Mass in cecum / liver mets

Please feel free to read, share your thoughts, your stories and connect with others!
ldbenz
Posts: 12
Joined: Thu Nov 30, 2017 8:42 pm

Mass in cecum / liver mets

Postby ldbenz » Sat Dec 09, 2017 10:26 am

Good morning all,

Newbie here. Reading the unity displayed among these forums is so helpful and tells me I have found a good place to be.

I am a 53 year old mother of 2 boys (23 and 13) and a special education teacher working with underprivileged, low income children. My diagnosis of Stage 4 came this past month with a presentation of a 5 cm mass in the cecum. I had no symptoms except for fatigue and went for a colonoscopy only because it was on the list of to do's for my age. Upon waking up from the mild sedation of the colonoscopy, my GI doctor told me there was a mass that did not look cancerous but needed to be removed. I immediately told him I was going to UPenn.

I requested a CT Scan from his office (to give me something to do while I was waiting for the consult appointment at UPenn) and the CT Scan revealed 4 liver mets.

Here we go...

53 yr. old female
Routine colonoscopy 10/2017
5 cm mass in cecum
CT Scan w/ contrast 11/2017 4 liver spots
CEA: 7.6
LIver Biopsy: 12/20/17
Last edited by ldbenz on Sun Dec 24, 2017 11:35 am, edited 2 times in total.

gfpiv
Posts: 157
Joined: Tue May 25, 2010 9:24 pm

Re: Mass in cecum / liver mets

Postby gfpiv » Sat Dec 09, 2017 2:17 pm

You may want to consider looking into HAI / hepatic pump, especially if your met(s) is/are liver-limited. It can really have dramatic results, and it's the main reason I'm still here today. Most oncs that don't know much about HAI will discourage looking into it, voicing doubts on effectiveness. However, at hospitals with expertise in the treatment (esp. Memorial Sloan Kettering in NYC), they are well aware of its effectiveness. You may want to search this forum on "HAI"; I'm sure there are hundreds of posts about it. Or feel free to PM me. Best wishes in your treatment.

-Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

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

Re: Mass in cecum / liver mets

Postby Lee » Sun Dec 10, 2017 6:12 pm

Hi and welcome. Glad you found us, yes you will find a lot of information and support here.

Sounds like you are in good hands. Know that are many options available where people are living long lives with a stage IV diagnoses. Many of the stage IV folks are NED (No Evidence Detected), so do not give up the hope.

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!

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Mass in cecum / liver mets

Postby stu » Sun Dec 10, 2017 6:21 pm

Hi ,
A big welcome .
I will let you read my signature on behalf of my mum . Hope it gives you some encouragement. You have been given some good advise . It’s a lot about good clinical decisions and taking the windows of opportunity that present themselves.
I wish you every success going forward .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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

Re: Mass in cecum / liver mets

Postby DarknessEmbraced » Sun Dec 10, 2017 6:55 pm

I'm sorry for your diagnosis and hope you won't have to wait long for answers!*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! :)

ldbenz
Posts: 12
Joined: Thu Nov 30, 2017 8:42 pm

Re: Mass in cecum / liver mets

Postby ldbenz » Sun Dec 10, 2017 10:09 pm

Thank you new friends.

I know life as I know it is going to change drastically and I'm prepared for the fight. Dr. at UPenn has already recommended the HAI as a course of action. The new Chair of the Department just came to UPenn from Sloan. Win/win.

Just need to get an appointment with the oncologist there and see what she says about systemic chemo first, during or after. Dr. said the four mets look resectable, which I know is good news. About a third of the liver needs to go as well as the ascending colon. Wish he had felt a laparoscopic surgery would be do-able but it doesn't look that way. Open surgery seems like it will be so much harder to gain strength back.

As blessed as I feel to have the team I do, I'm concerned about the support staff at UPenn. Although I hate to post anything negative, my scheduled appointment with the oncologist wasn't marked down and has delayed the consult. I'm hoping it gets cleared up this week and we can get some definitive plans.

This forum is by far the best I have come across and I am looking forward to the wealth of knowledge it has to offer. It is my hope that my journey can perhaps help someone else and that I can become part of the family on this forum of support, experience and stories.

