I was originally diagnosed T3 N1 M0 in May, had 3 cycles of EOX chemo and then the Ivor Lewis op 9 weeks ago. Operation went well but discovered quickly afterwards that the "gold standard" procedure of pre op chemo has failed massively in my case.
Pathology tests after the op showed that the chemo did not work. (Interesting to note that the re-staging CT scan at the end of chemo implied that there was a significant radiological response to the chemo!!)
In my case, the "gold standard" effectively let the cancer remain "untreated" in my body for the 15 weeks between diagnosis and operation. And as a result, I've recently found out that I now have secondary liver cancer.
I had heard that a reasonable percentage of people don't respond the the chemo pre op - but was wondering if anyone knew of any study results which showed percentages - or alternatively the percentages of people who do respond positively to the pre op chemo.
Just a pity there's no test available yet in this country to identify the group of people like myself who would presumably benefit greatly by going straight to the operation.
I'm now on my first cycle of Cisplatin, 5FU and Herceptin and slowly coming to terms with the change in prognosis.
All the best.
Martin
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marty1
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I don't know the percentages Martin but my husbands pre-op chemo also produced poor results with no change in tumour size, he too wasT3 N1 M0. As he didn't get full clearance at surgery I knew the chance of recurrence was high so asked if he could be given RT along with post op chemo but was told the area to radiate was too big. Sure enough in Feb of this year he had a recurrence and was given 25 sessions of RT along with chemo - initial scans showed a "significant" reduction of 25% and a partial response to chemo. The gold standard treatment in USA is RT and chemo before initial surgery and I can't help but think if he had had that or had immediately after the surgery he wouldn't be in the position he is today. Unfortunately his Herceptin tracer was negative so that's not an option either. We are lucky ( I use the term loosely!) in that the
spread is confined to the original site and has not metastasized in any distant sites - actually we are of course lucky indeed in that. I wish you well Martin - all our fates are hanging in the balance and dependent on a combination of luck,choice and what decisions are made for us.
thanks for your comments and sorry to hear about your husband's post op situation. I wonder if the reluctance in the UK to use a combination of chemo and radiotherapy pre-op is due to cost. It seems like a "belt and braces" approach that you'd think should result in a higher success rate than just the pre-op chemo that we are currently offered. The downside of course is you have to go through a much more gruelling regime with presumably daily visits for RT. Best wishes to both you and your husband.
Like you, my tumour (also T3 N1) did not respond to pre-op chemo. I also know of others in my locality, so I presume the proportion is significant. I'm not aware of any national studies, but local cancer networks may well have carried out local audits, in which case the results may be available on their websites.
Luckily, I am now 6 years post-op, so in my case the delay in surgery does not appear to have affected my survival chances.
Some hospitals are now routinely scanning patients after two cycles of chemo to check whether it is working and, if not, are abandoning it and proceeding to surgery more quickly.
What you call the "gold standard" treatment pathway is far from that. It is based on a research trial carried out nearly 10 years ago, which was originally for stomach cancer. A recent large scale study in the Netherlands suggests that better results are obtained with pre-operative chemo-radiation, which, as Lyn pointed out, has been standard practice in the USA for many years. However, as with any scientific research, opinions vary on the validity and interpretation of the results and, while some oncologists are keen to adopt the new treatment regime, others want further research.
thanks for your input - it's great to hear that your lack of response during the initial chemo stage has not impacted your recovery post op. Interesting to hear about the scans after 2 cycles - although in my case for some reason - my second scan after the 3rd cycle led the oncologists to believe that I'd a significant response. I've no idea why this happened but something went wrong somehow. Maybe scan interpretations are more of an art than science. I wonder if there is much research going on in the UK these days to address the short comings with the so called "gold standard"
All the best
Martin
The standard treatment of chemotherapy before surgery has been shown in trials to yield better outcomes. It does, on average, shrink the tumour so that the surgery has a better chance of success. And chemotherapy after the surgery has to be delayed until the patient feels strong enough for it. People do react (or fail to react) in a whole range of different ways to chemotherapy, and I am not sure that there is any way of finding out except by trying it. And in your case they only found out definitively after the surgery. It is rotten, rotten luck that things have turned out this way for you.
I do not know any percentages, but if I find out I will let you know.
The scanning has improved dramatically in the last few years - and one of the effects of that is that the first signs of cancer elsewhere are more easily picked up. So some years ago the benchmark used to be that 40% of patients had surgery; now it is more like 20%.
