I'm... concerned for the health of this man. I appreciate his dedication, but I read a level of love that's pressing past caring for the human and into beating yourself up.
Did she ask you to cure this tumor? Did she ask you to post about it?
This is a common story in disability and chronic illness communities -- a partner gets so fixated on the illness they forget the human afflicted with it. The ill partner goes to the grave wishing their partner would stop fighting and start just spending their remaining time filling their lives with joy.
It leads to especially dark places when they don't succeed.
I wish him all the best, but don't lose sight of the human suffering the illness and what they want.
This post was actually really tough for me to read, because it read exactly like the suicide note a friend had sent me (and others) after his partner had died suddenly. It chronicled the joy and happiness in their relationship, her illness, his slow descent into desperation, and, after she passed, his resolve to follow her.
If the author of the post is reading these comments, your heart is in the right place, but just be careful and take care of yourself. Don't lose the forest for the trees.
I fully agree, there is something unsettling about this post and I can't put my finger on it, but here is an attempt:
His girlfriend is going through this medical issue, but he's made this post about himself? He's going to be the hero to save his GF and others with this brain tumor using the medical equivalent of vibe coding. I don't know, it just sounds immature and wrong
I’ve been here. I lost my wife to a metastatic tumor. He’s coping with the horror through determination to fight and win, and communicating it.
My person had 4 surgeries, countless MRIs, you name it. We had access to the best doctors in the US. There was no way she was going to not beat this thing. We booked a vacation and there was no doubt in my mind that we were going to be there. Until the day that changed.
The dude is a little unhinged. He’s trying to have some agency and control where none exists. He wants to save the girl he loves. So did I. Give him some grace.
Yup, you got it. I'm a survivor (so far) from a relapsed cancer myself. People have no idea of the kind of insanities you are willing to pursue in such desperate situations. Grace and forgiveness is the right approach here.
He is 25 years old and trying to cope with a hard life event. Let’s not act like it doesn’t affect him. It affects everyone around her and the strong reaction from him is really a positive reflection on her, isn’t it?
His post is written and edited to garner sympathy and support. I don’t mind that for a naive but noble cause. And there is always a slim chance of success.
I don't know, she is not terminal, she is in the part where the knowledge is lacking, so what he is doing is actually reasonable.
Nobody knows anything, giving a shot to save the love of your life, with their approval, might be good, assuming you still spend time with them.
The symptoms if they came back would kill any hope for traveling anyway
I think that for an average person a few years ago, probably there’s nothing meaningful they could have done.
For a smart VC with some money and with some knowledge of biology and willing to put in some hours, and with a disease that is “on the bubble”, i.e. not a slam dunk for modern medicine, but also not a death sentence, that there’s a decent chance that he can meaningfully improve the outcome.
I also see what you’re saying about the vibe and making it about himself, but that’s also helping him get attention… here we are talking about it. With more attention he’s going to get more skilled people helping her out.
It’s an innate human desire to do everything in one’s power to save the person you love.
If you had a feeling you could do more, would you not try?
When you’re not personally involved, it’s easy to see that this might be misguided, but when living through it and experiencing daily fear of loss of your partner, it’s extremely difficult to think logically.
I have seen this multiple times and it’s always so unbearably sad.
Hmm. Perhaps it serves as a commitment to post about this publicly? And as one other person mentioned, you have a far better chance of beating this today than just a few years ago, especially with some money and connections.
>It leads to especially dark places when they don't succeed.
The same can be said about child birth, and yet, people still make kids.
I often think that I would do the same thing if I or someone I loved had a chronic disease, either go all in in a specific project before I die, or go all in on a moonshot to accelerate a cure.
A subtle change that I think could have a lot of potential impact is changing it to "I'm going to try to cure".. instead of "I'm going to cure".
It will still be true, it will still be an act of love, but it removes the aspect of being a way to avoid the pain of a loss. In fact, if you face the likelihood of loss, then you will be able to actually optimize for increasing likelihood of a cure instead of risking optimizing for maximal coping mechanism.
