IamA Stage IV cancer patient, AMA

Any advice on how to support someone mentally who has terminal cancer?

It's tough man. I'm not in that situation, but for me I find it best when people just act like themselves, as if everything is normal.

I have Stage IV for a little over a year now and just got to the point where I’m sick of every conversation (with some people in my life) being about cancer. A few weeks ago, I just hit a wall where I had to sit down and tell those people to please treat me like their daughter, sister, friend, and not just a cancer patient. Please just go about your life; let me live mine. You don’t have to remind me every chance you get that I have cancer. Believe me, I haven’t forgotten.

Totally feel that.

What symptoms did you have before knowing it was cancer? Hope everything gets better

Bleeding when using the toilet.

When that occurred, was it considered too late into the discovery of your cancer? How did you know it wasn't hemmorhoids initially instead?

I didn't. Doctor thought it was hemorrhoids. A few months earlier would not have made much a difference.

How did they ultimately determine it was cancer, a blood test? I have bleeding at times, bright red, but I do have occasional hemorrhoids. If it's a simple lab test I might want to ask for one to rule out cancer, but I'd love to hear what steps were taken to investigate.

Colonoscopy found a tumor.

Thanks for answering. I had an uncle (not blood related) who passed away from colon cancer. Wishing you luck on your journey.

How long did it take before you thought "hey, this isn't normal..I need to see a doctor about this" ? I had some hemmorhoids and usually it gets better after using some cream, but I do feel at times I have IBS or something a bit more scarier like cancer.

It was a few months before I did anything about it. If you're bleeding and feeling nervous you should talk to your doctor.

Red blood or dark blood? I've had severe stomach issues most of my life. Always heard bright blood is ok. I've bled a lot. Hate that you're going through this. Rooting for you.

It was bright red. It depends how high up the bleeding is. High up will be black. The lower, the redder.

Did you have any accompanying anal pain? Not to get gross on you, but it’s something I experience relatively often (blood/pain) but it usually goes away and comes back

No, no pain.

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I would ask a doctor.

Thank you for sharing. Was it constant or almost every time?

Thanks again for sharing, your ama is incredibly insightful and kind of you

The amount varied, but there was usually some amount of blood.

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No, not constipated.

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Doing well, thanks!

Blood only on the tp when you wiped?

No, it was a total bloodbath.

Interesting, and what test did you do to find the cancer? I’ve had bloody stools consistently for like a year, so I finally got a colonoscopy but they didn’t find anything, they just thought it might’ve been surface level abrasion.

It was a colonoscopy that found it.

Also stage IV CC here. I never had any bleeding, first indication was elevated liver enzymes showing up in blood work during a routine physical. Already metastasized by then, of course.

Sorry to hear that. Where are you at now?

Xeloda/Avastin on a two week on/one week off cycle, everything mostly steady state for a couple years and side effects are relatively easy to manage. The cancer is also present in some lymph nodes, so probably a different path than yours. Interesting to read about the pump you have, hadn't heard of that before.

Sending positive thoughts your way, brother/sister.

Thank you. No xeloda side effects? Wow. That stuff didn’t like me. Good luck to you.

Are you doing okay, mentally? My mom had stage four lung cancer after stage 2 throat. I’m sorry you’re going through all this. Eff cancer!

Yes, I'm doing okay!

Good luck with the treatment. I'm in a similar situation, except it's been spotted when already stage 4 (colon, spread to the liver).

Are you going through chemo again? How often? And how do you deal with the side effects that are not helped much by medicine?

I struggle a lot personally with chemo every two weeks as I really only have 3 to 4 days where I'm "ok".

I'm not doing systemic chemo right now. I did that a while ago. With the liver met, I had a resection and they installed a hepatic arterial infusion (HAI) pump in my abdomen, which delivers a high dose of chemo directly to the liver. I get that filled every two weeks. Having some side mild effects, but nothing like systemic chemo side effects. Good luck to you, wishing you the best.

