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Justin1970

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Hi everyone 

Just an update, so I have had no seizure activity for a few weeks now, the cancer team have believed me when I said I was allergic to the contrast dye with the scans which causes the seizure activity, 

Unfortunately on Saturday night I got assaulted on my birthday night out with my family and friends which resulted in hitting my head hard on the tarmac and causing a small brain bleed and concussion the paramedics thought I had stroke due to the high blood pressure and the fact I can't use my right side again, I had an emergency ct scan done that revealed the brain met I had gamma knife radiosurgery done on in march has grown 5mm and a lot of swelling still, it was 1.3cm now its 1.8 cm but when I went for gamma knife the radiologist told me it ha grown twice the size to 2.6cm and I would need longer treatment but I have no letter to confirm this so I don't really know if its grown by 5mm or shrunk by 8mm over the last 7 months, I have an MRI today to see what is going on but am really worried,the other brain met has gone but this one hasn't, I'm more worried about the symptoms I have regarding the paralysis of the right hand side but they thinks it is due to the concussion or brain bleed and should get back the feeling, sorry for the long post 

All the best Take care Justin 

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Justin,

I'm so sorry to hear about the assault and the complication from this brain met.  Please keep us updated on the findings.  Everything I have read and heard regarding focused radiation treatment has been so positive that I have to believe there is a happy ending in this for you.  You'll stay in my prayers.

Lou

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I am so sad reading this Justin but happy you were not more hurt with the fall, it must have been so scary! Are you in hospital? I think it is time you put your foot down asking for clear answers. Your oncologist should have all the records from imaging so there should not be confusion about met sizes in the imaging data. I don't know much about brain mets except I hear people saying they are easy to kill so stay positive. I would not let doctors stall any needed treatment and would demand fast care and diagnosis for your symptoms, especially before the winter season arrives in hospitals with new waves of viruses etc. Wishing you the very best and please keep us posted, our thoughts are with you! Hope you, Izzy and the kids are not too worried. Take care all!

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Hi lou and lily, thank you for your messages. I had the MRI scan done today, and a follow up appointment Thursday with the Oncologist team for the CT scan I had done and hopefully they'll have the results of the MRI too. I'm not in hospital but they think I may have concussion, I have no coordination in my right side, but will keep you all updated. Hope everyone is well. Many thanks Justin 

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Oh no Justin, so sorry to hear of these complications. I hope that the drs will have answers for you and that you regain the use of your right side. I am keeping you and your family in my prayers. And happy belated birthday.

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Hi everyone

Thankyou all for your messages and support, I had the results of the ct scan and everything is stable and no signs of growth but unfortunately the brain met has grown to 18mm from 9mm since June and the swelling has gone from 4cm to 8cm so now have to wait to see if they can do anything about it I hope they can do the gamma knife again but not sure as it didn't work the first time, this disease really is demanding and i feel like just giving up but know I can't because it isn't fair on everyone I love

Hope everyone is well. Many thanks Justin 

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This is so heartbreaking for you and all of us Jus xx but they will fix you I’m sure  of that, it’s all such a lot for you to comprehend and cope with, we are all so very proud of you for how far you’ve come and here for you always, but we will never know the actual fear your feeling xx life can be so cruel especially to someone who does nor deserve it, we will get thro this together and life will soon be better for you and us. Stay positive, new things are being found every day for this evil disease. I love you soooo much as do all your family,  and as your mum it’s so difficult seeing you hurting so much. We will get there and life will be brighter soon I’m sure. We have to have faith or we have nothing, hang in there sweetheart, I love you very very much xxxx all my love Mum xxxxx 

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Dear Justin, please stay positive and ensure you get all available treatments. I am not knowledgeable about brain Mets but some here will share their experiences I am sure. Have you regained control of your side? Is the injury causing these symptoms or the met? It has been so unfair I know, but maybe the nasty events made the met finding more prompt and hopefully the oncology team can offer better treatment soon. You are in our thoughts, please don’t give up and try to remain hopeful. Keep us posted please!

