Prosigna testing

Temple Member Posts: 42
Has anyone had gene testing such as Prosigna and how has it guided you in treatment decisions? How have you judged  a low risk of recurrence and would you decline any element of common approaches to treatment (chemo, radiation, endocrine therapy?) as a result.
Discussion on this site suggests to me that all of the hormonal treatments (Arimidex?) have horrible side effects that I would love to decline.


  • kmakm
    kmakm Member Posts: 7,974
    edited November 2019
    Hi @Temple. Please bear in mind that you'll get a higher proportion of people having troubles with their AI here than in the general population, because they come here seeking advice and help when they're having trouble!

    I had a genomic test to see whether chemo would be beneficial on my cancer and it was a clear yes. So I took a deep breath and did it.

    As to assessing the benefits of various treatments, you could ask your oncologist to take you through a couple of online tools that show the benefit to your cancer specifics. They translate to an averaged percentage improvement to survival. They're a bit broad brush but they serve as an indicator.

    It's your body and you're entitled to accept or decline any treatment. This question comes up regularly here and my response as always the same: make the decision that, should the worst happen and your cancer returns, you'll be comfortable with. No regrets, either way, you want to have no regrets. There's no right or wrong, just make sure you're not left saying "what if". K xox
  • Afraser
    Afraser Member Posts: 4,388
    Hi there, these are certainly hard decisions but two things to remember - most people gain some satisfaction from knowing they have done everything they can to have cancer once, recover and never have it again. Also that you can never know how a treatment will affect you personally until you try it - how it affects others may not apply to you. I’ve been on an AI for over six years - yes, I have some side effects but none of the most common ones - no aches, pains, flushes, etc. You have the right to determine what treatment you have but sometimes it’s worth trying it first before you decide - you can always stop. @kmakm is right - many people here are looking for solutions to side effects. Many who don’t have them may not even enter into those conversations. Best wishes whatever you decide. 
  • AllyJay
    AllyJay Member Posts: 948
    I agree with the last tow comments. There are many who probably aren't as vocal about not having many side effects to AI therapy. Imagine a group of pregnant mums at a clinic get together. You have one mentioning severe back pain, another ongoing all day sickness. Another has terrible heartburn and one with repeated thrush infections. For some present who are sailing through with nary a negative symptom, they would be in a quandry. Should they say they are 100% well? I think not. They might come across as being somewhat smug, and so say little.
  • Temple
    Temple Member Posts: 42
    Thanks for all the info and perspective - has really helped. Hoping there is the prospect of only mild side effects. I will give it a go! 🙏