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Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola


Postby Joecool1983 » Tue Nov 07, 2017 3:40 am

So, I was supposed to go in for surgery this Wednesday, November 8. But, surgery is now off for the time being. My parents and I went to meet with the Surgeon, last Friday, to sign the consent forms. But, I had an emotional meltdown and a disagreement with my surgeon. I ended up cursing. My Surgeon got upset. Said I wasn't ready to make a decision. Told me to come back when I am ready, and got up and left the exam room.

So, the issue is, the surgeon wants to include a colostomy along with the Liver Resection to remove the Tumors. He says it's necessary so that a severe stricture, that I have had since after surgery last April, can properly heal. And he says I can't receive chemotherapy without the Colostomy.

I am dead set against a Colostomy. My mom and my cleaning lady/nurse both agree. I have some really severe psychological issues and hangups that would prevent me from being able to emotionally handle a colostomy.

The surgeon is refusing to do the Liver Resection without the Colostomy. He says it's all or nothing.

I have decided I am going to talk to some other surgeons and get more opinions.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Surgery

Postby Aqx99 » Tue Nov 07, 2017 8:20 am

I would also suggest that you meet with an oncology counselor. They are specially trained to help with the unique situations that cancer presents. Can I ask why you are dead set against a colostomy? I hated the idea of having to have an ileostomy, but realized that it was the only way to let my anastomosis properly heal. I hated dealing with it at first, crying every time I changed my pouch, but have since come to accept it.
Anne, 40
Stage IIIB Rectal Cancer
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

Posts: 614
Joined: Sat Feb 20, 2010 8:53 pm

Re: Surgery

Postby KimT » Tue Nov 07, 2017 9:35 am

You can refuse any treatment you don't want. But understand that the surgeon also does not have to do any surgery where he feels that will be harmful or have a low chance of success. Regardless you need to be treating medical professionals with a bit of dignity and respect. You could have refused the recommended surgery without cursing and yelling at the surgeon.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

Posts: 1835
Joined: Fri Jul 21, 2017 3:43 am

Re: Surgery

Postby NHMike » Tue Nov 07, 2017 11:09 am

My surgeon told me that she would tell me if it was to be definitely be a colostomy before the surgery based on imaging. She also said that she would make the decision when doing the surgery. That is the imaging could indicate that a colostomy was required and I would know before the surgery. Or it could be that it might be needed or not and that she would decide during surgery and that I would find out afterwards. And I agreed to that. Back a few months and I just wanted to survive. Minimizing function afterwards? That's a bit like bargaining with the devil. So I was mentally prepared for a colostomy well before my surgery.

She told me that my odds of a colostomy was 10% after she saw the imaging and she personally told me that I had a temp iliostomy when I saw her a day after surgery. But I'm dealing with the bag right now and I'm getting used to it.

I do not know much about your history and exactly what it is that you have and what it is that needs to be fixed but I'd guess that most or all surgeons will reserve the right to do a colostomy if they get in there and find stuff which requires it. In your case, your surgeon made that determination ahead of time. Maybe another surgeon can do it another way but they might also make the final decision while you are under.

Good luck on your course of action. I think that you should send a note of apology to your surgeon regardless.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Posts: 571
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Surgery

Postby MissMolly » Tue Nov 07, 2017 1:03 pm

Not to minimize your emotional angst regarding a potential colostomy, but I can share with you that I have had a permanent ileostomy for 6 years and it is no big deal.

Modern ostomy products are quite advanced. The seal with that skin is air tight and water tight. There is absolutely no odor. The pouches have a cloth cover, so there is no noise or rustling of plastic to be heard.

With a colostomy, you would have bowel movements that would match your current pattern. Most people with a colostomy use one time use, close ended pouches. After a bowel movement, take off the pouch and dispose of in a plastic bag. Attach a new pouch. And go on with your day. You need not think that you would be wearing a bag of poop on your abdomen 24/7.

Visit the United Ostomy Association forum and ask any questions you may have to others who have ostomies.

Best wishes to you in health,
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Posts: 980
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Surgery

Postby sadysue » Tue Nov 07, 2017 1:37 pm

I think everyone has "severe psycological" issues when first presented with the fact they might need to wear a plastic bag to hold their bodily waste. It's so un-natural. I had one after my surgery. My surgeon told me ahead of time that it was absolutely necessary for my butt to heal after my entire rectum was removed. Made sense. The bag made me positively crazy at first but once I got a good routine going after a few weeks, it was easier. I was happy that mine was able to be reversed 6-7 months after the initial surgery. If you are experiencing extreme stress over your situation, ask your doctor to prescribe something to help you get through it. You definitely should get more than one opinion, if only for your own peace of mind. And Joe, you do owe your doctor an apology - he was doing his job. Good luck to you!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012

Posts: 44
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

Re: Surgery

Postby Joecool1983 » Fri Dec 22, 2017 12:36 pm

So, update. I have a new Surgeon. I had been having severe pain in my right leg, from my right butt down to my ankle that was getting progressively worse. I could not put any weight on my right leg at all. I was stuck in bed. Unable to move. I was taking 15mg Oxycodone every 6 hours. I went to a pain management clinic and even got a nerve block injection in my spine. Nothing was really helping. I was also having severe frequent diarrheal movements. It all came to a head on Sunday November 26. About 11:30 at night I had uncontrolable Diarrhea all over the floor and it got all over my body. I got in the shower to Clean up. Luckily my nurse/caretaker Diane was there with me. I was starting to feel dizzy and lightheaded and called Diane's name. I turned off the water. Then, I passed out in the shower. I lost complete consciousness. Diane was able to grab me and hold me upright so I didn't fall. When I regained consciousness, everything was pitch black. I had temporarily lost my vision, my legs were all wobbly. Diane was sort of dragging me out of the bathroom towards the hallway. She said my eyes had rolled into the back of my head. I was totally spaced out. I could hear hear crying and screaming at me to stay with her. She got me into the hallway where I collapsed on a quilt and I regained my vision. Paramedics were were called. They transported me to BWMC(Baltimore Washington Medical Center) where I had been getting all of my Cancer treatment. I was in so much pain that night. The nurses were so sweet. The initial nurse was quick to order meds. Combo of Dilaudid and Ativan which took all the pain away. The Emergency Room Dr. Thomas was a jerk. He ordered a CT scan which was promptly performed. But, I guess he knows my Surgeon at BWMC, Dr. Boutros and had talked to him. He said if I was refusing Dr. Boutros' treatment plan he was cutting me loose. Discharge nurse was sweet. We talked about Piriformis Syndrome which I thought I had at the time. She said she had it and gave me recommendations. Fast forward to Friday December 1st. I met with my new Surgeon at Mercy Medical Center, Dr. Campell. We gave him all my records, CT scan reports, DVDs, and whatnot. It took him no time to figure out what had been causing all this severe pain. All my scans from BWMC have been detecting a thickening of the presacral tissue. It's been getting worse over time. The CT scan from the day I fell in the shower was it's peak. He correctly diagnosed it as a presacral abscess/infection. He thought it might be new cancer growth. He got me into the Interventional Radiologist, on December 11th, for a biopsy of the area(came back negative) and they drained 80ccs of bloody/pussy fluid from the area. He installed a JP drain in me which I have been wearing since. I am also on antibiotics. Right now the plan is to treat the abscess/infection and get it cleared up as soon as possible so he can eventually get into my Liver to remove the Tumors. This abscess/infection is something that has been going on for a year and half since June 2016. My Medical team at BWMC failed to identify this for so long. This is something that could have killed me. I feel like Dr. Campell saved my life.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

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