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Hi lily 

I haven't regained the control of my right hand side yet the oncologist said it was to do with the size of the brain met and the swelling but my argument is I was alright before I hit my head on the tarmac my blood pressure was 247/143 and the paramedic thought I had a stroke, 

I told the oncologist today that I had reported seizure activity several times over the past 6 weeks and wanted an MRI scan earlier than December but they said it was normal and possibly a trapped nerve, they have said I only told them once and denied all knowledge of it they even told me that nothing would show up on a scan due to swelling but it did show up and its now growing, it seems they make it up as they go along, he even told my mum that the cancer would eventually kill me, incredible knowing how depressed I am it's enough to make you not want to do anymore treatment because it's not worth it, I don't want to put my family through this anymore I've really had enough of this disease and don't feel like fighting it anymore, I'm sorry for the long rant but I feel very deflated by today's meeting 

All the best Take care Justin x 

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We are in this together Jus and we will get thro it together xxxx your a fighter even if it doesn’t feel like it at the moment xx the other option doesn’t bear thinking about, I’m not about to give up on you, we’re all stronger than you think and need you to be as well xx come on we can do this xxx mum xxxx

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I totally understand Justin but your family is right there beside you and they deserve the fight, right? Do not let depression eat away at your will to live. I am furious radiology/oncology is now denying the actual sequence of events, what a bunch of incompetents (if not criminals). They know they messed up and they are trying to cover their many mistakes. I would lodge a complaint and escalate my request for proper treatment. Obviously they dropped the ball and you deserve better care.

Do you have options? e.g., can you ask to be treated at a different hospital? Can you switch oncologists? I would make a lot of noise, this is your life we are talking about. I cannot believe the oncologist is talking about cancer being terminal rather than offer treatment at this stage. Of course cancer can kill but so many people live many years with stage 4, some decades despite recurrences! My uncle had such terrible doctors in Europe and they eventually let the cancer kill him rather than treat him. I remain furious about what transpired but I could not do much being half the world away.

We are all cheering you on Justin, life and family is worth fighting for. Hugs!

 

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Thanks Lily, I know that you know how hard this fight is but I can’t have him giving up on himself. He needs all your support as well and I know it makes a difference. Thanks for your response hope you getting on ok, I do follow all the stories on here and wish you all so much luck and love. Take care, lots of love Isla xxx

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@Justin1970 NONE OF THIS IS FAIR! The assault, the fall, your doctors' responses, your stupid brain met. Of course you're down. Seems like there might be some anger under that down-ness, too. 

My radiologist said she would monitor me for adverse reactions to the gamma knife for two years. You are well within that time period since your gamma knife. 

Let me just rant here for a minute: You have been a good advocate for yourself and they are a bunch of idiots. Especially the stupid idiot who made that callous remark to your mum.

OK, rant over. 

I don't understand how your medical system operates. Here, (U.S.) I would be seeking another opinion from a respected oncology radiologist in a different clinic, as well as contacting a primary care person to get a handle on the blood pressure. I would be doing that immediately. That may not be possible in your system, but it doesn't mean you can't take some action on your behalf.

I suggest you start to document all the events, from gamma knife to now. Date each event, whether it was just a phone call or concern you raised, and write down 1) what happened, 2) who you spoke to, 3) what they said.

Then make a list of what the issues are you are dealing with.

Then find someone to give that to and discuss how each concern/issue will be addressed. Is there a patient advocate? Someone who helps patients navigate your health care system? A director of a clinic? Can someone in your family research this and get an appointment? 

The priority, in my mind, is that blood pressure. 

Do not let them steal your power. You can act in your own behalf. It may not make the people in your system happy, but too friggin' bad.

GO GET 'EM, JUSTIN. 

PS I know this is not an approach everyone would be comfortable with and I understand that-- you must do what you are comfortable with, and I, for one, will support you in whatever you decide. 

I still say, GO GET 'EM.

Edited by Karen_L
added a P.S.
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To add to Karen's excellent suggestions, if the NHS is rigid/underperforming, I would contact your MP! People should not be falling through the cracks! We have a single cancer centre here in BC but one can ask for second opinion. You can also consider seeking a remote/international second opinion. Being in Europe you may feel weird about seeking a US opinion given how far and different their system may be, but I know that Paris has one of the best oncology hospitals in Europe and it does offer second opinions (I think they have some online options even but not sure if for all cancers so maybe worth a call to confirm). The hospital is Gustave Roussy. Maybe look into that Justin?

https://www.gustaveroussy.fr/en/international-patients

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Apropos dysfunctional national healthcare systems @Justin1970, I just got a call from a Vancouver hospital. They wanted to "book me for biopsy for my lung". My GP sent the request back in March! I was floored and started to uncontrollably laugh. After I regained my composure I told her thanks, I already had one, got surgery, chemo and now on targeted therapy! This is how long I would have waited had I not pushed back. Luckily my neurologist had another referral sent for me and I called him multiple times back in March to ensure the respirologist he referred me to saw me ASAP. Had I trusted the system, I would have been dead by now. Please push back with force and demand/find better care. Wishing you the best!

