New - colonscopy done today

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DM wife
Posts: 4
Joined: Tue Sep 05, 2017 7:53 pm

New - colonscopy done today

Postby DM wife » Tue Sep 05, 2017 8:13 pm

Hi everyone.

This is actually my husband's story. He started having abdominal pain under his belly button it was really tender June of this year. Doctor sent him for an ultra sound and they called that he needed a CT scan because they saw a mass. Well CT scan diagnosed him with Diverticulitis with an 5cm abscess. Long story short he had two rounds of oral antibiotics and 5 day stay in the hospital with IV antibiotics. Dr. finally suggested he have a sigmoid resection to remove the diseased section. Colorectal doctor scheduled the surgery for tomorrow, buTT he wanted to do a colonscopy first. That was done today. He came out to tell me that he could not do the colonoscopy because there was a mass obstructing the sigmoid. He said he was 99% sure it was cancer. He took several biopsies, butt he still wants to go ahead with surgery only he would be treating cancer not diverticulitis.

We are left with a lot of questions. The main one being should he continue with surgery. Should we find out if it is malignant first? He said either way the surgery would be the same one. impression on the colonoscopy report (only paper I got today) says: Near Obstructing Lower Sigmoid Lesion

Any advise or thoughts would be greatly appreciated.

Annette
Caregiver to 46 yr old husband
DX: Stage IVb CC, positive lymph nodes, mets to liver and peritoneal cavity
Tumor Location: recto-sigmoid junct
Baseline CEA value: 8.5, rising every 2 weeks current 14.6
MSI status: unknown
KRAS/BRAF status:unknown
Primary surgery type: currently inoperable including primary tumor
Chemotherapy:FOLFOX + Avastin (5 cycles)

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: New - colonscopy done today

Postby jep » Tue Sep 05, 2017 9:37 pm

Hello....I'm sorry that you and your husband are going through this right now...my hubby and I had a similar experience in mid May....colonoscopy could not be completed due to an obstructing mass. I held out hope that it wouldn't be cancerous, but I
Could tell by the GI's reaction that he knew....My first question would be about the surgeon? How confident are you with this surgeon? My husband's GI initially told us that any general surgeon could perform this operation (maybe, but maybe is not good enough)...we went with a board certified colorectal surgeon with extensive experience....colonoscopy was on May 15 and we met with the surgeon the next day. He told my husband that he wasn't going home...we were going with him to the hospital and I believe he saved my husband's life....the tumor turned out to be more than 7 cm and my husband could have ruptured at any moment....it took 5
Hours, but the surgeon got everything out...even microscopically....first scan was clear and hubby has completed 2 rounds of chemo....recovery from surgery has been a long hell, but he's doing better now...I think he's had a tough time because what started as a robotic surgery turned manual once the team got in there and realized the size of tumor and extent of spread...this is a terrifying time and they're expecting you to make critical
Decision with only hours to think....I pray that all goes well with his surgery and please feel free to reply with questions as this sounds much
Like my husband's scenario.
Jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: New - colonscopy done today

Postby Lee » Tue Sep 05, 2017 9:49 pm

Hi Annette, So sorry for the reason you are here.

Just a minor question. Was this a colon rectal Dr who performed the colonoscopy? At the end of the day, these Dr.(s) know cancer when they see cancer. Something about being medically trained to know these things. You can wait for the official results, butt I know when I got scoped, they told me during the procedure, we found cancer. If he had rectal cancer, I would really be pushing for a board certified "colon rectal surgeon, butt it sounds like he has colon cancer. Generally surgery is the next step (with colon cancer vs rectal cancer. With rectal cancer, 5-6 weeks radiation, then surgery), followed up with chemo unless it's a stage 1 or early stage 2

How old is your husband? If he has siblings, they should be check too.

Follow your gut instinct. If you trust this Dr to do the surgery, go for it. If you have concerned,, get a 2nd opinion.

Once you get a staging, come here, we've all been in yours and DH shoes. KNOW they you and your husband are not alone here. You will find a lot of information and support here.

If you husband does have the surgery, make sure he walks, walks, walks, those hospital hall once out of surgery and when he get home. It really does help with the healing process.

And make sure he has comfortable walking slippers and a wrap around robe. He will be hooked up to many IV's in the begining. Being able to get robe off and on easy sure helps.

All the best to you and your husband.

Lee

P.S. Regardless of whether it's cancer or not, this mass does need to come out. It could be tomorrow or sometime in the next 2 weeks, butt like I stated above, these Dr.(s) know cancer when they see it.
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 - 16 years and counting!

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New - colonscopy done today

Postby DarknessEmbraced » Wed Sep 06, 2017 2:19 pm

I'm sorry you and your husband are going through this and hope you get answers soon!*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! :)

DM wife
Posts: 4
Joined: Tue Sep 05, 2017 7:53 pm

Re: New - colonscopy done today

Postby DM wife » Wed Sep 06, 2017 4:28 pm

He went into surgery but he did not remove the mass. He said when he went in there he found more and he took yo pathology and it is definitely cancer. He said because it's spread it's stage IV. I have so much going on that I don't know if I am making any sense. Now what? I called M.D. Anderson as we are in Texas and they will call me back. We went from Diverticulitis yesterday to stage IV cancer today.
Caregiver to 46 yr old husband
DX: Stage IVb CC, positive lymph nodes, mets to liver and peritoneal cavity
Tumor Location: recto-sigmoid junct
Baseline CEA value: 8.5, rising every 2 weeks current 14.6
MSI status: unknown
KRAS/BRAF status:unknown
Primary surgery type: currently inoperable including primary tumor
Chemotherapy:FOLFOX + Avastin (5 cycles)

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: New - colonscopy done today

Postby Lee » Wed Sep 06, 2017 7:47 pm

So sorry this is happening to you.

Where is the spread? Please know there are many cancer treatments across the USA that treat stage IV cancer aggressively. It is NOT the death sentence it once used to be. There are MANY people on this forum who were given months to live and are very much ALIVE and/or NED (No Evidence Detected) today. It is just a matter of finding the right hospital that will treat this aggressively.

Find out where the spread is at. I am assuming the liver because that is where colon cancer tend to go (vs rectal cancer that tends to met in lungs). Butt at the end of the day, cancer does not follow the rule book.

Yes go to MD Anderson, if they can not help, consider Sloan Kittering Memorial in New York City has had a lot of success with HAI pump (in liver) and many people being NED today.

If not already done so, a PET/CAT scan will give a true picture of where spread is. Also get an CEA baseline, A blood test).

I know this is a scary time, butt right now the unknown is the worst. Once you know what you are dealing with and more importantly a plan of actions, this will not be as scary. One day at a time and remember to breath.

Remember we are here to help you, YOU ARE NOT ALONE HERE.

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 - 16 years and counting!

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: New - colonscopy done today

Postby jep » Wed Sep 06, 2017 8:46 pm

Yes, I totally agree with everything Lee said.
Hearing that my husband is stage 4 was the worst moment of my life, but honestly, we've been fighting like hell ever since and we're still living life and raising our kids and taking it one day at a time. Knowing what we're up against helped us focus on the ultimate goal....one bit of advice for post-op....don't let them push solid foods on your husband before he's ready... I so wish that we had kept going with a liquid diet (high protein smoothies, smooth soups, etc.) for much longer than we did. I believe that's what caused a lot of set backs in my hubby's recovery. Many prayers to you and your husband.
Jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: New - colonscopy done today

Postby Lee » Wed Sep 06, 2017 10:35 pm

jep wrote:Yes, ...don't let them push solid foods on your husband before he's ready... I so wish that we had kept going with a liquid diet (high protein smoothies, smooth soups, etc.) for much longer than we did. I believe that's what caused a lot of set backs in my hubby's recovery. Many prayers to you and your husband.
Jep


Agree!!! If some of these doctors had to live with their own advice to patients, it would be TOTALLY different after the fact for them. I've been down this road twice now (surgery wise). LOW FIBER DIET for at least the next 2-3 weeks. Than gradually add new foods and see how it goes. At 2 weeks it may be too soon. I was 2 weeks out from my first surgery, had 2 slices of pizza, thought I was gonna die (cheese). The pain!!! 2 weeks later, no problems.

LOW FIBER DIET! Even if they don't talk about it. Look it up on Internet or email me.

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 - 16 years and counting!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: New - colonscopy done today

Postby Lee » Sat Sep 09, 2017 3:58 pm

How is your husband doing?

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 - 16 years and counting!

DM wife
Posts: 4
Joined: Tue Sep 05, 2017 7:53 pm

Re: New - colonscopy done today

Postby DM wife » Sat Sep 09, 2017 6:18 pm

We came to MD Anderson because he had been constipated and I didn't want to risk anything happening with bowel obstruction. They admitted him. He has colon cancer metastases in peritenium (I'm not sure if that's how it is said) but it is stage IV. Several teams have come in to make assessments. But, then Oncologist told us they do not see that they can surgically remove all the cancer. He suggests chemotherapy back home. He also told us that would be treating cancer not curing it. He gave us life expectancy. He said he would call the oncologist back home to see if he can get started asap.
They are still running tests, but I'm not sure if these were ordered prior to oncology coming in.
I'm very confused seems like it's not enough?
Caregiver to 46 yr old husband
DX: Stage IVb CC, positive lymph nodes, mets to liver and peritoneal cavity
Tumor Location: recto-sigmoid junct
Baseline CEA value: 8.5, rising every 2 weeks current 14.6
MSI status: unknown
KRAS/BRAF status:unknown
Primary surgery type: currently inoperable including primary tumor
Chemotherapy:FOLFOX + Avastin (5 cycles)

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New - colonscopy done today

Postby DarknessEmbraced » Sun Sep 10, 2017 10:14 am

I'm sorry you and your husband are going through this and hope you get answers soon!*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! :)

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: New - colonscopy done today

Postby Lee » Sun Sep 10, 2017 12:38 pm

DM wife wrote: . . . Several teams have come in to make assessments. But, then Oncologist told us they do not see that they can surgically remove all the cancer. He suggests chemotherapy back home. He also told us that would be treating cancer not curing it. He gave us life expectancy.


I am so sorry for all that you and your husband are going through. My opinion, the Onc should not be giving out surgical advice. That type of advice should be coming form the surgeon only. The Onc should only be giving advice for chemo, etc.

I'm not sure how extensive the spread is, butt there is a surgical procedure where they can go in and remove the cancer cell from the peritenium area. I suspect that is why they are running test on him.

The constipation could be caused by pain medicine if he taking them. Is he on solid foods?

Again wait to hear what the surgical team says.

You and your husband are in my thoughts and prayers.

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 - 16 years and counting!

DM wife
Posts: 4
Joined: Tue Sep 05, 2017 7:53 pm

Re: New - colonscopy done today

Postby DM wife » Sun Sep 10, 2017 3:47 pm

Thank you.

He is getting discharged today. We need to get everything set up back at home for treatment. So, I will start doing that tomorrow morning.
It's so much to process. We decided to take it one day at time. Let's get home. And tomorrow morning we start again.
Caregiver to 46 yr old husband
DX: Stage IVb CC, positive lymph nodes, mets to liver and peritoneal cavity
Tumor Location: recto-sigmoid junct
Baseline CEA value: 8.5, rising every 2 weeks current 14.6
MSI status: unknown
KRAS/BRAF status:unknown
Primary surgery type: currently inoperable including primary tumor
Chemotherapy:FOLFOX + Avastin (5 cycles)


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