marckemil

Canadian physician here: yeah, this is hell for us trying to reach patients through the hospital system, which is "unknown" by default. Straight to voicemail and you can't really leave a message. Totally agree though, this problem is very time consuming, if only for the time it takes me to look at my phone and decide not to answer the call - a few seconds of my life each time. My worst day was a few days ago; 7 calls.

I'm a radiation oncologist specializing in lung cancer. Here's my take:

Immunotherapy is really revolutionizing the treatment of locally advanced and metastatic lung cancer. However, a "revolution" in our world is improving 5-year survival by 10-15% in absolute value. It's not outstanding, but when your baseline is around 10%, improving it by 10% means doubling it. That's why immunotherapy is being adopted so quickly despite its price.

A poster mentioned $100 000 is not a lot if it adds 10 years. It's not as simple. Right now we don't really know if we can stop the treatment. So people often receive the treatment until they progress. If it's 4 years, we're looking at $400k... The cost on society in general will have to be dealt with (and debated) at some point. I doubt insurance companies will continue paying for those treatments "forever", especially considering how prevalent lung cancer is.

Immunotherapy benefits from a great "romantic" story, which helps with its marketing like no other drug. It's your own immune system, your army, waking up and attacking the greatest villain of all; cancer. The alternative, chemotherapy, is often seen as poison. Granted, it has fewer side effects, but it has some, and they can be nasty. Basically, the immune system is in a constant state of equilibrium. You stimulate it too much and it starts attacking your own body. We're seeing some cases of thyroid problems, lung inflammation (pneumonitis), skin problems... Generally speaking though, it's better than most chemos.

Overall, it’s a great treatment but obviously not perfect, crazy expensive to a point that it’s likely not sustainable in the long run. Despite all of the drawbacks, it’s a really exciting time for oncologists as we can finally offer more hope to our lung cancer patients.

As an academic physician myself, I've been thinking about this for some time. There are many parts to this answer.

First, what makes a good physician? It's not all about being able to diagnose diseases, because let's face it, 95% of our practice is essentially "bread and butter". What you may think is difficult is what we do all day. A good physician is a good medical expert, but also a good communicator, collaborator, leader, health advocate, scholar and is professional (see CanMEDS framework). All this combined is a "good" physician.

Now, as others have pointed, seeing a subspecialist is better in some cases. Again, most issues can be dealt with by an "average" physician without problem.

For surgeons, there's a link between how frequent a procedure is performed and outcomes. If you need something "special", see a surgeon that does that procedure often. It doesn't guarantee a good outcome (one can do a crappy job often!) but there's a correlation.

For the complication risk, this can be a double edge sword. Highly skilled surgeons are often referred complicated cases at high risk of complication, so their numbers aren't good. The others get the "easy" cases so their numbers look better...

From my experience as a trainee, research "status" ie number of publications, talks, books chapters... don't correlate well with quality of care. They can be good at writing grants and papers, but when it comes to getting things done in the clinic, it's a different story.

As for physician review site - Yelp; well, that will give you mostly information of the physician's communication skills, which is a big part of our job, but probably not what you have in mind when trying to find "the best".

I'm a radiation oncologist specializing mostly in lung cancer and brain radiosurgery. Even I have a hard time judging the quality of the radiation therapy treatments decisions and parameters of my own colleagues (treating other sites). I can't imagine trying to find a "best" physician for a specific problem without my network and my background.

Thinking about it, I would follow your PCP's advice; who he-she knows, classmates... We know who the "good & smart guys" are. As I said above, it doesn't guarantee quality care, but it's a good start. If it's a really important problem, seeking a second opinion is usually the way to go. I would go to a tertiary care centre (university hospital) with a good reputation.

Thanks; I'm in a similar situation myself. I'll look into those references.

Never heard of it before. That group seems to have published a phase II trial so I would assume they'd be looking at a phase III.

I always look at "promising results" with skepticism, especially when the authors have a direct financial interest in the project.

To keep in mind: complete remissions and partial remissions are good, but they're "softer" outcomes. What we want to see is an impact on "harder" outcomes, mainly overall survival. Cause-specific survival is another good one.

We like to associate tumor shrinkage with better survival but it's not that simple (unfortunately). Do we kill people with our treatment? It shrinks the tumors, but for how long? Is the treatment convenient? How did they define "partial response"? What tool did they use? -- the list goes on.

Cancer research is not an easy field and many are better than me in that regard. But food for thoughts:

A screening test with 30% false positive is not a great test. One in three test takers would be positive, requiring more investigations (likely many more). Let's say 1000 asymptomatic person take the test, 300 will test positive. Physicians then have to investigate thoroughly those patients. $$$ for those tests, hours of work missed, and very importantly patient anxiety and potential harm (a prostate biopsy, for example, is not trivial and people can die from that)

of those 1000 people screened, 1 has the disease. With a 0% false negative rate, we catch it. Because of the test, it was caught early. Have we really changed his outcomes? would he have discovered it by himself a few weeks later, not impacting any of his treatments? The convention of "catching cancer early will make it easier to cure" is not always true.

