Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Diagnosis but no action - is this reasonable?

akist
Posted by

Regarding the recent comments around the NHS, it is the largest organisation in the world and has the largest budget in the UK it employs the largest number of people. In theory it is the most astonishing and commendable service a country can offer to its citizens and it should be an example for other countries to follow or to compare with.

But that's on paper. How is it in practice?

My father in law passed away 40 days ago in one such hospital and I cannot say I was thrilled with the service he received: angry and rude doctors, and some nurses too, positively "inconvenienced" by the ... patients, and talking to them (while such patients are still alive and barely able to talk) in a way that shouts "why are you bothering me now can you not see I am BUSY behind my computer screen and buried in my form filling?". And my most recent impression from entering the hospital to the moment of his death a day and a half later has not changed from previous impressions I have had over the years. Yes you can have a brilliant surgeon that can perform miracles, and a brilliant anaesthetist and team, or some outstanding doctor or nurse that will go out of their way to help even after a day long shift - but these are the exceptions. There will also be an army of doctors and nurses that are plainly incompetent, have a disgusting attitude towards the patients and towards each other, some speak two words of English and those badly, and should have never been recruited to deal with sick patients. So please when anyone talks about their bad experiences do not shout at them but rather make a mental point that all is not great with the NHS and maybe we, the voters, need to know about it and try to institute changes. By holding hands and singing around the camp fire we are not going to solve anything, and sooner or later it will be ourselves in the place of my poor father in law.

LauraE
Posted by

Hello akist,

I suppose your post was for me, so I’ll reply.

Firstly, I did not shout at anyone and I’m not sure what gave you that impression.

Secondly, I’ve already mentioned, I know all is not great with NHS. I have seen my fair share of incompetence so far and my boyfriend was just diagnosed in January.

My point was that scaremongering doesn’t help anyone except maybe the person who lets off steam on a forum. For the rest of us, who are at the beginning of the journey, statements like “NHS killed my family member” are not helpful. All that does for someone who is just about to go into the hospital to have their surgery is to make them afraid and stressed, which is not conducive to a good recovery.

Had a bad experience with NHS? Share it. But choose your audience wisely, share the details and share what you’ve done to solve it. Name and shame even, so that everyone knows what or who to avoid. Complain to the hospital and write to your MP. In fact, better yet, share the bad and the good. Look for my previous posts and you’ll see that I have done just that. 

Unless one managed to avoid all news throughout the past years, they’ll know by now that not all is rosey with NHS, so just repeating over and over that NHS are terrible, they let people die and we’re all better off going to Timbuktu for treatment, to me is just not something of any practical value.


Lastly, this thread was Billie’s, whose son had to wait for weeks to start treatment after the diagnosis. I feel bad as it is for highjacking it and I don’t think I can make my point any clearer than this, so I’m not going to continue this exchange.


Regards,


Laura

bigsister46
Posted by

Your post is so true.. I was told when my brother could have lived we decide if you brother gets treatment and he doesn't

Who do they think they are this is tax payers money. And there is a lot of it and going to waste...Did you  read my post about my mother and sister 

 People need to stand up and say this is not okay as a country. These posts are important as they will instill the people on this site to expect more it is their health care and their lives. No one with this condition desires to wait.  

akist
Posted by

Hello Laura,

My post was not directed at you but at the thread and I apologise if I made it sound personal, it was not meant to be.

I read a bunch of posts and replied to the whole thing did not recall who said what, but only what was said.

I also agree that some statements are "sensational" but some have truly suffered and forget their political correctness sometimes, myself guilty of that too.

All the best!

LauraE
Posted by

Hi akist,

No problem at all, I understand. I actually have found your posts logical and informative since I joined the site and I have one of them saved as a screenshot on my phone. That’s where I first heard about methylation. :)


While on the subject and because you seem to have done some research on this subject, do you know if 1p and 19q deletion is relevant for an anaplastic astrocytoma 3? My boyfriend’s hystology came back this week, we haven’t met with his oncologist yet and the info I found online is somewhat confusing.


I understand that AA3s will not have the 1p19q deletion and the only relevant mutations that might give an indication of how the tumour will respond are IDH mutation and hypermethylation? Others though mentioned 1p19q in the context of an AA3 diagnostic, so I’m not sure what to trust.


