Not sure if this message is in the right category but has anyone made the decision not to have chemotherapy because you felt the side effects outweigh the benefits with low Predict percentage? My oncologist didn’t seem too concerned about my pathology results even though I have macrometastasis in one node and my NHS Predict result was 3% (so borderline) and the only reason would be to avoid reccurrence. I’m finding it hard to make the decision whether to have it or not? Has anyone been in a similar situation and what did they decide to do?
Hi CeliaRose,
Thanks for posting. This must be a really difficult decision for you. If you would like clinical advice or just someone to speak to about your concerns, you can call our Helpline on 0808 800 6000.
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Best wishes,
Saskia
Hi CeliaRose - I’m sorry I can’t help you with your specific question, but you might want to search on the forum with the word “oncotype” and may get some more help from previous threads. I wish you all the very best with whatever decision you take - I wasn’t given an option, I was told to have chemo. Evie xx
Hi I am in the exact same position as you was given a day to decide but am taking Easter and need to find a way forward this week . My ENDOPREDIT score was 11 (1 to 10) is low and 11 + is high . I have 3mm cancer in one sentinel node and my original grade 2 cancer was downgraded after my mastectomy to G1…I have been going go backwards and forwards as I really don’t want Chemo due to side effects and want to get my life back but also don’t want any regrets …it’s so hard …
Hi
I read your original post with interest. It is a dilemma and one where we want to find an easy answer when there isn’t one. I was slightly taken aback by your comment that the ‘only’ reason for taking on chemotherapy would be to prevent recurrence. Isn’t that the point of all adjuvant therapies? Isn’t that our objective? This isn’t a decision to be taken lightly (not that you have). The prediction tools only produce statistics. 3% sounds a negligible difference but it’s not for some. To arrive at that figure, the tool is including all those who’ve had no recurrence and all those who have - and no one can be certain whether they’ll be one or the other.
If your oncologist is confident that you face a very low chance of recurrence, then trust your oncologist. But also consider what kind of person you are. Are you the type whose mind will keep harking back to the decision and wondering if it was the right choice? Are you one of those who will obsessively search for the slightest pucker every week, sometimes every day, because the fear of recurrence is so great? I knew I was at high risk of recurrence but it still never occurred to me that it actually would happen so I never thought about it. Not that it would have made any difference. It happened. I was the wrong side of the statistic.
People have strangely fixed ideas about chemo but we rarely hear or see anything about those people who actually sail through it virtually unscathed. If it weren’t doable, few of us would be here to share experiences. I’d say look deep inside yourself and work out how your future is going to feel if you do or don’t go ahead with the chemo option. If you are confident you can let it all rest in your past and move on in a healthy way, then opting against it is right for you. If you have any doubt, this could be an opportunity missed that will hold you back in cancer world emotionally if not physically, which isn’t a great place to be.
Be happy with your decision but don’t be misled by statistics x