Glioblastoma in Spain

Hi everyone,

I've been spending some time going through your posts on here and just wanted to say how helpful its been to read your stories and learn from your experiences. I'm in a quite unusual situation myself and can't tell you how important its been to find this space and feel less alone. If there's one thing I've learnt over the past months its that we all search high and low for cases matching our own and they are not easy to find as everyone's experience is so different, so this is mine.

My partner is 36 years old, female and was diagnosed with Glioblastoma in June 2023, about 8 months after we met. We live in Spain and all treatment has been carried out there.

She had suffered a head injury some months earlier and had been experiencing headaches and occasional bleeding from the ears and nose. She was very late in getting this checked out and by the time she did the doctors found that not only did she have bleeding on the brain resulting from the injury, but also a tumour immediately adjacent to the damaged tissue. They decided to operate immediately as her blood pressure was at dangerous levels but as the tumour was imbedded in the damaged tissue they found they were unable to resect more than a small sample for biopsy. This was performed through the nose to avoid a craniotomy until they had a clearer diagnosis.

They very quickly diagnosed glioblastoma but since they had already seen that it was in and inoperable position and that radiotherapy would also be dangerous they decided to set her on a clinical trial which involved brachytherapy. From what I have seen, this is more commonly used in prostate cancer and involves the insertion of radioactive seeds around the tumour to blast it and the surrounding area. The theory is that the healthy cells will recover, the cancerous ones will not.

This was done in June and was clearly the "nuclear option" when all other treatments were impossible. Without this, they gave her no more than 3 months to live. It's become clear over the following months that the clinical trials team had little hope of any success and they have since admitted that the radioactive dose they gave her would have overpowered 2 heavyweight boxers (she is 56kg). Immediately following the operation she lost her memory entirely, though she vaguely remembered me she didn't remember her 4 small children or any details of her life, parents, work etc. This took several weeks to recover, but it eventually came back.

Through the summer the pain she has suffered from the treatment has been immense, the doctors encouraged her to be admitted for sedation but she refused, she was certain that would be a one way ticket. Against all expectations she put up with it and fought her way through, we managed to get away for holidays on the coast with the kids and with heavy pain medication she was able to last the 110 days that the radioactive seeds would be active before absorption, taking us to the end of September.

In September they took her in for scans and to everyone's amazement the tumour had shrunk and was all but invisible. In October they called with results of blood tests which showed negative for cancer markers. Unfortunately, the good news only lasted 24 hours when they called again to caution that blood tests are are notorious for false negatives and that they needed to double check with a scan. Sadly, the scan showed that the tumour was still there. 

As it stands now, we are waiting for another scan by the end of this week (should have been last week but the machine broke!) to confirm whether the tumour shown in the previous  scan is still the original tumour in retreat or is a regrowth. If its a regrowth, we are warned, we are out of any further options.

In the meantime the toll the treatment has taken on her is evident. Her kidneys are suffering from the medication, her gall bladder is giving up, she has developed a hernia, multiple thromboses and her blood pressure is all over the place, her veins hurt all the time and the headaches are now uncontrollable through any of the available medications - but still she performs duties as a civil guard, Tough as nails.

The hardest part is the waiting. The clinical trials team have progressively shrunk into the background as it seems her survival of their treatment has screwed their statistics. The oncologists and neurologists are out of ideas to control the pain, treat the tumour or provide a prognosis as they appear to find themselves in uncharted territory. So we wait and we hope.

My question, if you've got this far, is have any of you heard of brachytherapy being used to treat glioblastoma? I have obviously googled the heck out of it but haven't come up with much.

Also, how do you cope with the uncertainty? How do you communicate this to kids? - their father is not on the scene and she has no extended family at all, so I am pretty alone and scared and can't help wondering if there is more I could be doing to help.

Anyhow. Thanks for listening and my very best wishes to all of you going through this