Chemotherapy Dilema

Hi Alice,

I'm currently waiting on the results of entering the Optima trial https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-predict-when-chemotherapy-needed-breast-cancer-optima#undefined , which is currently running across many UK hospitals and in Norway. It uses Prosigna rather than Oncotype (the NHS looked at the results of a number of these tests and went with it because it seemed clearer, and tests 50 markers for how aggressive the cancer is and also how it might respond to chemo) .Half the women are randomised for chemo anyway, then the other half profiled, with those who are low risk (lower than the 4% we fall into) having no chemo. Your oncologist won't know which group you are

I've swung backwards and forwards on this too, and to be honest whilst waiting for the results have actually come to hope that I get it even though I really don't want it if that makes sense? The NHS use 10 years as their figure, but if you Google Predict and breast then you'll see that the 15 year figure is 7%, though (so maybe 3-4% low risk, and that's what's swung me to wanting it..

Did they remove some more of the nodes or do an actual clearance? I had 1/2 sentinels affected and then my surgeon removed all three levels to the high axilla (I type this 4 weeks later with arm raised on a pillow!) and the rest were all totally clear thankfully:)

Hi

Thank you for your reply. I had clearance and 1/6 nodes effected with 4mm disease in sentinel node. It’s a dilemma risk v benefit of chemo.

Alice M  

I know.  I asked my surgeon if it could have gone through the rest of the nodes (I was 1/11 in all 3 levels) and he said no.  I asked about the internal mammary nodes and he said too far away The sentinels were on the armpit side,  as was the tumour.  I asked about vascular spread and my pathology report said no vascular spread (through blood vessels into the circulatory system without the nodes). Who knows,  but the more you know the more informed your choice will be.  Good luck either way:)

I am so impressed with your knowledge on your disease and am so pleased that you sent a reply as we seam to be in similar situations.

I am a great believer that knowledge is power. I might get back to my oncologist and ask a few more questions .

There are some very difficult decisions to be made on this journey and you are right they may as well be informed.

I hope you have a speedy recovery with your arm.

Please keep in touch

Alice M  

Thanks Alice, 

Let me/us know what you decide.  And fingers crossed for both of us! X

Oh well,  i tried to dodge the but it's chemo:( Oh, well,  I'm now off work until Christmas as i work term- time only in a school. It might be pointless,  and it might make me ill,  but who knows?

Hi Londonmumof2

Did you make the decision in the end? What chemo are you having and when? I'm just over half way through now so any questions please ask.

Xx

I'm going with it as I opted into the trial, and can't decide either way. It's galling that the Predict website has slightly downgraded the benefit of chemo for me, presumably based on new stats, but hopefully it won't be the nightmare I'm imagining it will! I'll have 4 x EC on 3 week cycles, and 4 x T on 2 week cycles starting on the 15th.

My daughter wants to cut my hair in a bob, which we'll do next weekend and try the cold cap, and I'll just try to be positive and not imagine the worst. How are you finding it?I see that it came back triple negative. Do they think it's a different cancer?

Hi Londonmumof2

I have decided not to have Chemotherapy. My predict score was 4% at 10 years and 5% at 15 years. I have decided this based on the guide lines 1-3% no benefit , 3-5% benefit unknown, over 5% benefit.

My oncologist had said that she was not recommending chemo but it was my choice. I had spoken to my nurse about Oncotype dx and she said that predict was fairly accurate and having the test done would probably come back being in the intermediate group. She said I was better to go with my gut instinct. I was swayed by the fact that I have a 4% benefit with 3% risk. 

If only we had a crystal ball.

I hope all goes well for you and please keep in touch x

Alice M 

Hi Alice,  yes,  a crystal ball would help:) I'm seeing my doctor on Monday for a medical certificate and will tak fo him about it as I've known him 14 years and we're on first name terms.  I have an appointment with my clinical psychologist on Monday afternoon so will also talk to her.  I feel well now (which ididn't before diagnosis) and my surgeon who i trust said it was gone and extremely unlikely to ever return.  He changed his schedule to operate on me as an emergency surgery due to my distress as ifelt a real urgency. In the two weeks from scans to surgery it had grown 4mm, and was 2mm from my chest wall,  so even a weeks delay could have been fatal, and his kindness is something I'll never forget. My oncologist was happy for me to skio it in the trial, saying the hormones are more important

The only reason ithink I'm currently going ahead with chemo is ther 'what if' factor,  and my 15- year percentage... but then if what they say is true it will be a survivable illness by 10 years time. Also ther 12 deaths vs  7 deaths at 15 years.  And my half- sister died from a15 year recurrance 3 years ago.