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New Member and a Question

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hello everyone,

I joined this site a few days ago and I have read some of the topics. You guys are so inspiring and brave to talk about personal battles and being there for one another. 

They found a malignant tumor in my sigmoid colon during my colonoscopy about 2 weeks ago. The tumor actually obstructed the camera scope to go further. I have been going to the doctors' appointments with blood tests, CT scan of the abdominal area to see if the tumor has spread to my nearest organs.  I have another CT scan for the chest area this coming Monday. Yesterday I even had the genetic counseling/testing for the Lynch Syndrome and that result won't be available until next month.

Good news is from the CT scan (abdominal area) and the pathology report stated that my tumor has not been matastisize.  All my organs by my abdoinal area are good. Also after the examination from my surgeon on this past Tuesday, he said the tumor is intact in my colon, has not affected my rectum and he said the surgery will be done easily. He still wanted me to have the CT scan for the chest area just to rule it out. 

My question is: Has anyone here had a total colectomy? I have to decide whether I should just have the affected sigmoid colon taken out and have colonoscopy every year afterwards, or have the whole thing taken out and don't have to worry having colon cancer in the future. The surgery for the total colectomy will not require a colostomy bag. The small intestine will be resected to the rectum. I was also told that I will have to go to the bathroom about 4-6 times a day. Yikes! What is the lifestyle like afterwards? I don't want to always have to worry about where the bathroom is especailly when I'm outside. 

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

I am sorry to hear about your diagnosis. From all I know not having any large intestine where most of the liquids are resorbed often require an ostomy. You don't want to end up with uncontrollable bowel issues. In my opinion you should get at least one ideally two more completely independent opinions. 

Wish you all the best.

Laz

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hi Laz,

Thank you! My surgery date still has not been set yet so I still have time to think about what I need to do. :)

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcome! They gave you a choice? Interesting. I have an illeosomy and I have no problem with it. Some minor annoyances but compared to the bathroom issues I had forever, this is a walk in the park. I'm glad you're open to the idea of a colostomy so that if they have no choice you won't be as upset. Some people are very against the idea and are traumatized by just the thought of it. I have a friend who has one and she's terrified that people will find out. I tell people if the subject comes up, like if I have to explain certain eating habits. It's just a part of me and helped save my life. If someone is disturbed by it, whatever. I'm sure they have some hidden secret I'd be disturbed by, too if I knew about it.

Jan

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hi Jan! Thanks! Love the picture of you and your horse. 

I'm open minded of having the ileostomy bag if I have to.  It doesn't bother me. Just like you said, it saves my life and it is part of me. People shouldn't judge and people shouldon't feel embarrassed if they have to wear one. 

My surgeon gave me all the ins and outs, pros and cons of having either the partial colectomy and total colectomy. I just have to decide if I want the partial and deal with having colonoscopy every year after and the chance of having colon cancer coming back in the future, or do the total colectomy and never have to worry about having the colon cancer again but do have to deal with the inconvenience of going to the bathroom more frequently on the daily basis. 

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

In my opinion unless you have a crazy family history of colon cancer or Chrowns disease removing the entire colon is excessive. It is not just a bathroom issue, it's an overall health issue. A lot of nutrients are absorbed in the colon. Losing all that may attribut some major health issues in your future. Just get other opinions.

All the best.

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

thank you. I will. I'm fortunate that I still have some time to decide. 

danker
Posts: 1253
Joined: Apr 2012

I had tumor removed and a temporary ileostomy for 6 weeks,then my plumbing was reconected. Been NED(no evedence of disease) for last 7 years.  Only effect: occasional diarrhea.  Otherwise normal life style.  Suggest you do same. Good luck!! 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you Danker and congratulations! Best wishes to you too. 

blessed39's picture
blessed39
Posts: 90
Joined: Dec 2016

Hi Lily Flower, It's great that you have some options. I had stage four colon cancer several years ago.
The surgeon removed about twelve inches of my colon. I had several rounds of chemo and all the radation

treatments my body could tolorate. I agree with Laz on the second opinion. As for as the bath room visits

