17 months post op

[Helenmick]

Hi all my hubby had his surgery 17 moths ago and is doing well eating is getting better but occasional reflux possibly due to over eating. ! I have read recently about lots of recurrence on another site and they all seem to be around 14-18 months post op. It is beginning to panic me that he is now at that stage and will it come back. How long does it take till the risk is reduced. He is not worried about it but it is all I think about. Don't know what I would do without my anti anxiety meds I take more tablets than him !!!!

[Mentalmicky6]

I'm four and a half years post op with a very good appetite but now and then I get too big for my boots and eat too late in the day which in my case results in bile reflux which is horrendous , so the golden rule is don't eat after a certain time , for instance if you want to sleep at ten, then no food after eight or better still after seven . Good luck

[Aussiepete]

Hey,

Congratulations on the above. It's a long old road but it does get better. One of the things that amazes me is just how different the experiences we all have are - I guess it's down to surgeon and the amount of our insides they "rip out" along the way.

On bile/reflux. I get recurrences of this and keep gaviscon tubes and chewable tablets with me at all times. Pastry, rich tomato sauce, rich soups, etc all real havoc on me but not predictably. I put it down to quantity of food, time eaten, combination of food, stress levels, tiredness, etc. One sure-fire way I found to reduce chances of reflux is a scoop of vanilla ice-cream after dinner/before bed. Oh - and sleeping on a slight angle - I'm at three pillows (down from a 45-dgree wedge).

I'm about 28 months post op (Jan 2015) and the slight niggling "fear" of recurrence is still there. Positive outlook is incredibly important. I was fortunate enough to go private and my insurer has been brilliant. I see my oncologist every nine to twelve months and my surgeon the same but alternating (i.e. I don't see them in the same month). I always ask for a CT-Scan before I see my oncologist . I actually saw my oncologist yesterday - scan all clear. She said that 24 months was a milestone in terms of recurrence i.e. if nothing has come back by then it's a good thing.

From my perspective if you need reassurance you should ask for a scan, ask to see your GP, Oncologist, Surgeon, etc. I have also found the folk at McMillan to be brilliant - I pop in for a chat every now and then....

All the best.

[DavidP]

Hi,

AussiePete mentioned that his oncologist stated 24 months is a milestone - this is based on the MAGIC trial (which set the standard of use of ECF and then ECX plus surgery in the UK). Recurrences flatten out after this time but probably from about 18 months by my reckoning. If you want to see the evidence you can find it through the link below and you need to look at figure 1 panel A. nejm.org/doi/full/10.1056/N...

Personally, I ignored all the statistics and concentrated on adopting a posittive attitude - it can be beaten - I'm 5 years post-diagnosis in May and doing well. I know it's hard seeing your loved one go through this, I was so concentrated on getting over the cancer that I didn't realise until later how difficult it was for my wife. Stay strong there is light at the end of the tunnel.

Dave

[raybo]

WAS THIS FOR ACHALASIA OR WHAT.FROM RAYLAWTON.THANKS

[Spikey]

My adenocarcinoma was staged as T3N1M0, which means there was minor lymph node involvement. My oncologist told me (because I asked him point blank) that statistically my chances of surviving more than 5 years were better than 50:50, and that they improved exponentially the longer I survived. I refused the offer of regular scans and decided to take my chances. I think we all worry constantly about a recurrence, but it does get better over time. I am now almost 10 years post-op and the chances of the cancer recurring are no worse than for someone whose never had it.

I have to say that one of the shortcomings of the NHS is the lack of adequate psychological help for cancer survivors and their carers.

Good luck.

[Hidden]

Firstly the reflux you describe is not normally a sign of cancer recurrence.

David Kirby, who started the OPA 30+ years ago after undergoing this operation, is still alive and enjoying well-deserved retirement and there are many people who are in an equivalent position of having had successful treatment many, many years ago. When treated in its early stages, the statistics for survival can be up in the 85%+ bracket.

I am sorry to say that it is not as simple as something tending to occur at certain points after treatment. There are no guarantees, and in your heads you probably both know that. In the early days one can believe that every twinge is a sign of cancer returning, but after a while one begins to develop more confidence in one's body and its re-arranged 'plumbing'.

Anxiety about recurrence is very natural, as are anxious reactions by spouses and other family members and loved ones who are inevitably caught up in a hectic and traumatic round of hospital appointments and visits, and then working out how to feed him, and so on. There is very little attention given to carers and what they go through because nearly all the attention goes on to the patient. But it is a trauma that you both go through, and there does come a time, quite often around now, when things do catch up with you and you have to try and come to terms, mentally, with everything that you have been through.

It is common to have to take some form of medication to help. But it is even more common for people who have had to go through successful cancer treatment to need to go along to a trained counsellor at a Maggie's centre or other cancer support centre where the staff are very familiar with helping people to get through this stage of things. Appreciating life for however long we have it, whether it will be for months or decades, is a very valuable thing, but we sometimes need a bit of help to achieve that when we have been through a bleak and traumatic period. Women quite often go on their own, not least because men quite often seem to deal with things differently, but it is not quite as simple as that.

Dr Peter Harvey wrote a paper called 'Now the Treatment has finished - then what?' which some people find helpful:

cancercounselling.org.uk/Af...

[champagnelover in reply to Hidden]

I found this article very helpful even though it is almost 8 years since my diagnosis and treatment. It explains so much and there is so much truth in it about recovery I wish I had read it earlier.