Am feeling utterly miserable. Had WLE and SNLB in early June and was then told I needed more surgery as there were still some tumour cells left on the lateral margin.
For various reasons (including having to terminate my pregnancy) I have yet to have the surgery, but after much faffing about and differences of opinion about my treatment I was informed that the surgery was going to be by the end of next week and that I could have the new type of one-shot raditherapy.
Since then I’ve heard nothing from the hospital so I rang today to be told that no further appts had been made (for anything), and then by the consultant that when they had looked again at the MRI what they thought was cancer possibly wasn’t and was in a different place anyway.
So now I might/might not have a re-excision of the whole cavity next week (or possibly in Sept), and no one seems to know what will happen about the RT (type, timing etc). I’m totally confused and very frustrated - how can what I was told a week ago have changed so much? I also feel completely disempowered (again) and sick to death of having to chase things up. Why can’t it be straightforward?
Not really expecting any answers - just needed to rant. Aaarrgh. Thank you.
So sorry you’re having so many problems with your hospital on top of everything else you’ve been through. Can you speak to your onc and surgeon to get the truth of what’s going on? Or do you have an appointment scheduled? It’s so awful being in limbo, I really feel for you. Let us know the outcome. xxxxx
its hard enough going through this without such messing around at the hands of the professionals. If you have time/energy/motivation, it might help you to put together a timeline of whats happened and when as that will clearly show the chronology. Then if you have a decent gp, you could discuss it with her, and also get in touch with pals at the hospital who should be able to liaise on your behalf.
You need some certainty, even if the theres no certainty in breast cancer itself, at least some short term certainty as to what treatment you are likely to face may help.
From a practicalpoint of view, a letter to the consultant copied in to your gp can help as these people are terrified of litigation and they are aware they they can fudge their way out of phone calls and meetings being “remembered wrongly” by a patient. However, letters setting out the facts at this stage are harder to get round as they are on file, especially if they are copied elsewhere too as if it conveniently falls out of one persons file, there is still an official record on someone elses file, and the consultants will know this. By putting down a time line of events, it makes it harder for them to dispute that version of events later down the line if they never disputed it at the time.
I am not suggesting there is a litigation point in all this, just that getting things down officially and in a way the experts cannot fudge later does put them on guard to act more properly now.
Latest news is I am having the additional surgery tomorrow. All very confusing (and not a little worrying)though: they can now no longer find the remnants of the tumour that was exicsed in June (though they are sure it’s still there somewhere), as it didn’t show up on the MRI and only sort of did on the ultrasound I had today.
However, the MRI has detected two new hotspots on the other side of the cavity that might be cancer, or might just be hardened tissue from the June surgery. So, the whole cavity is to be re-excised.
It appears that the initial surgery only caught the edge of the original tumour (it was fairly small), so a lot of healthy tissue seems to have been removed and not enough of the bad stuff.
When I asked my surgeon how that could have happenened (he’s a new one as I’ve switched hosps) he said he didn’t know. Sounds like a complete cock up to me, but perhaps I am being unfair…
I suggest you have a good rant at your oncologist. It is there job to make sure you know what is happening and that you are being looked after properly. Makes me angry just reading your blog!