You can't always get what you want.

[stuckathuntermtn]

Are you sure she had cancer? There are number of conditions where resection/excision of the lung would be considered appropriate.

It was a toomah. I know that for sure.
Malignancy is not something I recall.

My dad had a chunk of colon removed. Cancerous, but didn't need chemo. It does happen, folks.

[old goat]

I hope none of you fucks ever get cancer--even Benny--but if you do and the doc says chemo, ask her what it's going to do for you, with numbers. Sometimes it does a lot of good (I was skeptical about Jimmy Carter but it seems to have done him a lot of good--guess I haven't been keeping up since the only place I doctor any more is here), sometimes it's because the doc doesn't want to tell you you're going to die and there's nothing that's going to stop it. It's a lot easier to say we can do chemo, even if it does no good.

Has anybody actually proven that Keith Richards is still alive? I mean Otzi looks better. Maybe it's CGI.

[jono]

With chemo, old data is frequently irrelevant data. OG's comment is a mild example, but Benny's 30 year old sample of one is the most common and dangerous. That's the tl;dr...read on only if you need proof.

I was diagnosed with stomach cancer last fall. 19% survival in the US (historically, as of December). The first MedOnc I saw shrank in his seat and described how toxic and ineffective the drugs were for stomach cancer, told me what sort of extreme options I had and advised my wife and I to consider our family's finances before going too crazy. Never suggested any plan. Luckily, he also made it clear that he had little (no) experience in stomach cancer with patients in their 40's and sent me on to see the experts in Seattle. In the meantime I met with a surgeon who was more upbeat, as well as more experienced and educated.

The UW physicians painted an even more dire picture, though, telling me they could treat it but could not cure it and assigned me a stage 4 (4% survival at 5 years according to historical data [as of December], some of which may actually be as old as Benny). They did advise me to get a PET scan--a fact which made it clear they didn't yet have enough information, despite their willingness to offer conclusions.

Happily, I found a more determined doc in Spokane whose personal vendetta came from losing his mom to stomach cancer at my age, not Porsche payments. He never offered me any rosy promises, but he laid out a plan and told me if the PET was clean and stayed that way we would call the surgeon and "cut the crap out." 6 rounds of chemo later that's exactly what happened. With that seventh round of the fight over the surgeon brought the news that I had had a "pathologically complete response." No sign of disease in the stomach tissue they took (which was probably 80%) or in 36 lymph nodes. Bringing this back to the present discussion, he also said "we see this in about 25-30% of cases." And went on to say that the numbers as published by the ACS really don't reflect the present treatments and will need to be updated soon.

Obviously I am a sample of 1 and my survival is not yet completely certain despite the huge uptick in my prospects. But I think it's worth noting that both my treatment regimen and in particular the version of one of the drugs used are new enough that they haven't had an impact on the heavily history-biased stats that are out there.

I think we're doing a lot better than most people realize. Not sure how I feel about Ronnie's decision, though.

[Mazderati]

Awesome.

[jono]

Thanks, I'm certainly hoping so!

Sorry for the length/thread jack. I get a little sensitive to old info masquerading as permanent knowledge a la Benny there.

[John_B]

Thanks for the info. I'm glad to hear things are doing well.

Sent from my SM-G900V using Tapatalk

[iceman]

Wow, jono. Glad things are on the upswing.

Red Sox broadcaster and former Red Sox second baseman Jerry Remy has undergone 4 lung cancer surgeries since 2008, it keeps recurring and then they cut it out. His most recent surgery was in mid-June and he was saying he'd be back in the booth right after the all-star break and that hasn't happned so I'm not sure how he's doing this time. But it has been an example of long-term survival with good quality of life so far at least.

[jono]

Hopefully he's just accepted some follow-up. Lung cancer is particularly interesting in terms of current discoveries. It's the best example for how genetic testing of the cancer tissue itself can offer different options for treatment. Wide variety but they're making progress on improved outcomes by differentiating the types.

