Misdiagnosed achalasia

Dear RosieBlu 

 Welcome to our online community, I hope you are finding it helpful. My name is Joanne, and I’m one of the Cancer Information Nurse Specialists

We’re sorry to hear about your recent diagnosis and that you have had multiple tests over a period of time before receiving a cancer diagnosis. This must be very frustrating.

There is likely to be several reasons why your cancer wasn’t detected sooner, it may be that the cancer was too small to detect when your barium swallow was performed. Also, you state that your gastric carcinoma was located on the outside of your stomach which would have made it more difficult to detect by endoscope.  Here at Macmillan, we are unable to access your medical records so can’t comment specifically on your individual case. It may be helpful for you make a list of your concerns and questions and then ask for a meeting with your specialist team so you can discuss your treatment to date.

It is important to have trust in your specialist team and it can be difficult to know what questions to ask or to have challenging conversations, but these conversations are important. If you feel your questions haven’t been answered properly you can contact your local PALS department and ask for them to liaise on your behalf.

You ask how common this type of misdiagnosis is. Unfortunately, there isn’t a national data base with figures for this. Sadly, it does sometimes happen, more often with rare cancers or when symptoms don’t follow the typical pattern.

Whilst knowing the answers to the questions you pose is important, it is also important for you to take care of your physical and psychological health so you can undergo any treatment recommended.

 I wonder if you might benefit from giving our support line a call. We often find we can explain our answers in a bit more detail over the phone, giving you the opportunity to ask more questions if needed. It can be very overwhelming not knowing how things might affect you moving forward. And although we can’t tell you exactly what to expect, we can help explain what usually happens for most people in a similar situation.

I hope this information helps. Please feel free to get back in touch if you want further information or support.

Best wishes

Joanne F,

Cancer Information Nurse Specialist.

You can also speak with the Macmillan Support Line team of experts by phoning 0808 808 0000, calls are free, and lines are open 8am-8pm, 7 days a week, or you can send us an email or use webchat.

Ref JF/KHa