I have cancer...

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Aladdar
Aladdar's picture
I have cancer...

I'm keeping this fairly quiet on the social media front until I have far more details, but I need to talk about it somewhere, and you guys are both intelligent and somewhat caring, while also making me laugh at times. So I trust you to share it with.

I went in yesterday for a colonoscopy because I've been bleeding for several months. My doctors all expected it was just hemorrhoids so I wasn't really worried over anything more than having to go through the terrible prep for the procedure. When I woke up my Doctor said it was bad... I have colon cancer and it's kind of big.

This is crazy, I'm only 42, this isn't supposed to happen yet. Anyhow, we don't know how advanced it is yet, whether it's spread, or any of that. So until I know more, I'm trying not to worry my family too much. But best case it looks like I'm going to need a fairly major surgery to cut out that part of my colon. If that's all it takes, then I'll be cured and I'll just have to do a colonoscopy every 6 months for several years. However if it's really advanced and they can't just cut it out, or if it's spread to further areas, then I have no idea what I'm up against.

I'm scared, really depressed, and having a hard time focusing on anything.

If you guys pray, I'd appreciate it. If you have any personal stories about dealing with this, I'd love to hear them. And any good information you all have (And I know some of you are brilliant), I'd love to hear good news about prognosis, etc... I was still woozy when the dr shared it with me, so I didn't really have time to get good answers on everything and I don't want to just go googling because there's tons of scary and bad information available.

Thanks

Talanall
Talanall's picture

My dad had colon cancer. The story's a lot like yours. He went in for a normal colonoscopy, because he was older than you are now, and also because his bowels were kind of irritable. There was a tumor. It was big.

He did not die of it. The doctor biopsied his lymph nodes. It didn't appear to have spread far outside of his lower GI tract, which was great (they may found something in one of the regional lymph nodes, too; he was in Stage II or early Stage III). He had an operation to remove something like a foot or foot and a half of his colon. And then a round of chemotherapy, just in case the doctors had missed something. His hair fell out, but not his beard. He lost some weight, but overall he said it wasn't as bad as he'd been led to believe it would be.

Long story short, the doctors got it all. He died of heart failure, years later, after a lengthy bout with dementia that badly sapped his overall health and was unrelated to his cancer diagnosis.

How bad this is depends on a lot of factors that I don't think are totally evident yet; it's unlikely that your doctor knows, if this just happened yesterday.

Probably your doctor took a biopsy of the growth he found, which is off at a pathology lab somewhere, getting identified so that you will know what kind of cancer you're dealing with. He's going to want biopsies of your lymph nodes, too; that's how he's going to ascertain whether this has spread.

There are lots of variables that you can't know yet, because you don't know what kind of beast you're dealing with. Ideally, you want to hear that this is some kind of slow-growing cancer that doesn't spread aggressively. And you want to get back clean biopsies from your lymphatic system.

If those two things are true, then colorectal cancer is VERY treatable. A cancer diagnosis is never anything other than terrifying, but when colon cancer is still "localized," which is to say that it's in your colon, the 5-year survival rate is something like 90%. If it has metastasized into the nearby lymph nodes but isn't in a distant part of the body or a major organ, then it's more like 70%. That's the scenario that faced my dad, pretty much, and he also lucked out by having a form of cancer that was susceptible to chemotherapy, which allowed the doctors to hedge his bets for him by prescribing it as an adjuvant therapy.

It's not good that the tumor is big, but that's partly because it's evidence that the tumor may have been there for a long time or that it's an aggressive kind of cancer. Even if the tumor itself is massive, colon cancer is highly operable if it's constrained to the colon. You can lose a couple of feet without it hurting you, so the doctor will just take it out. For this reason, many of the staging nomenclatures you're likely to hear will be phrased primarily in terms of seeing how far the cancer has spread, rather than concerned with the size of the tumor. A small tumor with cancer in the nearby lymph nodes is worse than a big one without, from a prognosis standpoint.

Finally, keep in mind that I am talking about something that happened 20 years ago. There have been major advances since my father's illness. Targeted therapies exist now that didn't exist then. Immunotherapies exist now that didn't then. There are new drugs for chemotherapy. There are new techniques in radiation-based treatment. It's a pretty common type of cancer, so there's a lot of research ongoing into how to treat it, and that's good news for you.