[Benny Profane]

I hope none of you fucks ever get cancer--even Benny--but if you do and the doc says chemo, ask her what it's going to do for you, with numbers. Sometimes it does a lot of good (I was skeptical about Jimmy Carter but it seems to have done him a lot of good--guess I haven't been keeping up since the only place I doctor any more is here), sometimes it's because the doc doesn't want to tell you you're going to die and there's nothing that's going to stop it. It's a lot easier to say we can do chemo, even if it does no good.

Has anybody actually proven that Keith Richards is still alive? I mean Otzi looks better. Maybe it's CGI.

I saw him a few months ago in a local bistro he owns. He got up and walked without assistance, but his skin is a bit grey.

Sent from my SM-G900V using TGR Forums mobile app

[sb]

FKNA Jono!

[old goat]

With chemo, old data is frequently irrelevant data. OG's comment is a mild example, but Benny's 30 year old sample of one is the most common and dangerous. That's the tl;dr...read on only if you need proof.

I was diagnosed with stomach cancer last fall. 19% survival in the US (historically, as of December). The first MedOnc I saw shrank in his seat and described how toxic and ineffective the drugs were for stomach cancer, told me what sort of extreme options I had and advised my wife and I to consider our family's finances before going too crazy. Never suggested any plan. Luckily, he also made it clear that he had little (no) experience in stomach cancer with patients in their 40's and sent me on to see the experts in Seattle. In the meantime I met with a surgeon who was more upbeat, as well as more experienced and educated.

The UW physicians painted an even more dire picture, though, telling me they could treat it but could not cure it and assigned me a stage 4 (4% survival at 5 years according to historical data [as of December], some of which may actually be as old as Benny). They did advise me to get a PET scan--a fact which made it clear they didn't yet have enough information, despite their willingness to offer conclusions.

Happily, I found a more determined doc in Spokane whose personal vendetta came from losing his mom to stomach cancer at my age, not Porsche payments. He never offered me any rosy promises, but he laid out a plan and told me if the PET was clean and stayed that way we would call the surgeon and "cut the crap out." 6 rounds of chemo later that's exactly what happened. With that seventh round of the fight over the surgeon brought the news that I had had a "pathologically complete response." No sign of disease in the stomach tissue they took (which was probably 80%) or in 36 lymph nodes. Bringing this back to the present discussion, he also said "we see this in about 25-30% of cases." And went on to say that the numbers as published by the ACS really don't reflect the present treatments and will need to be updated soon.

Obviously I am a sample of 1 and my survival is not yet completely certain despite the huge uptick in my prospects. But I think it's worth noting that both my treatment regimen and in particular the version of one of the drugs used are new enough that they haven't had an impact on the heavily history-biased stats that are out there.

I think we're doing a lot better than most people realize. Not sure how I feel about Ronnie's decision, though.

Which brings up the flip side of my advice. Obviously you want to see someone who is up to date on the kind of cancer you have and has all the information. in your case it sounds like there was a regimen that had been reported that the other doctors didn't know about. And the negative PET scan meant no or only microscopic spread to lymph nodes, which is unusual in stomach cancer (depending on what kind of cancer you had). Finally, if one is told there is nothing to be done, it is always reasonable to ask if there is a clinical trial available, and of course ask for a second opinion. It's also reasonable to do your own research--use pubmed--the searchable National Library of Medicine database. I just did a quick search and found some reports of good results in your situation with neoadjuvant chemotherapy (chemotherapy given before surgery, rather than after.)

The new immunotherapies are starting to show promising outcomes in cancers that have in cancers that have been considered hopeless for many decades. (Now we have to figure out how to pay for them.)

My point is not that chemo is bad or that chemo is good. It depends. A lot.

Glad to hear you're doing well.

