Probably have colon cancer

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cptango
Posts: 5
Joined: Tue Jul 05, 2016 5:54 pm

Probably have colon cancer

Postby cptango » Tue Jul 05, 2016 6:35 pm

Well the past few weeks have been really crazy and really confusing so i wanted to both introduce myself as well as vent a little if that's okay? I am very sorry for the length. Other than my dad and wife no one else knows the below yet. I am a 43 year old man with two kids.

For the medical backstory I have had chronic diarrhea and pain after i eat for at least 15 years. I self diagnosed myself with IBS-D and never saw anyone about it. I just lived off a steady dose of Imodium. Then about a month ago I got really bad constipation and pain in my abdomen all the time. I finally went and saw a doctor since the pain was so great i couldn't function at work. He took my breath sounds and said i can't help you instead you need to see a Gastroenterologist.

I called around and every single one was two months out for an appointment with a new patient. My pain was so bad I finally got one to agree to see me just a week later but I could only meet with the assistant ND (Natropath Doctor). She said my symptoms didn't sound like CC and instead ordered blood work, an x-ray of my colon and a sonogram of my gallbladder and a colonoscopy 2 months later at the doctors next available date. The xray showed I was constipated so she had me do a miralax clean out but the pain continued. A few days later the sonogram results came back and showed my gallbladder was normal but i had two large masses on my liver. All of my blood work was clean including liver panel. She said they could just be fat and ordered an MRI a week later. Then the MRI showed dozens of lesions on my liver. She said that I needed to have a liver biopsy but that was scheduled for another two weeks later.

I was able to get my colonoscopy last Tuesday when another person canceled (a month after first visit for pain) and right after the Dr said that it looks like I have a bleeding and partially blocking tumor in my sigmoid. He also said that probably related to my liver issues. I of course freaked out and made appointments with mayo since I fortunately live in phoenix and thank goodness they take my health insurance. A hematologist/oncologist and a surgeon. Well they were both three weeks out but the scheduler said she will work on getting me in with the oncologist sooner. She came back last Wednesday and said after reviewing my liver MRI and colonoscopy pictures the doctor will instead see me on Tuesday (today).

Thursday night my stomach hurt so bad I went to the ER. It had been a month and no one had ever addressed my pain. The ER helped me and gave me an IV of morphine and a script for low dose hydrocodone as well as did a CT scan of my belly.

Then Friday morning came and Mayo called me asking if I spoke to my gastro yet about the pathology results yet? I said no and they told me they cant see me until I speak with my gastro. I call and he is on vacation due to the 4th. I am very upset and not knowing what to do I called mayo back and told them how my doctor was on vacation etc. She said sorry but I should still have my liver biopsy done as previously schedules and talk to my dr before I can talk to a mayo oncologist. I was so confused I was in tears. I called my Drs office and told them vacation or not he needed to call me that day. They said sorry not going to happen. Then on Friday at 5pm a doctpor he works with (i never met) calls me and says "I wanted to make sure you had a good weekend so I am calling to let you know that you dont have cancer. The results are negative".

Not an hour later Mayo calls again and says the doctor will see you Tuesday even without you speaking with your gastro about the results. So today my wife and I go in and he says "the pathology is wrong. He didn't send them the right cells/didnt dig deep enough/ or there was some other abnormality. Just looking at your liver MRI you probably do have cancer. Mayo will do a liver MRI on Friday you will get the results next monday and we will put together a treatment plan afterwards. Colon surgery can impede the chemo etc so we need to fix your liver "first" " as its more serious. We just need to liver pathology before we start to do anything because even though its 85-90 percent going to colon cancer it could be another issue like lymphoma etc. He said after the liver biopsy results come in he will throw a bunch of test at me like a pet scan etc to see what all we are looking at.