Wæs se grimma gæst Grendel haten,
mære mearcstapa, se þe moras heold

Aladdar
Aladdar's picture

Thanks Talannal.

That's a lot of what I remember hearing. He did keep saying it was "bad" and they're moving fast, but he did say it wasn't a death sentence, at least not yet. I'm really hoping it hasn't spread and that all I need is the surgery. We'll see. Thanks for the hopeful message though. That really does help.

Fixxxer
Fixxxer's picture

My father has dealt with cancer a couple of times. Never colon cancer, so far as I know, but he's lead a very cavalier lifestyle with regards to his own safety, and it's resulted in the sort of problems that we all saw coming. He spent the 80s and 90s smoking like a chimney, lighting cigarettes off the cherry of the one he was already smoking. So he ended up with lung cancer. His doctor treated that non-surgically with radiation and while the growths are still there, the spread has been in remission for years now. He's aware that it is one of the things that could kill him.

He's an avid outdoors person. I grew up fishing and hunting with him all the time. But he's also the quintessential redneck and rarely wears any clothing beyond shorts if he can help it. So he's got melanoma. His back, shoulders and nose are covered in little pucker marks where his doctor has had to cut off malignant growths.

Cancer is a hard diagnosis to hear. It's been a word with finality to it for longer than any of us have been alive. But it doesn't have to be a death sentence. Survival rates go up noticeably every year. I have faith that this is going to turn out okay for you.

And if it doesn't, then we can buy an R.V. and start cooking meth.

Aladdar
Aladdar's picture

"And if it doesn't, then we can buy an R.V. and start cooking meth."

The funny thing is that that was the first thought I had last night, then I remembered I actually have good life insurance and I've already pre-paid their college, so my family will be ok with money if I die.

With that said, I think this is a fairly treatable cancer as long as it hasn't spread. We simply don't have enough information to actually know any of that yet as this all just happened.

So fingers crossed that it hasn't spread. If so I think we can just cut it out and I'll deal with a month or two of surgery/recovery.

Board Rider
Board Rider's picture

In 2012 I was diagnosed with stage 3 Hodgkins Lymphoma. I went to the ER to get a lump scanned and I will never forget that morning, sitting in a small ER room with my now ex wife, hearing the nurse tell me of my diagnosis. I had a 10x10cm tumor in my chest that I had no clue about. I was 35.

I lost my shit for a few seconds when I called my mom to tell her. Trust me when I tell you the rest of that day was a whirlwind.

I suppose everyone handles the process differently. Me, I chose to keep doing what I was doing, even moved AMA back to Kansas in the middle of chemo. I will tell you that after 6 months of ABVD chemo I got really low and really tired of....just everything. Despite people around me I have never felt more alone. I had appointments every week and multiple surgeries. I have had two false positives since remission.

But I got through it. And you will too. I don't know you but, man, the best thing I can offer is to talk to anyone who will listen. My dumb ass bottled it up to be a tough guy. I drank heavily. While on chemo. Stupid.

I will gladly talk with you in whatever way you feel comfortable. Talk with your family and be honest with what you want and how you want to be treated. For me, I hated being "petted". Maybe that's your thing.

Oddly, I found something special in the movie 50/50 that came out when I was in the thick of it. If you haven't seen it maybe you will too.

Keep positive. Keep your faith. Keep open lines of communication. Let us know if you need anything. Spiritually, physically, and, of course, sexually.

Aladdar
Aladdar's picture

For me, the biggest problem is the unknown. I'm really good if I know what I'm facing and can have a plan. So once I found out exactly what kind of cancer I have, how far it's spread, and how we need to kick it's ass I think I'll feel a lot better. But that fear of hearing sometime in the next few weeks that it's really advanced and spread just has me stuck.

Yesterday I got bloodwork and started some prep for today's CT scans, today I do the scan. Just knowing I'm starting to work towards it has made me feel better. If we get bottled down in a waiting game I'm going to struggle again.

But yeah, I'm trying to keep quiet about it now just until I know more. I don't want to sit through the tons of family calling (Half of whom I don't even like who will call just to do their "Christian duty" and want to pray and witness to me) until I actually know what I'm up against. I don't want all the questions, I don't want to have to keep answering the same things... So until I know I'm just kind of staying quiet.

