Brain mets cerebellum

[Hilsy]

Bump x

[nicky08]

Bumping up for skelts

[sue496]

Hi Hilsy, many thanks for your reply. I'm so sorry your met is so aggressive and the impact this must have on you, as if having the bloody Cancer is not bad enough, I know we all get to a different "normal" but upsetting all the same. I have not had any seizures, visual disturbance etc, but I guess it's the maybe risk following surgery as well, although it does look like mine is in a good place to operate. I'm in Dublin and a meeting was held yesterday to discuss my case, I so wanted a date yesterday but it didn't happen, I have plans to fly to Florida on the 19th October as part of a Team Ireland dragon boat team, for the international championships. I won't be able to paddle but desperately want to go, I set is as my goal last year when diagnosed with a secondary tumour on liver. Sorry to ramble. I wish you well and hope that even if it does return there are more options for treatment. Thanks again I have a feeling I'll be coming onto BCC site to ask more questions once my treatments is planned. I used the forums constantly (obsessively) with primary diagnosis in 2008, but life moved on, when I got recurrence in 2010, liver mets in 2013 - I didn't feel the need for further support, but now this is a whle new ball game to me, so if you pardon the pun, I'll be coming on to pick brains re recovery etc.
Sorry for the steroid induced essay! Thanks again Hilsy, advice much appreciated. Sue x

[Hilsy]

Hi Sue, so sorry to hear but glad steroids jsve kicked in as I believe it's mostly the swelling that causes the symptoms rather than the tunour itself. Re driving I was told straight I shouldn't drive and I believe now you have the knowledge it would be illegal with dvla. I hear amount of time you can't drive is a year or 2 after your treatment/last seizure if you've had one though I myself was told by oncology, maybe due to my other mets too? That'll I will never again drive even after I had had surgery and radiation. Mine is particularly aggressive d and in fact returned and I think they've known all along it would be back soon. I wish you the best, driving was devastating for me as you lose your independence, normality etc. big hugs x

[sue496]

I was diagnosed last Friday with a 2.9x2.1cm tumour on my cerebellum, hoping to get surgery next week. I have been encouraged by all the positive posts regarding the op and recovery, many thanks for taking the time to share. My symptoms wee severe headaches, vomiting and dizziness. 30 mins after I was put onto iv steroids all symptoms disappeared and now on oral steroids I remain symptom free. Just wondering about the driving thing, does it depend on how the tumour affected you whether you should drive or not or is it set in stone - brain met, don't drive. Btw some hangover/virus I thought I had! Bit like the gallstones I decided I had last year - no 6.7x4.5cm Liver tumour - now mere pimple on Herceptin and Perjeta. Thanks for listening. Sue xx

[Wensteed]

Hi Hilsy,

Sorry if my previous post was confusing but the side effects I mentioned were "pre-surgery" when I

realised something wasn't right and then got diagnosed with the brain met.  I have had no side

effects at all since the surgery. I was weaned off the steriods gradually over a period of 4-6 weeks

and I did not have any headaches.

My last CT scan showed my lymph and lung mets have returned to their original size. The oncologist

thinks the steriods help reduce them pre-chemo, but the chemo has not reduced them any further.

So for now I'm off chemo until a new treatment plan is decided.  I've been put on Letrozole hormone

suppressant which they hope will keep the brain met from returning as the CT scan also shows a small

spot near the brain surgery site but they are not sure what it is.  I'm seeing the Neuro Surgeon on Thursday for his opinion. Interestingly my original BC was triple negative, the secondary lymph is also triple negative, but the brain met is hormone receptive.  We don't know about the lung met as no biopsy

has been done.

I'm looking into Cyber Knife as a possible next treatment option for the lymph, lung (and maybe brain if

necessary).  I'm not too impressed with the chemo so far and if I can get these mets zapped in one hit I will be happier.

Generally I'm fine and quite upbeat and optomistic ... provided I don't visit my GP again. He is just

doom and gloom and gives me terrible advice on Secondary Cancer stats and whether treatments are

worth it versus quality of life ! 

I think a new thread on brain mets is a good idea as it is getting confusing reading updates on different

threads. What area of the country are you in ? I'm in Berkshire.

