Is it normal to have Chemo before and after surgery

[DebR]

I am 51 and was diagnosed with adenocarcinoma of the oesophagus in May of this year after years of indigestion and reflux that I did nothing about. (what sent me to my doctor was that I vomited blood). After staging I was told that I had very early cancer, stage 1 with 1 lymph node involved. I was told that I would need chemo and then surgery. I have just finished 3 months of chemo and saw my oncologist yesterday and he said I would need 3 more months of chemo after surgery, is this normal? I found chemo very hard and felt so ill for a lot of the time. I have had to have quite a lot of time off of work which I didn't really want to do (I am a nurse). I am not sure I can face another 3 months of chemo

[margie1]

Hi Deb

sorry you have had a bad time with chemo. I was diagnosed with stage 3 cancer of the esophagus which had gone into my stomach 18 months ago I had the same treatment that you are undergoing and i too was ill with the chemo i wont lie to you, and after surgery the chemo was worse with the 4th cycle (1st one after surgery) but it was worth going through it! i am still here, yes still recovering slowly but i am back at work, eating a lot better and best of all i am back going to watch football my favourite hobby of all lol it is worth it i promise you i know it may not seem it at the moment but stick in there with the treatment and please stay positive. would you keep me informed on how you are doing please?

take care

Marg

[DebR in reply to margie1]

Thank you for the reply Marg, its nice to hear from other people who have gone through what I am going through and have come out the other end. I will keep you informed

Debbie

[Hidden]

Hello Deb

I was similar to you nearly five years ago, diagnosed T2/3 N1 at age 56 after 35 years of ignoring indigestion. I remember saying exactly the same after 3 months chemo (bought to an early end by neutropenia) - I'm not sure I could take another three months, and I was being told it was quite likely to be needed after surgery.

In fact, when it came to it, as the tumour had been detected early enough, and the first three months of chemo having been so effective, and all lymph nodes testing clear, that I was told that no further chemo was necessary.

You ask if the three months more chemo is normal. The fact is, there is no normal. Every patient is different and so every course of treatment is different, tailored to that patient. If your team feel that there is the slightest chance further chemo would prevent a recurrence, they will recommend it to you. And I'd like to think that had I been recommended that, I'd have found the strength from somewhere!

But my advice to you is not even to think about that until the time comes. Concentrate on the surgery, and on enjoying the positives of the way you feel, having finished that awful three months.

Good luck with it all.

John

[DebR in reply to Hidden]

Thank you John for you reply. Not thinking about it till the time comes is very good advice actually that I will try to do. It is good to hear that you were diagnosed 5 years ago. When I was first diagnosed and did some web research the outlook didn't look too good but I am not sure that I was looking at the right web sights. I finished the oral chemo on Thursday and am just starting to feel better. But hearing that you didn't need the chemo after surgery has given me hope.

Debbie

[Hidden]

There are lots of people who have survived this cancer and have a good quality of life, sometimes many years after their treatment, and the chances of this being true for you are greatly enhanced by the fact that your cancer was caught early. Nobody would want to go through any of the treatment if it can be avoided, and it does challenge you in lots of different ways.

Having the chemo linked to the surgery in this way is because of various medical studies that have established this as the 'gold standard' for treatment of the disease.

If you would like at some point to chat with people who have been through all this before and come out the other side OK, give our helpline a ring on 0121 704 9860 and they will work out where the nearest OPA group is based. The OPA was formed in 1985 by David Kirby after he had oesophageal cancer; he is still alive and well.

[Spikey]

Dear Deb,

The standard curative treatment in the UK for adenocarcinoma of the lower oesophagus where there is any hint of lymph node involvement is three cycles of ECX or EOX chemotherapy, followed by surgery, followed by a further three cycles of chemotherapy. This is based on a research trial carried out about ten years ago led by the Royal Marsden.

Like you, I was diagnosed with early stage oesophageal cancer with one lymph node involved. That was six years ago. I tolerated the first three cycles of chemo moderately well, but the post-operative chemo caused a severe adverse reaction, which led to five days' hospitalisation, and had to be abandoned after only one cycle. This is, apparently, very common, with many patients either being judged too weak to receive post-operative chemo, or it being abandoned after one or two cycles.

I have subsequently learned that there is no evidence that post-operative chemo improves survival chances. It is to a large extent an "act of faith" by oncologists. If you are concerned, I suggest that you talk to your oncologist and ask him directly what his view is on this and, if you are not satisfied with the answer, get a second opinion.

Good luck, G

[medway]

I had stage 1 cancer of the stomach & barretts of the oesophagus. With lymph node affected it does suggest it could also be stomach cancer as it can go through the stomach walls to the lymph nodes. It important to tell everybody you know that reflux has serious consequences in the future if not treated. it is the most unknown and unadvertised common problem that people suffer from with dire consequences. It is increasing in frequency at a rapid rate in the west (over eating? It is less common in the east - less food?)

Its interesting that you had chemo. I did not not. I am informed that sugery is the usual thing for T1. Perhaps you had chemo because it went into a lymph node.

If you have surgery ask about Merendino Interposition which removes the horrible reflux issue of the full pull up (Ivor lewis). Like all UGI surgery it is not plain sailing after, with digestion problems of varying degrees. I'm certainly not the same person and i dont think others are.If you search merendino interposition on the internet you will see my feedback under 'medway'.

I am informed that there are 3 layers of the stomach and cancer has to go through all three to the lymph nodes. I had T1b which means it got to the 2nd layer.

Good luck with your treatment and be confident that a lot is known about this cancer, probably because of the frequency of diagnosis.

[spanner16]

Hi, I've just finished my post op chemo (16th May I took my last dose) and I had the same as you, lymph node involvement. I think with it being in the lymph nodes there is a better chance of catching it with chemo rather than simply surgery.

My post op chemo was, I'm not going to lie, horrid but all I kept thinking was if this gives me a better chance of survival (I'm only 27 so need all the help I can get!!) then nine weeks of my life is nothing. Just try and put you blinkers on keep your eyes on the goal and just take it 24 hours at a time.

I also found it helpful to keep a diary of how I was feeling because there were times when I thought I couldn't go on any longer. But most of the time when I looked at my diary I saw that in the previous cycle things started to get better about 24 hours after the point I was at then so I knew that if I just made it through another day then things would start brightening up again.

It's the toughest thing you'll ever do but I'm back at work part time, back at the gym and getting my eating back on track slowly but surely. It really does get better.

[OPA_Pilmann]

Hi Deb,

For what it is worth I had my surgery 11 years ago at the same age you are and had chemo before and after as suggested for you. I jumped at the chance as to me it suggested that any cancer cells released during the op would be mopped up after. I found the chemo before not too bad and it shrunk the tumour, but the chemo after was more difficult. However I am glad I did it as I firmly believe it gave me the best chance, and a few months suffering is better if it gives you that chance. My advice is go for it, but be prepared that the latter doses will probably be rough.

Also my advice is to look for a support group in your area – Talking to others who have been through it really helps. If you live near Colchester look our one up on the web – gics.org

Good luck

Phil

[Rayslife]

Hi DebR I also had this terrible op nearly three years ago and still suffer with post op problems. Regarding the chemo I suffered terribly and I was taken off it as it was literally killing me; I lost Twelve pound in body weight in just one week as I was unable to eat and hardly drink.

I had stage three cancer and had removal of just about everything, I cant remember the exact staging but they said it may have been stage four as I had left it so long. My specialist nurse said I was extremely lucky that it wasn't in my liver.

The biggest problems I still have after nearly three years is the ability to swallow as it hurts and food still gets stuck in my throat, you really think when this happens this is your last day on planet earth. The second problem is my right side as I have a scar a "Great White Shark" would be proud off. It feels like someone is grabbing the flesh to my side very tightly and every single move is noticeable.

Saying all this I am back to work! it has taken me three years to build up to this, I feel it is very important to develop a positive mind in regards to this disease.

I am not the same person physically now and cannot do as much as I used to but I am determined to kick this disease in the proverbial "Butt"

What works for some people may not work for another but this forum has to be helpful in giving people ideas in improving there lives.

Good luck

[Deeedals]

Hi DebI was diagnosed on Jan 21st , stage 3 adenocarcinoma. Like you I was a little taken aback not only by he diagnosis but at the intensity of the treatment. As you say, it came as a shock that after such radical surgery I would still need more chemo. However research has shown that there are better outcomes with post surgery mop up chemo.

I have surgery on 9th June and I’m just going to face each day as it comes, tackling each challenge as and when. I have put all my trust in my hospital team and my family to get me through this.

I’m a believer in positive attitude brings positive outcomes.

Look after yourself, I wish you all the best on your journey xxx

[Mentalmicky6 in reply to Deeedals]

I had the same illness diagnosed in 2012 and after many tests was offered the gold star treatment which meant 3 three week cycles of chemo ( 9 weeks) which although unpleasant shrunk the tumour and I started eating again which to me was a miracle, I then had the op ( Ivor Lewis) which was tough and a couple of months after had the post of 9 weeks of chemo and then at the age of 63 eight months after the op I started working again lifting heavy radiators and all the other things involved as being a plumber and i'm still working now coming up 73 thanks to all the wonderful medical people working at the Royal Marsden's at Chelsea and Sutton