New Member, Introducing Myself

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JennPixie
Posts: 12
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

New Member, Introducing Myself

Postby JennPixie » Tue Aug 08, 2017 11:12 am

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

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. :shock: 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! :shock: :shock:

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... :shock: 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. :)
A work in progress...
...Aren't we all.?.
8)

Basil
Posts: 128
Joined: Thu Mar 16, 2017 12:33 pm

Re: New Member, Introducing Myself

Postby Basil » Tue Aug 08, 2017 1:47 pm

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.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

Basil
Posts: 128
Joined: Thu Mar 16, 2017 12:33 pm

Re: New Member, Introducing Myself

Postby Basil » Tue Aug 08, 2017 1:48 pm

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.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

mpbser
Posts: 209
Joined: Wed Apr 19, 2017 11:52 am

Re: New Member, Introducing Myself

Postby mpbser » Tue Aug 08, 2017 2:13 pm

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.
Wife of 4/12/17 Dx age 45
5/19/17 - Lap left hemi
Adenocarcinoma
Tumor size: 5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
CEA: 1.4 Pre-op; 2.1 2 days Post-op
Tumor extension: Invasive through muscularis propria into pericolic fat
Proximal margin: >14 cm Distal margin: >14 cm Mesenteric margin: 3 cm
Lymphovascular invasion present
MSS/MSI-L
Lynch - unlikely; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2

DarknessEmbraced
Posts: 2668
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New Member, Introducing Myself

Postby DarknessEmbraced » Tue Aug 08, 2017 5:08 pm

I'm sorry you've been through so much and hope you have good scans! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/2016
NED 11/10/16

Basil
Posts: 128
Joined: Thu Mar 16, 2017 12:33 pm

Re: New Member, Introducing Myself

Postby Basil » Tue Aug 08, 2017 8:17 pm

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?
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

JennPixie
Posts: 12
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: New Member, Introducing Myself

Postby JennPixie » Wed Aug 09, 2017 12:26 am

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. :shock: ]), 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" :o )

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.
A work in progress...
...Aren't we all.?.
8)

JennPixie
Posts: 12
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: New Member, Introducing Myself

Postby JennPixie » Wed Aug 09, 2017 12:31 am

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! :x
A work in progress...
...Aren't we all.?.
8)

JennPixie
Posts: 12
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: New Member, Introducing Myself

Postby JennPixie » Wed Aug 09, 2017 12:37 am

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...
A work in progress...
...Aren't we all.?.
8)

mpbser
Posts: 209
Joined: Wed Apr 19, 2017 11:52 am

Re: New Member, Introducing Myself

Postby mpbser » Wed Aug 09, 2017 6:01 am

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.
Wife of 4/12/17 Dx age 45
5/19/17 - Lap left hemi
Adenocarcinoma
Tumor size: 5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
CEA: 1.4 Pre-op; 2.1 2 days Post-op
Tumor extension: Invasive through muscularis propria into pericolic fat
Proximal margin: >14 cm Distal margin: >14 cm Mesenteric margin: 3 cm
Lymphovascular invasion present
MSS/MSI-L
Lynch - unlikely; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2

Lee
Posts: 4990
Joined: Sun Apr 16, 2006 4:09 pm

Re: New Member, Introducing Myself

Postby Lee » Wed Aug 09, 2017 11:23 am

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
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
peanut_8
Posts: 2094
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: New Member, Introducing Myself

Postby peanut_8 » Wed Aug 09, 2017 11:38 am

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
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

JJH
Posts: 68
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: New Member, Introducing Myself

Postby JJH » Wed Aug 09, 2017 3:02 pm

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.

tammylayne wrote:...Your doc put the bag in...he/she is the best one to discuss when and how to take the bag out....

Achilles Torn
Posts: 68
Joined: Fri Dec 16, 2016 2:41 pm

Re: New Member, Introducing Myself

Postby Achilles Torn » Wed Aug 09, 2017 4:51 pm

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
40 yo Male. BC Canada Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.

JennPixie
Posts: 12
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: New Member, Introducing Myself

Postby JennPixie » Wed Aug 09, 2017 8:46 pm

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.
A work in progress...
...Aren't we all.?.
8)


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