Take care,

wensteed

[bill-ben]

Hi ladies I have been on this site for a couple of months and the looking at "brainy" bits for a  week or two but have just come across you now. I'm the total wreck with the brain added to the bones and liver last week. Would be so reasuring to be in touch with some others. Looking at the time of a 4am post is someone else finding the steroids effecting their sleep?! I started getting wobbly legs and bad vision a couple of weeks ago and was waiting for yet another MRI on my liver when I told the breast care nurse then to be told they would do my brain at the same time just in case. (Why oh why don't they "do" you top to toe just in case in the first place!) Confirmed last week that it is in my brain. The thing I find so frustrating is lack of information from hospital they tell you then ask if you have any questions but you just don't know what to ask. You will see from my other posts about my steroid lack of information! I was told my what ever it is, is it a tumour or little green munching brain cancer cells, is at the back left hand side of my head whiich is why it effects my right eye. Phoning the breast care nurse she said it was so many mlls by so many mlls. I work in feet and inches so have no concept of size though she said that was relatively small. The oncologist said there was one chance of zapping it not operable and that's it. Why is that it arghhhhh!!!! I was told there would be a two week wait until radio started but then got a phone call to say they would start Thursday just gone. So now have had two sessions of being "nuked" three more next week. What I didn't like was the info sheet they gave me about paliative radiotherapy. I don't like that word palliative I want all singing and dancing both barrels blazing stuff!! I was amazed to read about how quickly you are getting over surgery fantastic things are going well. I was told to give up my driving licence but I haven't done so yet as it is my only form of photo ID! I hate driving and don't do if unless I have to so am quite happy being driven around! There is another lady on here who has also just been confirmed with brain mets so there are a few of us. Maybe we can get together regularly for note swapping and updates! Hope to keep in touch Vicky!

[Hilsy]

Hi that's really useful to know about driving thanks, lots if mixed info about about so don't know what to do for the best. Lady couple of days headaches are easing and dropped down by 1mg (not a lot) to 3mg dexamethasone a day so hoping a more gradual wean will help and sounds like the headaches are due to the reduction then rather than the swelling like you. How are you coping with it all? Are you scared? I'm coping and keeping cheery but sometimes I have mad google sessions if trying to find long survivors and it's near on impossible. And I try to look up if you have one tumour in the brain, is it at all possible that's the lot or is it a definite they'll be back? Are the cells floating all in our body waiting to settle at a later dare up in our brain or are they already there?! Lots of questions hey and it's hard to find answers. I hope you're coping ok and have lots of support I really do. It's pretty hard isn't it. Shall I try and set up a brain mets please join in? Or would you like to, it was your idea. Won't it be funny if it's just us. We'll be like "oh hi olives", "hi Hilsy"...then silence...lol. Take care x

[Olives]

Hi Hilsy. I think it took 10 to 14 days for all the headaches to subside. I had a CT Scan to check as my headaches were very bad to start with and there was no swelling so just side effect from coming off steroids. It is true that you have to surrender your licence to DVLA after having brain tumour diagnosed. I have been told I can drive after a year as long as have medical advice ok to do so but I do know some people are told two years. I think it depends on how they class your tumour but not really sure. Hope this helps and your headaches have improved. Ask as many questions as you like. There do not seem to be that many brain mets people who post and I know it's good to be able to get info off people in same position. Perhaps we should set up a post for "Brain mets - please join in" to get all info in one string? Not sure what anyone else thinks. Anyway hope you have an ok weekend. X

[Hilsy]

Thanks olives that's good you didn't have to have radiotherapy and that you're being monitored. Can I ask how long you were off steroids before headaches eased? And do you know if headaches are due to swelling and recovery or body's reaction to coming off steroids? Soz for the constant questions. One more thing...,,is it true no driving 2 years after (more if things return)...can't find a definite answer anywhere on google, all very vague! Hope you're staying positive x

[Olives]

Hi Hilsy. Your recovery sounds similar to mine. I was taken off steroids quite quickly and really suffered with terrible headaches. I was fine for the week or so after the surgery, it was only when coming off steroids I had the problems. Once I got over that I was fine, no more headaches. I do still feel quite tired and sometimes get odd pains in scar area which I think is due to skull recovering and nerves reforming. I was lucky not to need radiotherapy at the start and am having regular MRI and CT scans to monitor situation. I hope you will soon be feeling better and at least you have the relief of knowing the tumour is out. Sending best wishes. Olives

[Hilsy]

Hi Wendteed, Fab to hear from you and glad you also had a straight forward op but shame about the weakness. They're amazing aren't they. How did recovery go? I'm on day 15 and still very tired and weaning off steroids over 9 days meant I was too tired and pressure in head building up too much so now on 4mg a day after an awful migraine with zigzags galore etc. Everything tired me out hugely and my head doesn't hurt but pressure builds up, were you similar? I can't do a lot and even a chat and a giggle for an hour is hard on my head. And did you have radiotherapy and how did you find it? Soz so many questions. I get radio therapy mask made tomorrow eek.

