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Glioblastoma

Truckersangel
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Hi my mom has been diagnosed with a brain tumour following a nasty fall at the start of October.  Due to her age and other factors, we were told surgery was not possible and that chemo would only give her quantity of life rather than quality so she is being treated with just steroids (the specialists decision not ours).  We were told she had 2 possibly 3 months when she was discharged from hospital into our care but she remains amazingly well.  The fall caused a brain bleed so she has suffered some brain damage and is unaware of the tumour.  She is incontinent, has limited mobility and needs 24/7 care due to being a fall risk.

As she is doing so well still, could they have misdiagnosed the tumour?  She has not deteriorated any further since her discharge and despite the few issues already mentioned she remains well.  We were unable to speak directly to specialists due to COVID restrictions at the hospital and we’ve had little to no information or help since she returned home.

There have been no follow up appointments made, we were basically sent away with her to die!  Can we insist on a follow up scan?  Am I being optimistic given she’s still so well 3 months in?  Just don’t know where to go for advice or answers and we are still waitin for a care package to be put in place - apparently there’s a shortage of carers and we are on a huge waiting list!

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    Hello and thank you for posting

    I'm sorry to hear about your mom's situation - it sounds like it's been a hard time for you all.

    Unfortunately, it would be unlikely for there to be a misdiagnosis, though I can appreciate you might think this, bearing in mind how there has been no deterioration in your mom's overall health.

    Sometimes some tumours take a while to progress and things may seem to stabilise with no new symptoms for a good few months. The steroids are reducing any swelling and are seemingly keeping things at bay for the moment . 

    It's hard for specialists to give a prognosis as  they cannot ultimately know how any one person is going to respond to the tumour , though without treatment as such, they know that it may be a matter of months not years. So although things look very stable at present, it's possible that within the next few months or possibly longer, things may start to change.

    You could try getting in touch with the specialists secretary with a view to a call, or you may be able to email. The hospital or GP should be able to organise a palliative care team(or symptom control team or Macmillan nurses) which are different to carers, as they are brought in to advise and look after people who have been sent home without any more treatment.

    It must be extremely difficult looking after your mom without the help of carers and I hope that this will change soon - if you are not hearing anything, do get back to social services and the GP if necessary.

    The following link is about the help available for people who may be near the end of their life and may be needing palliative care.  

    Do give us a ring to go over this if you would like to as it's sometimes easier talking over the phone - Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday

    All the very best to you and your family

    Wanda

  • Offline in reply to CRUK Nurse Wanda

    Thank you for your reply Wanda.  We had a home visit from the doctor on Friday and he was amazed how well my mom still is and we asked if there was the possibility for another scan but were told it wouldn't tell us anymore than we already know.  He said the tumour could have been there sometime, could even be dormant and she may continue as she is for the foreseeable.  We explained the difficulty with care and he suggested we look at private paid care if there are no changes by the end of March!

    my siblings and I work full time and we are struggling to meet the 24/7 care but have done so as we thought it was a short time necessity and looking ahead by months is difficult.

    He was concerned mom had developed a 'moon' face due to the steroids so has suggested reducing her dosage at the end of January, which could result in some change in her overall health.

    if the doctor feels another scan isn't necessary, how do we approach getting one?  How do we access care if we are chasing everyday only to be told we are on a waiting list due to a shortage of carers?  We feel like we are drowning in responsibility but want desperately to keep our mom happy in her own home.

    Any advice or help would be appreciated.  The link you sent didn't work

     

  • in reply to Truckersangel

    Hello and thanks for getting back to us again,

    I am sorry to hear about your situation. I can understand that supporting someone with cancer can be exhausting.

    Any help is usually organised through referrals  from the GP and unfortunately if there is a shortage of carers there maybe not very much he can do. 

    The charity Marie Curie have some information about the help and support that they can sometimes offer if there is a Marie Curie near your mom.

    Have a look at the information here.

    We have information on our website about the types of support that may be available  here

    I am so sorry that the link did not work last time.

    The charity Macmillan can sometimes give one off payments to people affected by cancer. It maybe helpful to talk to a benefits adviser at this link here

    Some hospices up and down the country offer day care on a weekly basis where your mom could go and spend the day with other patients. I am not sure whether there is a hospice near you that offers this help. 

    You may also find it helpful to contact The Brain Tumour Charity. They also have a forum and it may be helpful to chat to other relatives. Have a look at their details here

    You ask how you could go about getting a scan for your mom if your doctor feels that it is unnecessary. Unfortunately other then paying for it I don't think that there is any where else you can request it. If the doctor does not think that it will lead to any changes in to how she is being cared for they will probably think it is not going to be worth her while to repeat the scan.  

    I do hope that you are able to get some support for your mom before too long. and that some of these links might be helpful.

    If you feel that it would be helpful to talk through any of this with one of the nurses on the helpline then do give us a ring. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    All the Best,

    Catherine

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