r/Oncology

Hi everyone,

I'm a 30-year-old man from Tamil Nadu and I'm trying to understand how commonly bladder cancer occurs in men around my age in India.

I've had intermittent microscopic hematuria for around 2 years. I'm a non-smoker, my CT KUB was normal, urine cytology was negative, and I don't have protein in my urine. My urologist has recommended a cystoscopy.

I'm not looking for a diagnosis. I'd simply like to hear from anyone who:

- Was diagnosed with bladder cancer in their 20s or early 30s, particularly in Tamil Nadu/India; or

- Knows someone who was diagnosed at that age and is comfortable sharing their experience.

- Has access to Indian data on bladder cancer in younger men.

If you were diagnosed around this age, I'd especially appreciate knowing whether there were any known risk factors such as smoking/tobacco, occupational chemical exposure, family history, etc.

Please feel free to comment or DM me if you're comfortable sharing. I'm mainly trying to understand how rare it is and what the circumstances were in people diagnosed at a young age.

Thank you.

Used by many onco/doctor to guess survival, it doesn’t take into account tumor progression, location or dormance for exemple. My wife is ECOG 3 in at home hospice which gives a theorical 3 months to live according to ECOG. But I’m second guessing it, really. Anyone?

Hi everyone,

My dad (53) has Rai stage III CLL and has been on acalabrutinib 100 mg for ~1.5 months. His oncologist says his CLL response is good.

The main issue is a persistent, fairly intense headache that has been present almost daily since starting the medication. His oncologist knows about it and suggested a painkiller SOS.

One thing we noticed: he missed acalabrutinib for one day, and he says the headache wasn't there that day. It returned after restarting, although we're obviously not sure if that's connected.

His BP has generally been normal (around 120–130/80), sometimes lower than his usual, and he feels the headache may be worse when his BP is lower or when he has indigestion.

For anyone who has taken acalabrutinib:

• Did you have persistent headaches for the first 1–2 months?
• Did they eventually improve?
• Did yours seem related to taking the medication?

Not looking for a diagnosis—just trying to understand whether this kind of persistent headache is something others experienced. Thanks ❤️

Hello everyone,

I’m writing this with a lot of hope, desperation and determination on behalf of my sister.

She has been diagnosed with Glioblastoma with mesenchymal metaplasia (Gliosarcoma), CNS WHO Grade 4. She underwent surgery/biopsy and is currently undergoing the standard 6-week course of radiotherapy, 5 days a week, along with Axittem (temozolomide).

We understand how serious this diagnosis is. At the same time, we are not willing to simply accept that there are no options beyond the standard treatment.

We are actively researching clinical trials, immunotherapy, vaccines, CAR-T/T-cell therapies, targeted treatments, molecularly guided treatments and other promising approaches that could potentially be considered after or alongside standard therapy.

Her biopsy sample has also been sent for NGS/molecular profiling, because we want to understand whether there are any actionable mutations or biomarkers that could open additional treatment possibilities.

We are particularly looking for people who have been through something similar.

We would be incredibly grateful for your experiences:

* Has anyone here been diagnosed with GBM/gliosarcoma and remained stable or recovered significantly?

* What treatments did you receive after radiation and temozolomide?

* Did anyone pursue immunotherapy, cancer vaccines, CAR-T/T-cell therapy or a clinical trial?

* Has anyone accessed treatment in the US, Europe, China, India or elsewhere that made a meaningful difference?

* Did molecular/NGS testing actually lead to a different treatment?

* Are there particular GBM specialists, hospitals or clinical trials that you believe we should contact?

* If you or someone you know has had a similar diagnosis and is doing well today, we would genuinely love to hear your story and, if comfortable, connect privately.

We are not looking for false hope or miracle cures. We understand that GBM is extremely difficult to treat.

What we are looking for is information, experience and possibilities.

There are so many treatments being investigated, and sometimes finding the right trial or specialist depends on knowing where to look and who to contact.

If you have been through this journey, please tell us what you wish you had known at the beginning.

If there is something you would do differently, a doctor you would contact, a trial you would investigate, or a treatment you believe was worth pursuing, please share it.

We are prepared to travel anywhere and explore every scientifically credible option available to her.

Thank you to everyone who takes the time to read this and share their experience. Even one useful lead could make an enormous difference to our family.

I support a family member (adult) who has multiple myeloma along with a serious mental illness (including suicidality and delusions). After years of MGUS with poor follow-up, around 18 months ago he was diagnosed MM and recommended autologous stem cell transplant vs. follow up in two months. Instead, he had worsening mental illness (not seemingly because of the diagnosis) and has been a psychiatric hospital resident for a while. He is discharging soon.
.

I have never experienced a BMT unit but I have witnessed the psychological stress many patients in protective isolation experience while working in an adult heart transplant program. My understanding is that the stem cell transplant process is very stressful for the patient and causes mental illness to flair (please correct me if I am wrong!).

Who assesses a patient for psychological fitness for oncology treatment? Heme/onc? The patient's former psychiatrist? A psychiatrist or psychotherapist who worka in oncology? Palliative?

I just want to get him connected to the stuff he needs.

I’m trying to work out whether I’m simply rediscovering an established concept under different terminology.

Several well-described observations seem to fit together:

- oncogene inhibition can cause survival and pro-death signals to decay at different rates (“oncogenic shock”);

- dynamic BH3 profiling can detect early treatment-induced changes in apoptotic priming;

- targeted therapy can rapidly induce adaptive rescue mechanisms, including pathway reactivation or new dependencies on anti-apoptotic proteins such as MCL-1 or BCL-xL.

This made me wonder whether treatment response in oncogene-addicted cancers could be viewed as a temporal competition between loss of survival signalling, apoptotic vulnerability, and adaptive rescue.

The hypothesis would be that sensitive tumours have a larger or longer transient vulnerability window after driver inhibition, while resistant tumours either fail to enter that state or escape from it more rapidly.

If so, I would expect:

1. early temporal features after driver inhibition to predict later cell death better than baseline pathway activity alone;

2. sensitive and resistant models to differ in the duration or magnitude of this transient state;

3. the optimal timing of a second intervention to depend on when adaptive rescue emerges, rather than necessarily favouring simultaneous combination treatment.

I realise that none of the individual mechanisms here are novel. What I have not been able to determine is whether they have already been explicitly integrated and tested as a general predictive framework based on temporal dynamics across oncogene-addicted cancers.

So I’d particularly appreciate input from people working in oncology/cancer biology:

Is this already a recognised framework under terminology I’m missing?

And if not:

What is the strongest biological reason to expect this model not to generalise?

I’m not an oncologist or cancer biologist, so I’m primarily looking for missing literature or a good reason to falsify the idea rather than trying to claim novelty.

I'm a high school student trying to train a model that predicts early stage ORNJ (Osteoradionecrosis of the Jaw) based on patient data. For that, I'm trying to encode a scale for a patient's T stage and N stage.

So far, it's obvious that I can put T0-4 and N0-4 on a 0-4 scale. However, to my current understanding, I'm not sure where to put TX and NX.

I know that X means the tumor/spread for T and N respectively means they cant be assessed. But what does that mean exactly in terms of size/spread? Does it mean that X is so big/spread out that it cant be measured? Or does X indicate more of like a null/missing value where it can't be measured for some other reasons. If it's the latter, what are those potential reasons?

I really appreciate your time answering a simple question like this one :)

Dr. Stone and her team at Johns Hopkins have recently released findings that most ovarian cancer actually starts in the fallopian tubes. The removal of these tubes is a very effective preventative measure for ovarian cancer.