I suppose I have been lucky that my myeloma remained quiet (is the word simmering correct) for eight years but blood tests I had at the end of last year prompted my Consultant to arrange a PAT - MRI scan just before Christmas which revealed a tumor on a rib in my back.
I was told on 23rd Jan it was time to start treatment and a panel had decided this would begin with a course of Radiotherapy treatment over the following three to four weeks to blast the tumor, then a review meeting on 27th Feb with the Consultant (Dr Gomez) to discuss Chemo. treatment. OK I went away quite confident.
Days went by and no contact from the Radiotherapy unit so I phoned them and after being passed around various people found out that I had not been referred for Radiotherapy, that Dr Gomez had "not got round to it". His secretary assured me he had now sent the referral and I would be hearing something soon.
Days went by and still no appointment I phoned again on 10th Feb. They had my referral and someone would get back to me before 11am the next day.
I got a call the next day at 2pm, it was Dr Gomez, "how was I?", frustrated, what is happening?. He explained that a radiology consultant had looked at my scans and decided that I did not need radiotherapy but should go directly on to the Chemo treatment. Dr Gomez said that provided I was not in any pain he agreed with this and would discuss the Chemo treatment with me at out meeting on 27 Feb.
I was a bit stunned by this and should have asked more questions but I didn't. I had a little trouble clearly understanding Dr Gomez on the phone as English is not his first language, it will be easier for me sitting in front of him.
Is it common for treatment decided by a panel to be changed by a single Doctor. I can't help wondering if the Radiotherapy Dept. is extra busy and are trying clear some of its referrals!
I would appreciate any thoughts or comments.
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that your Myeloma has raised its head again.
I have a different type of Blood Cancer so do understand the complications behind treatment and as to how decisions are made.
MDT meetings are a collection of experts from all areas of treatment who assess the best route forward and agree on this. Yes it can be the voice of one specialists highlighting that there was no advantage going down a line will influence the MDT - it happened to me, but its all about trust..... and nothing about clearing referrals. It's all about getting the best treatment for your presentation and importantly not over treating your body as once you use some treatments they can not be used again.
You need to get your questions all ready foe your appointment or call your SCN.
Can I direct you to this link to our very supportive Myeloma group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
Our Online Information and Support Section is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
All the very best.