I knew I wouldn't get that shit from any of you, so I felt safe posting about it here because I do need to talk, the only other person I really have to talk to is my wife and she's taking the news worse than me.

Thanks for listening, hopefully the CT scan will give us more details and the surgeon will call soon. Then we can move forward.

HVB
HVB's picture

No personal cancer experiences, but hoping your test results bring back positive information.

Tom Kalbfus

My health insurance didn't cover colonoscopies, and then the virus hit and no elective procedures, and I lost my job and got enhanced unemployment, so my income got boosted, so I didn't want to pay for the colonoscopy out of pocket, and there's a huge waiting list for an appointment, I've been trying since I was 50, but events and circumstance kept on getting in the way, and I'm not so eager to see a doctor so he can tell me when I'm going to die, I'd rather not know. I'm 52 years old, and seeing a doctor is a double-edged sword, either he's going to find a problem and tell me what he can do, or he's going to find a problem and tell me how long I've got to live, or maybe he won't find a problem at all. I know I'm going to die someday, if it's not one thing, it will be something else. No matter how careful I am, I'm still going to die of something, but not knowing when is sort 9f a blessing, and a doctor might take that away by telling me what's wrong and how long I've got to live, it's a roll of the dice everytime I make an appointment, you never know until you do.

Tom Kalbfus

Catalyst
Catalyst's picture

I don't have any personal story to share, but I'm thinking about you. As others have said, this is a fairly treatable form of cancer, but it all depends on how far it has spread. My company makes all the tools for the colon removal surgery, so if you want some info on how that process works, let me know.

Aladdar
Aladdar's picture

That might be interesting. My biggest concern right now is what I need to prepare for post surgery.

deadDMwalking
deadDMwalking's picture

For what it's worth, I understand where you're coming from about wanting to know more before you tell others. Not knowing is a real bitch. I had a cancer diagnosis about 10 years ago. When the diagnosis came back they knew what type of cancer but not whether it was aggressive or whether it spread. It was a rough week. It all ended up turning out alright, and I hope it works that way for you.

My father had colon cancer. He had 12 inches of his colon removed. He has a host of other problems because of his age and general failure to take care of his health.

The thing is, even if it goes as well as you can hope, it's still going to be a literal pain in the ass. I wish you didn't have to go through this. I know you can get through it - don't be afraid to put your health as top priority - your doctors should try to move quickly and if they're not - make them. Your proctologist already thinks of you as a walking asshole - don't worry about being too assertive. While they need some time to analyze, you need to get this taken care of as soon as possible.

Talanall
Talanall's picture

If it helps in that regard: my father's resection was done as an open surgery, rather than laparoscopic. It took him about a month and a half to two months before he was able to return to work, but he occupied a physically demanding job as the manager of a large church and parochial school's physical plant. He likely could have returned to something like his normal level of activity much sooner, if he had been occupied in some kind of office job.

He was extremely clear that the worst part of the surgery was the insertion of a nasogastric tube to provide drainage from his stomach during the surgery and into the initial recovery period. Not the surgery. Not the fasting before and after. Not any pain associated with the incision. The nose tube.

Wæs se grimma gæst Grendel haten,
mære mearcstapa, se þe moras heold

deadDMwalking
deadDMwalking's picture

I think Tal's father's reaction is pretty standard - no matter how serious the surgery you end up having, being under general anesthesia means that even if you did feel something, you won't remember it (I've been under general only once to have my tonsils taken out as an adult). It's the things that they do to get you ready that are the most antagonizing.

I know you still have a lot of questions and it'll be some time before they're all answered. A lot of questions start with 'will I still be able to do x' and the answers usually are 'yes, with work'. There's a good chance that there are a lot of things that are going to sound like more trouble than you think they're worth. Put that thought right out of your head. Your wife and kids are going to want you to be part of their lives through college and beyond, and things like (potentially) having an ostomy bag sound a lot worse when you're imagining what it's like than they actually turn out to be when you're dealing with it day by day.

I don't know if you've had pain in addition to the bleeding, but having a tumor removed may end up making you feel better than you expected - if it's been there a long time you may have decided that's what normal is - and when it's gone (and you've recovered from surgery) the new normal may be better than you thought...

