Hodgkin lymphoma

Affected by Hodgkin Lymphoma? Join this group to share experiences and ask questions to people who understand what you're going through.

Being lied to/misled about PET CT results

Hodgy
Posted by

Hi, has anyone  experienced this sort of thing?

I had Stage 4b HL mixed cell. I had 4.5months out of 6months of abvd chemo , ended early in August due to side effects.

.Remission after 2 or 4 cycles.

I then had a PET CT scan recently because i was experiencing back pain again. I was told it was all clear, no sign of anything.

This was last week & was given over the phone by an oncologist (as it was already two weeks since scan and i was stressing out worrying).

Then i went to my post-scan appointment today and i am told that actually the scan did show unusual uptake in my spine and right in the spot ive been getting pain.(saw scan myself, its obvious & impossible to miss)

Now i need an MRI.

I asked why i was told it was all clear, they said we thought it was benign . Its been hugely mentally torturing on me. I cant even eat atm because of it.

Now I feel i cant even trust them .

Surely this has to breach some sort  of rules?

Thehighlander
Posted by

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here.

I am Mike and I help out round the Lymphoma Forums. I was diagnosed 20 years ago with my rare type of NHL and the situation you are describing is indeed familiar to me. 

I have to be honest and say that on the occasions I was told one thing and then a few days/weeks later told something different was initially frustrating....... and were they making mistakes?........... But I never once thought they were lying to me - why should they?

As well as my Lymphoma I also have Asbestosis in the lungs and it just happens that my Respiratory Consultant is a very good family friend. So we sit at appointments and chat in depth about various things including the diagnosis process.

He admits that there is a very fine balance on getting things spot on first time. So often reports are made based on the evidence at that point in time...... but when a case goes to an MDT Meeting new light can often be thrown on the case.

Should the first report be made? maybe not. But that is why the MDT system is used to ensure a wide spectrum of minds are looking at and reviewing each case.

A few years back I was face down on the CT Scanner bed getting ready to have a very large needle put through my back for a lung biopsy and the surgeon came back after doing a pre surgery scan to say the growth area had all changed in the few weeks that it had taken to set up the biopsy - I was told to go away as it now was not a problem........ as you say mental torture.

I have also had a few scans that were showing suspicious areas and following more investigations it turned out to be benign scar tissue. Lymphoma is inherently difficult to pin point even for the very best minds.

You should sit with your team and ask them the reasoning behind the change of mind just to get a feel as to where everything is at and what their next plan is is one is required.

If you feel that your trust in your team has broken down you could get a Second Opinion.

Everyone can also make a complaint and you would do this through the NHS PALS system. 

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be very helpful even if all you want to do is talk with friendly person that can help in lots of ways.

We also have our ‘Ask an Expert’ section but please allow a few days to get an reply.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.

If you haven't yet completed your profile when you have a minute could you pop something about your journey so far into it. This really helps others when answering. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine profile by clicking on my username.

All the best.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela