Fuck Cancer

[jono]

This seems fairly harmless, unless it keeps someone from getting effective treatment. The same cannot be said to some of the chemotherapy people with advanced cancer sometimes get with little or no hope of benefit. Ask questions, make sure you know what the chemo will or won't do for you. Or not, if you don't want to know.

Counterpoint: I was diagnosed with stage 4 stomach cancer and told that the strongest course of treatment would only extend my life for a few years, more likely a year. If I was very lucky I'd make it to 5, slowly starving to death while they poisoned me. 5-year survival was listed at 4% at that time.

I had 6 rounds of chemo, baked the living shit out of my stomach for 4 months, changed my diet in basically every way I could find evidence to support. Then Ryan cut the crap out, along with a pile of lymph nodes, and it all showed a complete pathological response. Clean 7 year scan a couple months back.

Sometimes the worst case scenario is oversold, too.

[garyfromterrace]

Counterpoint: I was diagnosed with stage 4 stomach cancer and told that the strongest course of treatment would only extend my life for a few years, more likely a year. If I was very lucky I'd make it to 5, slowly starving to death while they poisoned me. 5-year survival was listed at 4% at that time.

I had 6 rounds of chemo, baked the living shit out of my stomach for 4 months, changed my diet in basically every way I could find evidence to support. Then Ryan cut the crap out, along with a pile of lymph nodes, and it all showed a complete pathological response. Clean 7 year scan a couple months back.

Sometimes the worst case scenario is oversold, too.

Holy shit Jono, I didn't know (or missed this, or forgot...), really glad you're still with us. Sounds pretty fucking scary mag.

[Trackhead]

Counterpoint: I was diagnosed with stage 4 stomach cancer and told that the strongest course of treatment would only extend my life for a few years, more likely a year. If I was very lucky I'd make it to 5, slowly starving to death while they poisoned me. 5-year survival was listed at 4% at that time.

I had 6 rounds of chemo, baked the living shit out of my stomach for 4 months, changed my diet in basically every way I could find evidence to support. Then Ryan cut the crap out, along with a pile of lymph nodes, and it all showed a complete pathological response. Clean 7 year scan a couple months back.

Sometimes the worst case scenario is oversold, too.

Damn….amazing! Yup, health care can’t predict an outcome in everyone. I bet your life perspective is different than most.

[cspringsposer]

That's awesome Mofro! Glad to hear some good news.

My wife finished chemo and immunotherapy treatment in August and had a PCR. This weekend she found another lump in the same breast. No fucking clue what it is but I am currently sitting in a coffee shop next to the imaging center in Denver while they do the MRI and biopsy and praying it is fat necrosis. She will fight and do whatever it takes to beat it again if she has to, but I can't imagine her having to go through this again.

[Trackhead]

Jono, I had just started chemo and still felt good enough to hike, me and son/wife were hiking, get to the top, and my son pulled a rock out of his pack he found on the trail but didn’t tell us (it had a single word painted on it). We took the rock home, and still have it. I imagine your experience was similar. Hope is a big deal.

[jono]

Jono, I had just started chemo and still felt good enough to hike, me and son/wife were hiking, get to the top, and my son pulled a rock out of his pack he found on the trail but didn’t tell us (it had a single word painted on it). We took the rock home, and still have it. I imagine your experience was similar. Hope is a big deal.

Oh yeah. Attitude is huge, obviously; support system. Your son has already notched one of the hardest successes in life. I'm curious how you talk about that at his age--I don't think the people that provide the motivation get nearly as much credit as they deserve. Sometimes it's really tiny things that make a huge difference, too.

I felt good enough to ski through mine, partly because I wasn't sure I'd get another chance. And partly because I just planned to stand there and coast, which inevitably turns into more. Day 5 of one cycle was a truly epic pow day, even though I only lasted 10 runs. After chemo my surgeon told me lean would make his job easier so I hit the bike pretty hard. Still wish I'd done more cardio, but no one had much advice on hard work outs. The steroids are real, though: I podiumed in my age group in an offroad Tri about a month after the feeding tube came out.

I'm sure you know the change in perspective is real. In many ways I miss living like that. It sucks to have short horizons for everything, but nothing compares to the clarity of purpose. Everything simplifies.

Re: predictions, that's stats, but I found an upside: every non-unanimous dataset has two groups within each group (i.e. those who lived and those who didn't). After you decide to move into a non-placebo group you just have to move into the survivor subgroup. Since studies are specifically designed not to find out how, you need different data. It may not work for everyone, but for a person that can lean into a little OCD, the empowerment of finding more adjuvants must have a strong placebo effect, too. Another adjuvant.

[jono]

That's awesome Mofro! Glad to hear some good news.