So in a nutshell, I didn't have cancer (his ND asst), I did have cancer (gastro right after the colonoscopy) I didn't have cancer (different doctor in his office after pathology for colonoscopy came back) to today it is agasin(you are certainly sick and 85-90 percent it is colon cancer)

I never saw this coming. I appreciate any words of wisdom you can share or other advice.
CPTango

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Probably have colon cancer

Postby Soccermom2boys » Tue Jul 05, 2016 11:07 pm

Wow, as if having cancer doesn't put you on a roller coaster of emotions as it is, you really got a mental workout these past few days. I am so very sorry you have already had to experience so much emotionally and the "fun" hasn't even started yet. Well, easier said than done, but take a deep breath and know that you are on a good path to finding the answers you need, even if it isn't what you want to hear. Getting a plan together with your medical team is a huge step in the right direction and absolutely helps take away a smidgeon of the helplessness you are most likely feeling. It does take time to get all of that testing in, but it's so important because there are so many variables involved so you want to be sure you/your doctors know everything they are dealing with. This is an overall long process so keep that in mind, there is no EZ Pass through cancer unfortunately. I had rectal cancer and was diagnosed in early August of last year and didn't finish up with the whole shebang until early June of this year so that was ten very long months in my case. I don't say it to scare you, only to give you perspective that this all takes time. Besides getting in to see the docs at Mayo, the second best thing is you found this forum! Can't say enough good things about how much of a lifeline this is to have the collective help and support from people who have or are dealing with the exact same issues and feelings that you are. You will eventually get to the other side of the treatment rainbow, just know it may take some time and we are all here to support you along the way. As you are still very early in I guess my only advice would be to take the best care of your body that you can--be as physically active as you can be which will help with any surgery recoveries you will have. Walking has absolutely been my free therapy--I walk with my girlfriends as much as I can squeeze in with schedules as well as with my husband in the evenings after work. I run when I feel up to it and the weather isn't sweltering, but I love the feeling afterwards. So do what you can to get your body ready for what is coming--whether it's exercise, eating healthy,etc. And then keep checking back in with us, asking questions and letting us know how you are doing. :)
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Probably have colon cancer

Postby jhocno197 » Tue Jul 05, 2016 11:25 pm

I am sorry you have to deal with such insensitive ridiculousness on top of everything else!

Pathology can come back negative when there is something actually going on if they didn't get just the right spot.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

DarknessEmbraced
Posts: 3548
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Probably have colon cancer

Postby DarknessEmbraced » Wed Jul 06, 2016 7:16 am

How awful you are going through this!*hugs* I hope you get some answers soon! *hugs* Such a roller coaster!
Last edited by DarknessEmbraced on Wed Jul 06, 2016 7:51 am, edited 1 time in total.
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 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Probably have colon cancer

Postby Swirdfish » Wed Jul 06, 2016 7:21 am

I'm sorry that you are here but I was diagnosed four weeks ago at age 35 with a Tumor to the sigmoid. 15 years is a long time to wait with those symptoms as you suggested.

It really is a roller coaster as people say and I'm still one week away before I start having chemo and radiation. It's seems forever but keep a strong mind and body.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

cptango
Posts: 5
Joined: Tue Jul 05, 2016 5:54 pm

Re: Probably have colon cancer

Postby cptango » Fri Jul 08, 2016 6:44 pm

Well I had my liver biopsy this morning. My oncologist should get the results by Tuesday.

CPTANGO

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Probably have colon cancer

Postby mypinkheaven » Fri Jul 08, 2016 7:45 pm

More waiting. . . . . . it's tough. Hoping for the best for you.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

Newmol
Posts: 34
Joined: Mon May 16, 2016 4:36 am

Re: Probably have colon cancer

Postby Newmol » Sat Jul 09, 2016 5:43 am

I found the waiting was terrible. You wait for appointments. You wait for testing. You wait for test results. And while you wait your minds runs in overtime worrying about what is going on in tpyour body and what you might be facing. I am so sorry you are getting such mixed answers which must make the waiting even worse. I hope you get definitive answers soon.
Routine colonoscopy 4/19/16 tubulovilois adenoma partially removed piecemeal - high grade dysplasia
Follow-up colonoscop 5/11/16 partial removal of remnants - suspicion of intra mucosal carcinoma
Right Hemicolectomy 6/7/16 margins and 39 lymph nodes - negative

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Probably have colon cancer

Postby WriterGirl1969 » Sat Jul 09, 2016 7:07 am

cptango wrote:Well the past few weeks have been really crazy and really confusing so i wanted to both introduce myself as well as vent a little if that's okay? I am a 43 year old man with two kids.


