Hi all, this is my first post on here!
I got diagnosed in March, have had a lumpectomy and nodes were clear. Had 5 agonising weeks waiting for my Oncotype score, which was a very low “9” so even though I had a grade 3 /30mm cancer I am being spared chemo and start radiotherapy next week. My question is, whilst I am absolutely over the moon with my score, has anybody on here also had a low score but then had a recurrence??? I desperately want to believe that the score is accurate but want to be fully in the know about the accuracy of this …. Many thanks for reading x
I don’t know for sure about low score and recurrence rates but I am over the moon reading that you had a low score with a grade 3 tumor. I have a grade 3 tumor, ER/PR positive, HER2 negative and I didn’t know if it was possible to have a low score with oncotype as a result. You give me hope and I thank you for that. I’m going into surgery next week.
I have read up a lot though in general and know nothing is guaranteed with breast cancer. But your low score is a huge positive and I personally think you can rest in that as you continue your recovery. I am assuming they will start you on hormone therapy and for the large majority of people with low scores that’s enough. Congratulations and I wish you the best!
Hi, I’m the same. Grade 3 tumour removed via lumpectomy and just got oncotype result back which was an 8. While I’m really pleased with the result, I am nervous as well about no chemotherapy if you know what I mean. My tumour was also 8/8 oestrogen positive.
I cant help on your question.
But gives me hope as im a grade 3 and waiting on oncotype results.
I think oncotype dx is a fairly recent test so it looks at the genetics of the cancer and calculates a score based on this. My oncotypeX score as of December 2023 was 14. I am now 67. The likelihood of recurrence is influenced by whether you are diagnosed before or after aged 50.
I imagine if you are diagnosed before age 50 you potentially have more years ahead for breast cancer to recur than other people who are 50 plus.
I was first diagnosed in 2003 when the oncotype DX test wasn’t available. At that time I was 48 years old. I had left breast grade 1 cancer, no lymph node involvement and radiotherapy and I was prescribed tamoxifen. I did the Predict Test which gave me a very low score for recurrence. I did not take tamoxifen for long, maybe a month or so.
I got another kind of breast cancer in the same left breast 19 years later. At 67 I could be 86 if it comes back again but maybe not. Any woman who has had breast cancer is more at risk of getting breast cancer again than other women. That’s what leaflets say but the do say it’s rare to get it again. Unfortunately it’s not zero.
My new primary may or may not be due to my not taking tamoxifen last time I had treatment. I chose not to take it because I didn’t want to have any further breast cancer tests or pils of any kind, and I could get on with my life without consulting doctors. I was influenced by the Predict test which indicated I wasn’t at all likely to get a recurrence in the next 5 or 10 years.
I worried a lot anyway, at least for the first five years, as this is the most likely time for breast cancer to come back. At least that was the prevailing wisdom of the time.
Last year about April 2022, I found another two lumps, in the area where I had had surgery before. This proved to be a new primary and a cancerous lymph node in my breast. Very few women have these intramammary nodes so I am an unusual patient as far as lymph nodes are concerned.
Unfortunately I had to have a mastectomy because I’d had radiotherapy already on the left breast. I had a diep reconstruction in September 2023 which at least means I have something that is warm, and breast shaped - although without a nipple.
I have been prescribed letrozole for 5 years, three years of zelodronic acid iv infusions (twice a year i.e. every six months).
Every morning now I wake feeling suicidal at around 6.30 am which may or may not be due to letrozole side effects. I feel fine now at 8.20 pm. Weird but true. I am going to report this side effect to my oncologist this month which will be a six month review since I started taking letrozole.
The side effects haven’t improved yet. I also have carpal tunnel pains in both hands, constipation, and worries about long term osteoporosis. We shall see what my oncologist says when I have my telephone appointment on 17 April.
The usual response is “this is the protocol for your treatment as decided by the MDT!” MDT stands for Multi Disciplinary Team. They do like their initials. Multidisciplinary is one word. But they use two initials for it - I think.
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