My wife finished chemo and immunotherapy treatment in August and had a PCR. This weekend she found another lump in the same breast. No fucking clue what it is but I am currently sitting in a coffee shop next to the imaging center in Denver while they do the MRI and biopsy and praying it is fat necrosis. She will fight and do whatever it takes to beat it again if she has to, but I can't imagine her having to go through this again.

Hoping for the best for you and your wife! That stress is the worst. Fuck cancer.

[Buster Highmen]

A year ago Sept 7 my Dad was diagnosed with metastatic Melanoma, 3 tumors in the brain and in both lungs, 6.5cm in the right lung, 13.5cm in the left one. He got sepsis and came very close to dying.

A year later after monthly antibody infusions, the tumors are completely gone from the CT scan.

Keep the hope alive.

w00000t!!

[Yonder_River]

Hell yeah, that's great to hear mofro. It's awesome we have a great cancer care network here in Western Washington and have access to the most promising techniques.

[Trackhead]

Jono,

I remember exactly where I was standing and how my son reacted when I told him (then 11 yrs old). Self mortality isn’t the fear, telling your kid you have cancer is WAY worse.

I skied during chemo, too. Always with my kid. Had a couple great pow days, too. Legs were weak and unstable but like you, live every day like it’s your last. When you have goggles/helmet on, nobody knows you don’t have hair or eyebrows from chemo.

[jono]

Jono,

I remember exactly where I was standing and how my son reacted when I told him (then 11 yrs old). Self mortality isn’t the fear, telling your kid you have cancer is WAY worse.

I skied during chemo, too. Always with my kid. Had a couple great pow days, too. Legs were weak and unstable but like you, live every day like it’s your last. When you have goggles/helmet on, nobody knows you don’t have hair or eyebrows from chemo.

Any conversation revealing that news sucks, but I can't imagine that one. I guess the tightrope at a positive milestone of sharing some congrats with him without weighing him down is probably simple as hell after that.

I was surprised skiing worked as well as it did, but now I tell people to get cancer in the fall so they can do chemo in the snow. Movember. I should move my checkups, come to think of it.

[old goat]

Counterpoint: I was diagnosed with stage 4 stomach cancer and told that the strongest course of treatment would only extend my life for a few years, more likely a year. If I was very lucky I'd make it to 5, slowly starving to death while they poisoned me. 5-year survival was listed at 4% at that time.

I had 6 rounds of chemo, baked the living shit out of my stomach for 4 months, changed my diet in basically every way I could find evidence to support. Then Ryan cut the crap out, along with a pile of lymph nodes, and it all showed a complete pathological response. Clean 7 year scan a couple months back.

Sometimes the worst case scenario is oversold, too.

You knew what the odds were and what the side effects were and made your decision. That's what I'm suggesting for people--not that they not get chem but that they understand the facts. Fantastic that you're doing so well.

(The kinds of cases I'm thinking about are ones where survival is measured in months, not years.)

[2bjenny]

My cousin’s 5 yr old son has retinoblastoma. It’s all happened so fast since the detected it. They removed his eye last month. The surgery went really well but his oncology team was not happy with what they saw at his follow up, and now he’s undergoing chemo. His other eye looks great and the socket has healed well, so he got his prosthetic this week.

[jono]

I'm really sorry to see that, Jenny. Hope he's another miracle kid, but how gut wrenching.

You knew what the odds were and what the side effects were and made your decision. That's what I'm suggesting for people--not that they not get chem but that they understand the facts. Fantastic that you're doing so well.

(The kinds of cases I'm thinking about are ones where survival is measured in months, not years.)

I think I understood what you meant and should have kept my reply more focused. My six discussions before treatment varied, some being more relevant. The conversation with 2 docs who told me I was dying (4% to get to 5 years, not long term survival) expressed an optimistic hope of a year, extending to maybe 2 with treatment, as would seem appropriate with the patients you're describing. And they really seemed to think that's who they were talking to. I think they erred on the side of low expectations (as they said) for some reason, but they were trying to be realistic, as they saw it. (I always wanted to tell them not to worry, disappointment ends with us.)

Another doc, a life long friend, got me the first appointment with my surgeon. 15 minutes after I left he called, feeling a weight of horrible responsibility, to gently but firmly suggest that I consider not doing too much.

I absolutely appreciate every one of those people. Especially the young guy who stabbed my liver 15+ times, frustrated he couldn't get an unhealthy sample. Before the 2 docs asked if I knew what stage 4 meant, they ambivalently claimed to accept his negative result. But I knew.

The point of my rambling is that in 2016/2017 all these people saw a gnarly, huge, poorly differentiated tumor, swollen lymph nodes, and 3 spots on the liver and (I think, reasonably) followed a course you would probably advise. Accepting with it the very real risk that I would hear them, opt out, and die in about a year.

I heard the term "complete pathological response" for the first time when my surgeon described my result. Then he told me that between 1/4 and 1/3 of people who go through surgery following neoadjuvant chemo have that result. First I'd heard of it.

