Having open colorectal surgery 11/09/2017

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AlexMichelle
Posts: 22
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Having open colorectal surgery 11/09/2017

Postby AlexMichelle » Fri Nov 03, 2017 10:02 pm

Hello, I have been reading everyone's posts trying to learn as much as I can. On Oct 5, 2017 I was diagnosed with colorectal cancer during a colonoscopy which I had because I started seeing blood three weeks prior. As someone who has been a vegetarian for 42 yrs, exercises regularly, is at a healthy weight, I was quite shocked to find out I had cancer. I was supposed to be low risk and was told by my general doctor not to have a colonoscopy because the risks outweigh the benefits in my case. Boy, was she wrong! Instead she had me do fecal occult testing each year. I am so angry at myself for listening to her. Of course, now I wish I had a colonoscopy years before.

I am currently upset that the doctors have taken so long to get me into surgery which will be this Thurs, Nov 9, 2017. I have had blood work, CT scan, MRI all of which do not show spread, but I know that we will not know for sure until the lymph node pathology. My cancer surgeon said he must have another surgeon assist so we have been waiting for them to be able to coordinate their schedules. :( It will be 5 weeks from diagnosis to surgery, and as I know you all can relate, I feel like each day they are giving the cancer a chance to grow. The surgeon is doing "open" surgery because the 4 cm cancer is in the lower colon and upper rectum and he thinks with the open surgery it will give me a better chance to avoid a colostomy. If any one here has had the open surgery, could you please share your experience in terms of recovery the day of surgery and going forward. I was really hoping for laparoscopic surgery, as I know that the pain is not as severe and the recovery is easier, but I have to trust that he is doing the right thing in terms of being able to get a lot of margin around the tumor and avoid the colostomy if possible.

The most difficult part so far has been seeing how sad my daughters are. I am praying that the surgery goes well this Thurs and that there are no involved lymph nodes. Any advice you can give me prior to surgery so that I am better prepared physically and mentally would be sincerely appreciated.
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 for malignancy Liver biopsy:benign liver w/fibrous nodule with foreign body - NED - rectum at 15cm Tumor location: completely above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm Pathology staging: pT2pNO Stage 1 CT scans ev 3 mths 5 yrs. colonoscopy ev yr

AlexMichelle
Posts: 22
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Re: Having open colorectal surgery 11/09/2017

Postby AlexMichelle » Fri Nov 03, 2017 11:49 pm

HI again, I forgot to mention in my first post that in Feb 2017 I had to have gallbladder removed because for 3 months I had been having extremely painful gallstone attacks. Was recovering from that surgery when 4 wks later I started having horrible gallstones attacks again! After a week in the hospital a ERCP was performed April 2017 to remove six more stones stuck in the bile duct. A bile duct syphincterotomy was performed so that any future stones would fall out of the bile duct, with a total of 32 stones removed between the two procedures. I wonder if the bile issues had anything to do with getting colon cancer? I was nauseated the entire year, but I assumed that was from the gallstones and two surgeries to remove them and not because I had colon cancer, but now I know it could have been because of the colon cancer. This week will be the 4th time since Feb that I have been under full anesthesia. P :cry:

They will be testing me for Lynch syndrome since my mother died quickly at age 43 from malignant brain tumor.

Any words of wisdom you can share for my open surgery in five days would be appreciated. I'm so nervous. My anxiety level is so high, but I keep trying to take deep breaths. I'll be sure to post from the hospital so others can know what to expect.
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 for malignancy Liver biopsy:benign liver w/fibrous nodule with foreign body - NED - rectum at 15cm Tumor location: completely above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm Pathology staging: pT2pNO Stage 1 CT scans ev 3 mths 5 yrs. colonoscopy ev yr

Aqx99
Posts: 245
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Having open colorectal surgery 11/09/2017

Postby Aqx99 » Sat Nov 04, 2017 7:56 am

Is your surgeon a board certified colorectal surgeon? If not, I highly recommend you find one to perform your surgery. It is delicate work to operate in the pelvic region and you want an expert doing it.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

rockhound
Posts: 34
Joined: Fri Jul 14, 2017 5:00 pm

Re: Having open colorectal surgery 11/09/2017

Postby rockhound » Sat Nov 04, 2017 9:31 am

AlexMichelle wrote:Hello, I have been reading everyone's posts trying to learn as much as I can. On Oct 5, 2017 I was diagnosed with colorectal cancer during a colonoscopy which I had because I started seeing blood three weeks prior. As someone who has been a vegetarian for 42 yrs, exercises regularly, is at a healthy weight, I was quite shocked to find out I had cancer. I was supposed to be low risk and was told by my general doctor not to have a colonoscopy because the risks outweigh the benefits in my case. Boy, was she wrong! Instead she had me do fecal occult testing each year. I am so angry at myself for listening to her. Of course, now I wish I had a colonoscopy years before.

