Mis diagnosis

[margie1]

Hi has anyone else had a similar problem and will I ever get over this? I can't forgive the doctors who got it wrong. I had asthma symptoms and was treated for asthma for over 12months then I saw another doctor who said I didn't have asthma that it was angina! My heart scans were all ok so I saw another GP who finally picked up that it was a problem with my oesophagus I was finally diagnosed with oeaophagus cancer last march and had a oesophagectomy with part of my stomach removed in August, I still have Asthma like symptoms sorry for going on think I'm still upset that it took nearly 2yrs to be properly diagnosed

Regards Marg

[liz_crisp]

Hi Marg

The answer is Yes

I was diagnosed with stress angina nov 2006 and then just stress then possible alcalasia and finally oesophageal cancer in April 2009, it was a shock. Unfortunately it is a rare cancer and thankfully i was diagnosed early enough for the op. The road to recovery is long and hard and I also went through a mill of emotions. It takes a while to adjust to the changes in lifestyle but 3 years on I don't have the energy or the time to be angry with anyone or the cancer. I am too busy volunteering and enjoying life.

Wishing you lots of strength on your road to recovery and a huge big hug

Liz

[medway]

The problem with oesophageal cancer is that there is no pain or symptoms in the early stages and its not until a endoscopy is done that it can be seen. My cancer was only picked up when I had a precautionary scan after prostate cancer and 'something' was seen on the scan but it was not known what it was. the endoscopy found it just in time as it was a GIST with T1 cancer. 15 months after surgery I am nearly back to normal with just the usual digestion problems.

It is not widespreadly known that everybody is in danger of getting oesophageal or stomach cancer and more often than not it only in the later stages that it is found. Reflux and indigestion must be taken seriously. There is no pain until too late. My father died of Oesophageal cancer and went to hospital when he started getting pain and it was too late. It may be hereditary?

Being a doctor and trying to make a diagnosis is not easy as common illness symptoms can be the same as more serious ones.

Like you I have had part of my stomach taken away. The positive side is that you are on your way back to restored health. I know the problems of discomfort after surgery and you should make people aware of what can happen if not spotted early enough. We have survived! Oesophageal cancer is on the increase in the western world.

I am a volunteer for feedback to all after a merendino interposition where cancer is only T1 and you have this option. The advantage is no reflux but it is major surgery. Contact the OPA if you would like to know more or would like to speak to me.

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It does happen that unusual underlying problems that also have similar symptoms to more common illnesses are not discovered straight away. The problem with a number of different sorts of cancer is that, say, bleeding from the back passage, or persistent heartburn may indicate something more serious, but the chances are that it is something a lot less serious than cancer.

It is not unusual for cancer cases to need a number of visits to a GP before being referred for specialist examination. This issue of early diagnosis is a problem in the UK - other countries seem to do it better, and that MAY be because people tend to be on health insurance schemes in other European countries, so the GP sends people off for specialist examination more readily. There are quite a lot of people who have had oesophagectomies who would tell a similar / equivalent tale and they are now alive, well and their treatment / surgery was successful. So whilst we do believe that more liberal referral of patients for an endoscopy should be the norm (the NICE guidelines are being reviewed), there are a good number of patients who, nevertheless, are diagnosed in time for their treatment to be successful. (The bigger problem is those who have not been to their GP at all)

One other thing that would help is to get a system for more complex testing into GPs' surgeries. In the case of oesophageal cancer there is a pill on a string that is being tested at the moment. The GP pulls it back up again after you have swallowed it, that is sent off to the lab, and the lab then analyses it for cancerous cells or Barrett's Oesophagus. But that is for the future. There are 43,000 GPs in the UK, and 8,000 cases of oesophageal cancer each year, so it is something that is unusual for them.

There are two other things that can help. One is to record things carefully so that when you are explaining things to the doctor there is a more comprehensive history for them to take into account (but the trouble is that we sometimes do not know what might be relevant). The second thing is to return to the GP when symptoms do not disappear. It is fairly normal for them to try treating a condition that is most likely to have occurred; and then to revise their opinion later, sometimes having had tests (eg like your for angina) which rule out what the doctors first thought . In your case you did return fortunately, but the whole process took a long time.

If you have any sort of cancer there is a fear of recurrence, and this anxiety applies to some extent regardless of other factors. There is not a straightforward solution to this side of things, and it is something that you have to think about, talk about and to come to terms with. The hospitals do sometimes have specialist cancer centres with counsellors who are experienced at talking things through with patients, and this might be something that you might like to think about.

Loss of health can sometimes be a bit like a bereavement. There are various stages, including a perfectly normal stage of anger at how events have affected you. There is also a parallel emotional track that you have to travel along with illness as well as the physical, medical one, and we do not fully recover until we have sorted out our feelings as well as achieving a physical cure. I suspect that setting out the issue on this thread has probably been a good start on this side for you.

At some stage or other, sooner or later, for something or other, you will need to go back to your GP. It is important to have a good relationship with them. The easy thing is to avoid the first one and to seek an appointment with the GP who did diagnose the problem more successfully; the more difficult thing is to confide in the GP about how you feel and to start the process of rebuilding the relationship. So the answer to your question 'Will I ever get over it?' is 'Yes' - but it will largely depend on how you think about things and take it on from here.

[margie1]

Thank you after reading your replys I have a better understanding of what happened to me and why. I am thankful that I am here to write this and will now concentrate on recovery and living mylife to the full thank you again

Marg

[Bernadette]

I feel and also experienced some of the disappointment you went through. In 2007 I had surgery as a parathyroid had lodged next to my heart instead of my neck, this meant I had to have my chest opened, I recovered very quickly from this op at the end of June but by September I was really sick and knew something was very wrong, however on visits to the GP I was told there was nothing wrong, it was all in my mind after my June op, I could not eat any solid food, only clear soups. I was given tablets from the doctor, in February 2008 I read in the daily mail about a pill you swallowed that took photo's as it passed through your system, the nearest place doing this test was Swindon, it cost me £1500 but I just knew there was something wrong, after my test the consultant told me that usually the pill took either four seconds or minutes to reach the stomach but mine took FOUR HOURS...he wanted to continue at the local hospital but I was not in the area, I told my home doctors and I was referred to the nhs hospital locally in February 2008, by June I was no further forward, so I paid £200 to see a specialist privately at local private hospital..bingo..within 2 weeks, they were able to tell me that I had a tumour in my oesphogus and needed surgery, that was why no food could pass into my stomach. I was angry and upset that no one had really listened to me, I think we are the best judges of our own bodies but we are not the experts. I think we just have to keep on and on until we get answers..after all it is our lives that are at stake. I know not everyone can afford private consultations but to me I feel it saved my life.

Good luck with the future.