Brain mri showing something

[ShazD]

I have been having headaches for the padt 6 weeks. They thought it was due to the avastin but suggested a brain mri and body pet CT. pet CT was clear but brain mri showed something on my meninges at base of skull. Oncologist saw me last night and has admitted me for a different mri of brain and a lumbar puncture. He has told me worst case scenario would mean radiotherapy. A bit devastated but trying to remain positive and hope it is something else as he did say it did not make sense but i clearly had something in my scan that was not normal. This disease really throws some punches.

[BeeWild]

Got fingers crossed for you there’s a simple explanation and treatment to stop the headaches xx good luck sweetie and stay strong x

Bev xx

[Petrolhead]

Hi Sharon

Certainly sounds a bit scary. Not sure whether when the medics only give a bit of information is worse than giving you all the possible scenarios.

Hope you get your new MRI scan pretty soon and get some answers.

Best wishes Fay

[ShazD in reply to Petrolhead]

So I have had a spinal mri and a lumbar puncture. The neurologist has reviewed me and told me the area they are concerned about is right on the brainstem. The csf shows normal rbc and wbc and no abnormal iptake of glucose. My full body pet ct shows nothing anywhere else. We are now waiting for the cytology of the csf and another brain mri. They are starting to look confused as i had been told they thoight it was the oc metastasising ( the scan said suggestive of metastatic loading). I feel so exhausted and my poor husband was in paris for work when I saw the oncologist on thursday. I had to have the scans at work and was trying to avoid my manager so that she didnt ask any questions! She then bumped right into me. Why does that happen?! She did not ask any questions as fortunately i had told her last week that i was having some routine tests this weeks and after my meeting eith HR I think she will be treading carefully.

If this area is not a tumour I am not sure what it is. They all looked so concerned we just asumed the worst. It certainly made me do some serious thinking about my life. I now understand the feeling some of you have described when told there is a recurrence.

Shaz

[Petrolhead in reply to ShazD]

have replied once but I think it has gone into the ether.

Gosh- more questions than answers. Will they wait for the cytology report and the new brain MRI before you can talk to someone again- I suppose so as they do not seem to be at all sure what is going on. Any idea how long before the report or the new scan- really hope it is sooner rather than later.

You made me smile re the HR lady- it just had to happen. As for treading lightly so she should.

I really cannot imagine what you are going through- it must be so draining all this uncertainty. Thinking of you

Fay

[ShazD in reply to Petrolhead]

Yes the cytology should be back by tuesday so they should have all results by then. I am due avastin on thursday so i think they are trying to get all info together before then and make a plan

[Petrolhead in reply to ShazD]

moving rapidly then. Thats good. Keep breathing !

Fay

[Seasun36-uk in reply to ShazD]

Hope all goes well today and that what they saw is ‘something else’. Lx

[ShazD in reply to Petrolhead]

Yes the cytology should be back by tuesday so they should have all results by then. I am due avastin on thursday so i think they are trying to get all info together before then and make a plan

[LittleSan]

Hope it can be easily sorted. Xx

[Andonigolfer]

My doctor once told me a brain tumor is like a big headache. He was right.

[Maus123]

Hi Sharon. I would worry too. Hopefully it's nothing too maliscious. Fingers crossed for today. Please let us know if you can. All the best. Maus.

[ShazD]

Thanks guys. I have been reading 'The Cancer Whisperer' this morning to give me some strength. I had to meet with my new chief nursing officer yesterday at a Clinical Nurse Specialist meeting . I had bruises all over my arms from my weekend hospital admission (I have a port which people would not use) and was so emotionally drained but had to pretend all was OK with life. She kept me behind after the meeting and asked how I was doing and had so many questions for me about my disease. I managed to hold it together and told her all was fine for now and I was thinking positive. She actually seemed very genuine and quite approachable (more so than my manager). We were warned she is on a mission to clear out the deadwood in the organisation and handed us a 12 page form to fill in with our qualifications and rationale for why we consider ourselves suitable for our positions as CNS. A few girls looked panicked but at least I have the qualifications for the post and can rank myself next to my peers in the NHS so that might bide me some time if I need any further time off. We have just had a new gamma knife machine start up at work which pinpoints specific brain tumours so it might be quite timely! She was very excited about it and everyone seemed to turn and look at me when she announced it. Brain MRI is scheduled for this evening. No news yet regarding the cytology.

[ShazD]

No brain mets!!! The cytology was clear. They now think it must be something to do with effects of the chemo. The second mri showed the same subtle change so they are going to rescan in 6 weeks to check all is still ok. What a relief...

[Nancy222 in reply to ShazD]

Great news indeed! What a relief. Celebration time!!!

[Coldethyl]

That’s great news xxx

[Lizchips]

Hi , ShazD, I had some aches and pains base of neck, mostly from immune system drugs. Hopefully, it won't be anything serious. I get headaches more now. I always feel like neck at base of skull is out of alignment. Hopefully it will be ok. Our cancer doesn't usually go to the brain, so hopefully you will be ok. Doc told me usually when ovarian comes back its in the spleen or kidneys most times and we take it out and chemo again. I truly hope you'll be ok, praying for you, ❤❤❤🙏 Liz