Was anyone not offered any treatment?

[Peterdog]

Hi, I often read here about what treatments people were offered and how they are finding the chemo and radiotherapy. My mum was diagnosed last year with stage 4 glioblastoma to the left side, whichever came completely out of the blue. She was a fit, healthy late 70's lady who was physically still good when diagnosed, but her speech was sometimes a little off. She was offered no biopsy and hence no chemo or radiotherapy, as they said a biopsy can be invasive and she could die from this. We were also told that chemo or radiotherapy would only give her about 3-6 months more and wasn't worth it as the side effects would be terrible. We did try and fight this to no avail and by the time we got a second opinion privately, the tumour had spread.. The only thing she was given were steroids to reduce the swelling . She then went on to have a horrible demise with her family feeling helpless as we watched the disease take hold. From diagnosis to passing she had 4 months. Although I can't bring her back, the question has always remained with me whether this is normal and do some not get offered any medical intervention?

[WN20]

Hi, my wife’s illness exhibited itself in a similar manner to your mother’s. Please do not get engrossed in ‘could we have done something different’. I have read up extensively on this illness and the one common theme is everyone is different. A message we have had from our Oncologist. Hope this helps.

[Hidden]

I offer my condolences on your loss. My brother-in-law just passed today from a glioblastoma brain tumor. He was diagnosed on 12/10/21 & passed on 6/9/22. One day short of 6 months. First he had a biopsy, then surgery to remove a portion of tumor that was accessible. He had 1 week chemo and 1 week radiation. At the completion of that and a second MRI he was told there was nothing more that could be done. The tumor was too invasive. The last 6 weeks had been a very difficult existence. Bedridden, unable to eat or hydrate, hallucinations, onset of dementia, MRSA, along with underlying conditions he already had. Everyone has their journey in different ways. I’m sad he is gone, but I’m relieved that he is no longer suffering. I am grateful to have had him in the family for 40 yrs. We too had the many questions you have. Bottom line, we had to accept what doctors, oncologists and surgeons were telling us. I truly wish you well.

[Damned66]

My husband is 56and has the same and they said the same to us no treatment just steroids, and it is unbearable to watch, it’s a bit like being on death row, sorry for your loss.

[AdultChild1]

Similar situation, except my mom is 53, she had a tumor on the left frontal lobe they removed to get a biopsy of, and one on the right frontal as well that was left alone. We were offered 15 treatments of radiation, no chemo. Due to the location of the tumor that was removed she has balance and communication issues (she was struggling with this pre-op), so she doesn’t qualify for clinical trials, or things like proton/photon therapy because she can’t transfer on her own and they wouldn’t let me help her transfer. So that was the answer twice, a several told us they couldn’t/wouldn’t provide any additional care. We elected not to do radiation because they explained it wouldn’t help her and it would damage the good tissue she has now. She’s perked up since discharge from the hospital after being there for over a month, which I am so thankful for. It just sucks. I would do anything for my mom, and now we are just fighting for her in a different way. We are using steroids and anti-seizure meds now.

[RMDF]

Hi, So sorry for the loss of your mum, My husband was diagnosed in May, stage 4 glioblastoma as well, it has since been removed, with 6 weeks of radiation and chemo pills the evening, some nauseous with it. This week he'll have another MRI to see how the treatment helped him, praying for good results. The Drs say this is the normal treatment plan for this cancer.This also came out nowhere, what prompted him to go to the hospital was constant headache along with his speech hesitation, looking for words, thankfully he did, he is doing good still has some speech hesitation. I'm new to this site. Again sorry for your loss.

[Mad4cats in reply to RMDF]

I also presented with word finding difficulties- which I'd experienced 2.5 years earlier when I experienced covid in April 2020. I contacted my GP expecting to be offered a hormone screen, but instead was asked to go to A and E. three weeks inpatient admission and lots of investigations led to diagnosis which obviously was a huge shock for me and my family

I was informed by the neurosurgeon pre op that it wasn't curative and that I could either have a biopsy only or that plus debulking of one tumour- the others were too deep in my brain. I opted for the latter and was very glad to come through surgery with none of the potential risks outlined to me presurgery (such as risk of CVA, which would mean I wouldn't be offered radiotherapy and chemotherapy)

Yesterday I completed 6 weeks of radiotherapy plus oral chemotherapy and am currently on a month off before I start on oral chemotherapy again

I was told there were no clinical trials for this type of cancer, and that the treatment I was being offered was the 'gold standard' ie that this is what I'd be offered if I went elsewhere

I hope this helps

[RMDF in reply to Mad4cats]

Hi, My husband oncologist says there's a lot of trials out there, it will depend on your specific tumor type and medical needs. I think you can Google brain tumor trials to see those offered. When his Dr..was searching while we're in the office, I could see the computer screen, there we're pages of trials being offered. Also thou the usual glioblastoma treatment is removal of tumor, much as possible, then radiation and chemo, then 6 months of follow up chemo with MRI checkups. So with that I like to see how everyone else's treatment varies ... just in case something may work better. All my prayers to everyone effected by this disease and their families, and bless the medical community that will help our loved ones thru their journey.