That’s a super cool treatment!

I agree. Got one of them done my self. The Dr's have found that even in those that they are unable to cure it on average adds at least 2 years to the patients life.

MSK?

Yep. Surgeon was Dr. Kingham

Don’t know that doctor but MSK is really pushing the pump treatment these days.

Yes, yes they are. They are the ones that pioneered it. Now its going more places as Dr's leave MSK or others come in and train with the MSK Drs.

Yup.

I’m about to have a surgical consult for a HAI. What sort of side effects are you seeing?

Upset stomach all the time, urge to use the bathroom when I don't really need to. Other than that I have some high liver enzymes that I'm taking a steroid for. Compared to systemic chemo, it's a vacation.

I'm also a stage 4 patient (going into clinical trials soon). How are you doing with your doctor's? Does processing all the information they give sorta give you a headache, like your brain is gonna explode from too much info all at once?

Sorry to hear that. I'm not yet at the point of clinical trials, there is a chance my current treatment plan can work out. No, actually my doctors are fantastic. They take the time to explain everything and I can always call back to their team with follow-up questions. I have no complaints at all about them.

As a future nurse, what are some things you liked (or didn’t like) from your time spent with healthcare providers regarding your initial diagnosis and treatment process?

Also, how much have your WBC levels fluctuated throughout your treatment? Thanks for your time and effort and I wish the best for you.

I’m not OP but I’d like to answer re: cancer treatment and diagnosis. Like OP said, nurses are everything. My family lives far away and couldn’t be there for a procedure. My nurse spoke to my mother privately via phone and talked her off the ledge and she had 0 obligation to do that - could have told her to come in, wait for info, etc.

When you’re sick sometimes you just do not give a fuck if the other ppl waiting for surgery see your underwear or your gown slips. Nurses who took that responsibility on to allow me to retain dignity meant a lot to me. When I said “who cares” they said “we do, baby, don’t move we will tie your gown. No no no you don’t need to move, we’re gonna scooch you right on over.”

As you probably know after anesthesia and/or a catheter you have to relieve yourself to be discharged. A nurse stood with me in the bathroom pouring warm water in between my legs because she knew I could get little droplets but was getting pee-shy and that asshole bladder gets lazy. That makes me tear up. I apologized for the act, while she chose to do it, and she laughed with me as if it was two friends in a bathroom helping each other.

I could go on forever. Nurses are absolute saints. Some of us (me) hate appearing weak and needing help. When a nurse acts like it is nothing to them, rather their pleasure, and treats me with that empathy and laughs with me, can sense my hesitation … it can be the difference between a panic attack and a positive attitude.

I’ll add: I’ve had nurses advocate for me to doctors. Huge. They see me more, they know when im hurting or acting strange. Absolute saints.

Very well said. Totally agree.

The medical professionals, doctors, nurses, etc. are some of the most amazing people I've ever met. There is nothing they could have done better.
I did not keep track of my WBC count, but I can probably check my test results.

I am in my 20s, and am currently battling breast cancer. I just finished systemic chemo, and I’m waiting for my surgery and my biggest fear is recurrence or it never going away.. My question is, how did you find recurrence? Or were you never able to get clear margins and it never went away?

big hugs to you

Original tumor had resolved 99% through chemo and radiation. I went in for an appointment to get my all clear when they gave me the news that it had metastasized to the liver. That was not a good day.

We're very advanced in today's age with imaging and bloodwork, but they are limited. There can always be microscopic cancer cells that don't show up on scans. That's why they do mop-up chemo after surgery, etc.

since it's colon cancer, got any advice for people? like timely colonoscopies, stuff of that nature? Good luck!!!

I had symptoms for a while before I got a colonoscopy. It was during the height of Covid and a colonoscopy was considered an elective procedure. I would say if you're experiencing any bleeding, talk to your doctor.

How do you feel about yourself, how do you see life now if any different than before?

I don't feel any different about myself tbh. I find family time more important, and try to spend more quality time with my kids.

Depending on age of your kids, do you find you have more patience for typical kid/young person annoyances? Or same same?

Yes, probably.

How are you managing the conversations with your kids? How have they taken it? Ages?

Those were rough. However my wife and I decided we were going to be completely open with them and not hide anything. It was tough but they have a right to know the reality. Oldest is 12, youngest just turned 4.

does cancer hurt? can at some stage you feel you have cancer without being diagnosed?

I don't know, I never had any direct pain from it.

Is your cancer incurable at this point? With current treatments, that is.

No, it's not. There's definitely a chance. Hoping my treatment works out.

DONT FUCKING GIVE UP BRO

Never. Thank you.

My best friend had stage 4 colon cancer a few years ago. Was very scary but he is doing great now. He found out he has lynch syndrome through it. Do you have a similar genetic disorder or was this just bad luck? I wish you the best, idk what I would have done without my best friend, and I'm certain there is someone feeling the same way about you.

I don't have any genetic disorder that I'm aware of

What do you wish people would (or wouldn’t) ask you about your chemotherapy and your prognosis when they’re trying to be supportive?

Before I got sick I was also curious about it. I understand it and the questions don't really bother me.

Are you still able to work, and has your employer been accommodating to your medical needs?

At this point, how much has it cost you to support your treatments financially?

Yes, I am working daily. My company is great. I also have excellent insurance so that has not been an issue.

Thank u for doing this AMA. My father recently was diagnosed with stage 4 rectal cancer, spread to his lungs after being “cured” of stage 2 rectal cancer about 18 months ago… But now I am at odds with the oncologist who is recommending we just wait and watch before starting chemo, because he now only has 2 small nodules left in his lungs… after a big surgery was needed to remove and biopsy a slightly bigger nodule they had been watching for a few months…. And the surgery/biopsy was strongly recommended after seeing some growth of these lung nodules on the scans. I feel like they should be doing more! Did you have input or a “choice” about starting your treatment now versus later?

Yes, I definitely had input. Watch and wait is becoming more common, but I'm surprised they're doing that when there are visible tumors. I'm not a doctor though.

Watch and wait is brutal. A neuroendocrine tumor was found in my appendix during pathology after emergency appendectomy two months ago (meaning they had no idea I had cancer when they removed appendix so they did not look for/take other tissue). The tumor was stage 3 bc it was small BUT was spreading out of the “skin” tissue into my mesoappendix. They believe they removed it all Bc of the size/likelihood of it leaving my appendix&mesoappendix was small. To “finalize” their belief I am “cured” is more localized CAT scans with contrast for lymph nodes & the rest of my GI. It just feels like … I know they are being careful but why not schedule a colonoscopy too given then appendix location? My numbers are good. I don’t want a hemicolectomy. But I want to know I’m clear :/

Sorry to vent. I’m tired of waiting.

Yes, it's hard. I was on watch and wait as well after my chemo/radiation. The other option was surgery on my colon. The doctor told me if I insisted on surgery they would do it, but it obviously has lifestyle changes involved. I opted for W&W and it resolved 100%. The liver met was definitely there beforehand and would have shown up regardless of surgery or not.

What's your favorite song?

Creeping Death probably.

Is your favorite live version of that song from 1991 in Moscow?

Hell yes.

I’m not a doctor: Any possibility of an mRNA-based treatment? I know Moderna is/was working on trials for several cancers

I have no idea.

Thank you for doing this AMA! Sorry if this has been asked but what country are you from? What do you do to help distract yourself from the whole ordeal? Is there strategies that can help? I work in health care and support cancer patients so this would be really useful.

USA. Work is my therapy. If I would be at home in bed I would go crazy.

I've always wondered if anything felt sore or hurt during/before treatment. Does it?

I have not had any pain directly from the tumors themselves. The treatments have had painful side effects.

