Hi Halfpennylane,

Have you had your results back yet?

I finally got mine and there is no sign of cancer, which is a relief. The nurse couldn't tell me how my scan compared to my last MRI, which showed some early changes. She was also unable to comment on whether or not this showed up any problem with my back, which is giving me a lot of pain. She told me that my consultant would be writing to my GP once she had seen the CT results. My GP is off on sick leave until the new year, so I'm unlikely to hear any more before then. 

The nurse phoned me again yesterday to say that the consultant has referred me to a neurologist. Whether this is because of anything she's seen on the scan, or is just a precaution, she didn't know.

I sincerely hope that you get good news too.

Kind regards,

Jolamine xx

Hi,

Please don’t worry about the speed, that just shows that someone was doing their job properly.
By coincidence, my wife had an MRI brain scan last week after being admitted via A&E
Her initial report was available within 2 hours but was referred to a specialist unit for review by a consultant there. That report arrived about 24 hours later. Luckily it wasn’t life threatening and she was discharged pending an outpatient appointment in January. 

Routine reports do take up to two weeks, emergency reports should only take hours. I strongly suggest you chase this up by phone, if only to put your mind at rest. Don’t be fobbed off by any BS about “it always takes this long” or feeble excuses about Christmas - the NHS is a 365/24/7 service.

This is your life and health - trust me, if it was the radiologist’s family they’d have received the results by now. 

Good luck.
Dave 

Hi Jolamine,

As you know, I can sometimes be the patient from hell. No-one likes a smart *** patient!

On a positive note, a few years ago I asked my new oncologist whether it was possible to make a video clip of all my historic CT scans to review as part of my next MDT review (I knew it was because of my professional background). He said he’d look into it. A week later he called my mobile to say the results were unexpectedly insightful. My primary and secondaries had stopped growing and had shrunk slightly following palliative chemo as we’d hoped.
What was unexpected was the fact that they’d all slowly continued to shrink over the intervening years until I had no visible signs of cancer. The difference between each six monthly scan wasn’t obvious but viewed in sequence as a time lapse it was. No-one can explain why this has happened nor why I have survived for ten years following a stage 4 diagnosis. Obviously I’m grateful but who knows how long my unexpected remission will last?

Sadly as patients (or as family members of patients) we need to be our own advocates because everyone involved professionally is dealing with hundreds of patients and isn’t as invested in a positive outcome as we are. 

Good luck with your neurological referral!

Best wishes as always
Dave

Hi Dave,

I am so glad to hear that your request to your oncologist was granted and that the results were so pleasantly insightful. Better still, was the fact that the shrinkage continued over the intervening years, until there were no visible signs of the cancer. This must have come as a great relief to you. Unfortunately, none of us can tell how long we will remain in remission, but I sincerely hope that it will be a long time in your case.

I am sorry to hear about your wife's trip to A & E and I am glad to hear that her MRI result wasn't life threatening. I do hope that they can do something to help her, at her outpatient appointment.

Having worked professionally in the NHS myself for some years, I totally agree that there are times when we have to be our own advocates. I have had to do this on a number of occasions and fear that my poor consultant must sigh, every time that she sees my name on her list.

Many thanks for your good wishes for my neurological referral - I hope that I won't have too long to wait before I see someone.

Kind regards,

Jolamine

Hi Jolamine, how are you ? So pleased you have had your results finally and there is no sign of cancer, that's great news ! 

Hope you get your neurology appointment soon to put your mind at ease. Have you heard from your GP ?

I've had my results, they found a 2cm lump, so they want to do another MRI with contrast with determine what it Is. Not the news I wanted, but hopefully I'll know exactly what it Is soon.

Scarlett x

Hi Halfpennylane,

I am so sorry to hear that they have found a lump. I am sure that this is not the news that you hoped for. How are you feeling in yourself, since you were told this? The MRI should clarify, exactly what you're dealing with. Did they say how long you might have to wait for this?  Please let me know when you hear.

I've not heard anything from neurology yet, but hope that I do soon, as I am about to move to the other end of the country. The consultant stopped me from driving last time I was at the hospital and I am really missing my car at the moment. I am due to see my GP tomorrow and hope that she'll be able to tell me a little more about my CT results.

Please keep in touch and let us know how you get on and please remember, that I am always here for you. 

Kind regards,

Jolamine xx

Hi Jolamine, Ive got mixed feelings ! The Dr was very matter if fact and told me exactly where the lump is ( it's in my cerebellum/ brain stem) and how big it Is and that helped. I only found out yesterday morning so it was a bit of a shock, but I've been able to make sense of it more today and explains a lot of my symptoms I've been having. I'm hopeful it will be benign, but if it isn't then I have faith too that it will be treatable. It's the only way to look at it really or I'll worry too much .

Have you seen your GP ? 

Yeh I get that about driving, it takes away your freedom ! Hope it goes well with your move.

Thank you for thinking of me 

Scarlett x

Hi Scarlett,

Doctors don't tend to mince their words with tumours. It is good that you have finally discovered a reason for your symptoms. We'll just have to hope and pray that it turns out to be benign. It can take some time for a diagnosis to sink in. To start with it's almost as if all this is happening to someone else - maybe that's because we are to some extent, in denial.

I hope that your MRI comes through soon. My visit to the GP this morning was pretty useless. She was told that there was no cancer present in my brain and that my bloods were clear. She was able to tell me that I had been stopped from driving and advised that I speak to the neurologist about driving, when I see her. She wasn't  able to tell me how my back looked, or how this CT compared to my last MRI. Her advice was to phone the consultant's secretary today and ask her to send a full report of the CT, so that's my job for this afternoon.

Thinking of you and keeping everything crossed that the tumour is benign.

Kind regards,

Jolamine xx