[jono]

Which brings up the flip side of my advice. Obviously you want to see someone who is up to date on the kind of cancer you have and has all the information. in your case it sounds like there was a regimen that had been reported that the other doctors didn't know about. And the negative PET scan meant no or only microscopic spread to lymph nodes, which is unusual in stomach cancer (depending on what kind of cancer you had). Finally, if one is told there is nothing to be done, it is always reasonable to ask if there is a clinical trial available, and of course ask for a second opinion. It's also reasonable to do your own research--use pubmed--the searchable National Library of Medicine database. I just did a quick search and found some reports of good results in your situation with neoadjuvant chemotherapy (chemotherapy given before surgery, rather than after.)

The new immunotherapies are starting to show promising outcomes in cancers that have in cancers that have been considered hopeless for many decades. (Now we have to figure out how to pay for them.)

My point is not that chemo is bad or that chemo is good. It depends. A lot.

Glad to hear you're doing well.

I hope you didn't take my mention of your comment on keeping up as any sort of ad hom. Quite the opposite, I think the fact that you would say that so quickly just illustrates how fast things are moving.

I'll second everything else you said and add that reading was huge for me. I found things my docs knew and things they didn't on the NIH website (and Pubmed, but the searches on NIH seemed more productive for me). I'd almost claim that cancer can take up more of your time than TGR but I know no one would believe that.

I added more approaches on top of the chemo as a result of what I found, too, and while one doc compared diet to bringing a knife to an RPG fight I'm not convinced they didn't help. No one knows how much margin we had and a knife is better than nothing. (And it wasn't only diet that I found, either--hyperthermia, for instance, seemed to be supported and probably feasible just by taking on a flaggon or two of 135 deg water every day...I mean, it went straight to the tumor after all, right?)

Just checked my notes and found that the docs in Seattle were recommending about the same drugs, they just didn't have the same expectations. Their numbers were much less encouraging and they seemed totally unaware of the possibility of a complete response--or else they wanted me unaware of it. I think they were looking at a different trial of the same(ish) cocktail.

The "ish" comes from the fact that one drug, xeloda, seems to be often regarded as a simple substitute for another, 5-FU. My reading found reasons to believe it is likely better and not simply more convenient (it's an oral instead of a five day infusion). The data supporting that is early, though, and neither insurance nor all the docs seemed to buy in yet as of December.

BTW, yes, neoadjuvant chemo is very much becoming the standard for stomach cancers now, seemingly with the exception of signet ring/hereditary diffuse. Or perhaps some very early detection, but that's rare in the US where we don't screen for it (and seemingly ignore all symptoms).

[Danno]

FKNA, jono! Keep kicking its ass.

[frorider]

Jono--now that's a cool story bro.

[stuckathuntermtn]

I hope none of you fucks ever get cancer--even Benny--but if you do and the doc says chemo, ask her what it's going to do for you, with numbers. Sometimes it does a lot of good (I was skeptical about Jimmy Carter but it seems to have done him a lot of good--guess I haven't been keeping up since the only place I doctor any more is here), sometimes it's because the doc doesn't want to tell you you're going to die and there's nothing that's going to stop it. It's a lot easier to say we can do chemo, even if it does no good.

Has anybody actually proven that Keith Richards is still alive? I mean Otzi looks better. Maybe it's CGI.

A CGI Keef would play guitar like wasn't old and deaf :'(

[old goat]

I hope you didn't take my mention of your comment on keeping up as any sort of ad hom. Quite the opposite, I think the fact that you would say that so quickly just illustrates how fast things are moving.


Just checked my notes and found that the docs in Seattle were recommending about the same drugs, they just didn't have the same expectations. Their numbers were much less encouraging and they seemed totally unaware of the possibility of a complete response--or else they wanted me unaware of it. I think they were looking at a different trial of the same(ish) cocktail.

I didn't take it that way at all. I agreed 100% with what you were saying. I was originally emphasizing the problem of docs recommending/patients requesting chemo and radiation with little hope of benefit. You raised the equally significant problem of docs not offering or being aware of treatments that can help. All of which brings up the biggest problem any patient with any kind of illness or injury faces--finding the right doctor. And as best as I can tell it's more a matter of luck than anything else. The big name isn't always the best.