Searching now for more HAI stories -

If I don't reply immediately to anyone who is kind enough to respond to my post, it is only because I need to educate myself on how to properly navigate this site.

Thank you and warm wishes for a wonderful Holiday Season.

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Mass in cecum / liver mets

Postby Robino1 » Mon Dec 11, 2017 7:32 am

I really hate to say "welcome to the forum" since the reason you found it really sucks. I will say that I am glad you found us.

It sounds like you have a good plan in place and a nice fighting attitude :)

I don't have any thoughts to add at the moment. But if something crops up that I have personal experience with, I'll add my 2 cents in. ;)

It takes a few posts before they are not vetted by admin first. Gotta keep spammers out somehow.

So... Hi! :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Maddielolo
Posts: 140
Joined: Tue Apr 08, 2014 4:57 pm

Re: Mass in cecum / liver mets

Postby Maddielolo » Tue Dec 12, 2017 12:34 am

DeMatteo is one of the best period. Glad he is involved. Whoever the oncologist, maybe you could see Kemeny at MSKCC so she manages hai chemo, and have Penn onc manage systemic chemo.

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

Re: Mass in cecum / liver mets

Postby Lee » Tue Dec 12, 2017 12:39 am

You might find this sticky helpful. First page and last page.

viewtopic.php?f=1&t=5366

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!

ldbenz
Posts: 12
Joined: Thu Nov 30, 2017 8:42 pm

Re: Mass in cecum / liver mets

Postby ldbenz » Tue Dec 12, 2017 6:40 am

I feel bad for not knowing how to individually reply (thank) friends that have commented. Work in progress.

Thank you for all the input. Reading each persons signature is interesting and informative.

Although I still do not have an appointment with an oncologist at Penn, meeting with Kemeny at Sloan may be tricky. Treating there would be almost impossible. I did hear from the nurse navigator late last evening and she promised me she would call me with the first cancellation they have. Crazy.

My plan is to set up secondary shop here in NJ at The Cancer Center of RWJ (Rutgers) for systemic chemo but only under the guidance, referral and acceptance of whomever my onocologist at Penn will be. Sister and brother both had cancer (not colon) and we found it was less stressful to do a local drip, Fingers crossed. Lets get a damn appointment before the Holiday!'

Thank you for posting the link with the abbreviations! Getting more and more in the know everyday :-))) Simple pleasures.

Question please - nurse navigator said probably systemic chemo first for 2-3 months. Can anyone please share there chemo cocktail and regimen? Trying to figure out what to expect. Dematteo said he will do a chest port.

Warm gratitute...

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Mass in cecum / liver mets

Postby Beckster » Tue Dec 12, 2017 1:23 pm

ldbenz wrote:I feel bad for not knowing how to individually reply (thank) friends that have commented. Work in progress.

Thank you for all the input. Reading each persons signature is interesting and informative.

Although I still do not have an appointment with an oncologist at Penn, meeting with Kemeny at Sloan may be tricky. Treating there would be almost impossible. I did hear from the nurse navigator late last evening and she promised me she would call me with the first cancellation they have. Crazy.

My plan is to set up secondary shop here in NJ at The Cancer Center of RWJ (Rutgers) for systemic chemo but only under the guidance, referral and acceptance of whomever my onocologist at Penn will be. Sister and brother both had cancer (not colon) and we found it was less stressful to do a local drip, Fingers crossed. Lets get a damn appointment before the Holiday!'

Thank you for posting the link with the abbreviations! Getting more and more in the know everyday :-))) Simple pleasures.

Question please - nurse navigator said probably systemic chemo first for 2-3 months. Can anyone please share there chemo cocktail and regimen? Trying to figure out what to expect. Dematteo said he will do a chest port.

Warm gratitute...


I see you are from NJ ..... There is Penn oncologists in Cherry Hill. My girlfriend got an appt quickly. You can start there and then you are in the system for Phila.
My tumor was also in the cecum, Stage 2A with no symptoms. I go to MD Anderson at Cooper.... that might be another suggestion. My oncologist is a colon cancer specialist...Dr Morrison. This might give you another option.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

ldbenz
Posts: 12
Joined: Thu Nov 30, 2017 8:42 pm

Re: Mass in cecum / liver mets

Postby ldbenz » Wed Dec 13, 2017 6:28 am

Thank you Beckster. I am looking into Virtua in South Jersey which is advertising a Penn connection.

