Am I expecting too much?

LucyDee

Firstly a bit of background

Lumpectomy from right breast March ‘18 came back positive
All 40 nodes from right armpit removed April ‘18 came back positive. Bone scan found two ‘spots’ on T11 vertebra and two more on my skull.

Had radiation for five weeks focussed on right breast.

On Letrozole and Kisqali

Saw Radiology Oncologist this past Thursday - my two month post Radiation check up. See registrar. They assume radiation worked.....ASSUME? And when I asked what they plan to do about other ‘spots’ he asked if I was in pain....No, but...So I don’t have to see that specialist or her ‘minions’ unless I am worried about something. Otherwise, continue monthly blood tests and results catch up with one of the many registrars of the Clinical Oncologist.

I was expecting they’d do some scans to confirm radiation worked and others to check progress of spots....but no.....

Am I expecting too much?

thanks

Lucy

Zoffiel

Letrazole was originally used to treat bone mets, it's now used more widely to try to prevent metastasis in the first place. So, you are probably taking the right drug regardless of what effect the radiotherapy had. Scans are a double edged sword and seem to be more commonly applied to those with private health cover. That's a pretty cynical viewpoint, but seems to be true. If the scan shows all clear, you will still be taking the AI. I know some people have more frequent tests, but the advice to listen to your body and report any changes is sound.

You can probably demand another scan, but they are not good for you, and if they show that the spots are still there nothing is likely to change much anyway. This stuff is hard to get your head around. If you are really stressed about it, restart the conversation either with your existing oncologist or find a new one.

LucyDee

@Zoffiel Not stressed, was just expecting more ‘action’ I guess.....Especially in relation to the ‘spots’....after all, wouldn’t they treat them early rather than wait?

It feels a bit like ‘oh well it’s already spread so let’s not do anything else until you start feeling sick’....Like the sense of urgency has gone....

iserbrown

@LucyDee have you joined any groups on here, maybe this one 
https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

Others on there maybe of help to you

LucyDee

Yes, I’ve joined that one.

Maybe I should post there @iserbrown ?

iserbrown

Yes as some only post in the group and not the main forum.  The groups are private whereas the forum is public