Hi, l went today for what I thought was radiotherapy planning meeting and the oncologist told me that radiotherapy and hormone treatment might not be best for me as the cancer removed was not conclusive for positive receptors for hormones. So shocked so that not might be exactly correct. Was then told chemo might be the route to take. It was stage two and sentinel lymph nodes were clear. If l understood correctly, there was a tiny leak from the tumour. The bottom line is l have to decide whether to go ahead and do chemo, when it might not give me any benefits, do radiotherapy and tablets, or pay for oncotype DX test in Switzerland as it is not available here in Malta. I believe the test will tell me if chemo is suitable for the type of cancer l have. I don't mind the cost but am worried about the delay in starting any treatment. I was operated on August 18th. At my check up the surgeon told me to celebrate as results were good so l am in total shock. Today l was given details about chemo and the word oncotype DX on a piece of paper to do my research. Have an appointment next Tuesday to give reply. Phoned hospital two hours later to give response but they told me to wait until next week. Am devastated. Any advice please????
Hi shaz, I’ve been very lucky - my score was only 8- it’s what they classify as a low risk of recurrence. So as I am post menopausal ER+ and HER2- the latest research only published in December 20 says no benefit to me of chemo. If I’d got a higher Oncotype Dx score or I’d been premenopausal my oncologist told me I would have been advised to take chemo (5 cycles EC and 6 weekly cycles of paclitaxel).
Gwills, I only had a lumpectomy so not as much removed as you. My bra from m&s is called a post surgery bra. I find it really comfy. Cotton, no wire, thick back strap, nicely padded, thick band all around the front underneath the cups. I’ve worn it all day and done my exercises wearing it. You could order it and send it back if it doesn’t work for you when it arrives - it being M&S! Not too expensive.
im sorry to hear about your arm sensation. They say we need to keep an eye open for lymphodemas now. But you are exercising and they say it’s good to keep that up. Do you have a friendly breast care nurse you could nip in to see if it gets worse?
I can’t believe the things we have to deal with! I’ve just started letrozole and in 2 weeks have developed a nice case of bacterial vaginosis. Yuk!!!
The report is done by a company in the USA. They receive a sample of your primary cancer and test it for 21 genes. From the results they get they give you a score. I think in theory from 0 to 100. The higher the number, the more likely your cancer might reoccur. If you are in a low risk score (below 10) your oncologist may advise you don’t need chemo. The test can only be used for some types of cancer and for early stage cancers. The NHS is a big big and miss on funding but done women (like me) go private to get it done - you’d need an oncologist referral to organise it if course. The report result is called an Oncotype DX score.
thank you for your best wishes. I send the same to you xx
Hi. My score was 11. I meant the report issued dec 20. Sorry didn’t explain myself. Because I am post menopausal I needed a score under 25 not to have chemo. Being 11 I was happy. Great that they look at your own genomes.
min on tamoxifen with an option to go on letrosole. I don’t get any side effects with tamoxifen and rather against going on letrosole but I’m not sure why I’m not on it. I will ask my consultant when she rings me in a couple weeks.
best wishes xx
Hi Gwills, the December 2020 thing was early published results of a trial called RXPonder ran by Oncotype Dx. My understanding is they found out in this trial that you can step down from chemo if you are post menstrual BUT if you are pre menstrual there’s still a benefit from chemo even with a low score. You can google to see a summary of the trial.
My oncologist said I was going on letrozole from day 1 - no option given! I asked him why and he said research has shown letrozole is more effective at reducing cancer recurrence. I did some Googling after our appointment and what I saw seemed to agree with this. He said some women struggle with letrozole so tamoxifen would be my back up if I didn’t do well on it. So I’d be interested to hear why you’re on tamoxifen …..
Hi Shaz, I’m post menopausal. Grade 2, 23mm, invasive ductal, 1 lump node positive with metastasis, ER and PR both 8/8 positive, HER2 negative. Oncotype score 8.
Aw I’m so glad things are going well for you
We didn’t pay for my mums, but if I ask the secretary do you think she will Send over the report?
I did ask the nurse regarding the pathology result when she told the results, and she did say she will send it but seems like she has forgotten about it. Just seems like I have to do multiple phone calls for everything or else it doesn’t get done…
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