Brain Tumor questions to take to follow up clinic

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My husband was recently diagnosed with a brain tumor and we were told due to the shape/shading that it is a cancerous tumor.  A full body scan showed no signs of cancer elsewhere.  He just had surgery to debulk the tumor and he is recovering well considering the amount of trauma involved with the procedure. The surgeon told me that they removed as much of the tumor as they could see, which sounded fantastic when he said it.  We've been advised by an occupational nurse and speech therapist that my husband's speech should improve as the post op swelling reduces, but that he has degraded movement on the left hand side, which is likely to get worse in time.

We won't know where we go from here until we attend a follow up clinic at the hospital.  We hope to have the results of this histeopathology (I thnk that's the word) of the tumor and the results of the MRI that was done 2days post op.  The follow up clinic will be either 1.5 or 2.5 weeks following the op depending how quickly they get the results back.

This is a list of questions I"ve come up with so far and I'm not sure what else to ask.

We want to know about the further treatment required ie. radiotherapy, etc.

What is the tumor called?

Is it cancerous? - if so, what grade is it?

How likely is it to grow back?

Has the histeopathology results been able to confirm if it is a primary tumor?

What are the long term effects of the debulking that has been done and the further treatment?

Will another full body scan be done to establish the cancer didn't spread elsewhere from the time of the last full body scan until the debulking (approx 3 weeks)? 

Is it hereditary? (I"m expecting they will say they don't know)

What colour is the tumor? and what colour is the brain?  (This is to satisfy my curiosity about them saying they removed as much as they could see.)

  • Hi Shebelieves

    a warm welcome to the group. So sorry to hear about your husband's diagnosis. Life's too cruel and not knowing the full facts is a 1000 times harder than knowing what's what.

    Your questions sound like a good place to start. The dr should answer most of them through natural conversation about the pathology results. 

    Basically there is no such thing as a silly question. Write everything down before you go - all your fears/concerns. The notes will also help to keep you on track in the appointment itself. These early appointments can be quite emotionally overwhelming.

    I am supporting my husband through his grade 4 brain tumour journey (glioblastoma). Our neurosurgeon laid it all in the line the day we met him before my husband's op as he was confident from the scan images of the tumour type. One question perhaps to ask is if it  methylated or not. One responds better to chemo than the other. We actually saw photos of my husband's initial tumour. The neurosurgeon was able to show us the images that they had taken during surgery. Not sure if that's routine or not. They were very graphic and at the time quite upsetting.

    This is a safe and supportive space and I'm sure others will be along shortly to make further suggestions. My rule of thumb over the past two years plus is that if it is something you find yourself fretting about or dwelling on then it is worth asking about. I've also learned that the prognosis that is offered is based on best guesstimates worked out from published averages. No one is average. Everyone is unique and tumours impact each person in a different way depending on their size, location in the brain, the general age/health of the person etc. Back in Sept 2020 we were told my husband had 12-15 months...he's still with us and all things considered in miraculous shape. 

    I'm not saying this to scare you. We are a long way down this emotional rollercoaster of a ride. Currently he has 4 active tumours that we know of on the one side of the brain plus the original inactive one. Today he ran about 10 miles. His symptoms are all cognitive/speech and language related. So ask him to run 10 miles and off he trots. Ask him to read this email and he wouldn't get past the first couple of words. The brain is a weird and wonderful thing.

    Please reach out here anytime. As I said its a supportive community and I've personally felt the benefit of being a part of it There's always someone about to listen who gets it, someone to hold your hand and offer that virtual hug when its needed. You're not alone.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    Please make sure you take time for yourself here. Remember you've been through a lot here too and need time to process it all. Taking me time isn't selfish. It's essential to help you keep your wee batteries charged.

    For now though I'm sending you a huge hug and lots of positive energy. I hope the answers to your questions aren't too scary.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you for your reply and for sharing your experiences with your husband.  I appreciate the positive energy too since I'm still up and down.   I've written the questions down to take with us to our next appointment and will be sure to add to the list as I go and will keep checking back on this post in case anyone else has suggestions, too.  All the best Wee Me to you and your husband.

