r/braincancer • u/Skelux • 5d ago
Here's what the Recurrence Looks Like
In followup to this post. I am running out of time to finalize on my decision, so thought I'd seek a little more in the way of opinions, and comparisons to other people's experiences.
In the image below, you can see the main problem - the whispy line of brightness tracking further down my right insular, right beside the putamen. its hard to really define a discrete mass on FLAIR - though on T2 and ADC you can see more of a fill-in effect along that part of the insular, which I assume is edema caused by the gradual infiltration.
Something similar is happening on the opposite side of the cavity, but I don't really care about that spot as much. If nothing else, it might help signial that tumor biology on both sides has not changed too much. I think the more-distant spread along the insular is mainly due to path-of-least-resistance which O2 tends to prefer.
Its hard to really say how fast this is progressing, since it is ill-defined - docs would not even guess whether it was still grade 2, but did agree that it is spreading "slowly". This scan is 4.5 years post-op from the O2 GTR.
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u/Even-Background-9194 5d ago
Are you definitely sure Vora is not an option and the cost was not inflated by your oncologist? I would seek a second opinion as Vora is the obvious choice if you didn’t want invasive treatment (as per your earlier post). Vora is one small pill a day that is easily tolerated, and will give you more thinking time.
Note it can take 6 months to work though
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u/marcosmas03 4d ago
How often do you get MRIs? That can help you decide your next step of action. Mine has grown 2 millimeters in 14 years since I had chemo. That means it’s still a low grade.
My doctor who does not have the best bedside manner has said that I am never in remission. That the medical definition of remission is that it is gone. You can never tell if a low stage is gone.
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u/Electrical-Egg-2319 4d ago
I’ve never understood this to be honest, I thought it’s the case for majority of cancers that it’s impossible to tell if everything is gone and it can return sooner or later…
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u/marcosmas03 4d ago
When I asked my doctor if I was in remission a long time ago she said “you might be able to say that”. I started crying. She asked me why is was crying and I told her that it was the good news. She then gave me the medical definition of remission. I still bought me an ice cream cone to celebrate.
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u/Future-Chapter-9502 4d ago
So sorry to hear this, I still hope it might be something else, not recurrence. But even if it is recurrence, please keep fighting, for yourself, for all of us. Do you know your Ki67 ?
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u/Skelux 4d ago
Here's my current for/against.
AGAINST SURGERY:
-decent chance of immediate deficit, assuming they cut out some insular or graze corpus
-if they instead don't cut out much of the insular, there is little net gain from the surgery
-if it is already grade 3, the surgery will be mostly futile and just reduce my qol
-all the stress, appointments, recovery, etc all wastes and diminishes my remaining time
-intra/post-op complications - CSF leak, bleeds, infections, clots, stroke, medication reactions
FOR SURGERY:
-some loose evidence that debulking increases OS+PFS
-if that particular insular spot becomes nodular, it will push against the putamen/possibly invade faster
-chance of prolonged symptom/seizure control (also a chance of inducing these)
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u/marcosmas03 4d ago
You might consider the following, and these are things my doctor has said. For a low stage cancer it is hard to make sure that you are removing all of the tumor. There is a fine balance of removing tumor cells and healthy brain cells. If you have already had chemo, can you get it again? Have you had radiation? My surgeon believes resection should be the last option for low grade.
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u/OutlanderLover74 3d ago
So, mine is in growing into the insula too. I was told they can’t operate there because there’s an artery that could be nicked and kill me. That’s a big reason why I’m on Vora. Is it taking in contrast? That’s a good indicator of whether it’s low grade or high grade.
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u/Dazzling-Sir1250 5d ago edited 5d ago
I'm sorry you're going through this. Please know that it is "normal" to have progression after that long, as incredibly shitty as that is, with low grade gliomas. Usually, they are going to want to see progression over several scans before they take action, so you have some time: do something fun that you're able to do during the wait.
Also, remember that surgery is the ONE THING that we have tons of data on regarding brain tumors. We know that removing tumor leads to longer overall survival rates and time till next progression. But also, I just read your original post, so I see that they think that surgery is risky.
Both with Vora and chemo/radio, the timing is still unclear in terms of when it is best to do. If surgery isn't an option, of course Vora and chemo/radio should be weighed. And as u/Even-Background-9194 notes, because Vora takes time to work, your drs would have to feel like you have that time (e.g. surgery isn't feasible/necessary right now for whatever reason. For me, Vora has had magnitudes of smaller side effects than chemo/radio, but everyone is different.
You should be able to get Vora covered. For me it's $90/month with insurance even though without it would be $40k, and there's still compassionate use through the company as well (and maybe $ assistance). Vora is worth a shot. Only you can say if you want to do SOC, but I will say even though I did horribly on it (and I don't think being "scrawny" is a predictor--some people in poor overall health do great on them; some people like me in great overall health do poorly on them), I am still leading a life worth living right now. Retired, unexpectedly, at home (and privileged to have a partner to be able to do that), enjoying my child and friends. Doing fun stuff every day while I can, until I cannot.
I would get a second opinion if things seem that dire before you make the drastic choice of doing nothing. But of course, to each their own.