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Mass in cecum / liver mets

Postby Beckster » Wed Dec 13, 2017 3:23 pm

ldbenz wrote:Thank you Beckster. I am looking into Virtua in South Jersey which is advertising a Penn connection.



Yes....they have offices in Washington Twp and Voorhess. In fact my girlfriend is head of the radiology at the Washington Twp office. I have 3 friends that go there. If you want, I can ask her which dr you should go to. Let me know and I will contact her. Your surgery though will be in Phila.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

AlexMichelle
Posts: 43
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Re: Mass in cecum / liver mets

Postby AlexMichelle » Wed Dec 13, 2017 4:17 pm

I had open colorectal cancer surgery five weeks ago and it was not as bad as I had expected. I was in hospital 9 days..... 7 days to start having bowel movement and next day white blood count elevated... on 9th day it was normal. I didn't have anyone taking care of me at home and have been very mobile since the day after surgery. Was on lots of pain Meds at hospital which kept me comfortable as long as I didn't let too much pain pass. Was on Percocet for five days at home and nothing after that.

I walked a lot at the hospital which helped me progress quickly. My incision was closed with glue and it has healed shockingly quickly. I would highly recommend that you walk as much as possible now and do as much abdominal work as you can now because the stronger you are going into the surgery, the faster recovery you will have. I started driving again after three weeks open surgery and have been very active. One big negative has been that my bowels are moving too frequently so I feel like I need to be near a toilet. Right now I am having about 10 to 12 bowel movements per day but the doctor said that should go back to normal soon. Before surgery I was on a low residue diet which I highly recommend before surgery and was just taken off of it a few days ago. Before I went on the low residue diet, I was eating a very high fiber diet and the CT scan showed that all of the fiber was backing up behind the tumor causing me a lot of discomfort.

Anyway, I just wanted to let you know that I did have the open surgery like you're going to have, and was nervous about it like you, but it's not as bad as one would think. I was so worried I would be in severe pain. The hospitals are so good about keeping the pain under control and it only lasts a couple of weeks. I have started putting vitamin E oil on my incision and it looks really good. It begins about 3 inches above the bellybutton and goes down much further than I had expected into the pelvic region. They actually shaved me during surgery and I was quite shocked to see how low it went but Surgeon told me by doing that he was able to remove all of the cancer In colon and rectum with a nice clear margin. I also had a cyst on my liver which he removed, but it did not end up being malignant. Be very pushy in getting your appointments. I called every day and told them that if they had a cancellation to put me in. It very much expedited the process even though I knew I was being a pain. Good luck.
Last edited by AlexMichelle on Fri Dec 15, 2017 1:49 am, edited 1 time in total.
F 9/14/17 blood, 10/05/17 endoscopy/colonoscopy 4.5 cm tumor lower colon/upper rectum/left side -11/09/17 open Rectosigmoid Colon Resection remove invasive adenocarcinoma, moderately diff marg clear.15 lymph nodes neg malignancy. benign liver w/fibrous nodule- rectum at 15cm Tumor location: above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm. pT2pNO Stage 1. No Lynch

ldbenz
Posts: 12
Joined: Thu Nov 30, 2017 8:42 pm

Re: Mass in cecum / liver mets

Postby ldbenz » Wed Dec 13, 2017 8:54 pm

Thank you again for any replies.

I have made contact with The Regional Cancer Center at Virtua and I'm waiting for a reply regarding ONLY getting systemic chemo there. The registration nurse said she didn't think that was possible which was discouraging because I had a family member with an unrelated cancer who was primarily treated at UPenn but chose to get her chemo locally - which my doctors at UPenn are actually advocating. We'll see

Blood work was posted today and all numbers are normal except for the CEA which is 7.6. Not too high but out of normal range.

To hear that the open procedure was manageable is very good to hear. I guess it is what it is and many people go through it and come out ok - with a similar story like yours. Promising to hear.

Thank you <3.
Last edited by ldbenz on Sat Dec 16, 2017 10:42 am, edited 1 time in total.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 111 guests