Like you, I never had an oncotype test either. I had never heard of it at the time I was diagnosed so it wouldn’t have occurred to me to question it. I’ve since found out that the test is used to determine whether or not you would benefit from chemo, so if there are other factors which would already suggest the use of chemo (eg larger tumour, nodes involved, HER2+ or triple negative) then the test is less relevant. I had node involvement so chemo was recommended on that basis alone so there was no reason for the oncologist to request the oncotype test. Hope that makes sense!
I remember how hard this was for me, who was also left to decide … Following advice at the time, and although, at first, I was totally against it, I decided to have chemo.
Seven years on I am living with stage 4 widespread metastatic disease in my bones, and now in my liver and orbital of my eye.
I don’t think I could have forgiven myself if I didn’t have chemo…As I know now I did everything I could at the time to stop it from coming back!
Morning x
My score was 31 and i had chemo. Thank goodness i did as they later found cancer in my rib despite good margins and no nodes involved in the original breast. I have now finished treatment and there is no signs of active cancer . A very personal decision but i like to think that the chemo blasted those little horrors looking for a new place!
Xx
Hi, I had a double mastectomy after breast cancer in my right breast and family history. I wasn’t offered either, a slim chance of getting it back but unfortunately 4.5 years later I did, possibly due to reconstructive surgery a bit left behind so they changed my medication and I had radiotherapy. Sadly Iv now got it for a third time but because of what Iv had done they don’t know if it was cells left or via the blood chemo is now my only option. If you are cleat now the decision is solely yours, but I wouldn’t have but if after getting it for a second time if I had have been offered I would have considered it.
You need to ask yourself is it a one off not in your family if it isn’t then don’t destroy your good cells unless it did return, what dosage would they give and side effect and the % of it returning with or without chemo. If I knew then that I would get it a third time after a double mastectomy I would have asked for it on the second time.
Remember your records get discussed with a big team meeting on your best interest but only you can answer do you want to put yourself through it now as you could sail through life never getting it again. I wish you well whatever you decide but only you can say yes or no.
My 4mm tumour which was removed in May discovered an 8mm tumour + 17mm of DCIS, neither of which has been picked up on mammograms or ultrasounds, so my result in June showed cancer in the 2 lymph nodes removed, was shocking! My oncotype score was 14, so no benefit in chemotherapy, but my 5 days radiotherapy had become 15! I have no faith in mammograms as they failed to detect my other tumours + only the tiny 4mm tumour, and I was told by two doctors that it hadn’t spread to my lymph nodes - yeah right! I will never be free from this mentally or physically So sorry for your dilemma
Hello there you can ask your consultant to do a ‘predict’ test score on the computer for you. Each diagnosis is very individual and you need to do lots of research. I made a decision based on my own circumstances not to take Letrozole for 5 years as the ‘predict’ test score showed me that by taking it, it lowered my risk of the cancer coming back by 1.4%. For me the possible side effects of Letrozole outweighed the risk of the cancer coming back.
Dear Percypig
It is such a hard decision to make. There are so many factors at play. I have also been thinking of posting just as you have done - reading your post it almost exactly mirrors my own situation. It was confirmed that the lump I had found in May was cancerous in early July and 3 weeks later I had it removed and sentinel lymph node biopsy done - the waiting for the results took another few weeks and this was hard, but finally was told that the margins were clear and that it hadn’t spread to lymph nodes, which was such a relief. Mine is hormone positive but HER2 negative. Like you, they said I should have 5 days radiation and should start oestrogen blocking meds but I accepted the offer of oncotype test and it comes back saying high risk, which was really not what I wanted to hear… I am 46 and don’t think I want to put my body through the chemo and the affect that will have on my body but it’s all very scary reading the comments other women have posted in response to your question.
I wish you all the best with your decision making and your journey on from here.
I’m on weekly Paclitaxol and it’s not easy. But think carefully of your future, what if the cancer returns and you had the option of chemotherapy and you refused. The cancer may or may not come back but having all available treatment means you did your best for you and your families future life.
I discussed this the other day with a nurse during my treatment, they had several stories where people regretted not having the chemo. Obviously it’s your chose, talk to friends, family and your team.
I was in exactly the same position this year. I had an oncotype score of 10 which indicated that I would not benefit from chemotherapy. I had no node involvement and clear margins. I have just three more sessions of radiotherapy to go.
I too worry about my cancer returning and somehow felt that by not having chemotherapy, I would not gave thrown everything at the cancer.
Now hearing your story it again raises this question in my mind.
I hope that you get sorted and that they are able to offer some treatment. Take care xx
I was the same . Didn’t expect a high oncotyoe test. I did chemo I’m not sure if I’d recommend it as I was very sick and didn’t finish to. Only thing that pushed me to do it was you only get one chance - so if it came back I’d regret it
. A very personal decision but i like to think that the chemo blasted those little horrors looking for a new place!
So sorry for your dilemma 