HER2 results and Herceptin

[davek2013]

Three related questions from a newbie:-

1) How long do HER2 results usually take to come through?

I'm under the care of Clatterbridge via one of their satellite clinics. I had an endoscopy about 10 days ago, my cancer has been graded as grade 2 but I was told that a sample had been sent off to Nottingham for HER2 testing and that we are still waiting for the results.

2) Is Herceptin given as a matter of course if the HER2 results are positive, or will I need to argue my case for what is a very expensive drug?

3) I start EOX chemo on Thursday. If I am a suitable patient for Herceptin, would this be administered after the chemo, or in parallel?

Thanks in anticipation

Dave

[Stevewellswood]

I went to clatterbridge for my chemo I usually got results of things within 10 days

[davek2013]

Thanks - I'll chivy them up on Monday

[Hidden]

There is always a delay between getting diagnosed and a decision about what treatment you can be offered. This is because they will usually want a number of scans, and also to discuss your case at the Multi Disciplinary Team meeting, where all the professionals are represented. There will be a TNM analysis. The T is the stage that the tumour has reached; the N is number of lymph nodes affected; the M is whether there has been any metastatic spread (ie the same cancer going to a different /nearby part of the body). It makes sense for them to get it all sorted out first.

Sorry to hear your news that you are qualified for this club. It is a traumatic period, but one thing that might be useful for you is to write the questions down that are bothering you. And take somebody with you to your next appointment because it is really difficult to remember everything on your own.

[davek2013 in reply to Hidden]

Thanks Alan - the oncologist gave me the TNM staging on Wednesday (T3 N3 M1). The only piece of the jigsaw missing that I am aware of is the HER2 info. I start EOX chemo-therapy on Wednesday.

Best wishes

Dave

[Hidden in reply to davek2013]

Thanks. All best wishes for Wednesday. Some people go through chemo without all the side-effects that we often hear about, so we'll hope that this will be so for you.

[hilr]

Hi, totally agree about taking someone with you, my 2 daughters always accompany me and afterwards we all seem to have heard different things!!! My oncology nurse specialist mentioned recording meetings with the consultant so that you can play them back afterwards and I think that would be a really good idea.

U-tube has 2 videos of early stages of diagnosis -search under "the cancer marathon". When I watched those i realised that they were very similar to mine, but in the video I heard the words that I hadn't heard in my meeting. I am T3, N3, M0, although pre-surgery I was staged at T2/3, N0,M0, since the cancer in the lymph glands were too small to detect on scan.

Hilary

[Hidden]

I think that the scanning equipment is gradually improving. It is dramatically better than it was a few years ago, but probably has some way still to go. The surgeons do chase after lymph nodes, remove quite large numbers of them and then send them off for biopsy, as that is the route through which the cancer often spreads to other parts of the body.

[davek2013]

Thanks for the messages of encouragement. I started EOX Chemo yesterday, so it's quite literally early days.

The surgeon and oncologist both advised against any surgery - even removing lymph nodes - as that would delay the start of chemo.

The primary cancer is inoperable as it has already grown around my aorta. Trust me to get one that grew the wrong way. If it had grown into my oesophagus, instead of out of it, I would have had difficulty swallowing but that would have triggered an earlier endoscopy. My GP only referred me for an endoscopy because we both thought the few symptoms I had might indicate an ulcerated oesophagus (which I had several years ago) or a peptic ulcer.

So I'm now concentrating on keeping fit and healthy to give the chemo the best chance to work.

Thanks again

Dave