Scan or not to Scan - Post treatment

This might explain it for you. Your treating team are following best practice.

https://www.cancer.org.au/news/news-articles/new-recommendations-for-best-practice-care-in-breast-cancer.html

@primek thanks for this info, I had not seen this before, it answers a lot 
👍🏻

It remains a slightly distressing fact though, no matter the science and stats behind it. You have the awful Big C diagnosis, incredibly invasive, toxic and destructive treatments, and for 70%, are then placed onto long term medication that is often very difficult to take. To be met with a 'but we won't be checking if any of this has worked/is working', especially if the technology exists, seems odd to weird to the lay person.

I do understand why, but I still scratch my head that at 51, with a strong family history of BC (mother, and deceased sister) I have not had a single scan in the entire experience.

I know that if it metastasises it metatastises and knowing now or six months later will make no difference to the outcome. My oncologist said that it takes a million cancer cells before anything is visible.

It doesn't stop me worrying about finding a recurrence (or a new breast cancer) earlier rather than later, for myself and anyone else. So much of surviving BC is the mental struggle. It'd be so nice to have the possibility of settling our worries once every year or two.

@Shakalker this is a good point but one my Oncologist answered to me also straight from treatment. Upon completion it is natural and normal for everyone to want to know if their body is all clear. The reality is though? the scans wouldnt show anything generally, most BC is slow growing, I think the earliest he'd do one for me was at 6 months. It makes alot of sense, the other thing he mentioned is unfortunately we are not advanced at all...that we are only as good as detecting it once it is there :/ we still haven't got a foot in front of it. I too am ER+ and was Grade 3 no LN involvement, I too had 4 rounds of FEC and I had 8 rounds of Taxol. He did say if I had any complaints they would definitely do scans and investigate but that would be the only time. As Id had a recurrence already 4yrs after the initial in same spot, I had a mastectomy/diep flap recon. He said he wasnt monitoring me for BC anymore but rather a secondary...you could IMAGINE how taken back I was. For someone who bounces into his appointments as of this year its yearly not 6 monthly, going into 4 years clear! that doesnt even cross my mind! I'm focused on moving forward! lol x

Oh wow, I learn something every day!  I'd never heard of G Zero cells.  I knew that cancer cells were tiny, but thought they were all visible on the screens.  :smile:

@kmakm I too really struggle with this. I get it from an over exposure to radiation point of view and a public health point of view with a cost vs benefit scenario. However the point I try to argue with my onc is, if I knew I had mets now versus 8 months when symptoms might develop, well for someone of my age that's significant time to do the things I want to do before I passed. 
Its an absolute mind f*** isn't it. 

Genetics told me if I came back with a mutation called TP53 I would have scored an annual full body MRI; I didn't come back with it but I was almost hoping for it in that weird way, knowing I'd get scanned regularly. 

@youngdogmum So true about choosing how to spend your time if it's very limited. It's a lovely idea to live as if each day, week or month is your last. However the reality for most of us is bills to pay and jobs to do. We might be postponing say, that trip round Australia with the kids until a couple of years down the track.

My sister had one last trip planned, to take her children to a very special place that meant a great deal to all of them. But her BC got significantly worse, significantly faster. The tickets had been booked but she died three months before the holiday. It still upsets me to think about it. I know these things can't be predicted, but if she'd known earlier about the progression of her disease... We'll never know.

Medically speaking, I presume there's no advantage to catching Stage 4 earlier rather than later. Which is the medical reason why we're not scanned.

I'm still surprised by how little we know about BC. Hopefully one day soon we'll get out in front of it. I'd love that to be in my (fingers crossed long!) lifetime. 

I think that's the whole point, we really aren't that advanced at all, Dr De boer has said it to me many times. Unfortunately that is correct @kmakm there is no testing that detects stage1 or stage 4 earlier than later, they only pick up when it is there. Thats the hardest damn thing because there doesnt seem to be any safeguards at all. We get treated and monitored, as I said Dr De Boer isnt looking for BC in my right side, he monitors me for a secondary. In my head Im like, how is there not a blood test or a test that detects the body changes before the cancer arrives?? how are we not even there yet? 

I know what its like to lose someone suddenly to Cancer with zero warning, my Mum survived 26 years from BC to end up with a pain in her back rushed to hospital and 2 weeks later put to palliative care at 66!! she passed 4 weeks later. There was no sign, no prediction, we were left in absolute shock. 

I think after having had a recurrence, there are so many things I dont place importance on, the world is unpredictable all illnesses are I guess. I was blindsighted the last time, if it happened again I'd be disappointed to think they really havent evolved at all in prevention.

I have no choice but to work full time, and nobody knows how damn hard it is, but there is no choice for me. So many responsibilities, but am grateful for a loving partner, his children and mine and a very few close friends. I live mostly for the now where possible but yes somethings have to be planned and that's ok. 

My Mum had a cruise booked, they were fierce travellers and this was with my Dad, her best friend and new husband. 

So I feel for everyone affected, in fact I see the Onc this week, so I have some questions! but to be honest Im sick of attending Id sooner keep enjoying my life and see him if I feel I need to, otherwise whats the point. 

Hugs M x

I really wish that I didn't need to have CT scans every 3 months. But, I  do. 
I am also just about to have a brain MRI.
These tests aren't fun.