I just start yelling "short colon" and usually get a laugh. I firmly believe a good sense of humor will get you a

long ways. After a couple of years of clear CT scans, my oncologist told me he would release me if I would keep getting colonoscopys. I now get one every year like clockwork. He always finds a small polyp or two. These are inconvient, but sure beats dying. My cancer experience effected me so much, I wrote a short entitled "How I Beat Stage Four Colon Cancer." If you care to read it just go to my page and click on blog.You will see the story there. God bless you in your journey. blessed39

 

 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Blessed, thank you. I read your blog with tears and laughs. Love your gas story. Lol! i hope others can find your story as a hope and solace like I do. Best wishes to you sir! 

EissetB
Posts: 135
Joined: Apr 2017

I'm glad you've found this site of very friendly and caring group. We're a family here in the same boat. In my CT scan and MRI, it showed healthy organs. The surgeon though suggested to have chemo therapy for 12 sessions in 6 months. I didn't get colostomy but 6 months treatment is awful long for me. So I quit my job and collected my SS benefits instead. Yesterday I had my 7th infusion and will pull it out on Sunday which will be tomorrow. I'm glad you have the options. Wish I had, but I was kind of scared when my oncologist explained about the percentage of surviving level when chose not to have the chemo therapy. I wish you the best and good luck with whatever your decision would be. God bless us all

Eisset

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you Eisset. i find everyone here are caring and wonderful folks. 

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

Sorry for your diagnosis and it sounds like you have gotten a lot of information already.  I'm also glad to hear that it didn't spread so that is very encouraging news.  Mine was rectal cancer and they took out my rectum and part of my colon and then resected some of the larger colon and made a new rectum, which they call the J-pouch.  This is not something you would get if you have colon cancer.  My bathroom issuses are difficult even having made a new rectum because I'm not able to process my food because a lot of the colon/rectum has been removed and sometimes it can be 15 times a day.  I'm limited to what I'm able to do and where to go.  Never can I go to a restaurant and eat out because it would go right through me.  Your doctors won't tell you this so be very careful in what you decide and try to get a lot of information from a lot of different people.  I'm wishing well for you and a full recovery.

Kim

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hi Kim. Oh my goodness...15 times a day? I'm so sorry to hear. Yes I'm doing a lot of research and also asking everyone here as well. It's a decision I have to make and live by it. My best wishes to you! 

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

I'm not complaining by all means, it might be a lot of bathroom issues but I'm still here since 2008.  This is my new normal.  I'm glad that you are doing your homework.  Good luck and I'll continue to give you advice and follow your story.

Kim

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you so much Kim! :)

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

As annabelle41415 said, learn all you can about the pros and cons of either result.  Once it's done, it's done and there is no going back.  Plus, your prognosis can change from one test to another.  I started out being told all I'd need was a simple surgery.  That was one month ago.  Now it's 28 sessions of chemo and radiation plus surgery and who knows what after that.  I want to keep as much of me as I can.  It's there for a reason so I'm going to try to leave things intact as much as possible.

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you Darcher for your input. I know this decision I make is permanent. I have to weigh in a lot of pros and cons. 

beaumontdave's picture
beaumontdave
Posts: 1061
Joined: Aug 2013

Lily Flower, welcome. I had the sigmoid section removed almost ten years ago now, and have had no recurrance in my colon, not even a polyp. I did have mets pop up in my liver twice, but I've had no bathroom issues or colon trouble for a very long while. Unless they demonstrate that you're prone to have more cancer show up, or colon issues have plagued you before the cancer arrived, I'd be wary of removing the entire colon, until you and your doctors are certain that's the best course.....................................................Dave

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you Dave! I know this isn't a decision I can make in a snap. I do have to weigh all the pros and cons since I'm in the high risk category. Best wishes to you!