I am currently upset that the doctors have taken so long to get me into surgery which will be this Thurs, Nov 9, 2017. I have had blood work, CT scan, MRI all of which do not show spread, but I know that we will not know for sure until the lymph node pathology. My cancer surgeon said he must have another surgeon assist so we have been waiting for them to be able to coordinate their schedules. :( It will be 5 weeks from diagnosis to surgery, and as I know you all can relate, I feel like each day they are giving the cancer a chance to grow. The surgeon is doing "open" surgery because the 4 cm cancer is in the lower colon and upper rectum and he thinks with the open surgery it will give me a better chance to avoid a colostomy. If any one here has had the open surgery, could you please share your experience in terms of recovery the day of surgery and going forward. I was really hoping for laparoscopic surgery, as I know that the pain is not as severe and the recovery is easier, but I have to trust that he is doing the right thing in terms of being able to get a lot of margin around the tumor and avoid the colostomy if possible.

The most difficult part so far has been seeing how sad my daughters are. I am praying that the surgery goes well this Thurs and that there are no involved lymph nodes. Any advice you can give me prior to surgery so that I am better prepared physically and mentally would be sincerely appreciated.


I can't speak much to the open surgery because mine was done robotically, but I would not worry too much about your timing (I know easier said than done - I was fairly concerned when I was going through all that earlier this year!). I was diagnosed last Dec. and did not have surgery until May (after 6 weeks of chemo/rad, plus 4 weeks of post chemo/rad recovery). The whole process is not fast, but the tumor typically does not grow fast either.. I've also had gallbladder removal (lap) and the rectal resection was definitely more intense.

The whole thing caught me by surprise also- I exercise regularly, eat well, etc... can't do much about genetics though (in my case Lynch). I second the comment about board certified colorectal surgeon...
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI-H
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - Clear CT

AlexMichelle
Posts: 22
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Re: Having open colorectal surgery 11/09/2017

Postby AlexMichelle » Sun Nov 05, 2017 2:41 am

Thank you for your replies. I am a nervous wreck. So much anxiety. I was hoping for laparoscopic surgery. I know the open surgery has a difficult recovery. If anyone can share their experience with open surgery I would be grateful. I feel like five weeks from diagnosis to surgery without any treatment in between is too long. Hope I am wrong. Praying for good news and to be able to handle the pain.
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 for malignancy Liver biopsy:benign liver w/fibrous nodule with foreign body - NED - rectum at 15cm Tumor location: completely above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm Pathology staging: pT2pNO Stage 1 CT scans ev 3 mths 5 yrs. colonoscopy ev yr

tarheelmom
Posts: 163
Joined: Mon Mar 07, 2016 5:55 pm

Re: Having open colorectal surgery 11/09/2017

Postby tarheelmom » Sun Nov 05, 2017 12:07 pm

Echo the suggestion for finding a board certified colorectal surgeon. Many of us have had tumors very close to the anal verge and have: had a laparoscopic procedure and avoided a colostomy. Colon cancer is generally very slow growing so you may want to search out a second opinion at a major cancer center.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

tammylayne
Posts: 2167
Joined: Fri Jul 16, 2010 9:24 am

Re: Having open colorectal surgery 11/09/2017

Postby tammylayne » Sun Nov 05, 2017 2:25 pm

I have had both types of resections, and while open is more intense, at the 8 week mark I felt prettymuch the same. Stay ahead f your pain esp in the early days, do not wait until it is unbearable. There are no hero stickers. You can ask for break through pain meds if you need them in between doses. Get up and move, even when you dont want to. Pain meds will help with that. Dont overdue it, but you need to move to get things back to normal. Hydrate. Eat properly, hard after surgery when you have little appetite, but important for recovery. Be careful not to strain abdomen, hernia risk is very real. Talk to your docs and listen to what they say. Restrictions are not forever.

Most importantly, be kind to yourself. You will get to the otherside...
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: Having open colorectal surgery 11/09/2017

Postby Lee » Sun Nov 05, 2017 3:14 pm

Another one who is going to suggest board certified colon rectal surgeon.

I was cut open (13+ yrs ago). I had no options, at that time, only stage I or II could get lapro. Best advice I can give you, is walk, walk, walk those hospital halls. It's gonna hurt at first, butt it really does help in the healing process. Bring a long wrap around robe and good walking slippers.

The first few weeks following surgery, you will experience some pain. It was about a month out from surgery when you begin to feel something close to normal. At the 6 week mark, I was pretty much back to my regular self. Again walking is very important in the healing process, so continue walking when you are home.