It is one of the great unknowns - whether having the operation earlier would have made a difference or not - but the oncologist or surgeon may be able to give you more information on that one. All I can say is that there is no guarantee that there will not be a secondary spread after surgery amongst those who have reacted well to chemotherapy; and that many people would have wished for an earlier diagnosis in the first place to have given them a better chance.
It is a big issue to come to terms with, and you have our very best wishes.
thanks for your input. I realise that the pre-op chemo does yield better results on average than going straight to the op - but it would be great if there was an early and reliable way of identifying those like myself and Spikey who do not respond. Hopefully something will emerge sometime in the future - assuming the UK doesn't start to follow the US and include radiotherapy as well as chemo pre-op.
When we spoke to the oncologist and surgeon after the initial path results came back they stated that the scan results are never absolute and even the path results can sometimes be wrong.
You are absolutely right that we'll never know if by having the op earlier I'd now be in a better position. Its all hypothetical anyway and wont change things. It's no use going back too much over what might / might not have happened but I suppose that a small amount of this is needed in my own case at least as part of coming to terms with things.
At least Herceptin is a viable option in my case - so fingers crossed things progress positively for a good few years and when Herceptin is no longer working, that some other viable options are available as well.
Hi Martin, the post-op pathology report tells whether the tumour responded to chemo or not, by evidencing changes in the nature if the cells, mine showed to have an "average" resonse to chemo with some changes.
All my pre-surgery tests, CT scan, PET scan and endoscopic ultrasound (EUS) all showed no spread and thus I was diagnosed T2/3, N0,M0, whereas after surgery pathology tiny cancers were found in 7 of 12 lymph nodes tested, making me T3,N3,M0. I thus underwent 3 cycles of ECX chemo.
I have read so many confusing stories about which scans/tests show up cancer or give false positives or false negatives that it makes you lose faith in the testing process. I've also read a lot about whether chemo is effective or not, so like you would love to know the statistics, after all, chemo is horrid, so to think you might be undergoing it for nothing is awful. Also like you I found the time delays concerning.
thanks for your comments. My own experience of scans has been that they are definitely not 100% reliable. I'm not completely sure why that is - given so much decision making is based on their outcomes. Although I have been told that that the CT scan can only identify tumours that are bigger than 5mm. So if the tumours are less than that at the time of the CT scan then they wont show up.
In my case when they compared the initial diagnosis CT scan against the CT scan taken at the end of the 3rd pre-op chemo cycle - they identified a significant response, only for the path results to completely contradict this. Not sure if its always viable to compare two CT scans accurately - but if not then why use them.
I had thought of having a second scan just to confirm the secondary liver cancer - but so far have not pushed for that. Maybe I should.
Hi Martin, it might be worth asking for some kind of further investigation. I've read either here or on the Macmillan community site, of people who were diagnosed with liver mets prior to surgery, thereby precluding surgery, but underwent biopsies etc which showed that there were no live mets and thus they had surgery. As you say, the scans seem pretty unreliable so shouldn't be relied on, and if their results are removing the option of further treatment then they should certainly be challenged by other tests, even if they are invasive/unpleasant.
Hi Hilary, that's interesting. I had a meeting with my oncologist on Tuesday and asked about the accuracy of CT Scans for identifying liver mets. He said that they are generally very good at that - although he also stated that there were other areas that they don't excel at. In my case I've had a few CT scans which showed up nothing on the liver followed by the latest one that did. I've another one due in January to see how well my chemo/herceptin treatment is working and might well ask about further investigations depending on how that turns out.
Previously I think one of my oncologists had said that its not always easy to get an accurate liver biopsy of where the tumour is supposed to be - its a large organ and if the tumours are relatively small they might end up taking out good tissue and missing the tumour.
Hi again, also interesting that you had a re-staging scan after chemo and before surgery - I didn't. Nor do they plan to scan me now that my six months list-surgery review is due.
As explained in my previous post I am ambivalent about the benefits of scans etc but would be interested to explore what other people's frequency if scans us/has been.
I found a DOH report re recommended treatment for OC and that said the benefits if scan after surgery are unproven.
yes I had all the scans going ahead of my operation - including the re-staging scan just when the pre-op chemo finished. I then had a post op baseline scan carried out prior to the supposed start of chemo-radiotherapy. But as that scan identified the secondary liver tumours I'm no longer eligible for that treatment and am now on the chemo / Herceptin regime. Its surprising that there's no plan to scan you now six months after surgery - but as you say, maybe they know just how unreliable these scans can be.
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