  • Hi,

    Just a quick note on how the follow up appointment went.  No matter how much you prepare, it is a lot to take in.  I've included what we were told in this post - which is specific to my husband's case - but I wanted to share for what it's worth.

    We want to know about the further treatment required ie. radiotherapy, etc. - We have our first appointment to talk to Oncology next week to discuss starting 6 week radiotherapy treatment in the next few weeks.  We were given a small binder of literature and a booklet about radiotherapy that we need to read before we go to Oncology.

    What is the tumor called? - At the minute it is referred to as a Glioma, which they said is a generic term for a tumor that originates in the brain.  Further analysis of the tumor is taking place, then more will be known and we might be given another more specific name.

    Is it cancerous? - if so, what grade is it? - Yes it is cancerous.  We need to wait for the further analysis to find out if it's a 3 or 4.

    How likely is it to grow back? - It will grow back but there's no telling when.  Further analysis should give an idea how aggressive it is.

    Has the histeopathology results been able to confirm if it is a primary tumor?  Yes it is a primary tumor

    What are the long term effects of the debulking that has been done and the further treatment?  We weren't given any specific side efffects but advised that the side effects from surgery are much less than there would be with no surgery.

    Will another full body scan be done to establish the cancer didn't spread elsewhere from the time of the last full body scan until the debulking (approx 3 weeks)?  We were told this tumor - Glioma / Primary Tumor doesn't spread around the body or lymph nodes the way other cancers do, so a full body scan is not needed to check it has spread to other body parts.

    Is it hereditary? No

    What colour is the tumor? and what colour is the brain?  (This is to satisfy my curiosity about them saying they removed as much as they could see.)  Rather than getting into specifics about colour, they said that the tumor looks different than the brain, so they can see the difference when they remove the tumor - however - the tumor has fuzzy edges that go into the surrounding brain tissue.  The fuzzy edges cannot be removed as it would involve removing part of the brain - which they can't do like they would with Breast Cancer for example.  This is where the Radiotherapy comes in - to zap a margin of area around where the tumor was removed.  They showed us the before and after MRI results.  Before there was a large tumor visible and after there was nothing visible on the scan but a small dark spot where the tumor once was.

    Is it Methylated? We dont' know yet - pending further analysis.

    My husband took a list of the symptoms he has been experiencing post op and the nurse confirmed they are normal symptoms.  I encouraged him to keep taking the notes as this is the first time he has ever done that - and the nurse reinforced it, too.  She said she'd rather hear it from him than have him suffer in silence when they might be able to do something about it.  We found out he can't drive until 2 years after his treatment finishes, and probably not be returning to work. either.  Sometimes finding out about the practical side of things is as hard to take in as the medical/physical side of things.

    How long is a piece of string?  I guess I'm a mix of emotions.  I wouldn't say I'm numb or down but I'm not completely sure it has all sunken in yet. 

  • HI Shebelieves

    Thank you for sharing the update that you got. You're right, its not easy to hear those things but I'm glad that you got most of your questions answered. Not knowing is far worse than knowing, I feel.

    The practical side can be tough. Losing his driving licence and having to them sell his beloved car was a hard blow for my husband. His cars had been such a big part of him for as long as I've known him. He also makes a very challenging passenger which does nothing for my nerves when we have to drive to somewhere new!

    All those emotions that you are feeling are perfectly normal so don't be too hard on yourself. Reach out here anytime - we're here for you.

    Take this one step at a time. Ahead of the oncology appointment next week consider writing down all your questions for them and the ones you are still waiting answers too. My husband coped really well with the radiotherapy . He had 6 weeks of oral chemo/radiotherapy combined and had no major side effect other than fatigue. It hit about week 4 and lasted for a month after the treatment finished. He was able to be up and about doing his thing every day. His biggest complaint was that the mask was very tight and they kept squashing his nose when they put it on.

    Hang in there. Stay positive. Sending you a huge virtual hug and lots of positive energy.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm