I wish u many prayers.   I'm struggling 2

Hi Mheffe,

I am so sorry to hear about your husband's diagnosis and to learn that they couldn't get the entire tumour out at time of surgery. You must both be absolutely stunned by this news and my heart goes out to you.

I had a young friend of only 26, who had similar problems as your husband. He had 4 major operations and lived nearly 3 years longer than the doctors predicted. If you want to hear other peoples' experience of grade 4 brain tumours, but only if you want to hear it as it really is, you can go to the blue banner at the top of this page, click search and enter your keywords into the box, then click again. this will bring up previous posts on this topic, which might help you to prepare for what lies ahead.

I sincerely hope that you can prove the doctors wrong. A doctor's prediction on timelines, is at best a guesstimate and several pass this date by quite a spell.

I have lost both of my parents, several family members and close friends to cancer and, have been contending with it myself for the past 8 years. I have had 2 bouts of breast cancer and see the dermatologist next Monday for tests to a mole on my back. It is a devastating disease, as it affects family as well as the patient. I have found that a positive attitude and being able to talk to one another about it openly, all help me to get through.

Do you have any family or friends who can support you through this ordeal?

Do please keep in touch and let us know how you get on. We ae always here for both of you.

Kind regards,

Jolaminexx

We have just found out that a very close family friend, whose like a grandad to my 2 sons had a brain tumor, he then had an operation & more scans, I think docs said they removed 80%, only symptoms he has are; using wrong words, getting numbers mixed up, forgetting what he wants to say, pauses in between words, NO pain what so ever, he had op last WK, & went back for more results this WK, to be told he had grade 4 brain cancer, incurable & its rapidly growing (not sure if I've phrased that right,not sure if they mean tumor already coming back?) Next route has been discussed & it sounds like quite aggressive chemo everyday (again, not sure how correct everyday is due to upset whilst explaining to us) I dont mean to sound stupid,but I guess incurable means terminal, & chemo is just to help.prolong life, Does any 1 know what life expectancy we are talking here? I've seen lots on internet but dont know what sites to trust, I'm so sorry I'm typing an essay, I'm broken,I can't think straight, WHAT do I tell my sons age 10 & 14, some people are saying be honest & open, but I dont want my boys wondering/thinking if this day or that day is going to be his last,their doing so well in school, & 10yr old is so sensitive & a deep thinker, I so stuck on what to do, has anybody got any advice regarding both issues, A) The brain cancer as stated above & B) what & how to tell my boys. Once again, many apologies for typing so much, but honestly its kind of helped a little, its quite therapeutic. Regards, B

Hi,

Welcome to our forum. I am so sorry to hear about your friend's predicament.

Incurable means just what it says on the tin - they cannot cure the cancer, but they can use chemo to try and reduce the size of the tumours and slow the rate of growth.

Unfortunately, no one can predict life expectancy. At best, his consultant may be able to make a 'guesstimate' based on his medical history, aggressiveness and type of brain tumour, general health, etc. His prognosis will be based on the law of averages and each case is individual to the person. We often find that doctors predictions can be way out either way.

It will be difficult for your sons to cope, as I presume that this is the first encounter they've had with someone close being very ill. Children have big ears and often pick up on conversations that they are not supposed to hear. It is better if you tell them yourself, rather than them overhearing you or hearing about this from somebody outside. Children are very resiliant and don't need chapter and verse. Just a gentle explanation that your friend is ill is all you need for your 10 year old. Your older son can probably take a little more detail. If your younger son wants to know more, rest assured that he will ask you.

I am glad to hear that you found it therapeutic to write down how you feel. Many find this helpful.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Mheffe

i can imagine what your husband is going through as my brain tumour has also come back as a grade. 4: I was in remission since 2012

and just when everything was going perfect,I have an amazing job; amazing husband we celebrated our two year wedding anniversary in October. This year the headaches came back, the de  is vu sensation, funny metal type taste in my mouth, as my scans were only once a year I knew something wasn’t right so I phoned my oncologist who booked me in for a scan, a week later and I had heard nothing so I thought no news is good news until I saw her in and she looked so sad that’s when she told me the cancer was back

My whole world fell apart yet again, I did go a clinic in London yday as they have done a new procedure where they insert a metal rod into the tumour and heat it up to 70 degrees, my tumour is too advanced so they can’t operate plus my surgery in feb I ended up with a cfs leak so they opened me back up to put in a shunt and that is when they saw my bone flap was infected so they had to remove it. So now I have no bone in the front part of my skull

Right now all I can do is take the oral chemo

First time around I had 6 weeks of radiotherapy and chemo then another 6 months of chemo

the best thing to do for you and your husband is stay positive I know it’s hard to do there have been so many times where I have just wanted to give up. 

I end up losing my temper really quickly then I feel bad but I know it’s not my fault.its this stupid thing in my head

i really hope your husband gets through this, joining a support group might help, I’m being treated at a hospital in London and they have a place who run support groups for people with cancer.

god bless I hope he pulls through

kind regards

parminder 

Hi just to know how old was your husband when he was first diagnosed with stage 4 brain Tumor? Sadly my dad has been diagnosed recently and iam really upset about it what to do now?

My husband was diagnosed with a grade 4 brain tumour on 11th Dec 18, just as my mother was dying from lung cancer. He had no inkilng that anything was wrong, no headaches, no nothing, i just returned from nursing mother, my two weeks off just to find my husband having a god almighty fit, and from then on even after his six weeks chemo and radiotherapy my man is still not here, where has he gone? I want him back.

Hi There

Just after reading your post, my own sister in law was diagnozed with Grade 4 brain tumour November 2016 and was given 12 to 18 months to live, she had 2 surgeries and then chemo tablets and radiation, she is now getting chemo every 2 weeks intravenous but is in great form and continues to drive ,go on holidays and do her daily chores, just complatins of being a bit tired. I see no change in her since she was first diagnozed and she is usually happy with the results of her MRi when she goes every few months. She has a great outlook on life and I would say that this is very beneficial to her.

This is now 2 and 1/2 years and hopefully she will keep going strong. Hopefully this reply will give you hope and good luck to both yourself and your husband. 

Hi you were lucky that surgery was possible in my case  my dads brain surgery is not possible the doctors said, just chemo and radiation, don’t know what to do but he is getting weak day by day , anyone knows where can I take him if the surgery can be done?

Hi. How big was the tumour in 2016? I’ve been told surgery isn’t possible but am going for chemo and radiotherapy, but surgery is possible if tumour shrinks enough.