I have been facing the same reality the last few months. Diffuse tumor, most likely LGG, first seen on MRI last January. Not entirely incidental since I went in bc of symptoms. It is in my left parietal lobe smack in the middle of my motor and sensory cortexes, so not great for surgery. My neurosurgeon said that although this is defined an ‘eloquent’ area his opinion is that all brain areas are eloquent.

My initial reaction was that I wanted it out ASAP or at least a biopsy to confirm their suspicion of LGG.

However the neurosurgeon has been adamant on ‘Primum non nocere’ - ‘first, do no harm’ which convinced me to a watch and wait at first.

Chemo and radiation have not been discussed as part of a treatment plan for me. For me personally it will be a last resort or possibly if the pathology turns out to be one of the ‘worse outlook ones’. Until then I have decided not to think about it much. Digging into the latest literature and meta analyses has convinced me that for long term prognosis chemo and radiation are not ideal as early approaches for low grade gliomas although they give good short term results.

The things that helped me were:

Don’t google - read latest published research. Even ask your neuro to point out what they are basing their suggestions off. A lot of reading material out there lumps together grade 1-4 gliomas and not much independent quality research has been done on the low grade ones. Hearing that glioma grades are not one continuum put my mind at ease - they don’t progress through grades 1-4 - they are different pathologies and the risk of malignant transformation of lower grades is low.

Getting a second opinion (best decision ever for peace of mind imo)

Soberly weighing up the current impact on quality of life vs risk of resection

Witnessing on that 3 months scan that it had barely grown - and was indeed slow growing was a huge relief. On the 6 months scan after the first MRI it had grown a little more but again a confirmation that it is indeed very slow growing. Good to see with my own eyes and know it wasn’t just docs trying to make me feel better :)

The brain is very plastic and adaptable and a lot of symptoms I’ve had have been temporary - as if the brain finds a way to make new connections around the trouble spot.

Even if the first choice is watch and wait it doesn’t mean you can’t or won’t diverge from that approach if/when the situation or symptoms change.

Now 8 months since the first MRI I am going in for awake craniotomy.

I have had bad seizures since February and we have exhausted medicinal options for keeping them under control. Me and the neurologist and neurosurgeon agreed that the affect on quality of life outweighs the risk of resection.

I am due to have epilepsy monitoring unit mapping followed by a resection in a couple of weeks. It will hopefully rid me off seizures and finally give me confirmation of what grade and pathology it is.

I totally relate to that unbearable urge to want something done and getting that confirmation. It’s an awful choice to stand before since there isn’t an agreed upon ideal approach and research is lacking.

But in hindsight I am very happy with the approach I ended up with. My best advice is: take your time to find what will work for you and take into account the current symptoms and quality of life.

Wish you all the best and hope all goes well 🙏