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you everyone for all your inputs and sharing your experiences. I'm so grateful for every one of you. Both of my parents passed away from colon cancer as well as my maternal grandfather and uncle. So I'm in the high risk category. im doing a lot research and talking to my family and I hope whatever the decision I make will be the best one for me. Hugs to all! 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

I am truly sorry for you losses, but lets put a stop to that, right now.

YOU WILL BEAT THIS!

We have come a long way over the years, and know more about using not only medication, but our own natural abitilites, to beat this disease. 

Tru

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you so much Tru! 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

We did several things for my wife, who had an obstructing sigmoid colon cancer and turned out to be metastatic with a number of mets, after some initial confusions.   She has greatly exceeeded all expectations by years, especially for her biomarkers and  (bad) real estate.

First we mostly followed several Life Extension Foundation cancer articles on surgery, supplements, cimetidine and eventually celecoxib.  Even (much) higher on vitamin C and vitamin D3. Especially cimetidine before and after surgery - even during surgery for the second surgery, prescribed by the second surgeon.  Basically "standard medicine" is 20 years behind on these things.

Some of the LEF articles recommended extra blood markers and panels beyond CEA, we have found CA19-9 and CEA before and ca a week after surgery especially important. We also monitor CA19-9 and LDH continually with ESR and/or hsCRP and others to track and treat her cancer better. Serum CA19-9 correlates a lot with BRAF and KRAS mutant CRC cells.  Some cancer clinics use extra markers to more thoroughly assess their patients and are discussed in the medical literature. 

--------

An initial total colostomy is uncommon, it sounds drastic. If the testing for Lynch Syndrome is positive, which implies MSI-high, a new recommendation may be one of the new anti-PD1 drugs.  Keytruda, aka pembrolizumab,  is now FDA approved for all  MSI-high cancers, making it elgible for insurance coverage too.

plsletitrain
Posts: 253
Joined: Jul 2017

Welcome and I'm sorry to read you lost loved ones because of colon cancer.  I don't have much input but I agree with everyone who says you should ask your doctors (and also research on your own) and weigh all the pros and cons.  I have an ileostomy and I don't plan on having it reversed.  I was not given a choice though so by default, I had to have the ileostomy.  Good luck on whatever decision you make.

SandiaBuddy's picture
SandiaBuddy
Posts: 1093
Joined: Apr 2017

I think if you read through some of the symptoms people have after removing a large section of the colon, you will think that keeping as much of it as possible is a good idea.  Initially I was supposed to have 50% removed, but they only needed to take out 25% which allowed me to retain normal bowel function, which I consider very fortunate.  Doing annual colonoscopies would be a small price to pay for keeping a large part of your digestive tract.  Doctors say that the colon serves no real function than removing moisture from the waste products, but I think they are wrong.  Every part of the body has an important fuction and in my opinion you should keep as much of your body intact as you can.  I echo the earlier comments that you should request a second opinion and try to get the best qualified surgeon you can find.  Best of luck.

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you everyone for your feedback. Very much appreciated!

I had a CT scan for my chest area yesterday and my surgeon called me today said he got the result. My lungs are clear. However they detected 3 very small lesions on my liver, which the CT scan for my abdominal I did 2 weeks ago had stated the same. They're pretty sure the lesions are hemangioma which are benign. But my doctor still scheduled me for a MRI for next Monday just to rule it out completely. I also received some good news... I did a genetic test last Thursday for the Lynch Syndrome and the result came back negative. Yay! So he said the surgery that I'll be having will be the partial colectomy.  i gotta say, what a great news to receive on this day being that it's also my birthday. :)

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

That's a great present considering our circumstances.  Happy Birthday and congrats. 

Enjoy life and live !

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Indeed it is darcher. Thank you so much!

Canadian Sandy's picture
Canadian Sandy
Posts: 629
Joined: Jul 2016

Congrats on your good news and a big Happy Birthday also!

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you so much Sandy!

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

  And congrats for all of the good news. 

Tru

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Thank you so much Tru! 

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