump and second 17mm lump, 1 lymph node, grade 2, her2 neg, hormone positive. Mastectomy then full lymph node clearance, prosigna test showed chemo needed, chemo, radio, 10 years Tamoxifen, aged 48. Also terrified of chemo. Chemo does work on lobular, also lobular often evades scans, my lymph node was also clear on scans. Nausea wasn't bad, I had ondastetron tablets and it stopped that. It was pretty awful but 12 weeks of it. Predict Breast online gives results of chemo benefit if Google Predict breast. Sorry about your Mum.

Purpose is to reduce risk of reoccurrence which would be at stage 4, in my case its a 6% reduction so 6% more chance alive in 10 years than no chemo. Results from Predict breast.

Putting your Mums data in Predict Breast with chemo she has 51% chance of being alive in 10 years, without 40% and 15 years data is 23% and 33%.

@BCSurvivor thank you for writing (and always being so helpful) I guess I assumed that any stray cells that might find themselves in her lymph nodes must also not be that receptive to chemo if her main tumour isn’t but clearly that’s not necessarily the case (and they wouldn’t suggest it if not needed.) We trust their judgement and just have to wait for an appointment with the oncologist now to get things started. One cycle at a time. Hope you’re doing okay your end.

@TrueScrumptious so sorry to hear about your diagnosis. Good luck with your treatment. So good you can avoid chemo.

Thank you @Silkierabbit but sorry also to hear about your diagnosis. I hope you are bearing up okay and things are looking positive. I put my mum’s info into Predict Breast too and was 75% for 5 years which actually isn’t too awful (can’t look ahead 10 years yet, too scary to think about but thank you for doing that for me)

@NeonHalo thank you x
I'm five and a half years on from active treatment now, I should...hopefully...have my last yearly mammogram next month and be officially signed off from the hospital.
Hopefully!
I'm on exemestane for up to 7 years, I struggle with it a bit, but it has less side effects for me than letrozole did.
If your mum struggles with letrozole...and the side effects can be awful, like an exaggerated menopause...there are other als that may suit her better, like anastrozole oe exemestane, so definitely encourage her to talk to the oncologist if she is struggling x
I would also recommend a Maggies Centre, for you and your mum, if there is one locally.

@BCSurvivor 5 years is such a milestone, I’m so happy for you. Wishing you all the best for the future 🙂

My mum has been on letrozole for 7 weeks now and has had minimal side effects so that’s good. They’ve said she’ll need a second hormone blocker combined with it though after chemo so am hoping that the two together don’t make things too unbearable. This hadn’t been mentioned before so assume sadly another amendment to her treatment due to the lymph node involvement. At least they are throwing everything at her I suppose x

One thing that is supposed to double your chance of not getting reoccurrence is exercising 3 to 5 hours a week after treatment finishes - that may not be that easy but anything can do towards it would help. I do swimming but can be any moderate exercise and if that's not possible lighter exercise like walking I would presume would still help.