Introducing myself, to a club I didn’t think I’d ever be a member of.

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MikeCockman
Posts: 3
Joined: Sun Jul 21, 2019 10:03 am

Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby MikeCockman » Thu Aug 08, 2019 12:22 pm

41 yo healthy male, married with a 5yo.
I eat good, exercise, maintain a healthy weight, don’t smoke or do drugs,only drink on occasion with no family history of CC, and I was just diagnosed with colorectal cancer.
It floored us, the emotional roller coaster is indescribable. Between the Colonoscopy and CT I couldn’t look at my daughter without crying. The joy after receiving a clear CT was amazing, but quickly faded as the realization of being uninsured hit hard.

It all started 8 or so months ago, with occasional bleeding while wiping. Nurse practitioner decided it was likely internal hemroids and sent me home with a cream. The bleeding continually worsened to the point it was now with every movement and throughout the day. So in July I Scheduled Myself a Colonoscopy and a estimated 5cm tumor was found 10-15cm from verge. It was tattooed an biopsied and found to be a mid grade malignant tumor. Bloodwork was fine, and CT shows no spreading and resized the tumor to 3cm. Now because I’m uninsured it’s a waiting game until my insurance picks back up on September 1st. Next appointment is scheduled at Mayo Clinic for 9-10 to do a EUS I guess, as I really don’t know. When scheduling an appointment the possibility of a EMR was mentioned, but seeing as the doc I’m scheduled with only does EUS procedures, it seems likely that is what this appointment will be for.

MeAndMine
Posts: 12
Joined: Mon Aug 05, 2019 2:40 pm

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby MeAndMine » Thu Aug 08, 2019 3:07 pm

Hi Mike!

I surely agree with the "I didn't think I'd ever be a member". You are farther along than me, I've just had the colonoscopy this week with the findings of a 4-5cm tumor & a polyp. Awaiting a CT scan, and biopsies have been taken but no results as of yet. Waiting is the worst!

You've had some amazing results so far with a clear CT and I think the tumor is high enough up to be in a good place for surgery maybe. I'm not much help as I don't know what an EUS is and not very knowledgeable on the subject, but just know that another person is here to listen and talk about things if you need an ear.

Good luck and hang in there!
8/5/2019 - Colonoscopy, rectal mass found along with polyp, waiting on biopsy results & CT

Rikimaroo
Posts: 238
Joined: Tue Dec 20, 2016 8:48 pm

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby Rikimaroo » Thu Aug 08, 2019 3:46 pm

Mike,
get ready for a rollercoaster of pain, annoyances and then recovery and back to your normal self, well close to your normal self.

Let me explain. I had rectal cancer 9cm from anal verge. The first thing they do is what they did to you. Biopsy find out if its benign or malignant. Once that is done, then the surgeon will explain to you surgery or neoadjuvant therapy, which means Radiation plus chemo pills typically pill named xeloda. Radiation is usually for 30 days and the first 2 weeks not bad, the day right after two weeks you might feel like your shitting glass. It is extremely painful to have a bowel movement. You will be using all kinds of lotions, sitz baths, etc...The chemo pills I really had no side effects other then my hands and feet pigmentation turning dark. It cleared up after like 2-3 months. The Butt Burn from RAdiation (sunburn in your anus basically) subsides about 2-3 weeks after finishing radiation. Most people come out with the tumor totally gone, meaning disappeared. But that doesn't mean its gone and there could be microcells so listen to your doctors.

Usually after a month rest, they do surgery. Usually its called a LAR (Lower Anterior Resection or TME Total Mesorectal Excision combined). This means they remove your entire rectum and will give you an ileostomy bag for the joined colon to anus (called colo-anal anastomosis) to heal. I had the bag for 6 months, it was a piece of cake, the first 2 month was a little annoying just getting accustom to it and figuring out the ups and downs and how to cope/work around them. It's really very easy. After six month you will be giving the option to reverse the bag and poop the normal way. Once you losing your rectum pooping is a whole different ball game, it is not as much fun for the first couple weeks, I went 25-40 times for the first week or two and then it gradually got better. The biggest issue is the unpredictability of when I need to go to the bathroom. Clustering is another annoyance of not having a rectum. You poop then go back tot he bathroom for like 10 more times every 5-30 minutes. Taking Metamucil or a fiber supplement plus Imodium will be your friend, but you will never be normal in the pooping arena again. You will have a new normal.

Once surgery is done, your hoping for clean margins and usually your cured. Sometimes your not and its unfortunate and it metastasize, but it is still beatable at stage 4. Typically at your situation you might be stage 3, but don't worry its beatable.

Keep us posted. Keep in mind everyone is different sometimes what happens to others won't happen for you. Like your pain with Radiation might not be bad, chemo pills might affect you more, etc....

Good Luck Brother and keep us posted.

Rikimaroo
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

MikeCockman
Posts: 3
Joined: Sun Jul 21, 2019 10:03 am

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby MikeCockman » Fri Aug 09, 2019 6:53 am

Yes the waiting is the definitely the worse. In my situation it’s compounded even more by being Uninsured. Having to wait 30 days for our new policy to start is nerve wrenching. You realize just how messed up our healthcare system is, when the Doc says, “Well in that case call us back when you get insurance”
In our case we started a new job and are in the doughnut hole so to speak, luckily it’s only a 30 day wait as opposed to 90. But the next test is the EUS (for staging) with an estimated cost of 7-10k.