I agree the way he writes about it is uncomfortable. At the same time I also think some people motivate themselves with a version of "Do or do not, there is no try." He desperately wants to do something, but a lot is simply out of his hands. Still, that energy has to go somewhere.
It's very possible that his partner is fully aware of and supportive of his mission. And I do agree that he should ensure that this is something his afflicted partner wants.
One point I want to make though is that even if someone embarks on a mission like this and fails, what they learn in the process — and uncover for the world at large — can help the next generation. It's not futile. It's not in vain.
At some point, every man comes face to face with the lie of his potency. We're told our willingness to turn ourselves into ruthless avatars of purpose makes us powerful. Unstoppable. We can do anything if the call is great enough. Is it suspicious that the call takes the voice of more powerful men? Pay it no mind. The world is yours for the taking.
Then, one day, the tide comes in. You learn what old men know. What women know. What every victim of circumstance knows. Sometimes the world just happens to you.
I had a (micro)prolactinoma that was successfully treated with medication. Even though it was nowhere near as "bad" as this man's girlfriend's, getting it diagnosed took almost 2 years and the possibility of prolactinoma was dismissed outright by several doctors.
It should be pointed out that the pituitary gland sits at the base of the brain and prolactinomas are not technically considered "brain tumors" because they're not in the tissue of the brain. So it's a mischaracterization to keep referring to this as a "brain tumor" and a bit of an odd one for someone trying to start a medical research effort.
Unfortunately, the reality is that sometimes life just doesn't deal you a good hand. I think it's sad this man is talking about children when prolactinomas are a leading cause of infertility and it sounds like, for a variety of reasons, this man's girlfriend has one that is very difficult to treat. While it's OK to always hope, it's also possible to cling to false hope so strongly that it prevents you from accepting and moving forward with the life you have instead of the life you envisioned.
Agreed that initially referring to it as "brain tumor" would have been fine.
Thanks for sharing your story too, perhaps this condition isn't rare. Coincidentally I once went into bar and vaguely recognized a roommate I hadn't seen in years. His appearance had changed and he now had remarkable Hulk like features. I restrained myself from asking but I honestly thought he looked great.
We chatted and he shared that he had "brain surgery" 2 weeks(?) prior to remove a tumor on his pituitary gland. He just woke up one day and his vision was distorted. The next day he woke up blind which lead to him getting a diagnosis and surgery. The tumor had also caused pituitary disfunction which induced giantism.
If I recall, the surgery was performed going behind his nose through an incision in his mouth above the posterior of his upper lip which differs slightly from the approach in the OP. It's amazingly fortunate that this is an option given it looks inoperable from the MRI.
I'll also share that towards the end of our conversation he thanked me for not commenting on his appearance and that he was self-conscious. It's compelling, especially when someone looks good, to mention it, but there's no need to lead with it.
If I understand it correctly, a prolactinoma can make it harder to have children mainly because high prolactin can disrupt ovulation, but it does not automatically mean having a child is impossible. In many cases, treatment brings prolactin back to normal and fertility can return. And if carrying a pregnancy is not possible for medical reasons, there can still be options like IVF, and having someone else carry the pregnancy where it is legal and appropriate. So it may be more complicated and it can be very hard in some cases, but it is not an absolute dead end. A hopeless tone is not very useful here because it can discourage people from exploring realistic options and evidence based treatment paths.
If we had a machine today with unlimited intelligence could it figure out a cure for cancer with our currently available data, or would it just request more data and ask us to conduct more studies? Is the bottleneck our ability to recognize patterns in the current data (i.e. intelligence) or the lack of sufficient data to determine a pattern? Or is it some other more nebulous thing that we aren’t considering?
I’m personally convinced that at least for physics we have sufficient data for the next big theoretical breakthrough and we lack only the imagination and the computer power required to numerically validate the maths through simulations.
It feels an awful lot like the decade before Einstein’s landmark papers on quantum mechanics and relativity.
Watch how people like Terrence Tao et al are transforming how mathematics is done: with AI assistance and the Lean theorem prover, at a level of collaboration and consistency never before possible.
Something similar is just around the corner for the other sciences, the ability to mechanise the integration of vast tracts of previously disconnected facts and insights.
Surely something of value will pop out of the result…
No new successful fundamental theory has even gotten off the ground since the Standard Model, which is half a century old at this point.
Our understanding of gravity hasn’t improved substantially in a century. String Theory is dead, stop whipping it. Other quantum gravity theories each have one proponent going in circles futilely looking for a big breakthrough that never comes.
Superconductivity was discovered 115 years ago and we still don’t understand it! We’re “finding” new HT materials by accident and then attempting to explain how they work.
Nobody can figure out how to predict a new one, ab initio.
Our understanding of the universe is improving only in the sense that we’re now more certain that we don’t know much at all about: its early history, far future, present behavior of gravity, or its content.
I’m not aware of any “sea change” akin to the scale and scope of QM or GR in many decades despite clear need for one.
Physics has stagnated for a long time now.
My conspiracy theory is that there has been a brain drain into the finance industry, but that doesn’t explain everything.
> No new successful fundamental theory has even gotten off the ground since the Standard Model, which is half a century old at this point.
How long has scientific inquiry about physics been going on? In that frame, is 50 years a long time or a short time?
This feels a bit like the perspective of a non-specialist with access to the findings that end up in the popular press vs. things that are discussed at conferences/in journals.
That long duration stress from caring for a loved one with a potentially fatal illness is difficult to describe. I remember sharing that same driving thought of “if this goes south, will I honestly be able to say I did everything I could?”
Thank you for sharing the story. I appreciate your taking the time to write out all of these things despite having to also do the work to combat the condition.
About the kids thing: Genetic causes for these are super hard to isolate but if, perchance, science sees fit to give us the information then you do have embryo selection available to make this choice safely.
Rooting for the two of you. And just wanted to thank you for the story. The sum of anecdotes often is the source for good hypotheses for science. I think you’re doing a good thing sharing what you’re doing.
Not intrinsically or commonly deadly. https://www.hopkinsmedicine.org/health/conditions-and-diseas... says "1 in 10 people will develop a pituitary adenoma in their lifetime" - pituitary adenomas is the more general class of these benign tumors, as the pituitary gland produces multiple hormones.
I'm confused by this post because it seems like his partner got best therapy possible with two surgeries followed by medications without going blind or having other major hormonal issues which can happen after surgery. As correctly stated in this thread prolactinomas aren't a death sentence or even (technically) a brain tumour, and the major risks have been avoided so far. What exactly is being accomplished by a VC deeply researching this case beyond satisfying the valid desire to help your life partner?
What an incredible story! Thank you for sharing. So much for that New Yorker cartoon “Honey, come quick, I found something all the scientists missed” (well, something all the scientists thought was infeasible anyway).
OP if you're reading this, your time is better spent advocating for your partner, being there for her and loving her.
We've been using "AI" in science far longer than you realise. We happily take on new tech at breath taking speed.
Don't waste your time, please just focus on her and not the disease.
I'm... concerned for the health of this man. I appreciate his dedication, but I read a level of love that's pressing past caring for the human and into beating yourself up.
Did she ask you to cure this tumor? Did she ask you to post about it?
This is a common story in disability and chronic illness communities -- a partner gets so fixated on the illness they forget the human afflicted with it. The ill partner goes to the grave wishing their partner would stop fighting and start just spending their remaining time filling their lives with joy.
It leads to especially dark places when they don't succeed.
I wish him all the best, but don't lose sight of the human suffering the illness and what they want.
This post was actually really tough for me to read, because it read exactly like the suicide note a friend had sent me (and others) after his partner had died suddenly. It chronicled the joy and happiness in their relationship, her illness, his slow descent into desperation, and, after she passed, his resolve to follow her.
If the author of the post is reading these comments, your heart is in the right place, but just be careful and take care of yourself. Don't lose the forest for the trees.
I fully agree, there is something unsettling about this post and I can't put my finger on it, but here is an attempt:
His girlfriend is going through this medical issue, but he's made this post about himself? He's going to be the hero to save his GF and others with this brain tumor using the medical equivalent of vibe coding. I don't know, it just sounds immature and wrong
I’ve been here. I lost my wife to a metastatic tumor. He’s coping with the horror through determination to fight and win, and communicating it.
My person had 4 surgeries, countless MRIs, you name it. We had access to the best doctors in the US. There was no way she was going to not beat this thing. We booked a vacation and there was no doubt in my mind that we were going to be there. Until the day that changed.
The dude is a little unhinged. He’s trying to have some agency and control where none exists. He wants to save the girl he loves. So did I. Give him some grace.
Yup, you got it. I'm a survivor (so far) from a relapsed cancer myself. People have no idea of the kind of insanities you are willing to pursue in such desperate situations. Grace and forgiveness is the right approach here.
I don’t agree.
She has posted publicly about her condition.
He is 25 years old and trying to cope with a hard life event. Let’s not act like it doesn’t affect him. It affects everyone around her and the strong reaction from him is really a positive reflection on her, isn’t it?
His post is written and edited to garner sympathy and support. I don’t mind that for a naive but noble cause. And there is always a slim chance of success.
What would you suggest as an alternative? Just quietly follow the doctors' instructions and hope for the best?
> What would you suggest as an alternative?
Just keep trying, especially when others have given up
https://www.cnn.com/2025/09/08/us/video/treatment-cure-disea...
Yes. Sometimes people just die, and you have no influence on that.
And sometimes the medical system’s inertia and default risk aversion keeps someone from an obvious diagnosis or treatment that could save them.
Sometimes strong advocacy is exactly what is needed.
I don't know, she is not terminal, she is in the part where the knowledge is lacking, so what he is doing is actually reasonable. Nobody knows anything, giving a shot to save the love of your life, with their approval, might be good, assuming you still spend time with them.
The symptoms if they came back would kill any hope for traveling anyway
I think that for an average person a few years ago, probably there’s nothing meaningful they could have done.
For a smart VC with some money and with some knowledge of biology and willing to put in some hours, and with a disease that is “on the bubble”, i.e. not a slam dunk for modern medicine, but also not a death sentence, that there’s a decent chance that he can meaningfully improve the outcome.
I also see what you’re saying about the vibe and making it about himself, but that’s also helping him get attention… here we are talking about it. With more attention he’s going to get more skilled people helping her out.
It’s an innate human desire to do everything in one’s power to save the person you love.
If you had a feeling you could do more, would you not try?
When you’re not personally involved, it’s easy to see that this might be misguided, but when living through it and experiencing daily fear of loss of your partner, it’s extremely difficult to think logically.
I have seen this multiple times and it’s always so unbearably sad.
Hmm. Perhaps it serves as a commitment to post about this publicly? And as one other person mentioned, you have a far better chance of beating this today than just a few years ago, especially with some money and connections.
>It leads to especially dark places when they don't succeed.
The same can be said about child birth, and yet, people still make kids.
I often think that I would do the same thing if I or someone I loved had a chronic disease, either go all in in a specific project before I die, or go all in on a moonshot to accelerate a cure.
A subtle change that I think could have a lot of potential impact is changing it to "I'm going to try to cure".. instead of "I'm going to cure".
It will still be true, it will still be an act of love, but it removes the aspect of being a way to avoid the pain of a loss. In fact, if you face the likelihood of loss, then you will be able to actually optimize for increasing likelihood of a cure instead of risking optimizing for maximal coping mechanism.
I agree the way he writes about it is uncomfortable. At the same time I also think some people motivate themselves with a version of "Do or do not, there is no try." He desperately wants to do something, but a lot is simply out of his hands. Still, that energy has to go somewhere.