Regards,


Laura

akist
Posted by

You have screenshotted my post? What did I say? :-)

I was recently told that if the molecular tests show 1p19q then you automatically have pure oligo. Actually they have now removed the oligo-astro class, even though the biopsy microscopy may show both cells present... Many doctors (most?) do not even know how this works. 

Did you read the biopsy? What does it say?

LauraE
Posted by

Hi akist,

It was a post for someone whose mom had just been diagnosed and you were asking whether the tumour was methylated and if not, whether she could have a metronomic dose (I haven’t even gotten to the point where I researched that yet. The day doesn’t have enough hours for all the things I’m trying to learn).


I haven’t seen anything on paper yet, he hasn’t either. It was the head nurse I think that delivered the news and no details.


He has an appointment with the oncologist on the 22nd, to discuss radiotherapy. I don’t know if that appointment is meant mostly to measure him for the mask, but I plan on asking about the genetic markers at that point anyway. That is if he’s not given the results when he’s discharged. He is coming home on Monday.


So 1p19q is not relevant for an AA3, just like I thought. Would it be ok if I posted here again once I see the test results, for you to give your 2 cents?


Regards,


Laura

akist
Posted by

From what little I know not all radiotherapy machines and techniques are created equal. Depends which hospital you go to and what equipment they have, and what form of radio they decide to give and who designs the schedule. Of course the main issue is where the cancer is, how big, how spread, how close to other vital areas, a lot of parameters. IMRT is the "best" I believe when we talk about whole head radiation but better speak to a good oncologist/radiologist I suggest Dr Beaney. Radio you stay under the machine for a few seconds and you receive a dose and every day they hit you from another angle so as to make the rays converge at the cancer area, but to allow normal brain tissue to receive less overall radiation. While you are being hit (for those few seconds) the radiation might interfere with the replicating process of dividing cells and kill them, or doom them to die on their next checkpoint. However not all cancer cells are dividing at any given time and radiation has to catch them with their pants down so to speak so you go every day hoping to catch as many as you can. In the meantime you receive such a large dose that they also mostly burn. Burn kills everything good and bad alike. Radiation kills replicating cells mostly which we assume are the cancer cells. However the cancer has to be very aggressive so that the cells multiply quickly and are more likely to be caught under the beam. GBM cells divide every few hours. Grade 3 slower. Grade 2 even slower, maybe days or more and less of. So radiation works better the more aggressive the cancer is..

LauraE
Posted by

Hi Billie,

You and your son are in my thoughts. His surgery is this week, isn’t it? A lot of positive energy coming your way, stay strong and positive and when you get a chance, let us know how it went.


Hugs,


Laura

Billie57
Posted by

Thanks Laura. I am travelling up to London today, and he is being admitted this afternoon, so I'll be with him for that. I am not ashamed to say that I haven't slept for days and I'm scared to death. He is doing great and being his normal sweet self. I wonder how accurate the predictions are for the grade of tumour. Grade 2 is bad enough. How long does the biopsy take? The operation is tomorrow and I hope to get there before he goes in for surgery, assuming it won't be at 7am!

At least we will soon know what the next stages will be. Right now it's all worry and fear, but with a firm plan of action I feel like I can cope a little better!


How is your boyfriend, I hope he is doing okay and you are coping with the stress of it all!


Billie

LauraE
Posted by

Hi Billie,

Your son is young and healthy and I’m sure the surgery will be fine. But yes, I know how you feel, I paced up and down, didn’t know what to do with myself and ended up drinking too much wine on the day of the surgery.


In general, I think that diagnosis based on MRI only can’t be entirely accurate, but pretty close. We were told “low grade turning into high grade” based on MRI, it turned out to be Anaplastic Astrocytoma 3, which is high grade. I haven’t seen the full hystology report though, so it may still be that his tumour is a 2 with just enough grade 3 cells to bump it into the grade 3 category.


The surgery was on 27th April and the lab results were back on the 9th of May, so it took about a week (7th of May was a bank holiday).


My boyfriend is actually doing good and his recovery was amazing. He is no longer dragging his leg or bumping into furniture. He still favours his left hand but I think that’s just because for an entire month he couldn’t trust his right to do what he wanted it to do. Otherwise he has full mobility. His demeanour has changed as well, he walks with his back straight and head high, whereas before he slumped and the right shoulder was lower than the left.


