The Colon Club

Um, so... Hi. (Introduction threads are awkward, LOL)
So... a nut-shell of my story? *heh* Oh, what fun!

So I'd been feeling rotten (back pain, belly pain, fatigue, constipated and then rather violently vomiting anything I tried to eat/drink, and on top of it all, my periods have been beyond wonky.)
Go to the ER coz I had no primary care doc at the time.
ER said "You're constipated. Eat more vegetables." (*oh yeah, I'm a vegetarian. Eat more vegetables. LOL!)
Had a very loud and painful vomit (just bile, by this point, coz I'm too scared to eat, coz I'm not keeping anything down)
Sooo... they do an X-ray of my middle.
"You look fine. Eat more vegetables. And walk more."

Ooookay.

A week later, I'm at my MIL's doc, coz I'm feeling worse, still puking up anything (seriously, it's hard to keep water down!), and I'm at my wits end.
He does a look at my symptoms, my blood work, and tells me that I'm "Alarmingly anemic" and he wants to find out why. Sends me to get a CT.

He calls me at OMG:o'clock AM, telling me there's some serious issues, and I need to get to an ER, like, right away.
We stop by his office, he tells me there's a mass in my colon, and a perforation, as well. That s*!t needs to get taken care of.
So he jots down a quick note for me to give to the ER (a different one, coz the first was so... wrong)

Well, there was some Sit-and-wait, there was a flurry of docs, nurses, and I can't remember all else, and next thing I know, I'm getting prepped for surgery!

Wonderful anesthesiologist (I don't remember anything ... except sorta hazy, the surgeon introducing herself...), Fantastic surgeon (everything went very well, fixed what needed fixing, removed what needed removing, even took care of an ovarian cyst they found while in there...) and wonderful after-care. Nurses and physical therapists, doctors and a few counselors, everyone was really very good. Helped me and my family make a bit of sense of the whirl-wind blur of all that happened.

And (I lost track of time) after a few days.?. maybe a week? (could have been more, I really lost track of days!) One of the docs comes to my room with another one I hadn't met yet. They'd taken samples and all to testing.
It was cancer. (at that point, I'd already guessed that, but still... hearing it out-loud... surreal and scary and ... It kinda took my breath for a moment.)

Now I've got myself a freakin' Oncology Team... What?

..............

Well, all that kicked off in February, this year. Took forever for my surgical wound to heal (they did a lot of work in there, I got me a long-@ss scar...), they did some blood draws at a recent visit, said they didn't think chemo was needed. Got me some new CT scans, and I'll be in to see the doc on Friday to hear what those looked like. If all goes well, I'll also be talking with my nurse navigator about setting the wheels in motion for getting reversal scheduled. (I'm sick and tired of the bag!)

...............

So... that's me.

Hi.

Has anyone talked to you about staging? If all this happened in February I would think you'd really want to know what you're facing before now. Good news is if chemo is not needed you're likely in an early stage. I was diagnosed March 16 and when straight from mycolonoscopy to ct for staging. So, welcome. Sorry you're here.

P.S. I've had a temp bag for exactly one week and am already harassing my surgeon for a reversal. I haaaattteee this fucking thing.

Welcome, JennPixie. What a whirlwind you have experienced. I know a little bit about whirlwinds!

I second what Basil says about staging. Also, you should get a PET scan done because CT scan may not have detected any metastases to other organs such as the liver and/or lungs.

My husband's CT scan only showed the 5 cm mass in his left descending colon with a few "suspicious lymph nodes" while he actually had 9 positive nodes, spots on his liver, and had/has a huge polyp/tumor (6-7 cm!) at the right-transverse colon junction. Now he has to have a second colon resection because the other polyp/tumor was missed.

I'm sorry you've been through so much and hope you have good scans!

Question about scans - I had a ct and MRI in March at diagnosis and a Ct and MRI before surgery a couple of weeks ago. All scans were negative for mets and the path report from surgery is complete response - no cancer. I am thrilled, of course, but the fraidy cat side of me is still wondering if they missed something. I haven't heard any suggestion of a PET in my future - more of a "you're as cured as we can get you."

I'm at MDAnderson and have great confidence in my PCP there. I'll meet with him sometime in the next couple of weeks. Not to be offensive, but he knows more about what I'm going through than me or anyone else here. Any strong thoughts on the benefit of a PET at this point?

Basil wrote:Has anyone talked to you about staging? If all this happened in February I would think you'd really want to know what you're facing before now. Good news is if chemo is not needed you're likely in an early stage. I was diagnosed March 16 and when straight from mycolonoscopy to ct for staging. So, welcome. Sorry you're here.

They said I had stage 2, that two lymph nodes were involved. So they got those, as well as the affected colon.