I had my surgery Monday morn and was released Friday night. Once home, I used Motrin to control my pain.

Good luck, hope this helps. Ask any questions you might have.

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!

Valkara
Posts: 2
Joined: Sun Nov 05, 2017 4:37 pm
Facebook Username: Bobbie Jean Valle
Location: Texas

Re: Having open colorectal surgery 11/09/2017

Postby Valkara » Sun Nov 05, 2017 4:55 pm

I am having laproscopic this coming Tuesday Diagnosed in April of this year 2017 radiation for 28 days in June - July of 2017 and now surgery. I was suppose to have surgery on the 22nd of September, but due to insurance issue could not. I am happy to finally be getting the cancer cut out. But not excited about a bag or chemo next. Do you know how much rectum you will have left? They are telling me two inches and will be able to reverse the ileostomy after chemo.

menreeq
Posts: 40
Joined: Fri Jun 30, 2017 10:26 am

Re: Having open colorectal surgery 11/09/2017

Postby menreeq » Sun Nov 05, 2017 4:56 pm

Hello --

Sounds like the mass is rectosigmoid but they think it's COLON and not RECTAL. Otherwise you would be having neoadjuvant chemoradiation. Given its location, it is unclear to me why you need to have open surgery. Is the surgeon a board certified colorectal surgeon? If not, I would suggest finding one in your area and going in for a consult.

I had a 5.5 cm rectosigmoid mass. It was initially unclear if it was colon or rectal, and that's a key thing to differentiate. Two GI docs scoped me and they were split 50/50. Imaging favored colon over rectal. It was my colorectal surgeon who was the deciding factor. My surgery was laparoscopic. Open is not done that often anymore because lap or robotic means faster healing, less pain, better cosmetic result. Robotic is typically preferred for low rectal, but it matters who is doing it. You want someone who has lots of experience with the machine.

As for time, waiting sucks. But all my docs said the mass had probably been there for 5-10 years, maybe just a small polyp 10 years ago. Take the time to get the best surgery and have the best team on board.
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41, mom to 5 & 2yo girls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics counseling negative for mutations, 4 VUS
Started Xeloda monotherapy 8/13/17

NHMike
Posts: 544
Joined: Fri Jul 21, 2017 3:43 am

Re: Having open colorectal surgery 11/09/2017

Postby NHMike » Mon Nov 06, 2017 1:25 am

I had Lap Assisted Open a week ago for a LAR. Board certified surgeon at a top hospital with robotic experience. I started walking the day after surgery but maybe 1/8 mile. Then I picked it up quite a bit but had pain sometimes when walking. Coughing was painful and still is and I have instructions not to lift more than five pounds the first week and ten the second. I didn’t bother filling the Oxy prescription and haven’t taken anything for pain since coming home. I have five inches of my belly stapled together.

I did really tough abs workouts before surgery, along with core, strength, flexibility and balance workouts prior to surgery and I believe that these have made recovery easier. But I have to take it slowly. I’d like to go out and run but no way for a while.
Last edited by NHMike on Mon Nov 06, 2017 7:21 am, edited 1 time in total.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

AlexMichelle
Posts: 22
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Re: Having open colorectal surgery 11/09/2017

Postby AlexMichelle » Mon Nov 06, 2017 3:50 am

Thank you for all of the above advice. So greatly appreciated as I do better when I am prepared with all the facts as to what to expect. I will be diligent about walking every chance I can. That will be my major focus.

Yes my surgery is being performed at a major cancer center by colorectal surgeon who is also an oncology surgeon. He has a general surgeon coming in to assist him. He is extremely cautious and prepared. At first he told me he thought he would be doing the surgery laparoscopically but after the cancer board had their meeting to discuss my case he decided to do open surgery. The major cancer center has everything within it's walls that one would need to fight cancer. The oncologists, the surgeons, the surgery center, the chemo units and the radiation units are all in the same building. He said we will not know if I need chemo and radiation until after they receive the lymph node pathology. At this point my CT scan and MRI came back looking clear but he said we won't know for sure until the pathology after Thursday. I was offered to participate in a major clinical trial where they would do radiation first but I declined the trial. After I declined it, my surgeon told me he agreed that my surgery will go better without having to deal with some of the damage that the radiation would cause. I'm not sure about all the particulars of the clinical trial because I was not interested in that I wanted surgery first and ASAP.