Are you ever angered when hearing others complain about relatively minuscule problems? I’ve had a bad day today and reading stories such as yours make me feel like my problems are nothing and I need to just suck it up.

No, of course not. Everyone has their own issues they’re dealing with.

My apologies for not reading the whole thread but: what kind of cancer and how old are you? All I can say is: good luck and never loose hope...I just discovered that there is one in a trillion+ chance to teleport yourself given effects of quantum physics, if this is possible everything else is too!

I'm in my low 40's. Was originally colon cancer but spread to the liver.

Sorry I'm dumb you've literally written the type in the other thread on top...do you have any regrets? Anything in life that you think you've done wrong? Pls. keep us updated.

We all have regrets. However, every choice we make in life sets us on a different path. I'm happy where I ended up.

Has your diet changed after your diagnosis?

My appetite has changed. I am not in the mood of eating as much as I used to be.

Excuse me if you've already answered this, but can you explain the progression of your symptoms? Like from the first thing you noticed was off, to your symptoms at the time of your diagnosis? Wishing you the best!

The only symptom I had was bleeding in the toilet.

Hi! Recently (since 2018) my dad (I'm 14) has had lung cancer stage 3, and I was wondering what I could do to make him feel better, because we don't know if he's getting an operation yet?

Sorry you’re going through this. Everyone is different and everyone deals with these situations differently. You know your dad better than anyone. Personally, for me, I am happiest when everyone carries on normally. But to each their own. Good luck, hope your dad pulls through okay!

Does it hurt pyschically or mentally more?

Not physically at all. There are mental games you have to play with yourself sometimes.

How often was there blood in your stool? Was it every day for weeks before you had it checked out?

It was a few months. I tried getting checked out but they would not do colonoscopies at that time, as it was considered elective. It was the height of Covid.

If you’re in the US, how do you afford treatment? Did you hit your maximum out of pocket? If you stop working because of it how do you recover lost wages and retain your health insurance for prolonged illness like cancer?

I have excellent insurance.

First off Thank you for the AMA! … but I must apologize if I get dark real quick:

I have had family members battle with cancer and seen the compounding mental emotional struggle…often this was their first existential threat and forced experience with their impending death…

With your ongoing experience, how has this shaped your view of death?

Do you feel that you have changed as a person? If so can you elaborate?

Did you have a good support system either professionally (healthcare) or personally (friends/family)?

What are your own personal views on doctor assisted suicide? (Death with dignity laws)

Thank you for your valuable time! I am curious to hear your thoughts since these questions and related conversations did not go over well with my fairly religious and dogmatic family… any discussions on the topic devolved into a sermon rather than an introspection of ones own ideas, feelings, and experiences.

With your ongoing experience, how has this shaped your view of death?

I am not afraid of it. I do wish to avoid it for the time being.

Do you feel that you have changed as a person? If so can you elaborate?

No, not really.

Did you have a good support system either professionally (healthcare) or personally (friends/family)?

Yes, I'm part of a large family and they're all super-helpful when necessary.

What are your own personal views on doctor assisted suicide? (Death with dignity laws)

As a religious person and someone who values life, I am against it.

What has been the hardest part of it all besides actually finding out you have cancer?

Telling my kids.

A friend of my just told me that her cancer spread to her liver, lungs, and bones. I don't even know what to say. I was knitting her a shawl/scraf and they were supposed to visit where I live on their way back east. But now she is just trying to home to MI.

I don't know what to say, I did let her know how distressed I was and how I would help in any way to inculde money if she needed it. If she were local I'd start cooking/baking for her (it's how I show love).

Is there anything else I should be doing or saying? Is it okay to let her know how devastated I feel?

Wow. That doesn’t sound like a good situation. Everyone is different. You know her better than I do. People react differently to situations.

Are you re-evaluating your life or future? I think I would question going to work, wasting time at home, the way I spend money, how I think about small annoyances, …

I'm not facing imminent death at the moment. Hopefully my treatment plan works out.