It's very possible that his partner is fully aware of and supportive of his mission. And I do agree that he should ensure that this is something his afflicted partner wants.
One point I want to make though is that even if someone embarks on a mission like this and fails, what they learn in the process — and uncover for the world at large — can help the next generation. It's not futile. It's not in vain.
Please be careful not to put words in my mouth.
Yes I was just adding, was not contradicting.
At some point, every man comes face to face with the lie of his potency. We're told our willingness to turn ourselves into ruthless avatars of purpose makes us powerful. Unstoppable. We can do anything if the call is great enough. Is it suspicious that the call takes the voice of more powerful men? Pay it no mind. The world is yours for the taking.
Then, one day, the tide comes in. You learn what old men know. What women know. What every victim of circumstance knows. Sometimes the world just happens to you.
I had a (micro)prolactinoma that was successfully treated with medication. Even though it was nowhere near as "bad" as this man's girlfriend's, getting it diagnosed took almost 2 years and the possibility of prolactinoma was dismissed outright by several doctors.
It should be pointed out that the pituitary gland sits at the base of the brain and prolactinomas are not technically considered "brain tumors" because they're not in the tissue of the brain. So it's a mischaracterization to keep referring to this as a "brain tumor" and a bit of an odd one for someone trying to start a medical research effort.
Unfortunately, the reality is that sometimes life just doesn't deal you a good hand. I think it's sad this man is talking about children when prolactinomas are a leading cause of infertility and it sounds like, for a variety of reasons, this man's girlfriend has one that is very difficult to treat. While it's OK to always hope, it's also possible to cling to false hope so strongly that it prevents you from accepting and moving forward with the life you have instead of the life you envisioned.
Agreed that initially referring to it as "brain tumor" would have been fine.
Thanks for sharing your story too, perhaps this condition isn't rare. Coincidentally I once went into bar and vaguely recognized a roommate I hadn't seen in years. His appearance had changed and he now had remarkable Hulk like features. I restrained myself from asking but I honestly thought he looked great.
We chatted and he shared that he had "brain surgery" 2 weeks(?) prior to remove a tumor on his pituitary gland. He just woke up one day and his vision was distorted. The next day he woke up blind which lead to him getting a diagnosis and surgery. The tumor had also caused pituitary disfunction which induced giantism.
If I recall, the surgery was performed going behind his nose through an incision in his mouth above the posterior of his upper lip which differs slightly from the approach in the OP. It's amazingly fortunate that this is an option given it looks inoperable from the MRI.
I'll also share that towards the end of our conversation he thanked me for not commenting on his appearance and that he was self-conscious. It's compelling, especially when someone looks good, to mention it, but there's no need to lead with it.
If I understand it correctly, a prolactinoma can make it harder to have children mainly because high prolactin can disrupt ovulation, but it does not automatically mean having a child is impossible. In many cases, treatment brings prolactin back to normal and fertility can return. And if carrying a pregnancy is not possible for medical reasons, there can still be options like IVF, and having someone else carry the pregnancy where it is legal and appropriate. So it may be more complicated and it can be very hard in some cases, but it is not an absolute dead end. A hopeless tone is not very useful here because it can discourage people from exploring realistic options and evidence based treatment paths.
If we had a machine today with unlimited intelligence could it figure out a cure for cancer with our currently available data, or would it just request more data and ask us to conduct more studies? Is the bottleneck our ability to recognize patterns in the current data (i.e. intelligence) or the lack of sufficient data to determine a pattern? Or is it some other more nebulous thing that we aren’t considering?
IIRC this question is complicated by the fact that there are many types of cancer. There are probably some in either category.
I’m personally convinced that at least for physics we have sufficient data for the next big theoretical breakthrough and we lack only the imagination and the computer power required to numerically validate the maths through simulations.
It feels an awful lot like the decade before Einstein’s landmark papers on quantum mechanics and relativity.
Watch how people like Terrence Tao et al are transforming how mathematics is done: with AI assistance and the Lean theorem prover, at a level of collaboration and consistency never before possible.
