After a clear ct scan, my PET scan showed a 7mm area lit up on my left groin. Previously my surgeon was estimating T2/3 N1. Obviously this was pretty devastating and all I can do is hold on to the hope that this lighting up is caused by something other than a metastatic lymph node, which would mean stage 4.
I have read in places including the UK that some people at stage 4 have experienced such good response from chemo that they have subsequently been offered surgery, but my GI nurse is insistent that this never happens. Has anyone had experience of this happening, or even heard of anyone that this has happened to.
Thanks in advance for any replies.
Written by
gwood80
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Make sure the PET scan is double checked. I was told that mine had metastasised but that was a misreading of the scan. Also, if in doubt, ask for a second opinion. I hope that it all looks better soon. There are always ups and downs as we go through the diagnosis and treatment.
Haward
The issue with metastatic spread is that if you undergo major surgery to remove all the cancer, but all the while it has been lurking in other parts of the body, you may end up facing a further diagnosis down the line, and all the hopes and tribulations of the surgery will have been, arguably, to no avail. Sometimes the surgeons have to deal with these situations, and the patient would say 'If only I had known, I would not have gone through with all that treatment'. So you can understand that it is not fair for surgeons to offer curative treatment if there is not a realistic chance of a cure; this may be what the nurse was referring to.
The explanation about TNM analysis from Cancer Research UK is here:
It is true that some people have had surgery after a really good reaction to chemotherapy has changed the assessment, but I do not know enough about what the stages were at the initial diagnosis.
Not sure if different types/sites of tumours - plus types of tumour cells - have different staging reports? Or whether, when you mention your GI Nurse, that you've already had , say, a GI Cancer and are now worried about secondaries?
My apologies if speaking to the converted (:), but, e.g. with Oesophageal Cancer, you'd get 3 figures in the staging - TNM, (Tumour, Nodes), and the 3rd being the Metastasis (spread). You've not mentioned that figure - were you given one? Appreciate groin may be completely different - and you may already have had a new tumour confirmed there by now? I understood that the figure 4 related to the tumour itself - OR are you referring to the GRADING of the tumour being agressive?
My OC staging was T3/4A (N1, M0) and, whilst they couldn't operate, they successfully treated me with radical Chemo/Radio 4 yrs. ago. This, I understand, was because mine was SCC (Squamous Cell Carcinoma) - which was easier to treat with this option - whilst Adenocarcinoma cells are either too sensitive - or not sensitive to Radiotheraphy (can't recall which was the case), so for Adeno, that option wasn't appropriate. It also meant that was my total treatment, without any trauma/recovery period of surgery, was relatively easy.
Alan explains it really clearly above. I wish you well whatever your full diagnosis, when you find out.
Thanks for the replies and the private message regarding this.
I had a consult today and they are 50/50 if I have spread or not. Groin node doesn't feel metastatic and he would be v surprised if that was as it is a strange area for spread, especially as only spread. I have sarcoidosis so have enlarged nodes in lungs which were there when I was diagnosed this time last year and they lit up on pet but he's not too worried about those. Slight concern about raised node in neck but didn't show on pet so he's quite happy.
Going to biopsy all of these and do laparoscopy and go from there.
I spoke to him about possibility of surgery if stage 4 but spread removed with chemo. He says due to my young age it would be something we could talk about but that I would have a 80% or above chance of reoccurrence so we've to cross that bridge when we come to it.
Generally speaking probably the best result I could have had today, (short of him telling me the last 5 weeks have been some kind of horrible dream)
A lot of the staging of OC is wrong and bear in mind that pet and ct scan's are only considered 80-90 percent accurate.
Please get a second opinion (it is your life after all) as different oncologists will have different views. If they cannot definitely say it is a metasteses then there is no definite staging as stage 4.
Usually the protocol is chemo first and then either chemoradiation for an squamous cell carcinoma then surgery if the tumour shrinks (depending on the view of the oncologist they sometimes suggest definitive chemo rad) or surgery after chemo if its an adenocarcinoma and chemo after (belts and braces).
I personally saw 3 oncologists and went with 3rd one who agreed to the surgery despite preferring definitive chemoradiation (it means you can't have surgery as higher greys of radiation). It was lucky I decided against this considering they found more cancer outside the radiation field which did not show up on 5 ct- scans. If I had gone with the suggestion of oncologists 1 and 3 I would still definitely have cancer in my oesophagus. Often definitive CR is suggested as SCC's are usually in the mid or upper third of the oesophagus meaning surgery is more complicated than the Adenocarcinoma found usually in the lower third. However, just because you don't have the surgery doesn't mean you can't survive or beat this into remission.
Regarding reoccurence, statistically most reoccurrence for OC happens in the first year anyway and can happen whether you have surgery or not, but is less likely locally (T-umour part of staging) and regionally (N-ode part of staging) but of course cannot prevent spread (M-etasteses).
The most important thing is to get started with chemo to shrink the tumour. One thing I've learnt is take responsibility for your diagnosis and don't give up no matter what anyone tells you as you will care the most about your own life!
I think it depends where you are and a lot of circumstances.
I was speaking to a woman on another forum who is under 40 and was told stage 4 incurable but had such a strong response to chemo they were subsequently considering surgery (but a further test showed further spread so it was back off the table).
I spoke to my surgeon about this possibility and he wouldn't rule it out (I'm 39 and still in the staging process) but he said with a greater than 80% chance of reoccurrence they tend not to do such life altering surgery, but possibly for someone young who has shown a great response to chemo it could be something to talk about after the first round of treatment.
they have said he is terminal but that at the moment it has not spread, his right vocal cord is paralysed and I think it is the postion thats the problem. Waiting to go and see Lubna Bhatt at Christys to find out more and why?
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In shock and petrified!
no surgery
Squamous cell carcinoma 
Is this bad?
4 months post oesophagus surgery and still very nauseous 
