After all that we have been through and finally come out of the treatment machine (except Tamox), my wife, with my full support of course, has talked the Onc into getting CT and Bone scans done, despite the Onc having reservations (but confident that they don’t expect to find anything), as we want to know that she is clear at this moment in time, so we can hopefully relax a bit and begin to move forward.
However, my confidence in the scans showing nothing and the chance for us to move on has taken a knock, but I do not know where the knock has come from. I am petrified that the scans will show something and instead of going forwards we will lapse backwards. My gorgeous wife is already finding it hard on Tamox and is pretty low at the moment. There doesn’t seem to be anything I can do to bring her out of it, which is begining to overwhelm me. I dread the prospect of the scans showing something bad especially when she is in this state.
Has anyone else travelled this path?
Is there a time line that we can consider her to be NED, particularly if the scans come back negative??
Hmm, tricky one. You’re in that Waiting Room again and all it entails.
Officially it’s 5 years before you get the ‘all clear’ but after each check up you can be classed as NED.
I think that you need to just try and hold tight. You’ve both asked for scans that the Onc was reluctant to do, which suggests the chances of anything being there is small. The scans are as accurate as they can be (which I know is vague) and they use the different scans to create one picture. Meaning that if your bone scan shows something (which it might as they are really, really sensitive) it will have to show on the ct to be a real concern.
Obviously you know the words that you both want to hear but until you do it’s up in the air. Your worried thoughts are real but they are just thoughts. Cast your mind back to the time she was first dx - you both got on with it and came through that nightmare. You’re in a different place now and WILL get through this too.
Sorry it’s a bit vague but hope it helps in some way.
hi
AS someone who has had quite few scans since treatment finished ( I am still on herceptin) I can say that for me the relief at clear scans is quite short lived. My scans have been generated by dodgy blood results and some other symptoms and the onc has always tried to reassure me that mets at this stage are unlikely. But everytime they do a scan i know it could show something. In fact they first clear scan i had last year had quite a bad effect. the stress leading up to the scan and results was enormous. when i was told it was clear, there was relief, but all i could think was i bet this wont be the last time I am in this situation. The relief after for me is never as good as the stress before. And I know it is no guarantee. My blood results are always wrong, so i have asked not to have the test any more. All it does is keep me anxious and no cause is ever found and so far no pattern exists.
I suppose the point I am trying to make is that scans will never give us what we want- peace of mind, not long term anyway. That doesnt mean your wife may not benefit from it at this point, but perhaps your expectations of the good it might do may need considering and as you have pointed out the unanswered questions it might raise mean it isnt for everyone. As far as I can see she is NED until proved otherwise.
Hi, For me not knowing what is going on has always been worse. The scans have definately brought relief and peace of mind, even though they discovered a growth on one of my kidneys a year ago, just before I started chemo. I’ve had several scans since then to keep an eye on it, and will have surgery in a week to finally remove it. Chemo was a hard journey for me too, and my husband found it very hard to cope with at times, being unable to actually ‘do’ very much. But just having him there for me helped, and on the good days we made plans for little breaks away to look forward to, after the treatment was over. This time will pass and you will both get through this. I hope things improve for you both soon. x
Totally overwhelmed today - results came back from the wife’s scans and they show clear Thanks to all the kind advice and your support. We know this is a snapshot of what the scans show today but it will allow us to start a clean slate and gives us hope that they will remain clear.
Thanks to all the kind advice and your support. We know this is a snapshot of what the scans show today but it will allow us to start a clean slate and gives us hope that they will remain clear.