Something similar is just around the corner for the other sciences, the ability to mechanise the integration of vast tracts of previously disconnected facts and insights.
Surely something of value will pop out of the result…
Physics research is not particularly in a state of stagnation, so I’m not really sure what you mean by the “next big theoretical breakthrough”.
I firmly disagree:
No new successful fundamental theory has even gotten off the ground since the Standard Model, which is half a century old at this point.
Our understanding of gravity hasn’t improved substantially in a century. String Theory is dead, stop whipping it. Other quantum gravity theories each have one proponent going in circles futilely looking for a big breakthrough that never comes.
Superconductivity was discovered 115 years ago and we still don’t understand it! We’re “finding” new HT materials by accident and then attempting to explain how they work. Nobody can figure out how to predict a new one, ab initio.
Our understanding of the universe is improving only in the sense that we’re now more certain that we don’t know much at all about: its early history, far future, present behavior of gravity, or its content.
I’m not aware of any “sea change” akin to the scale and scope of QM or GR in many decades despite clear need for one.
Physics has stagnated for a long time now.
My conspiracy theory is that there has been a brain drain into the finance industry, but that doesn’t explain everything.
> No new successful fundamental theory has even gotten off the ground since the Standard Model, which is half a century old at this point.
How long has scientific inquiry about physics been going on? In that frame, is 50 years a long time or a short time?
This feels a bit like the perspective of a non-specialist with access to the findings that end up in the popular press vs. things that are discussed at conferences/in journals.
That long duration stress from caring for a loved one with a potentially fatal illness is difficult to describe. I remember sharing that same driving thought of “if this goes south, will I honestly be able to say I did everything I could?”
How are you doing now? How long ago was it?
If the author reads this: I’m sorry that you and your girlfriend are going through this.
I would strongly suggest seeing a therapist. I’ve experienced traumatising moments in life, and therapy has been a great help.
Thank you for sharing the story. I appreciate your taking the time to write out all of these things despite having to also do the work to combat the condition.
About the kids thing: Genetic causes for these are super hard to isolate but if, perchance, science sees fit to give us the information then you do have embryo selection available to make this choice safely.
Rooting for the two of you. And just wanted to thank you for the story. The sum of anecdotes often is the source for good hypotheses for science. I think you’re doing a good thing sharing what you’re doing.
My girlfriend also has this and I just found out my coworker has been dealing with it for some time. Has me wondering just how common it is
Prolactinomas, especially tiny ones, are super common. They often find them during autopsies. Most people with them experience no symptoms.
Are these deadly?
Not intrinsically or commonly deadly. https://www.hopkinsmedicine.org/health/conditions-and-diseas... says "1 in 10 people will develop a pituitary adenoma in their lifetime" - pituitary adenomas is the more general class of these benign tumors, as the pituitary gland produces multiple hormones.
1 in 10 sounds really common though, that's shocking.
People will go to the ends of the earth and back for someone they truly love. (Some people will even do it for hate, too!)
Good luck and godspeed my friend
Don’t do this. Enjoy the time that you have together. Work with your doctors.
I'm confused by this post because it seems like his partner got best therapy possible with two surgeries followed by medications without going blind or having other major hormonal issues which can happen after surgery. As correctly stated in this thread prolactinomas aren't a death sentence or even (technically) a brain tumour, and the major risks have been avoided so far. What exactly is being accomplished by a VC deeply researching this case beyond satisfying the valid desire to help your life partner?
best wishes..
some people do manage to cure their own disease sometimes.
This sounds a lot like "Lorenzo's Oil" https://en.wikipedia.org/wiki/Lorenzo%27s_Oil
Hopefully with a better end.
What an incredible story! Thank you for sharing. So much for that New Yorker cartoon “Honey, come quick, I found something all the scientists missed” (well, something all the scientists thought was infeasible anyway).
This is officially the most unhinged LinkedIn post in the world. This is the winner.