I continue to bleed a lot every day and see lots of large blood clots. I am drinking five containers of Ensure Plus every day, per the cancer centers dietitian, to make sure that I don't lose weight and to get a minimum of 70 g of protein per day to prepare my body for surgery. I have put on 5 pounds in the last three weeks by doing this, Plus I have continued to lift light weights and do a strenuous abdominal work out so I feel like I'm going into surgery this week as prepared as I can. Thank you to all of you who took time to enlighten me for this very scary journey.
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 for malignancy Liver biopsy:benign liver w/fibrous nodule with foreign body - NED - rectum at 15cm Tumor location: completely above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm Pathology staging: pT2pNO Stage 1 CT scans ev 3 mths 5 yrs. colonoscopy ev yr

NHMike
Posts: 544
Joined: Fri Jul 21, 2017 3:43 am

Re: Having open colorectal surgery 11/09/2017

Postby NHMike » Mon Nov 06, 2017 7:32 am

It sounds like you're doing everything that you can to prepare for this and that you have the good people to do the surgery. I put on some weight before the surgery as well and it's coming off because I don't feel like eating so much. I had 200-400 calories the day after surgery. I don't know of anyone that's gained weight after a surgery as the body shuts down the digestive system a bit to work on repair.

One thing that did help me a lot was iCloud Notes on Apple Devices. I had to keep track of notes, directions, maps, instructions, offices, phone numbers, contacts and diaries and having an App to do this made life a lot easier. I imagine you already had the pre-op meeting and received your supplies, medications and instructions for the preps. I did timelines for all of that stuff and then added in the travel and other logistics to get to the hospital as there are several things to do the morning of the surgery.

For my surgery, there was my surgeon, a resident, and an intern. There was also another surgeon and I think that she was attached to the Operating Room as opposed to the surgical specialist group.

I've documented the week before, the run-up and surgery and three days after surgery for me here: viewtopic.php?f=1&t=58447&start=240

Surgical results vary widely but what I've observed is that those that are active and fit seem to have an easier time of it.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

AlexMichelle
Posts: 22
Joined: Sat Oct 28, 2017 11:54 am
Location: California

Re: Having open colorectal surgery 11/09/2017

Postby AlexMichelle » Mon Nov 06, 2017 1:16 pm

NHMike, all of your notes and organization is wonderful. So much to learn about. Yes, I have already had pre op meeting and have the drink solution. I will add water to it Tues night and refrigerate so it then so it will be cold when I begin drinking it Wed at noon. I must leave for surgery at 6 am Thursday morning. When I just did this for colonoscopy, I never dreamed that I would be doing the dreaded prep again 5 weeks later.

With open surgery, I am wondering how long I will be in hospital. I'm guessing six or seven days? The last time I was in the hospital (7 mths ago), pulling the IV behind me to go to the toilet and trying to walk the hallways with it was not easy. How long do you think I will be connected to an IV? I know that once I am not connected to anything, I will have a much easier time being active. When I I had bile duct surgery a few months ago, I was in the hospital six days on IV, nothing by mouth, and I lost quite a bit of weight, so that is why this time I have intentionally put on weight prior to going into surgery by drinking Ensure Plus. Have also been trying to get core as strong as possible.

I'm extremely nervous, which I know is normal. Must soldier through and be strong to handle whatever comes my way. For each person here who has taken time to shed some light, thank you. Any and all advice is much appreciated.
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 for malignancy Liver biopsy:benign liver w/fibrous nodule with foreign body - NED - rectum at 15cm Tumor location: completely above peritoneal reflection 4.2 x 2.7 cm Tumor inv muscularis closest 1.5 cm Pathology staging: pT2pNO Stage 1 CT scans ev 3 mths 5 yrs. colonoscopy ev yr

NHMike
Posts: 544
Joined: Fri Jul 21, 2017 3:43 am

Re: Having open colorectal surgery 11/09/2017

Postby NHMike » Mon Nov 06, 2017 2:19 pm

I entered the hospital on Monday morning and left early Friday afternoon. So four nights. I thought that was just right for me as I was then comfortable with leaving. Some asked me if I wanted to leave on Thursday but I didn't want to because of an intermittent dull ache issue that hadn't been explained. I have heard of people staying up to six days but those were with complications. The standard in the US seems to be four nights, fewer if you do really well, a day or two more if you have additional problems.

What did your surgeon tell you for how long you're staying as he/she is a very big input for this?

I think that they took me off the IV on the third day. Here's what I had attached to me at the peak:

- IV
- Emergency IV ports (just stuck into me, no tubes)
- EKG leads
- Oxygen
- Drainage tube
- Ostomy bag
- Stoma tube to hold it outside the body
- Catheter
- Ureter Stents drain

They had a nurse assist me whenever I was walking to hold things. I usually pushed the IV stand. Then they gradually peeled things off over time and it got easier.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy


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