op or chemoradiotherapy

[kiddy]

Hi i have been diagnosed with oesophageal cancer. I have had 3 lots of chemo. I have a condition called polyspenia so my organs veins are in different places causing concerns. I have early stage cancer. i have been offered surgery or chemoradiotherapy. Has anyone had this choice? also they cannot move my stomach up so they need to use my colon. Can you eat as well with the colon? Feeling worried.

[Mark4]

I can see why you are worried as you have been given a decision to make which is somewhat beyond your skill set! I would be tempted to ask for the option which they felt had the best chance of stopping the cancer. If they are ambivalent then you go for the more comfortable option. I think you need to be referred to a team at another hospital for a second opinion preferably a major centre for this kind of operation. With what you have posted any other advice is tricky a referral to another centre would be a good start.

As your cancer is early stage the outcome is likely to be good and for many patients the options you have would be a joy, so don't despair be thankful it's at an early stage and I suspect both options have a good chance of a satisfactory outcome.

[strangetimes in reply to Mark4]

Everything mark said ( though joy wouldn't be my choice of adjective )

sounds complex - my only input would be to suggest a referral to St Thomas's in London as I know they take referrals for upper GI ops that haven't been succesful etc and have lots of experience .

I think my gut feeling would be to proceed with chemo/rads and only have surgery as last resort if cancer not responding to treatment .

So sorry you have all this to cope with .

[abreynolds in reply to strangetimes]

Just something about St Thomas's. Outstanding Hospital still under them, 9years since Op. I have had a few times that I have had to get in touch for a flush thro' or a stretch. so helpful .> so everyone do get in touch with your upper GI nurse' if you have a problem. you are Like an old car that has new parts that don't seem to work some times, so you need a service. looking to my next 9 years.

[kiddy]

Thank you for your replies, we are having a meeting with the Prof on monday as my family have questions too. Believe me tough decision as i want to be around as long as i can to see my family grow. xx

[Aurora12 in reply to kiddy]

Hi Kiddy,

I had locally advanced OC - tumour too bulky/long and too close to heart/lungs to operate. My only option was Chemo, followed by radical Chemo-Radio. I've since heard from some specialists that there is good clinical evidence that this works as well as surgery (but without the serious Op. and recovery period). It's now 3.5 years since my treatment - and, relatively, life couldn't be better for me up until this point! Not sure if there's a difference in success rates between SCC (Squamous Cell Carcinoma) and

Adenocarcinoma??

Sorry, I've not heard of polyspenia or it's implications.

Best wishes for a good recovery, whichever way you decide!

[tallbear]

I have had the Ivor Lewis (move your stomach up etc) op six months ago, and after six months although my body has healed, scars etc all cleared up. That was the easy bit, the hard bit is getting your body to accept any kind of diet afterwards. Almost everything I eat gives me stomach cramps and nausea and long term constant diarrhea. I am now less than seven stone in weight. My life revolves around what food I can eat before I have to rush to the toilet clutching my stomach.

You may or may not consider me suitable to give you advice, but let me say this, my cancer was also early stage but I wasn't given any option other than surgery, as I have said six months on and it's still seriously problematic and I did have my stomach turned into a tube (which is the standard way of doing it apparently) so you have additional complications with the colon being used.

Only take surgery as the last resort, if the prognosis for survival is good with chemo - radiotherapy then go for it, and then maybe afterwards you will still be able to eat food like you always did and get back to living a normal life.

Whatever you decide I wish you the very best of luck.

[brucemillar in reply to tallbear]

Tallbear

I just wanted to say that, similar to you I struggled with food after my op (Transhiatal Esophagectomy). At some points I was so ill with diarrhea that I was to be hospitalised. Then, for no reason that I am aware of, it all stopped. Seriously. I just woke up one day and the cramps, the constant diarrhea etc had gone.

The only change that I was conscious of making was a reduction in my sugar intake. I reduced it to zero obvious sugars. I also switched to a caffiene free coffee.