In the meantime, we've had to put 300 people through useless agressive investigations...

Moreover, 0% false negative would be revolutionary. -- 0% and 100% are extremely rare in medicine.

Anyhow, screening, especially its drawbacks is one of the most complex concept to explain.

For genotyping and targeted treatments: it's been tried but we're still not there yet. The papers coming out are disappointing in that regard.

As was pointed out before, those are unpublished results. We cannot extract any significant information from this article. For example, in many early phase trials, the standard treatment is often given WITH the new drug (or vaccine), so we'd have to know the response rate of the control group.

As other pointed out, blood cancers are very different than solid tumors -- they've historically been easier to treat. That's probably due to the tumor micro environnement that makes solid tumor a very different process. To put simply, I would not assume for a second that outcomes for blood cancers can be replicated for solid tumors.

Immunotherapy is all the rage in the cancer world right now. It resonates with patient that "their own bodies can destroy cancer". It's almost romantic. Kinda like when anti-angiogenesis drugs were all the rage a few years ago...

The "cancer vaccine" has been tried many times before. Pretty much every time the cancer finds a way around it. Sipuleucel-T is a commercially available cancer vaccine for prostate cancer. It adds a few months for $$$, but newer, non-vaccine treatments are now doing better.

We're unlikely to find "a" cure for cancer; we'll eventually find "cures" for cancer, but it will be small, incremental steps. In the meantime I'll go back to my clinic and continue to enrol patients on clinical trials

There are many. Personally I will read the NCCN recommendations and discussion section. They're updated frequently. UpToDate is another website I like. I subscribe to Medscape oncology for cancer related news. Meetings are also a good way to stay up to date with what's new. Read by QxMD is an app I use to keep up with what's being published in my field.

I'm a radiation oncologist. I strongly advise you ask your questions to an oncologist. The amount of information available is simply crazy and "normal people" can rarely appreciate the subtleties of a disease and its treatments. Unfortunately, 10 years of training is impossible to squeeze in a few hours of reading.

That being said, Grade IV gliomas are usually being treated with a combination of surgery, radiation and chemotherapy (usually temozolomide). Surgery is either a biopsy or a resection. Glioblastomas have multiple "roots" making them very difficult to remove. Even after surgery they almost always recur. Sometimes they're located in regions of the brain where the risk of surgery outweighs any benefit (for example, the patient would be left unable to talk after the surgery); then we do a biopsy and go on to the next "step", which is radiation.

Radiation therapy is given daily over a few weeks. Based on a few factors such as age and general condition, the radiation oncologist will determine the dose and number of treatments (fractions) he recommends. Between 15 and 30 treatments is usual in patients that are in reasonable shape.

Again, based on general condition and a few other factors, someone (a neurosurgeon, medical or radiation oncologist) will prescribe temozolomide. It's usually given during or after radiation. That medication really improved outcomes and is now considered standard of care in people that can tolerate it.

Despite our best efforts, the disease usually comes back. At that point options can be limited. Some people will try clinical trials, but before you start travelling with a loved one across the country, keep in mind a few important things: this is a deadly disease so quality of life becomes very important. Spending hours in hospitals trying out toxic treatments has an important impact on that. Moreover, I haven't seen any breathtaking preliminary clinical trial results on GBM lately (that includes virus, weed and the likes). Participating in trials should be seen as a way to contribute to cancer research; I wouldn't go into it expecting to find a cure.

If you really want to have access to the information physicians use, you should check out the NCCN guidelines on Central Nervous System Cancers. It's NOT written for the general population and I would not advise you to even look it up. It can be really confusing and bring in more stress than it's worth. As I said on top here, better talk to a physician.

I hope this helps.

And a "pause" button, so it would stop yelling at you when you stop to get something to eat - gas - bathroom.

agree with spartango. Cancer is extremely complex and any simplistic approach is BS (or a money grab). Staying away from the internet and asking questions directly to the oncologist is usually the best thing to do.

Radiation oncologist here. It's impossible for me to say much, but his drop in estimated survival rate is probably not strictly related to his tumor being infected. However, he probably has some sort of genetic predisposition to have cancer at such a young age, which can also have an impact on survival. That being said, a few things to keep in mind: survival estimates are notoriously bad. Moreover, oncologists tend to do a poor job of communicating those estimates. 35% chances of being alive in 2 years? in 5 years? alive but living with "active" cancer? Very important points.

A reasonable thing to do would be to ask his oncologist "if there are any other options he could think of". It's simple, but usually it forces us to reconsider the problem from scratch. I must warn you though that in a 19 y.o., we (oncologists) usually think very hard and rarely leave any stone unturned.

From experience, the best a friend can do is simply be there and "act normal" ie don't overdo it. No need to do anything special.

Good luck -- sometimes luck is all it takes