My cousin, in his 40's, had a GIST tumor of the stomach--very different from the usual stomach CA. He went to University of Chicago, University of Michigan, and the Mayo Clinic for opinions but couldn't decide what to do. Then he started bleeding massively from his stomach and wound up in the ER of a private hospital and wound up having emergency surgery by an excellent, fellowship-trained surgical oncologist--no big name, but just as good or better than any of the other docs he saw.

(An old partner of mine specialized in surgery of the thyroid and parathyroid glands. He had a huge number of cases with spectacularly good results in terms of lack of complications--comparable or better than the best results in the literature. No one has ever heard of the guy outside of Kaiser docs in Sacramento. Another friend of mine was a missionary surgeon in Congo--he had by far the world's greatest experience repairing recto-vaginal injuries (primarily caused by bayonets rather than by childbirth) but he never wrote up his experience and no one knows about him.)

Your experience with U of W compared with the doc in Spokane (there's reputation for you) brings to mind a patient I saw for esophageal cancer. He wanted to know his chances with surgery. Based on his stage and the available adjuvant treatment at the time I gave him a number. He saw another surgeon who recommended the same operation but who gave him a grossly overestimated chance of prolonged survival. He chose the other surgeon because he claimed a better prognosis--for the same treatment. (I'm not equating his case to yours; I was just reminded of that case.) I'm glad you wound up in the right hands.

Sorry for all the long-winded posts. I guess I still miss surgery.

[jono]

You raise a great point. Picking a doctor is a somewhat less broad version of deciding whether or not to head off to a "healer:" if you're going to choose based on who gives the best promises you're going to wind up with the best liar.

I kind of went full on machine-mode to avoid that (both in docs and other research) but I can't imagine most people would. At the time it seemed normal. I just accepted the possibility of the worst outcome without accepting its certainty and figured I'd "cope" later--or not. The willingness of my ultimate doc to focus on a plan that ended with "then we're gonna call Ryan and he's gonna cut the crap out" (even if that plan might be derailed by some possibility or other) matched my own outlook. And, importantly, I thought, gave me an advocate with the surgeon, who I had already met with by then. The other guys seemed like they'd be a PITA when we got around to surgery.

My surgeon matches well with the examples you gave--multiple fellowships, first in Washington to do a certain hyperthermic chemo during surgery, and the guys at UW knew more about him than the other way around, but who would expect that to be the case?

Meanwhile I believe the guys at UW failed to follow the staging guidelines by defining an abdominal lymph node as "distant" in order to arrive at stage 4. But if your ad line is "Better Outcomes" it's always easier to ensure that "better" is compared to the worst case scenario. That's something I did not expect: that there is a roundabout sort of incentive to make all your patients appear even sicker than they are in order to boost your stats.

[jono]

Another sorry for the long posts, but thanks for all the kind words everyone! The support of friends and strangers through this whole thing has been amazing and more helpful than I could have guessed.

[old goat]

There just isn't a lot of data out there on how good a doc is, except for surgeons doing repetitive operations, and even then the data may reflect case selection rather than skill. A surgeon with bad numbers might be the guy willing to accept difficult cases, the guy who takes cases that shouldn't be operated on, or just bad. How can anyone know? Docs don't know who the good docs are.

[Art Shirk]

We've got a surgeon and a cancer warrior in this thread but I'm putting my money squarely on Benny's insights.

[frorider]

Hey Benny had coffee once near a surgery so he's almost a surgeon when you think about it.

[Art Shirk]

[jono]

There just isn't a lot of data out there on how good a doc is, except for surgeons doing repetitive operations, and even then the data may reflect case selection rather than skill. A surgeon with bad numbers might be the guy willing to accept difficult cases, the guy who takes cases that shouldn't be operated on, or just bad. How can anyone know? Docs don't know who the good docs are.

