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Found new mets to my skull and jaw

9 REPLIES 9
paris
Member

Re: Found new mets to my skull and jaw

Thank you for your message. I have my lumbar puncture on Thursday now and I've asked for copies of the reports from all my scans since Dec 20.  Once I know what's wrong I will take this further if I have the energy! 

paris
Member

Re: Found new mets to my skull and jaw

Thank you Gina. I will contact PALS when I know what's wrong with me..I have my lumbar puncture on Thursday now. Very anxious about it, but it has to be done. MRI of spine on 2nd August so by mid August will know what's wrong. 🤞

 

Gillyflower
Community Champion

Re: Found new mets to my skull and jaw

Hi Paris,

I'm so sorry to hear about the rough time you've been having - that's atrocious care from the hospital! I rage whenever I read someone else has been messed around by a hospital.  I've had loads of experiences that have tipped me over the edge because of stuff like that - people telling me I'm fine when I wasn't, wrong scans being looked at, Oncologist not able to remember what she tells me from one appointment to the next!  I always ask for copies of all my scan results now so I know exactly what's going on.  Sending lots of hugs to you xxxx

Don't Google if you can help it! Each person's diagnosis and experience is so unique that any statistics or stories aren't neccessarily going to be yours.  Its easy for me to say that but I'm the same, sometimes I just Google everything and then really wind myself up...its not good!

Its totally ok to have a rant and get it off your chest.  Its also ok to feel totally freaked out and upset, I've also been there, as probably most of us on this forum have.  Take one day at a time and be kind to yourself...make space in your head and in your day to do some lovely things or distract yourself from the waiting for scans.  Living with uncertainty becomes a bit of a life skill doesn't it?!

Take care and hope they get your scans booked for you soon!! xxxx

Gina G
Member

Re: Found new mets to my skull and jaw

Dear Paris.

I found your account of your experience with your oncology team truly outrageous.

Once you are strong enough please look into this situation with help from your husband.  Any scan should be examined by a senior radiologist and the report is sent back to your Consultant. Not just some random Dr.

You will get strong and during your month off find time to look into what makes you happy and you can find peace.

Good Luck.

Gina 

 

paris
Member

Re: Found new mets to my skull and jaw

Hi. Just an update on my horrendous journey so far!

Got results of mri in hospital..all clear. Lesions on skull and jaw been there a while. Doctor said..."Go home and enjoy life". (This news given by a Respiratory Surgeon). On the back of this excellent news, booked a 4 night break in Ibiza the following week to celebrate with my husband and to have complete rest.

Appointment with oncologist the following week before flying to Ibiza,  was livid!😡..the ct and mri scan had been done without contrast despite instructions to do so! He was unaware I was even in my local hospital and said I should have gone to the cancer centre where I have my treatment.  Scans therefore a waste of NHS money they are useless as far as diagnosis is concerned and doctor who gave me the news is not qualified to give an oncology diagnosis! 

Fast forward another week and had an mri of head with contrast. No signs of brain tumour(thank the lord), but need urgent lumbar puncture to rule out any cells in the fluid around my brain and spinal cord and an mri of spine booked for 3 weeks. Googled Numb Chin Syndrome and the prognosis is awful😥. My CA153 has gone from 80 ish in January to 140 ish now. Onc not too bothered by that though?🤔

I'm not coping very well and have taken 4 weeks on sick leave. I'm so tearful, planning my funeral  wondering if I will make it to Xmas etc etc and so angry 😠. The holiday was ruined as thoughts of my illness and what may be wrong were constantly on my mind. I was do anxious to get home. The waiting to know what's wrong is absolute torture. Its been a month now and still no further. Sorry for rant but I needed to get it off my chest! 

Thanks for listening 😍 will keep you posted.

Paris

Secondarysister2
Member

Re: Found new mets to my skull and jaw

Waiting for results is the worst thing! Once you know whats going on, you can have an action plan and crack on! The waiting bit is cruel. 

Please keep us updated with how you get on ! Thinking of you ! Xxx

paris
Member

Re: Found new mets to my skull and jaw

Thanks for the lovely reply. I'm so anxious its untrue, but you definitely give me hope. Thank you. Xx

I had an MRI scan earlier today and that came back clear, although they won't confirm this until I hear it from a senior doctor! How can two scans tell different things? Something is not adding up! 

I'm still in hospital waiting for the confirmed results, hopefully in the morning. Its been one hell of a roller coaster emotion wise for me and my family. Its not fair I'm being kept waiting for so long causing me unnecessary worry. Just want to know what's up with me! 

 

Secondarysister2
Member

Re: Found new mets to my skull and jaw

Hi Paris,

I don’t want to give you false hope as you may have a different type of breast cancer to my mum and/or react differently to treatment.

However, when my mum got diagnosed with extensive “pepper pot” mets Sept last year, we was told they were also in her skull. Well... my first thoughts were the worst!!! I was besides myself.

But... the oncologist told my mum that they do not go from your skull to your brain. If you get brain mets they get there through travelling through your blood stream and not via your bones. He said, for the majority of women skull mets don’t really cause much issues or concerns. They are just there. He was more concerned with her spine and pelvis area as these can hinder mobility in future. 

There was another lady on the bone mets forum called Dawn a long long while back who has sadly passed away since, but she lived with bones mets for 15years(ish) and she stated she was diagnosed with extensive bone mets (including the skull) from the onset. This really gave me great comfort. From what I gather from her posts, she never had an issue with them.

Obviously not every situation is the same, so speak to your oncologist and see what they say. 
Sending you loads of love! Xxx

 

Bernard_BCN
Community Manager

Re: Found new mets to my skull and jaw

Dear @paris 

I am sorry to read your note and that you feel scared.

Would it help to speak to one of our friendly nurses on our helpline? You can reach us on freephone 0808 800 6000 (Mon-Fri, 9am-4pm; Sat, 9am-1pm). We're always here to chat things through at your pace.

If you prefer, you can even leave a message for our nurses right on this Forum, in our Ask Our Nurses board.

Sending our warmest wishes

Bernard

paris
Member

Found new mets to my skull and jaw

 Hi all. Just in shock as been in A&E all day as had some head pain and also a numb chin and jaw. Had CT scan and it's showing lesions on my skull and jaw. I'm in total shock and scared stiff. I was diagnosed with bone mets 2 years ago. On palbociclib, letrozole and denosumab monthly. Had mri 3 months ago due to wierd headaches and told it was clear. No one at my cancer hospital seemed concerned with my symptoms recently and told me if I was worried to go to A&E! So scared what the future holds for me now. 

Has anyone else been diagnosed with this?