How do we know if chemo is being effective?

Hi Chyebren, I had chemo after my op too and was told that there was no way of measuring its effectiveness other than statistically.  The oncologist said that I could very well be cured by the surgery I had but chemo was recommended to lower the risk of it coming back.

When I questioned how will we know if chemo worked once I completed the cycles, the answer was that we will never know if I was “cured” with or without the chemo! I opted to have chemo anyway and looked at it as giving up 6 months of my life to improve my chances of a cancer free survival but will never know for sure if  having it will influence the outcome in my particular case.  

From what I can gather adjuvant chemo is all about lowering risk based on past disease free survival statistics of people with your cancer type, grade & stage who opted to have it. 

I have to say it took me a while to get my head around this - I felt it was like shooting in the dark just hoping to kill off any rogue cells that may or may not even be there in the first place!! 

When I was making my decision chemo or no chemo, I watched a very good programme with Hannah Fry which discussed this.  It’s called Making Sense of Cancer.    It wasn’t the absolute deciding factor for me but I’ve gone the no chemo route.  

Hi Meanegg,

Thanks, it’s really helpful to know that I’m not the only one of us “shouting in the dark”.  
If that’s the way it is, then I’ll take it, as it seems to offer a chance of more time cancer-free, and that’s probably worth exchanging 6 months of my current life for. You’re better than me at asking questions of the medics - I haven’t talked with the oncologist about this yet - but I will do at the next appointment. Best of luck to you, Chyebren

Hi Ochno, Thanks so much for your reply. That’s a courageous decision to make, I hope it works out really well for you. I was told that 6 months of chemo might give me a 3% greater chance of living 10 years cancer-free, but as I’m already in my 70s, I’ve had a hard time trying to work out if I’d rather have my 6 months of relatively good health now, or swap that for the chance of a longer life when I’m 80.  I’ll see if I can find a copy of the programme you mention, maybe it will help me make a bit more sense of this strange situation too. All the best, Chyebren

I’m 65 so not too dissimilar.   I was quoted 2-3%, obviously no guarantees but feel I’ve bartered quality of life now for taking my chances in the future.  My situation is slightly different in that I’m in Spain and really have no confidence that if I had a severe adverse reaction to chemo that the outcome would go well for me.     As it stands, I’ve had my op and radiotherapy and now feeling pretty much fighting fit.  Long may that continue!  Wishing you all the very best with your journey xx

Hi Ochno, well I found Hannah Fry’s programme on the iPlayer and have watched it. I wish I’d seen that before agreeing to chemo, my decision might have been different. Thanks so much for pointing me towards it. Now that I’ve already started chemo, and bought a wig , I will continue, but I really respect your choice not to get onto the chemo conveyor belt. Making choices like this is hugely dependent on the ability and willingness of the oncologist to communicate all the facts and opinions, and mine wasn’t good at that. I came home with my head reeling (I expect we all do, to some extent) and started Googling to try to understand what I thought I’d been told. It wasn’t a good experience. It’s a real shame that even after all this time of oncologists offering chemo to breast cancer patients, most of us still do not understand what they think they’re telling us. I would have hoped for a better, more professional, start to this journey. Perhaps at the other end I can feed back my experiences to the hospital and make some sort of a difference for future  patients. For now, onwards and upwards.  Very best of luck to you too, enjoy the Spanish sunshine!  Chyebren

I have just watched this on you tube. I will possibly have this decision to make on Wednesday.  What an eye opener!! I thought I had made my decision but not so sure now. Will have another couple oferious conversations with husband and more thinking. Good luck to everyone with their treatment

I liked that she also discussed side effects of treatment too. A good program I thought.  

Hi Chyebren, my cancer was removed by my ops and I had a PETCT scan which showed no cancer elsewhere. However the scan will not pick up tiny cancer cells floating around the body so I had chemo in order to kill off any left. I also have radiotherapy to blast the area that the cancer was in and kill any cells there that maybe left too. As I understand from my oncologist this is to help prevent the cancer from returning however there is no guarantee they are just doing what they know helps to prevent reoccurrence. Obviously statistics over the years and scientific programs all help with this and give the medical teams the info that they need to prepare people’s plans for treatment. I believe there are a few blood tests that can check for tumour markers but I don’t understand these. There is one I have done but so far my oncologist has said it’s all ok at the moment. I would assume if they are out of the standard range then more scans / tests could be carried out as these markers would point to the area where it may be suspect.  Maybe this is something you can discuss with your oncologist, it’s possible he/she will have included these in your bloods that you have done before each chemo so there is a baseline already that he/she has.

I will be having mammograms for the next 5 years to keep an eye on things and also tamoxifen for at least 5 years. Again all to help detect and prevent reoccurrence.

Wishing you all the best on your journey.

Hugs from cuffcake x x x x x

Hi Chy

I agree . I had my mastectomy, chemo and radiotherapy and have just started abmeciclib and am really suffering with sickness.  Am asking myself why why and what guarantees do we have?  I’m a bit deflated at the moment wondering is it worth it??? All this treatment could be for nothing. After chemo I can’t believe I feel so so I’ll again.  Are they just throwing the blanket treatment or am I having a bad day?  Some reassurance would be nice.  I was told reoccurrence goes from 30% to 3% with radiotherapy but if I’m clear from surgery and chemo how does this work.  I’m in despair xx