Olives would you mind too saying how you found recovery? How are you now ladies? Xxx

[Wensteed]

Hi Hilsy,

Just read your post, sorry I wasn't able to offer you my positive feedback sooner, but just to let you know I had a 3 hour brain operation back in March and my 4cm tumour was removed successfully. All my friends and family were amazed that within an hour of returning to my room I was texting, eating and drinking and back to my normal self. I was discharged on the 4th day.  My tumour was on the front right side of my brain, apparantely very close to the skull. The only symptoms I had was lack of coordination and weakness on my left hand/arm with no seizures or headaches. I had my op at John Radcliffe in Oxford. Amazing what they can do these days !

[Bevlaar]

Hi Hilsy. Thats fantastic news....its amazing what these surgeons can do today, seriously! So glad youre on the mend with no nasty effects of surgery.

Yes definitely another "inspiring success story"!

Big hugs to you...long may it continue!

Bev xxx ♥♥

[Hilsy]

Thanks ladies, came home today 2 days post op, just very tired but not much pain and am the same person with no loss of any senses etc. They moved the whole tumour and little bit around it which was great. Thanks for all your support and I can be yet another success as a guide for anyone else worried about surgery. Clever doctors xxx

[Desi-2]

So pleased for you Hilsy xxx

[Olives]

Hi. Great news. Make sure you pace yourself. I was on a massive high for a week after my op as I was so relieved to have all my faculties like you. The steroids you are on will also make you a bit hyper probably! Fantastic news that all tumour removed. Hope your recovery continues to go well. Olives X

[roxy12]

Hilsey, that's brilliant! You must be one strong girl! Take care. Don't overdo things too soon though. Love Sheila. Xx

[2catlady]

Wow,hilsy, that's fantastic,you go girl. Take it easy and rest up. Huge hugs,Helen xxxxxxxxx

[Hilsy]

Hi all I'm back!!! Thanks for your support! Op went well yesterday, they removed the whole tumour and around it and I'm recovering pretty well, up and about today should be out tomorrow. No walk in the park but better than I thought, no pain killers at all today?! Lol! Want to offer a positive outcome to others in the same situation as I still have all my faculties and senses!!! Love to you all xxx

[roxy12]

Good luck today Hilsy. Thinking about you. Love Sheila. Xx

[2catlady]

Good luck,hilly,we will all be thinking of you xxxxxxx massive hugs,Helen xxxxxxxx

[Hilsy]

Thanks ladies will let you know how it goes. Hugs to all xxx

[Desi-2]

Just wanted to wish you good luck for your op today Hilsy I will be thinking of you. Wishing you a speedy recovery!
Xxxxxx

[Olives]

Hi. I am doing well thanks. Three months since my op now. It is scary but you will feel better afterwards knowing the big C in your brain is gone for now and that's the way I approached the surgery. They will takes really good care of you as they know it's a big op so in some respects you will probably get much better hospital care. Once you are asleep you won't know anything till you wake up. Good luck. Let me know how you get on when you can. X

[Hilsy]

Thanks olives! All pretty terrifying, having it out today! Eek!! Wow looks like you recovered pretty well and I know I'll be looked after. It's weird when you feel helpless and life totally in their hands isn't it! Hugs to you, hope you're doing ok x

[Olives]

Hi. Sorry only just seen your post. I had a craniotomy in March to remove a 1.8cm tumour from my left temporal lobe. Like you I was pretty terrified and they explained all the risks fully. I was down in theatre from around 2.00 until 7.00 but some of that is the time going to sleep and coming round so not sure exactly how long surgery took. Afterwards I was monitored really closely for 24 hours and then closely for next 48. Then I moved to a normal room and was discharged after six days. I had a mastectomy in 2012 but feel that I recovered from this op more quickly and more easily. It is a really big op but they take very good care of you and it's amazing how quickly you can recover. Hope all goes well. Will be thinking of you. Hugs. Olives X

[Hilsy]

Awww thank you. X

[Desi-2]

Hi Hilsy I don't have experience of brain mets but there is a lady on here who has had successful brain surgery and recovered very quickly hopefully she will see your post soon and be able to tell you more. Good luck xxx

[Lucy_BCC]

Hi Hilsy

I am sorry to read you have these worries, our helpliners are on hand tomorrow 10-2 for further support along with the help and experiences you will hopefully find here (0808 800 6000)

Best wishes
Lucy BCC

[Hilsy]

Hi guys I'm asking around for any experiences following surgery on their cerebellum. I have a 2.7cm tumour on right side due for removal on Monday and I'm terrified. Apparently it's a 3 hour op, is that the norm? They say if I'm ok I'll be out next day, but there are lots of risks. Id love to hear your experiences please. I'm really scared I won't wake up or there'll be complications 😕 x