Obviously within the field there is a strong weight of ethical responsibility to not oversell the possibilities. But if we're just talking licensed professionals, I think for every person overselling optimism there are several others cutting it close or erring on the side of low expectations.

A few years ago I lost a friend whose stage I/II breast cancer went untreated. She was a nurse. I'm not pointing fingers (at anyone else, at least). But I'm absolutely not over it. Optimism needs better press agents.

[old goat]

I'm really sorry to see that, Jenny. Hope he's another miracle kid, but how gut wrenching.



I think I understood what you meant and should have kept my reply more focused. My six discussions before treatment varied, some being more relevant. The conversation with 2 docs who told me I was dying (4% to get to 5 years, not long term survival) expressed an optimistic hope of a year, extending to maybe 2 with treatment, as would seem appropriate with the patients you're describing. And they really seemed to think that's who they were talking to. I think they erred on the side of low expectations (as they said) for some reason, but they were trying to be realistic, as they saw it. (I always wanted to tell them not to worry, disappointment ends with us.)

Another doc, a life long friend, got me the first appointment with my surgeon. 15 minutes after I left he called, feeling the weight of a horrible responsibility, and gently but firmly suggested that I consider not doing too much.

I absolutely appreciate every one of those people. Especially the young guy who stabbed my liver 15+ times, frustrated he couldn't get an unhealthy sample. Before the 2 docs asked if I knew what stage 4 meant, they ambivalently claimed to accept his negative result. But I knew.

The point of my rambling is that in 2016/2017 all these people saw a gnarly, huge, poorly differentiated tumor, swollen lymph nodes, and 3 spots on the liver and (I think, reasonably) followed a course you would probably advise. Accepting with it the very real risk that I would hear them, opt out, and die in about a year.

I heard the term "complete pathological response" for the first time when my surgeon described my result. Then he told me that between 1/4 and 1/3 of people who go through surgery following neoadjuvant chemo have that result. First I'd heard of it.

Obviously within the field there is a strong weight of ethical responsibly to not oversell the possibilities. But if we're just talking licensed professionals, I think for every person overselling optimism there are several others cutting it close or erring on the side of low expectations.

A couple years ago I lost a friend whose stage I/II breast cancer went untreated. She was a nurse. I'm not pointing fingers (at anyone else, at least). But I'm absolutely not over it. Optimism needs better press agents.

I thought your reply was very important and very appropriate. You and I are coming from the same place--get accurate, detailed information to make an informed decision. If a doctor won't say things clearly and specifically make them or find another doctor. As a surgeon it was very disconcerting to be seeing someone for cancer surgery who hadn't yet been told they had cancer by the referring doctor.

I would never presume to advise someone about an individual cancer case over the internet. I try to keep things general. Besides which my information is more out of date every day.

With your nurse friend I suppose there's more to the story. I do know, as the husband of a nurse, that nurses tend to have a low opinion of doctors and their advice. It's not hard to see why.

[old goat]

I'm really sorry to see that, Jenny. Hope he's another miracle kid, but how gut wrenching.



I think I understood what you meant and should have kept my reply more focused. My six discussions before treatment varied, some being more relevant. The conversation with 2 docs who told me I was dying (4% to get to 5 years, not long term survival) expressed an optimistic hope of a year, extending to maybe 2 with treatment, as would seem appropriate with the patients you're describing. And they really seemed to think that's who they were talking to. I think they erred on the side of low expectations (as they said) for some reason, but they were trying to be realistic, as they saw it. (I always wanted to tell them not to worry, disappointment ends with us.)

Another doc, a life long friend, got me the first appointment with my surgeon. 15 minutes after I left he called, feeling the weight of a horrible responsibility, and gently but firmly suggested that I consider not doing too much.

I absolutely appreciate every one of those people. Especially the young guy who stabbed my liver 15+ times, frustrated he couldn't get an unhealthy sample. Before the 2 docs asked if I knew what stage 4 meant, they ambivalently claimed to accept his negative result. But I knew.

The point of my rambling is that in 2016/2017 all these people saw a gnarly, huge, poorly differentiated tumor, swollen lymph nodes, and 3 spots on the liver and (I think, reasonably) followed a course you would probably advise. Accepting with it the very real risk that I would hear them, opt out, and die in about a year.

I heard the term "complete pathological response" for the first time when my surgeon described my result. Then he told me that between 1/4 and 1/3 of people who go through surgery following neoadjuvant chemo have that result. First I'd heard of it.

Obviously within the field there is a strong weight of ethical responsibly to not oversell the possibilities. But if we're just talking licensed professionals, I think for every person overselling optimism there are several others cutting it close or erring on the side of low expectations.