User avatar
ANDRETEXAS
Posts: 607
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby ANDRETEXAS » Fri Aug 09, 2019 1:43 pm

I would advise you not to do google searches as they will only mess with your mind. Your experience is your experience, and there are no two exactly alike. Keep doing what you're doing.....EXERCISING, eating right and most of all....stay positive, even on the days you don't think you want to be or can't be. Make it happen. Take one day at a time and cross each bridge as you come to it. Don't look ahead...and please don't worry. I know that's easy for me to say, but it's best. Once you have a plan in place with your doctors, things will calm down, and you'll feel more in control. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT

ONE DAY AT A TIME !

MikeCockman
Posts: 3
Joined: Sun Jul 21, 2019 10:03 am

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby MikeCockman » Fri Aug 09, 2019 6:30 pm

ANDRETEXAS wrote:I would advise you not to do google searches as they will only mess with your mind. Your experience is your experience, and there are no two exactly alike. Keep doing what you're doing.....EXERCISING, eating right and most of all....stay positive, even on the days you don't think you want to be or can't be. Make it happen. Take one day at a time and cross each bridge as you come to it. Don't look ahead...and please don't worry. I know that's easy for me to say, but it's best. Once you have a plan in place with your doctors, things will calm down, and you'll feel more in control. Andre


Thank you for the positive words. I’m definitely in a better place emotionally since the CT was clear, but it’s still heavy on the mind of course. This waiting for our insurance to kick in is madding. They wanted to schedule an “Urgent” Eus procedure but there was no way we could afford it, so it’s literally a waiting game now.
Ill definitely keep up my activities and try to increase them. I love mountain biking, Kayaking, etc.. as well as my day to day exercising.

User avatar
horizon
Posts: 1497
Joined: Tue Apr 12, 2011 10:10 pm

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby horizon » Fri Aug 09, 2019 9:38 pm

Sorry you're having to join us. Waiting is torture and it sucks you're in that position. It was really, really hard on me when I was first diagnosed. It seemed so unfair because I was in such good shape. You'll get a lot of support on here from people who "get" it.

ANDRETEXAS wrote:I would advise you not to do google searches as they will only mess with your mind. Your experience is your experience, and there are no two exactly alike. Keep doing what you're doing.....EXERCISING, eating right and most of all....stay positive, even on the days you don't think you want to be or can't be. Make it happen. Take one day at a time and cross each bridge as you come to it. Don't look ahead...and please don't worry. I know that's easy for me to say, but it's best. Once you have a plan in place with your doctors, things will calm down, and you'll feel more in control. Andre


What he said x 1000. I freaked myself out with Google searches.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Rock_Robster
Posts: 184
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby Rock_Robster » Fri Aug 09, 2019 9:42 pm

horizon wrote:What he said x 1000. I freaked myself out with Google searches.

To repeat what someone told me early on, “Dr Google is a great mortician but a terrible doctor...”
Male 37 yr; Melbourne, Australia. BMI 24
10/2018 Dx 3.5 cm RC adenocarcinoma, 12cm from AV
Mod diff (G2), EMVI+, LVI+, PNI-
3 local LN; 4 liver mets, resectable
pT3 pN1a pM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
12/18 - DVT
3/19 - Liver resection (open); R0
4-5/19 - 25 x pelvic radiation w Xeloda; complete metabolic response (TRG 3)
07/19 - ULAR (robotic), temp ileo. R0; 1/27 LN positive
08/19 - FOLFOX x 2-4

CF_69
Posts: 65
Joined: Sat Dec 22, 2018 9:44 pm

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby CF_69 » Fri Aug 09, 2019 11:51 pm

Just for another perspective, I didn’t have really any side effects from radiation until it was almost over.

A lot depends on where exactly your tumor is. Mine was rectosigmoid so pretty high up, so maybe that spared me some of the more unpleasant side effects. I also got two sessions on the same day around Xmas time because of the holidays. That seemed to loosen things up quite a bit if you know what I mean.

I also did not have an ileostomy. I was told I’d probably have one, I met with the ostomy nurse, I got marked for an ileostomy and a colostomy prior to surgery, but I woke up without one. They’re not automatic.

I also didn’t suffer many side effects from the neoadjuvant chemo.

I did feel a bit more while doing the adjuvant, but the dose was significantly higher and the cycle was longer.

My body definitely functions differently than pre-surgery, but so far it’s been manageable, and things have improved and will hopefully continue to.

I have more frequent bowel movements for sure. Some days are good, some are bad. There are many things to try to find your happy place. It will be trial and error, but hopefully you’ll find it fast.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA 1.9
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.

boxhill
Posts: 298
Joined: Fri Apr 06, 2018 11:40 am

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Postby boxhill » Fri Aug 16, 2019 12:06 pm

It's news to me that "most people" find their rectal tumors are totally gone after radiation.

Similarly, it is not a given that the entire rectum is removed. It depends where and how large the tumor is.

People's experiences differ at all stages of diagnosis and treatment, as you've already seen here.

Doing research using reputable sources of information with your rational mind engaged is a good thing, IMHO. Most people find this site through google.

Anyway, the wait must be excruciating. Be glad that insurance plans are not currently allowed to refuse you or make you wait a year for pre-existing conditions!! Good luck. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda


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