Sorry if I gave off that impression. I struggle with these thoughts, even without any known illnesses. I wonder how my outlook on things would change if I got a diagnosis like that. I guess it all depends on how content you are in life and how positive your look is on things.

I would agree with that.

How has the cancer changed your relationships with your friends/coworkers?

Hasn't at all. I really didn't miss much work throughout treatment.

I’m a MS1 with a plan (for now) to specialize in Heme-Onc. I would really appreciate some insight on things the good doctors have done/said, and maybe some things that have put a bad taste or made you less confident in their ability to provide adequate healthcare? Thank you for sharing your story!

I should point out one thing. I am someone who appreciates bluntness. I don't want to be babied by a doctor who is afraid to give me the unvarnished reality. I told them that when I originally met them and they've been true to it. I appreciate them so much more for that.

Nothing specific. They've just been great. Take the time to explain everything in layman's terms, give me all the options, and are just great people overall.

How does insurance play into all of this? Are they covering your costs?

Most of it, yes.

Do you have any idea why/how you got this cancer? Any long-term exposure to chemicals, dietary habits, or other "likely culprits", in the vein of 'stuff you did that other people should perhaps avoid' -- or do you feel like the cause was pretty much random in your case?

I was a smoker a long time ago, but there is no way to tie that to this directly. Haven't had a cigarette in 14 years. I have no family history. Bottom line, there's no way to know.

What do you feel? I imagine you must be able to few stage 4 cancer in some way or another? Or maybe not?

I feel good for the most part.

What's your favorite board game?

Othello.

You’ve posted several YouTube videos of the same guy playing music, is that you?

I wish. That’s a guy I’m a big fan of. Incredible talent.

Are you scared? Are you undergoing further treatment? Do you use medical marijuana?

Not scared. Doesn't make sense to be anxious about something you cannot control. Yes, I am undergoing a different kind of treatment now. I have a pump in my abdomen that delivers chemo directly to my liver. I do not use medical marijuana.

I have a pump in my abdomen that delivers chemo directly to my liver.

That just blew my mind... Medical science has come so god damn far.

It's truly amazing.

Hey how are things going? How's HAI treatment and how many more rounds do you have left?

Much better than systemic chemo, that’s for sure. 2 rounds left and then we’ll re-evaluate.

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No, not planning on it anytime soon.

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I’m not afraid of dying. My outlook is it doesn’t pay to be anxious or nervous about something I cannot control. Whatever happens will happen. That said, my treatment has some real chances of working out. So while I’m not afraid of it, I wish to avoid it for now.

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Thanks.

how would you describe your diet in your life leading up to your cancer diagnosis? Do you think that it contributed to your current disease?

No way to know.

Just wondering if the diet was healthy?

No, not particularly.

Where there any symptoms except for the bleeding from rectum?

Nope.

Are you sad?

Not at all.

How do you feel when people tell you that they know you feel?

Unless they’ve gone through it they cannot possibly know how I feel. But I appreciate the sentiment.

What is your favorite meal? I'd love if you described it into detail :)

Spaghetti and meatballs. Onions and some pesto.

What were your earliest symptoms that immediately made you think "something isn't right here?"

My aunt had colorectal and she found the 'bag' and losing her hair to be triggers for depression as she felt unattractive to her spouse. Did you experience any low points like that? How did you cope?

Earliest and only symptom was bleeding when using the bathroom. I did not have a bag and only experienced partial hair thinning through treatment.

Did you have bright red stools or were they black and tarry.

Bleeding and stool should always be taken serious but a lot of people have bright red stools from hemorrhoids or straining on the toilet

It was red as the tumor was pretty low.

How much blood was it? And was it consistent every time you went?

Varied. Sometimes a lot, sometimes next to nothing.

Hey, would you be open to take a strong psychedelic? What's the worst that could happen, it's not like you're going anywhere? Am i right?

Don't see the need for it.