When I was first talking with the oncologist (while I was still in the hospital), he was saying he was thinking "minor chemo", more of a 'just in case', coz my surgery had gone so well.
Buuut, my healing was sooooooo slow, LOL! (But then, it was a huge freakin' opening [think kind of like, a bit larger than 1/4 of a larger watermelon, that's how big the wound was, at the start. ]), and since it took so long, they said "Well, we don't typically do chemo this long after surgery".
Hey, it took this long to heal... "We looked at the blood work, and we don't see any markers..." (I kind of forgot all he said, coz my brain was focused on the idea of "No Chemo" )

They decided that instead, they'd have me come in for scans every few months for a while. They're going to keep a close eye on things and make sure it all keeps looking good.

So... keeping fingers crossed.!.

...
Thanks for the welcome. And... well, I wish none of us would have even needed a place like this. But at the same time, since we do need it, I'm d@mn glad to have found it.

Basil wrote:P.S. I've had a temp bag for exactly one week and am already harassing my surgeon for a reversal. I haaaattteee this fucking thing.

Ugh, I know! I'm "used to it", now, but I still hate it. With a major passion, HATE it!
Ever have trouble with the edge of the adhesive part peeling up? SO aggravating!

mpbser wrote:Welcome, JennPixie. What a whirlwind you have experienced. I know a little bit about whirlwinds!

I second what Basil says about staging. Also, you should get a PET scan done because CT scan may not have detected any metastases to other organs such as the liver and/or lungs.

My husband's CT scan only showed the 5 cm mass in his left descending colon with a few "suspicious lymph nodes" while he actually had 9 positive nodes, spots on his liver, and had/has a huge polyp/tumor (6-7 cm!) at the right-transverse colon junction. Now he has to have a second colon resection because the other polyp/tumor was missed.

I'll talk with my doc about a PET, thanks for letting me know about that!

Yeah, in the midst of such a whirlwind, it's hard to keep track of everything. So much happened so fast, I hardly had a moment to breathe, much less, absorb all the information flying at me...

Basil,

The standard practice at my husband's cancer center is to first do a CT to confirm a mass in the colon. Then, a PET and MRI are done after surgery because they are more sensitive than a CT to look for metastases. We asked what was the need for the MRI on top of the PET and learned that the MRI is able to give information about the liver that a PET cannot because of its 3-dimensional scanning. From the medical literature, it doesn't seem that there is a huge difference between MRI and PET from what I could tell.

JennPixie, with only a CT, would seem to need either MRI or PET now at this time. MRIs and PETs are far more expensive than CTs, so maybe cost is playing a role in the decision making of her care team.

It was the "gold standard" at one time here in the USA when diagnosed with colon cancer, you would get a "baseline" PET/CAT scan. This was done as part of the staging process and was done prior to surgery, short of emergency surgery. Obamacare changed that, due to the expense of the PET scans. Some private/company insurance will pay for the baseline PET/CAT scan at diagnoses today, butt it's becoming rare now.

Lee

Hi Jenn pixie.

Sorry about your diagnosis, butt glad that you've found us here at the Colon Club.

I don't have a lot of info about PET scans, butt can relay what I've learned from my oncologist. PET scan can be prone to false positives. They can be a good resource if there is a suspicious area found on a CT scan. Here's a link with more info if you're interested...https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3259390/.

Best Wishes,
peanut

JennPixie wrote:
They said I had stage 2, that two lymph nodes were involved. So they got those, as well as the affected colon.

I'd ask for clarification on your pathology report and staging. If 2 lymph nodes tested positive for cancer then I think you would be stage III according to all the guidelines I've read. This isn't meant to scare you (stage IIIa has similar survival rates to Stage II) but it would guide some treatment decisions and may mean your insurance is more willing to pay for additional scans/tests. It sounds like you've done well and are likely cured, but It is never wrong to stay as aggressive and informed as possible. Just my 2 cents.

AT

Achilles Torn wrote:

JennPixie wrote:
They said I had stage 2, that two lymph nodes were involved. So they got those, as well as the affected colon.

I'd ask for clarification on your pathology report and staging. If 2 lymph nodes tested positive for cancer then I think you would be stage III according to all the guidelines I've read. This isn't meant to scare you (stage IIIa has similar survival rates to Stage II) but it would guide some treatment decisions and may mean your insurance is more willing to pay for additional scans/tests. It sounds like you've done well and are likely cured, but It is never wrong to stay as aggressive and informed as possible. Just my 2 cents.

AT

I'll dig up my paperwork, I could be misremembering, LOL.
As I said, a TON of information was getting thrown at us, and it's hard to keep track of it all...

I do have a couple of thick folders of paperwork, I haven't had the energy until just recently to go over it all and decipher all of it.