All in all, I’m amazed by him, every day there was progress and now, if you saw him, you wouldn’t think he just had brain surgery two weeks ago.


I’m sure your son’s surgery will go well and he will make a quick recovery as well. Stay positive, it’s the most important thing of all at this time.


X


Laura

Billie57
Posted by

I've managed to come home for a change of clothes and a sleep in my own bed (oh god, that was wonderful) before heading back up to London. My son got through his operation relatively unscathed (massive, ongoing headache and generally feeling lousy, but much less than I thought). However, we have not seen the surgeon or anyone on that team, and all attempts to get information about the operation from the ICU staff have proved fruitless. So, even now we don't know how much of the tumour they managed to remove, how the operation went or anything. He has an appointment on Thursday for the results of the biopsy, but it seems bizarre that we have to wait more than a week for any kind of word from the doctors. Just inexplicable to me!

He is staying in hospital until Monday and I hope to stay with him while he recuperates. Then after Thursday maybe he can come home to the south coast (but if they want to give him radiotherapy I don't know. How often do they do it, how easy is it to travel on public transport after a session? How much walking can he feasibly be expected to do after surgery?


Laura how is your boyfriend doing? He's having radio, isn't he? How is he coping with it, and how are you holding up?


At the moment I'm sorting things out for my mum so she can be okay while I am away again next week. One day I plan to book a flight to the sun, when all this is over and everyone is feeling good. The thought of a week away is the only thing keeping me going!

Billie

LauraE
Posted by

Hi Billie,

That is great, that he feels good after surgery, I was sure he would. :) I expect his head will still be swollen. For the time being he’s probably on steroids to help with the swelling. My boyfriend wasn’t kept long on them but he managed to break out in spots something awful. Once he’s discharged, for as long as there is swelling around the incision, make sure he sleeps halfway upright. To help with the swelling, my boyfriend takes turmeric and boswellia serrata extract. I also bought pillows in the shape of a wedge from Amazon, to prop him up when he sleeps or lies in bed.

My boyfriend had surgery on 27th April and his appointment to have the mask fitted is on 22nd May, so I would say they give you about a month to heal after surgery, so yes, he can come home with you for a couple of weeks.

Please be aware that if your son’s tumour is a grade 2, the consultants might advise him to watch and wait. In general radio therapy is only offered to patients with higher grade tumours because it works better on more aggressive tumours and also because you can’t have it several times (second time would be if the tumour reoccurs several years after the first time). There’s a post by akist higher up on this thread about radio, if you’re interested. I’m not sure about chemo, I assume they would offer chemo for grade 2. For chemo, he would have weekly appointments at the hospital to have his blood checked. 


Radiotherapy takes place every day, at the hospital, for 6 weeks. My boyfriend didn’t start it, but he wants to take public transport too. To me, that’s just not feasible in the long run and I have this image of him standing in a packed tube during rush hour, for a whole half hour journey.


From what I read, halfway through the treatment, exhaustion sets in. He’s already pretty tired as it is. Yesterday he mopped the floor in the kitchen and changed a bulb light and had to have a nap afterwards. So once we know the schedule of the RT sessions, we’ll decide whether he takes public transport or we arrange with a local Taxi company to take him to the hospital, wait for him and bring him back (I don’t drive). If his sessions are not during rush hour, we might do both - 3 weeks of public transport, 3 weeks by Taxi. It will be a strain on the budget, but I couldn’t think of any other way. I’ll let you know how we get on.


I know there are charities that organise transport for patients to treatment on voluntary basis, but I couldn’t find one in London. The hospitals also have an option to bring patients to treatment, but you’d have to enquire because I don’t know the details. I do know though that it’s a shuttle which collects patients on the way and so an appointment of half an hour turns into a half day spent in a car. 


About walking after surgery, that depends. My boyfriend is fully mobile and he could walk if he needed to, but he can’t be in a crowd for longer than 15 minutes. His hearing is now extremely sensitive, his brain needs to relearn to filter through noise. He cannot ignore background sounds and conversations the way we would normally do. This contributes to fatigue and feeling tired after a few minutes in a crowd. Make your son aware that sensory overload is quite common after a brain injury, so if he notices anything different about how he perceives sounds, smells, light, etc, he knows that it’s normal.


Keep us updated. I’ll let you know how radiotherapy goes.


X


Laura