trying to decide on chemo based on oncotype

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Hi,

is anyone else annoyed that you are told you probably wont need chemo and then oncotype dx of 28 results mean now you are eligible...how to decide??

  • Hi Iman, when I had my biopsy, mammogram and ultrasound I was originally told I probably wouldn’t need chemo. However once all the results came through my plan changed and chemo was added to my plan. I wasn’t annoyed, I was glad that it had been picked up and that hopefully by having chemo any rogue cells that had come away from the tumour would be blasted. Scans will only pick up certain sizes and it won’t detect microscopic cells that could attach themselves somewhere else and start another tumour. Surgery can remove tumours and you can get clear margins, chemo with help blast any rogue cells that maybe circulating, radiotherapy with target the main area where tumour was and targeted treatment will help with the HER2 positive if you have that. Hormone treatment will add to help prevent reoccurrence. I had the whole lot and hope that my chances of reoccurrence are greatly reduced. Whilst chemo is not something anyone really wants it’s doable and has changed so much over the years. You can click on my name and read my biography about my journey if you like.


    It’s everyone’s own decision on what they feel comfortable with doing. I wanted to give myself every possible chance.

    Wishing you all the best

    Hugs from cuffcake x x x x x

  • Thank you for your response.  And for sharing your journey.  Do you still have peripheral neuropathy?  That is one of my main worries.  

  • Hi Iman, yes I do but it has eased a lot since finishing chemo. It’s only in my feet. I have lidocaine plasters that I used overnight. During the day I have Doxepin cream. I have found both of thoseBlushogether have helped a lot. As I still have targeted treatment one of the drugs can still cause neuropathy but I’m hoping when I have finished it will go completely. It would be nice not to have it but I think it’s a small price to pay for keeping my life BlushKissing heart

    If you do start to find you have problems with neuropathy as treatment progresses speak with your oncologist and chemo nurses as the dosage can be adjusted to help. I didn’t start to have anything until my last dose. 

    Hugs from cuffcake x x x x x

  • If it helps I had an oncotype score of 29 and was told it would reduce risk of  recurrence down significantly so it was a no brainer for me. My research said below 15 no chemo between 15 and 30 was a decision to be made and above 30 definite chemo. So 29 to me and my other half was a no brainer. A shock to all the family as i had expected just radiotherapy after surgery and everything done by Christmas 22. I've now completed the 7 sessions of chemo and have just started radiotherapy. But at least I know I've done everything possible to avoid a recurrence. 

  • Hi, I know what you mean about being annoyed. For four months, I was told I "probably wouldn't need chemo" in my situation. (I had surgery first.) When my oncotype dx score came back as 32 after my surgery, I was completely floored. However, I'm doing the chemo now and it's nearly done, and I'm glad now that I'm doing it (as someone else said, it's a chance to blast any rogue cells that might have broken off the tumour). But you're totally entitled to feel annoyed or to feel anything you need to feel right now. I was given a statistic that 70% of women in my position wouldn't need chemo, and I was so blindsided and incredulous that I was in the 30% who did. But...I'm trying to now see the chemo as an opportunity to safeguard my future. 

    If it helps at all, chemo isn't as bad as I thought it would be. There are so many meds now to help us through it, and there's cold capping too (if you're eligible for that). The time will pass either way and chemo will become a memory. But I know how hard this point in time is for you, so please be kind to yourself. Best of luck with your decision.

  • Hi Iman 

    I know exactly how you feel!!!!!  I was HER2 positive which is why I needed chemo otherwise I would have been straight to radiotherapy + Hormone treatment.
    It is a really personal decision and there is no right or wrong answer. What I would say is that, treatment is tailored and it is not a one size fits all approach. I am more than half way through now and chemo is not as bad as I thought it would be as they have medication to ease the side effects. Good luck with your decision and the best of luck with whatever you choose. 

  • Thank you for your response....i'll be starting chemo this week. how are you getting on?

  • thank you for your response...i'll be starting chemo this week.  how are you getting on?

  • Hi, thank you for your response, i will start chemo this week.  how are you getting on?

  • Getting on well thanks. Radiotherapy has now finished so it's ongoing medication and injections. All the best with your chemo.