I now eat fairly well. Most importantly I no longer have the cramps and diarrhea. For me this made commuting impossible for a while. Now I have no issues.

I wish you well. I am now 18 months post op in St Thomas. I have had several stretches (last one last week) where my "stomach" exit closes up. This means I get full up very quickly. It is manageable and the stretches are painless and work.

Good luck.

Bruce

[abreynolds in reply to tallbear]

Hi Tallbear I was exactly the same as you, but I am 9 years post op. see my reply above all the Best Tony.

[brucemillar]

One other point that I should have made. After being diagnosed with Hypoglycemia (a direct result of my surgery). I was seen by Jason Dunne in London Bridge Hospital (Jason is a Gastroenterologist & a very nice chap). One of the things that Jason suggested for me (this may not work for you) was to stop taking pro-biotics. Previously I had been advised to take these to help with the diarrhea. So I stopped taking these as well as cutting out the sugars. My suspicion is that the sugar reduction was the biggest contributor to my well being. If you are taking pro-biotics? it may be worth giving them a miss for a while to see if that has any impact.

[Hidden]

It may depend on whether you have squamous cell carcinoma or adenocarcinoma. About 30% of cases in the UK are squamous cell carcinoma, and this can, if caught in the early stages, be successfully treated with chemo-radiotherapy, but it is very much a technical decision about which you need specilaist advice from experienced specialists.

It is possible to replace your oesophagus with a section of colon, but this is rarely done these days because the method of 'pulling up' your stomach to join it to the remains of the oesophagus has replaced it as a surgical technique. This may be because the surgeons then have to manage fewer surgical joints in your digestive system; but the technique would be a potential option, depending on the details of your case.

Yes, you can digest food with a shorter digestive system, but you will probably have to eat 'little and often', and there are many people who have had their oesophagus and/or part of their stomach removed who enjoy a reasonable quality of life afterwards.

I was talking to a young lady last week who had travelled up to London for a meeting about a week after an oesophagectomy, but progress like that is exceptionally good. It does sound as if you have a condition that makes the surgeons think about how best to manage your case, and in your situation I would discuss with them the option of asking for a second opinion (as the young lady above had done) because it is unusual. The places people usually go to for this sort of second opinion are St Thomas' in London (James Gossage) or Newcastle (Michael Griffin).

There will have been an analysis of your tumour with a TNM analysis (T meaning the extent to which the tumour had advanced; N number of lymph nodes involved, and M any metastasis / spread) and this may, or may not have precluded any endoscopic therapy such as radio frquency ablation or endoscopic mucosal resection).

It is natural to feel worried at this stage, but it is basically a good thing that you are being offered curative treatment.

[kiddy in reply to Hidden]

Yes i have adencarcinoma so the prof says op is the best way to go for getting rid of the cancer. In tomorrow for bowel prep before op on wed.

[kiddy]

Update I had Ivor Lewis OP they managed to pull stomach up. I was in hospital for 3 1/2 week's. I did everything I was told. The ng tube draining my stomach didn't stop filling up so I had a stretch. .Next day tube removed and on a soft diet. I came home 2 days later. All scars on outside healing well. Jej tube still in place which I flush. I have had dumping syndrome which isn't pleasant mainly from full fat milk or fruit. I have been getting muscular spasms across right side of chest which I believe is from the scar I have down my right shoulder to under my arm. Trying to walk each day and do my breathing exercises physio gave me. Anyone else had these problems? Also going back to Oncology to discuss mop up chemo. My grade was T1 non spread in 9 lymph nodes.

[kiddy]

Finished chemo which was worse than before op. Had scan then best news on Tuesday that I was Cancer Free. Hoping to have tube taken out when I go for appointment at UCLH on Tuesday. Still get dumping syndrome and some swallowing issues but I can learn to live with these. Lost 3 stone which I put on for operation. Energy levels still vary day to day but I have to remember I have had a massive op.