Hi Sue,

So it will be like doing another 6 months of chemo but in tablet form? I've read there are some side effects and they can alter the dose.  so you would need to self isolate for longer?

Ive read some studies done too in the US and also mixed messages as it also depends on what type of TN you have.  Err think we just get told we have it, not sure they do the genome testing here and find out if its basel like or non-basel like.  anyways one of these subtypes responded better than the other.

What is your gut telling you?

xx

Sue have you looked at the nhs predict breast tool? I did mine just because others in this group were on about it and mine came up 14% chance, tbh I think people just guess these % because everyone is different. I worry about having a recurrence and then I tell myself i cant let it take over my thinking but I know its hard xx

Hi Mich,

About 6 months and I'll probably need to self isolate. My Oncologist said that there is lots of different types of triple negative breast cancers but they can't tell which type we have yet as research is still ongoing. I'm leaning towards not having the chemo as they don't know if it's of benifit but if there is it would only give me an extra 6% chance of it not returning. It is in tablet form and taken twice a day. The side effects can be quite bad.

Xxx

Hi Linda,

I will have a look at this tool in a minute. I know we all worry about a recurrence and hopefully in time we learn to live with it but at the moment it's all I think of. 

Xxx

Hi Linda,

I just looked at the tool you mentioned. It's not suitable for ductal carcinomas and I had a grade 3 invasive ductal carcinoma. It was worth a try though.

XXX

I think that's what mine was sue as it spread from my ducts up into my tissue I'll need to look at my letters, I pressed no on top box and put how big my tumour was in mm in lower box xx

Hi Linda,

I just tried that but it's not accurate as it's not suitable for ductal carcinomas. I'm beginning to think that if you've had triple negative breast cancer then there's always a 25% chance of a recurrence. We should try and focus on a 75% chance of it not returning xxx

I've just done the calculater tool and 5 year survival 63%, hmm yeah maybe not!  It does say only use with guidance of doctor haha!  so you dont get the WTF moment like i did!

it doesn't cover in situ, think all of ours were out of the ducts and had form tumours.

At the end of the day Sue, these are all stats based on the general studies so you must go with what you feel is right and good for you.

Another quick question, if yo dont decide now and want tablets 6 months later, is that an option?

xx

Hi Mich,

No waiting is not an option. I'm leaving it as late as possible otherwise there is definitely no benifit to taking the tablets. That chart is not suitable for triple negative cancers so don't get scarred by the results.

Every cancer is different so I don't think it's possible for anyone to know the actual chance of a recurrence and as my oncologist said, it's up to so maybe a lot less.

Xxx