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Thank you Karen and lily

I will fight this and I will try and get the answers I need, hopefully it won't be to hard to change hospitals, 

My blood pressure has gone back to normal now but they did discharge me from hospital at 6.15am the following morning with a high blood pressure and not being able to walk or use my arm,  they even left me to put my own boots on and hold a bottle to go to the toilet in which is very difficult with one hand, they even shut the door to my room which I had to open but fell over 3 times, it really has been a nightmare from start to finish, thanks again for your messages it does mean alot 

Take care Justin x 

 

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What a horrifying experience, I am beyond shocked Justin. We used to hear NHS was top notch, what happened?! Certainly you need a better hospital, and you may want to contact your MP and even local media. This is atrocious. Please try to have a family member or friend with you at all times as an advocate whenever possible! I heard similar stories in Canada, one was of an elderly man (retired doctor!) whom staff assumed is homeless and was treated with utter contempt and neglect. So sad and infuriating.  Hopefully better days are coming and it will be a good Xmas so keep fighting for better care!

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My goodness Justin, this is insane. It certainly does sound like you have landed in the wrong place, and you need much, much better care. My experience of the NHS here in London couldn’t be more different. I can see on the NHS website that you have the right to be referred. I’d imagine that either your lung cancer nurse or MacMillan nurse can help you. I can certainly vouch for UCLH, and others speak highly of Chelsea Royal and Guy’s. If you want something closer to home, I am happy to ask around in the various FB groups I am in.

It sounds like such a nightmare, but it is worth the fight.

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Hi

I have spoken to my Dr and he said it is possible to change hospitals but he thinks I should wait until they decide what treatment I to be done at Bristol otherwise there could be a delay, 

It was lucky that I got hit or I wouldn't have known the brain met was growing had they not done a ct scan in A AND E they wouldn't have seen it, the emergency mri scan showed exactly the same measurements as the ct but I was told on several occasions it wouldn't show up because of the swelling and I wasn't due to have another scan until December, I did tell them about 5 times I had a problem but I was told it was probably a trapped nerve and normal, they said we only contacted them once, I feel really let down by everything but don't want to cause a problem between the cancer team and myself incase I get left behind, in 2021 the cancer department I'm at in Yeovil Somerset was accused of missing cancer 50% its soul destroying,I really can't be bothered to fight this anymore but know I have to for my family, 

All the best Take care Justin 

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Justin, I belong to a different (non-cancer) support group, and lately I'm hearing about subpar experiences with the NHS. I believe all of our medical systems (US, UK and Canada) have been severely impacted by the pandemic. However, that doesn't excuse the lack of care you're getting. The stigma against lung cancer continues. 

I hope you will press for a new care team. You have a wonderful family, and I'm sure they'll be ready to help you do that. Hang in there. We don't want to lose you. 

P. S. When you do get your new care team, inquire about new biomarker testing, even if it's by a liquid (blood) biopsy. 

Edited by Judy M2
Added P. S.
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Thank you judy

I will try and change hospitals after they decide what treatment I can have, I am really worried they won't offer me any treatment at all and tell me there is no point, I don't like telling you all how I feel because it's not fair on you as you have your own worries and don't need to read about my troubles on top your own,I am sorry for all this and will try and be more positive in my posts 

Take care Justin 

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Of course they will treat you Jus, it’s not a large lesion and they don’t give up on people and neither do we xx It’s the waiting that’s the hardest, once they start treatment you will feel better x everything is so unfair but we will beat this xx I love you very much and normal service will be resumed  soon xx All your friends on this site are behind you and I’m so impressed you talk to them about this evil disease and your thoughts x I’m also impressed how you are involved in their problems as well as dealing with your own x one step at a time and we’ll get there xx very proud of you and love you to the moon n back xxx all my love Mum xxx 

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