Aladdar
Aladdar's picture

Oh definitely. I'll be doing whatever it takes to get this stupid cancer gone. Especially if it's something treatable like this. That might change if I ever have a non-treatable cancer and I have to start deciding between adding a few extra miserable months or just enjoying as best I can what I have left; but unless I get different information, that's not what I'm dealing with here.

Catalyst
Catalyst's picture

If you don't mind a little gore, this is an excellent video of a laparoscopic colon resection: https://youtu.be/_yP2RuHuW9o

Aladdar
Aladdar's picture

For everyone's knowledge, Monday is my surgery. Mine requires a full incision rather than just a laproscopic incision due to where it is located. I'll be in the hospital for 3 - 5 days. Hopefully I'll be able to access some wifi in the hospital and update everyone once I'm no longer high from drugs.

I'd appreciate good thoughts, prayers, whatever you have.

As a side note, I had to get a covid test as part of pre-op today. If you've ever wondered what an ice pick to the brain feels like, I suggest you just get tested. lol

Talanall
Talanall's picture

Oh, don't wait. High updates are best updates.

Wæs se grimma gæst Grendel haten,
mære mearcstapa, se þe moras heold

Fixxxer
Fixxxer's picture

I had surgery a couple of months back and had to have to Covid test done in the driver seat of my car. And for whatever reason, the first swab wasn't acceptable, so she had to swab the other nostril, too. I feel you.

Best of luck. I know your surgery will go fine. But try not to leap out of a window after the second day of having to eat TMH cafeteria food.

Aladdar
Aladdar's picture

lol, Luckily I'm not in Tallahassee anymore. Sacred Heart in Pensacola is a pretty decent hospital, but I've yet to discover their food options. I've been told I likely won't eat at all for a day or two, so by the time I'm ready for food, I'm sure I'll like anything. :)

deadDMwalking
deadDMwalking's picture

Best of luck to you and yours. Glad that you were able to get the surgery so (relatively) quickly - just over a month from diagnosis to surgery is good. Looking forward to updates as soon as you feel well enough to share.

Fixxxer
Fixxxer's picture

Aladdar wrote:

lol, Luckily I'm not in Tallahassee anymore.

Oh shit, that's right. I knew that, but for some reason, my brain just made the assumption. Duh.

Aladdar
Aladdar's picture

Hey everybody, I'm finally back on my feet. Damn was that surgery worse than expected. It turns out the tumor was a bit lower in the colon than expected which made it far more complicated and required a lot more cutting and almost an entire week in the hospital for recovery. I've got a 6 inch incision and bruising all across my abdomen. I look like one normally does after a night of fun out with @Fixxxer.

I'm still having some post operative issues with everything coming back online, but I'm hoping that now that I'm finally off the narcotics that things will start working better. Energy is coming back and I think within the next couple of weeks I should feel almost all the way better.

Anyhow. The good news, aside from the difficulties I've had post surgery, is that while the tumor had likely been there for close to 10 years, it hadn't really spread and wasn't deep, so it's only stage1 and I don't require any further treatment of chemo or radiation. I do have to have follow-ups and bloodwork every 4 months, and yearly colonoscopies (Yay), but as long as it doesn't come back, in a few years they'll mark me cured and I can go back to normal.

Board Rider
Board Rider's picture

Thats good news buddy. Glad to see it.

Fixxxer
Fixxxer's picture

Hell yeah! And all it took was getting a chunk of your butt cut out.

Catalyst
Catalyst's picture

That's great news! Did they let you keep the bit they cut out?

Aladdar
Aladdar's picture

No, it had to be sent off for biopsy.

Fixxxer
Fixxxer's picture

Shame. You could have named it. Maybe crocheted a little outfit for it. With a hat. Named it Biopsy Busey and put on little puppet shows with it. Basically ensured that your wife would never be able to sleep again.

HVB
HVB's picture

Great news!

deadDMwalking
deadDMwalking's picture

You forgot to do your evangelical relatives a solid and give all the credit to god and none to the doctors. And of course setting aside that god gave you/let you get cancer before deciding to spare you.

But I'm really glad to hear that you're recovering well. Every bit of good news this year is most welcome.

Aladdar
Aladdar's picture

lol, true.

I'll give all praise to God once I finally start pooping properly again.

Darker

I know I'm late to the party but glad it seems like it is going to turn out okay. I'm hoping by now everything has started working properly.