A couple years ago I lost a friend whose stage I/II breast cancer went untreated. She was a nurse. I'm not pointing fingers (at anyone else, at least). But I'm absolutely not over it. Optimism needs better press agents.

I thought your reply was very important and very appropriate. You and I are coming from the same place--get accurate, detailed information to make an informed decision. If a doctor won't say things clearly and specifically make them or find another doctor. As a surgeon it was very disconcerting to be seeing someone for cancer surgery who hadn't yet been told they had cancer by the referring doctor.

I would never presume to advise someone about an individual cancer case over the internet and I don't know what I might have advised you in person. I try to keep things general here. Besides which my information is more out of date every day. I would say that the kind of odds you were given are not the kind that would ordinarily lead me to advise against treatment in a relatively young or fit older person. I'm thinking of situations where the chance of benefit is even worse.

With your nurse friend I suppose there's more to the story. I do know, as the husband of a nurse, that nurses tend to have a low opinion of doctors and their advice. It's not hard to see why.

[jono]

Agreed. And there's definitely more to that story. I don't know all of it, but I'm sure there was something like that nurse attitude in it.

She changed her mind near the end and reached out to ask if maybe I knew someone else, since she'd finally tried to get treatment from her original docs after it was too late. Fucking humans, man.

ETA: just to be clear, no one advised me against treatment, and the one point of agreement among all at that point was that I needed a PET-CT. Which only my insurance company was ready to note couldn't be needed if they already knew everything...humans again.

[Trackhead]

I remember sitting in the infusion chair with curtains pulled, heard an older guy come in with family. Infusion nurse approached, patient said “I’ve decided to stop chemo”. Without hesitation nurse said ok and offered some compassionate words.

I’ve worked ER my entire life and have seen plenty of dead/dying and had the same conversations, but for some reason this man’s response really stuck in my mind.

No point to this story at all. Accept we all ‘sometimes’ get to choose our own endpoints.

[jono]

Lot of reasons for that to stick with you. My brain would probably be relentless, just knowing he got to the infusion room with family before telling his medical team.

My nurse friend made an appointment in her 30's and got an early detection. She didn't plan to die, but the western medicine ended after the mammogram. In my head it fit too well with the 3 somewhat older friends/family who died that year with similarly conscious decisions to only accept treatment after it was too late. All 4 made a last trip to ER. Sticky paradox.

Thanks for the discussion!

ETA: infusion nurses are angels in human clothes.

[Trackhead]

ETA: infusion nurses are angels in human clothes.

Truly. Mine were amazing, the whole team was, from front desk, to med tech, to docs, nurses......

I made a promise to myself to be more compassionate with 100% of my patients, even at 3am. Grinding ER can make you pretty cynical. I don't always pull it off, but do now much much more than before.

This shit diagnosis will teach you things, and threads/discussion help remind you of what you have today.

[Meadow Skipper]

My cousin’s 5 yr old son has retinoblastoma. It’s all happened so fast since the detected it. They removed his eye last month. The surgery went really well but his oncology team was not happy with what they saw at his follow up, and now he’s undergoing chemo. His other eye looks great and the socket has healed well, so he got his prosthetic this week.

Oh crap. Fuck cancer.

[Meadow Skipper]

ETA: infusion nurses are angels in human clothes.

+2

[cspringsposer]

My cousin’s 5 yr old son has retinoblastoma. It’s all happened so fast since the detected it. They removed his eye last month. The surgery went really well but his oncology team was not happy with what they saw at his follow up, and now he’s undergoing chemo. His other eye looks great and the socket has healed well, so he got his prosthetic this week.

So sorry to hear that. Nobody, especially a young child, should have to fight this battle. Praying everything moves forward smoothly for him and your cousin. Fuck cancer!

[cspringsposer]

ETA: infusion nurses are angels in human clothes.

Those nurses are unbelievably kind and compassionate! I have no idea how they can do that job day after day. Probably one of the toughest jobs in the planet.

We came across two types of docs/nurses/PA's during my wife's chemo. There was the type that was professional but very distant as not to get attached to someone that might not be there next month and the type that were all in emotionally no matter what the outcome might be.

My wife's primary oncologist was the all in type. She celebrated the wins with genuine passion and joy, but the losses were devastating and she takes everyone as a personal loss. You always know if she is winning or losing because her emotions are out there for the whole world to see.

She is an incredible human and doctor and I cannot fathom the responsibility and pain that she deals with everyday. I am not strong enough to do that job. I can't imagine what these cancer doctors and nurses go through everyday, but I am eternally grateful they do it.

[jono]

Hell yes to all that. The medical oncologist I finally went with is all in, too. He's a loud, angry Croat who shouts "Danko!" into his cell phone whenever it rings and I think his main coping strategy is ritually cursing the insurance companies between patients, whether they need it or not. (Impossible to be sure since they always need it.)