Hi Halfpennylane,

A very warm welcome to our forum.

I am sorry to hear about the symptoms you're having and the worry that these are causing. I had 2 bouts of breast cancer 14 years ago. I was in a similar position a few years ago and had an MRI in 2019. They didn't find anything , other than signs of natural ageing and put the cause down as "neurological", without any further reasoning. Since then, I have started to fit and collapse, without losing consciousness. These fits are becoming more frequent, so I had a CT scan 2 weeks ago today. I am still waiting for the results. There is no doubt about it - this is a very anxious time and, although they mean well, getting platitudes from family and friends, can be frustrating.

There are a number of less sinister things that could be causing your symptoms, so I'm keeping my fingers crossed that you'll get good news. Try to steer clear of Google in the meantime, as it tends to hone in on the more spectacular cases and will only serve to scare you further.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine, thank you so much for your reply. Sorry to hear you are going though an anxious time too, it's so hard isn't it ! 

I've definitely made the mistake of googling and won't be doing that again any time soon. We always latch on to the worst don't we, I think sometimes I do it as a way of almost preparing myself if it was bad news. 

My head is driving me crazy, barely sleeping as it hurts so much when I lie down, so really hope it won't be too long before I get results. I've started smelling burning rubber at random times too which is confusing to say the least !

Sending lots of love and positivity regarding your results, I hope you can get some answers for the fits you are having soon.

Take care and keep in touch x

HI Halfpennylane,

Waiting for answers is always difficult and our over-active imaginations often lead us to all sorts of dark places. I still heard nothing from the hospital today. I shall leave it until Thursday and, if I haven't heard by then, I'll phone my breast care nurse. Has your GP given you anything to deal with the headaches in the meantime? I am glad to hear that you have given up the googling - the only purpose it ever serves is to scare us even further. Can I ask what age you are? - I am 74.

Let's both try to remain positive, until we get our results - Time enough to worry after that, if the news is not good.

I'll certainly keep in touch.

Kind regards,

Jolamine xx

To Halfpenny and Jolamine I really hope you both get the all clear from your scans ,its a very worrying time for you both ,hopefully there is some truth in the fact if there was something sinister happening you would have been informed immediately ,Best Wishes to you both x

Good morning Jolamine, how are you ? 

I think that sounds like a good plan to get in touch with your breast care nurse if you haven't heard anything tomorrow, hopefully they can offer some reassurance and possibly chase up results for you. 

The GP hasn't offered any medication for the headaches, just said to continue with over the counter pain relief. I'm trying to just take them at night as that's when the pain is worse and try not to bend down much in the day ! 

Yes sure, I'm 37.

You're absolutely right, we both must remain positive. It's been a week since my MRI, so I'm trying to tell myself  that with each day that goes by and I dont hear anything, it is less likely to be something serious.

Kind regards 

Scarlett 

Thank you for your kind words. That's exactly what I'm telling myself,it's been a week now since my MRI, If it was serious I'd know by now. Its just difficult to distract myself when the pain is there.

Kind regards

Scarlett

Hi Jenny,

Thank you for your good wishes.. Hopefully, we'll hear something soon.

Kind regards,

Jolamine xx

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 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 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

Hi, I hope you are well .I am just wondering how you have gone on please. I have had similar recently. I hope you are ok.