Slightly confussed

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Hi Thanks for joining this discussion folks.

I will let you into a secret, I am not slightly confused I am very confused, if not a little miffed.

My journey is quite long and treatment varied so I will try to be brief.

My original BC resulted in a lumpectomy and 8 nodes cleared one being cancerous. The cancer was tested and it turned out I was triple negative, so I went on to have chemo and radiotherapy. At the time I had to wait several weeks for my Herceptin results and at one time they were ‘lost in the system’ But they arrived and I was found to be HER 2 negative.

Well cutting to now, I have had a mastectomy and the recurrence cancer was tested twice. Before the results came through today I had an appointment with the onc who said that the cancer was the same cancer as the original and so would probably be HER2 negative again. Well the results showed I am HER2 + /3 positive (Where 2 stroke 3 came into it I don’t know).

This has left me puzzled, how can the same cancer become HER2 positive? Could I have been hoodwinked on my primary diagnosis ?(That’s the cynic in me)

I am having a further appointment with the onc so I expect she can tell me, I am only hoping she won’t refuse me Herceptin because I didn’t receive it last time.
I expect to have chemo again in a couple of weeks and I don’t really know how this will fit in with the Herceptin. I think in Nottingham it runs after chemo.

So if any of you more experienced ladies know how a negative can become a positive I would be interested as I want to go with some prior knowledge before talking to the onc.

Thanks
Carol

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Hi Carol,

I wonder if the second time your tumour was tested for HER2 was by the FISH method rather than the more usual IHC. Sometimes it is said after the normal method of testing that a tumour is HER2 neg even if showing slightly positive. Usually herceptin is only given if it is HER2+++ ( or sometimes expressed as her2+/3) which means very positive. You don’t say how long ago your first bc was. If your recurrence happened fairly soon after they may well be suspicious of your her2 status thus testing using both IHC and FISH. From my reading I understand that it is fairly unusual for a tumour to be her2 neg then recur and be positive. But the different methosd of testing could explain this.(I think!!). It will be interesting to hear what your onc says on this. Usually herceptin follows on from chemo, but they are giving it alongside certain chemos now.

Dawnhc

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Thanks Dawn,

That makes sense, my original cancer was two years ago and as I understood, tested outside the hospital, the latest was tested in what I was told an up to date facility in the hospital.

I let you know the outcome next Tuesday.

Cheers
Carol