I'm not sure if I'm glad or sad about this, but it's different for cancer care centers. I'll provide an example. Note that the results are tracked/compared by stage and that the folks at Seattle Cancer Care Alliance (whose website contains the following quote) a) relied on a CT scan (not a cancer-detecting PET, which subsequently became very difficult to acquire from insurance thanks to their "certainty") to b) over-stage my case by stepping outside the staging guidelines and c) told me at the time that "there is no re-staging." So if I'd been their patient they would have kept me in the stage 4 column for the NCDB even if the diagnosis became questionable later.

From SCCA's website:

"If you or a family member has been diagnosed with cancer, you have choices to make about where to receive care. Comparing survival rates among cancer centers is one way to help evaluate your options.

The charts in the sections below show the survival rates for patients treated by Seattle Cancer Care Alliance (SCCA), according to the National Cancer Data Base (NCDB) Survival Reports. The NCDB reports also compare SCCA patient survival rates to survival rates for patients treated at other academic medical centers, large community hospitals, and small community hospitals. The data shows that, in general, SCCA patients have better outcomes than patients treated elsewhere. Patient survival rates are categorized by stage of diagnosis for each of the following types of cancer:..."

Their TV ads featuring the line "Better Outcomes" are more irritating than neuropathic toes. If there was a way to know whether a doctor was going to pull that shit ahead of time it would be worth knowing. Even so, I don't believe anyone I met there acted from a purely cynical place. They were trying to do right by their patients but I'm not sure they had any aversion to pumping their numbers along the way.

[Tri-Ungulate]

1) Too little info on Ron Wood's lung cancer to determine whether his "decision" was reasonable or perhaps foolhardy. But in the end, he's an adult, and if his senescent long-marinated brain can reasonably weigh the pros and cons, and if his med and surgical oncologists have explained them well enough, then good for him regardless of the outcome.

2) jono, not sure if I'm reading this correctly, but you seem to have a bit of a chip on your shoulder about SCCA having "unfairly" upstaged you, therefore deciding you weren't a surgical candidate..? Is that a correct assumption?

Again, not enough info to say if the decision is sound one way or another, but to infer that they are doing so simply to "pump their numbers" seems, um, a little much. Yes, I understand it is your life at stake, and you are perhaps peeved for that reason, but discounting their assessment based on that assumption is remarkably cynical. Although I wouldn't put it past them (or anyone) entirely, I don't think that is the general modus operandi for most academic cancer centers.

[old goat]

1) Too little info on Ron Wood's lung cancer to determine whether his "decision" was reasonable or perhaps foolhardy. But in the end, he's an adult, and if his senescent long-marinated brain can reasonably weigh the pros and cons, and if his med and surgical oncologists have explained them well enough, then good for him regardless of the outcome.

2) jono, not sure if I'm reading this correctly, but you seem to have a bit of a chip on your shoulder about SCCA having "unfairly" upstaged you, therefore deciding you weren't a surgical candidate..? Is that a correct assumption?

Again, not enough info to say if the decision is sound one way or another, but to infer that they are doing so simply to "pump their numbers" seems, um, a little much. Yes, I understand it is your life at stake, and you are perhaps peeved for that reason, but discounting their assessment based on that assumption is remarkably cynical. Although I wouldn't put it past them (or anyone) entirely, I don't think that is the general modus operandi for most academic cancer centers.

Upstaging cancer in order to improve stage by stage survival is a fact of life. Sometimes it's deliberate to improve statistics. This is not cynicism; it's reality. Whether it was the case in Jono's case we don't have enough info to know. Sometimes it's an artifact of the kind of treatment a patient gets--the more tests a patient gets prior to treatment the more likely it is that metastatic cancer will be detected and the cancer is upstaged. As outcome data becomes more and more available to the general public and as reimbursement is increasingly tied to such data the problem will get increasingly worse. As I said before--measuring the quality of medical care, except when there is frank malpractice, is extremely difficult.