Hi cptango. I was so sorry to read your note and see what a crazy ride you've had to be on so far. Finding out can be emotional enough, but when doctors add confusion it's just horrible. Glad to hear the mayo team will be planning with you. Age-wise, I'm in a similar situation. I was diagnosed when I was 46.

If I have any advice, it's to ask for a copy of all the results, especially since they seem so varied in analysis and diagnosis. Keeping copies can help you see what differences you have between them, and also help you learn a little about what you're dealing with. For me, it also gave me some of my power back to be in control of my treatment and have a good handle on my test results. As others have said, the second best thing you did was coming here. The people here are *amazing* and absolute founts of information. I have learned more here than from ANY doctor so far. In fact, my doctors are usually really surprised at how much I already know about why they say and do the things that they do.

Waiting is hard, but arming yourself with knowledge can help a little. Having people who understand and have been there can help a little. Nothing will ease the worry and fears until you know what you're dealing with and can... well... deal with it, but there are little steps that do help. Deep breaths, and hopefully you'll get some firm answers soon. Keep us posted.

Hugs and prayers,
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

cptango
Posts: 5
Joined: Tue Jul 05, 2016 5:54 pm

Re: Probably have colon cancer

Postby cptango » Mon Jul 11, 2016 1:26 pm

Thank you everyone for the support!

Just received a call with the results of my liver biopsy on Friday. It has been confirmed my liver mass/lesions are colon cancer that has spread. I am meeting with the oncologist tomorrow to discuss a treatment plan.

Best Regards

CPTANGO

DarknessEmbraced
Posts: 3548
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Probably have colon cancer

Postby DarknessEmbraced » Mon Jul 11, 2016 2:26 pm

I'm sorry you didn't receive good news.*hugs* Hope that your oncologist appointment goes well!*hugs*
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 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

kandj
Posts: 306
Joined: Sun Sep 27, 2015 11:29 am

Re: Probably have colon cancer

Postby kandj » Mon Jul 11, 2016 2:41 pm

cptango wrote:Thank you everyone for the support!

Just received a call with the results of my liver biopsy on Friday. It has been confirmed my liver mass/lesions are colon cancer that has spread. I am meeting with the oncologist tomorrow to discuss a treatment plan.

Best Regards

CPTANGO



First off, I am very sorry your on your diagnosis. Our family was in your shoes last year at this time. It is a scary time, especially when it comes out of the blue. You are going to be second guessing every move you have made in the last few years wondering if you could have found it earlier. Please be gentle to yourself. Imagine if you had a colonoscopy a few years ago and they had done the same biopsy and gave you the same results of no cancer? There is a lot of what ifs that will go through your mind, but right now, the only thing that matters is you have a diagnosis, you are going to get help, and you have to be strong. And when you can't be strong, come here, we will be strong for you.

As for the game plan, I would insist on a PET scan. It will make you feel better to know if it has spread beyond the liver. If your metastasis is contained to just the liver, I highly suggest you look into getting in to see Dr. Kemeny at Memorial Sloan Kettering Cancer Center. https://www.mskcc.org/cancer-care/doctors/nancy-kemeny

She is the go to doctor for CC that has spread to the liver. If you have multiple liver lesions that are inoperable right now, she is who can save your life.

If going to MSKCC is not something you are able to do, it sounds like you will be in good hands at at Mayo.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 11/2020 New liver met to deal with

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Probably have colon cancer

Postby aja1121 » Mon Jul 11, 2016 2:59 pm

I am sorry to hear about your results. When my husband was diagnosed, this board was the most helpful resource I found... I hope you find it helpful as well. Keeping you in my thoughts.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Probably have colon cancer

Postby midlifemom » Mon Jul 11, 2016 4:09 pm

Cptango,
So sorry you didn't get the desired results.
Take some time to adjust to this new way of living - because life will change. Some of it can be good changes - such as your relationships with people. People will amaze you - sometimes you need to keep a sense of humor to deal with some folks.
Anyway, it's good you have your onc appt so soon. Get your game plan going. Things are easier to accept if you are taking an active role instead of just more waiting.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

User avatar
WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Probably have colon cancer

Postby WriterGirl1969 » Mon Jul 11, 2016 4:56 pm

Sorry - dup post...
Last edited by WriterGirl1969 on Mon Jul 11, 2016 5:00 pm, edited 1 time in total.
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”


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