Has anyone had radiotherapy for one brain met from lung cancer?
Had a call today to say doctor is ringing Weds to arrange treatment for the brain. I only know its one brain met from an MRI he had on the 18th Feb & another MRI is being done this Tuesday as part of the Strike Trial & a doctor is calling Weds to discuss radiotherapy on brain.
Are side affects bad & do they last for short/long term. I know everyone is different, but just wanted an idea.
My husbands very down today, finding all the pre treatment tests & treatment itself scary. He wont even look at appointment letters, his eyes have a permanant terrified look & very tearful. I'm doing my best to keep him focused, but he doesnt want to discuss anything.
I've got my diary for him set up now & 3 folders, diagnosis letters, appointment letters & a folder for actual appointment days with paperwork etc he'll need on the day. I'm now organised.
But sadly my husband is just so scared & he keeps weighing himself. Hes lost about 7lbs, but hes appetites gone through stress & worry, he loves cooking, but hes no interest. He thinks the weight loss is due to the cancer. My appeties the same, but I dont keep weighing myself.
Every ache pain etc he thinks its cancer.
I'm sure most newly diagnosed are like my husband, I just dont know what else to do for him.
I seem to be coming to terms with this awful diagnosis, but still have bad days & cry quietly.
Its just so horrible to see someone so scared & theres nothing I can do to help.....
Sorry for the long post but I'm crying as I'm writing..
I had a single small brain metastasis- found last November. I had no symptoms. I had 1 single session of Radiotherapy for it and that dealt with it. It lasted for about 20-30 mins. You lie on a table like when you have a CT scan and the machines move around you. It was absolutely fine! No side effects. They tell you lots of possible side effects but I had none - no headache even. I took it easy but I felt normal.
The planning for Radiotherapy (sometimes called SRS - Stereotactic Radiosurgery) will involve the making of a mask which is usually made at a separate appt. Some people find this more alarming - its just a bit different!!! You lie down and they make the mask from a thin sheet of thermo plastic with holes in. It's heated up and molded to your face over a frame. I found it OK as they were lovely and my husband came with me to chat and hold my hand. This is then used during the Radiotherapy to keep you still so it's accurate.
They usually give you a reducing dose of steroids with instructions of when to take.
I know having something done to your brain can feel quite worrying but I think the thought of it is so much worse than the actual thing!
I hope you find that reassuring and that he feels better about it all soon.
Thank you so much for that, rrally helpful. He as no symptoms either. At what point do they re scan your brain to check?
I know hes on this Strike Trial which decides wether to do radiotherapy at start or later durimg treatment.
I am presuming the 2 hot spots on the L5 vertabrae &.Lilac bone in the lower back will be given radiotherapy. TBH I did ask at his first oncology meeting & altho I wrote things down, I cant rememberhat was said. Its his back which aches a bit & co codamols given for that.
I cant fault the speed the Royal Marsden have worked with getting him booked for appointments & theres loads.
Can I ask, is yours lung cancer? His is
T3 N2 M1c Stage IVB no symptoms, only this back ache that comes & goes.
I just wish I could help his mental heath symptoms.
The MRI scan is usually 3 months after treatment. Mine said - reaction to treatment and no further follow up needed at present.
I was diagnosed with Stage 3 NSCLC - inoperable - 18 months ago. As I had a brain met I guess you would say it is now Stage 4. I had genetic mutation testing and have 2 mutations - EGFR & MET Exon 14 Skipping variant. A lot of mutations can also be treated with targeted therapy. He may have biopsy, bronchoscopy, or other test to find this out
You are both at the beginning of this daunting process and it's a roller coaster of emotion and learning.
So he may have further tests to come but the team should discuss that with you. The Royal Marsden is an excellent hospital and he should get the best treatment appropriate to his cancer. What consultant are you under? I used to work there! Do you live close to Marsden?
The Marsden has a Maggies Centre (Sutton branch - not sure about London without a look see). They can provide psychological support and complimentary therapies for you both. Or MacMillan. You should be allocated a Lung clinical nurse specialist and their tel no - they can answer a lot of your questions.
I was initially treated with Chemoradiation. Now on targeted therapy - Osimertinib for EGFR mutation. My MET Muation may make it work not so well for me. Marsden advised me to have brain Radiotherapy because of this rather than wait for Osimertinib.
I haven't had bone metastases but Radiotherapy on these should not be painful.
Sounds like you are both struggling a bit - very common to feel like this and quite normal. Try to get some psychological support. Distraction is also helpful as switching off from it is difficult! Get out, see friends, get outside in freshair, go for walks....
Another quickie answer. Personally I wanted my brain met dealt with as soon as possible and requested radiotherapy asap which they were happy to do. My reason: easier to deal with when small.
I understand the Strike trial is involved on when is best for radiotherapy. But if you feel strongly about something you must let them know. You have to be your own advocate in this process!
(Trials are also optional!) Don't want to confuse you but it is something to ask the consultant. It is a bit easier for me as I am medical and further down the road..... No question is stupid.
The CTDNA test isnt back yet regarding target therapies, they took a blood test for that & when he had his EBUS biopsy some of that was kept to study to see if suitable for further target treatments.
The Strike Trial he's taking part in is regarding at what stage to give radiotherapy for brain mets.
I did ask about the lower back mets for radiotherapy, but cant remember what was said & what I wrote down.
He is under Professor Mary O Brien at the Royal Marsden Sutton.
I have spoken to Maggies & explained about his mental health & reaction to this diagnosis & I hope he'll go to Maggies on Monday 24th, as hes having a kidney function test which apparently takes several hours. Then Tues 25th he as 4 appointments inc CT scan with contrast & an MRI Brain with contrast, all related to the Strike trial & on 26th a doctor is calling re the radiotherapy for brain.
I'm more organised with appointments etc now I have a system.
My GP as diagnosed me with PTSD which the mention of cancer/Marsden is really tough for me, its relating to my sister/Mum who both had cancer. Its like his diagnosis as opened something in my head. So I'm paying to see a counsellor, as the NHS is a 6 month wait & Macmillan suggested I needed more help than they could provide. I've always been very strong, but something in my head as snapped. But I can look after myself.
Its my husband I'm worried about, he just wont even look at anything with Marsden/cancer on. Its like hes in another world, teary eyed, cries a lot & just seems to think he wont be here long. I've explained its treatable etc but he as lost interest in everything, from football to cooking.
I know he really needs mental health support, but whether he takes it I just dont know.
I'm also dealing with 2 family bereavements at the same time my husband was diagnosed. So I cant rely on my family for support, as my sister ( her husband died) is heartbroken along with her children.
And me & my husband dont have kids. So its just us. He isnt ill, apart from a little back ache & all this was picked up on a routine x ray for something else.
Yes I thought this at the time, the sooner the better. But when I spoke to Prof O Brien I thought Strike was a treatment trial, I didnt fully understand until later its a trial to decide at what stage to give treatment. I'm learning as I go alone!
When the doctor rings Weds I will be discussing this. Its pointless docs talking to my husband as he literally as no idea & would agree to anything at the minute.
Gosh- that's a lot you have going on. And great you are getting outside support. I really hope your husband makes it to Maggie's - they are so used to seeing people like this.
The worry and anxiety are horrible and will explain the weight loss.
Prof Mary O'Brien is very experienced (can be a little blunt sometimes!) So you are in good hands. Write all your questions down.
Explain to Lung CNS re your husband's reaction - they will help. I expect you may already have seen them.
