Wife Recently Diagnosed - YOU are the best advocate for YOUR cancer!

Hi - early July 2022, my wife was initially told she may have lung cancer (as a result of Xray and CT scan). Then, on 12th July, she was told that she probably didn't have lung cancer and that was "probably" a misinterpretation of a blood vessel or artery on the CT scan! However, they had discovered a tumour on my wife's Thymus.

Since then things have moved pretty quickly, although I must stress that it helps if you keep a real close eye on things, as some NHS staff are incompetent (just like any other profession, I suppose). I decided to ease my wife of the burden of co-ordinating all the hospital appointments etc. and became the primary point of contact. Thank the Lord we took that decision because it's scary how easy it is for things to "get lost in the ether" when dealing with the NHS.

A MDT meeting on 14th July decided on urgent surgery to remove the tumour and various tests were required prior to surgery. An appointment was received to see the Consultant again on 2nd August, by which time all the tests would have been completed. However, they forgot to arrange "full lung function tests" and I had to highlight that and then ring around and plead for those to happen prior to seeing the consultant on 2/8 - TICK. I then realised that the Consultant appointment on 2nd August was with the wrong Consultant - my wife's care having been passed to the surgeons. I therefore had to liaise extensively with 2 secretaries to get an appointment with the correct Consultant - TICK for 4th August.

On 4th August, it was explained that the surgery would be performed at a hospital "out of area" and my wife was on the "urgent list" and should be operated on within two to three weeks. Having heard nothing 11 days later, I chased things up on 15 August. After much ringing around, it transpired that the "referral letter" to the "out of area" hospital had not been done by the Consultant or his registrar; the "out of area" hospital therefore had no knowledge of my wife's case and we'd "lost" 11 crucial days. 

Then, a clinical nurse got involved and she said that the case was not down as "urgent". I was assertive in my response and emailed her a precis of what we had been told and when. I am awaiting her response.

Looking at some other people's experiences, I am grateful at the relative speed with which things have happened, albeit we have this delay at the most crucial point i.e. the surgery date.

My main point is that communication within the NHS seems poor. Generally, the clinical nurses just seem to tell you what you want to hear on the day of a consultation and then do little to chase anything up when what they have told you does not happen. You have to chase it yourself and I have found the Consultant's secretaries to be the most helpful.

The Consultant Surgeon also appears to be back tracking a little in that he has now mentioned "benign thymoma" to the nurse. NO SUCH DIAGNOSIS CAN BE MADE FROM A CT SCAN - and don't let them tell you otherwise. The ONLY way anyone can tell if a tumour is malignant is either by a biopsy or by removal during surgery and examining it under the microscope (biopsy of Thymoma carries risk of metastasis so best just "getting it out"). As a result of much more research, many oncologists refuse to even use the word "benign" nowadays regarding Thymomas.

In summary, keep a very close eye on things as the admin within the NHS can be awful. In our case the nurses appear not to be of much assistance in resolving anything and you are better dealing with the Consultant's secretary. 

I hope this is resolved soon and my wife has the "urgent surgery" she has been promised several times, by different people now.