Really not sure what to think - I got 'lost' in the system

ClaireUK

Hello all - I'm from the UK.
I am really not sure where to post this question .. or even what I am asking? But I feel so incredibly let down.

Was first diagnosed - aged 35, 2.5 years ago, grade 2, IDC, 1cm, node neg. ER and PR 100%, Her2 neg, Had lumpectomy - rads - tamox (but stopped taking them because of SE).
Four months ago - another lump - under scar. Biopsy showed same as last time, but much smaller.

I did not have much faith in original surgeon (misdiagnosed me twice) and also did not do the recon that I wanted (DIEP).  I do not have Private Health, but made a couple of appts privately because of the timescale. I saw breast surgeon, plastic surgeon and Oncologist - all privately and had CT scan (which was clear). However, the actual surgery (BMX Diep) was done on NHS.

When I saw the Oncologist - we discussed treatment after surgery. Both he and Surgeon put the recurrence down to 'surgical failure' Because of my stats (grade 2, er/pr 100% her2neg etc)- I said to help me decide whether to have Chemo or not (really would want to avoid unless absolutely necessary) I would pay for the Onchotype DX test. To which he agreed would be the best thing to base decision on - as I am 'borderline' in terms of benefit for chemo. This is not available on NHS - so he said he would arrange it.

So I have my surgery, Mid August. All goes well. But apart from one appointment with dressings clinc - I do not hear anything from any doctors. I suppose because of the swift change in hospitals - I was also not assigned a breast care nurse/team.

8 weeks on, I call my GP. They say they havent heard anything from the hospital (they should have had path report at least - and I wonder why they aren't chasing it up?) She tells me she will chase things up.
Another two weeks on (we are now 10 weeks on from surgery at this point) I still have not heard anything.  So I call GP surgery. They are still awaiting results. I tell them I am most concerned with the Onchotype DX results as I am basing my decision on whether to have chemo or not on this and 10 weeks is pushing it timewise. She says she will chase it up.

Two days later - I get a call and I am asked to book a private appt with Oncologist.

So yesterday (nearly 11 weeks post surgery) I see Onco.

I am told the test was not ordered. It was an admin error. Not only that but full pathology was not done (her2 status etc).However what we have so far is grade 2, node neg, er and pr 100%, tumour 3mm, no vascular invasion. But he has ordered her2 (biospy showed neg again though) and KI-67 test.

He tells me he is booking me in for Chemo on tues in case I need it.
I said absolutely not, on what basis? The whole idea of me ordering the onchotype dx was to help me make a decision as to whether to have chemo or not.  I said if I needed chemo, you would be looking me in the eye and telling me straight that I needed it.  He said he would if that was the case. But they just don't know.

After some discussion, he says we can base the decision on the KI-67 score. But he is away next week - so will ask a colleague to hopefully call me monday with the result.

As you can imagine, my head is all over the place. If I start chemo next week, it will be nearly 12 weeks out. Surely any small benefit has been 'lost' now?

I feel totally let down and wonder if chemo is being offered because of this admin error.  If the ki-67 test comes back high, I'll be beside myself.

Sorry for long post - I really dont know what I am asking - just advise on staying sane till 'hopefully' monday would be helpful though.  Thanks for reading.

PLJ