Recently diagnosed

Puddy · August 2006

This past month has been a month of ups and downs. I was diagnosed with colon cancer on June 30 and am scheduled for surgery on August 3. I have been running around consulting with surgeons, oncologists and anyone willing to listen trying to find comfort in a decision. Doctors are not saying what I want to hear. I have had 5 benign polyps in multiple locations identified and one cancerous one in the lower sigmoid. A mother and brother have both had two benign polyps removed and has therefore uped the concern. I have been advised to have the colon removed and a resection of the small intestine to rectum. This seemed so drastic, but the only other option is for two resections, one on each side leaving only the transcending area and may be a little at the top of the ascending and decending. Although this section may not be polyp free it could be resected between the small intestine and rectum. This has been a hard decision, but it looks like the safe approach is for removal. Although at this time the surgeon does not believe a bag will be necessary, I still have questions about what to expect. I am scared, lost, and alone. Many of my questions have been about quality of life and functionality. I travel and have an high energy life. I could sure use some words of wisdom.

Betsydoglover · August 2006

Welcome, although I am sorry you have to be here. This is a great group and you can find much information and much support here.

I can't really advise on the surgery. I thought polyps could removed via colonoscopy, but this doesn't seem to be the case with you. I had a large sigmoid colon tumor and was able to have it and the sigmoid colon removed laporascopically. Others on this site should be able to help with more extensive surgical options. Not having "a bag" sounds good, but if that ends up being necessary, there are many here who are leading good, active lives with such - so it is not some sort of doom. And, if chemo is necessary, come back, cuz lots of us can help with the options there. One step at a time, though.

Best wishes for the surgery. You will go back to being a high energy person, but accept the fact that surgery will lay you a bit low for a while. I was back at work 4 weeks after surgery, but it took 3+ months for my appetite to return to normal (and of course I was on chemo then, so that had other appetite issues.) And for a long time I needed more sleep, but was still feeling good as long as I got an extra couple of hours.

Will be thinking of you on Thursday as you have your surgery. Come back and let us know how you are doing.

Best wishes,
Betsy

HowardJ · August 2006

Welcome and best wishes on the surgery. Do you know the stage or if you will need chemo? These may impact your quality of life.

As far as "functionality", from what I read everyone here is highly functional, but the surgery will wipe you out for a few months (yonger = shorter recovery, older = longer recovery). After you recover from surgery you should be able to do everything you normally do.

One thing...there are a couple of folks here who have had complete resections of the colon (most of us are "semi-colon's"). It sounds like getting back to "normal" with a complete resection might be more difficult. Hopefully they will write with their experience.

Howard

sandyjg · August 2006

I am the spouse of a stage IV colon cancer wonderful guy. My husband's medical situation is different than yours, but he had surgery to remove the obstruction/cancer, he had a colostomy bag for about 4 months, then a nasty surgery to reconnect and get rid of the bag. He was 52 at the time, 53 now. He stayed very active, in fact the day after we came home after 11 long horrid days in the hospital, we went to the driving range. He wanted to see if he could still hit a golf ball. The colostomy bag was initially a challenge for him. I took the lead at the hospital and did all the care until he was ready to deal with it. It didn't take very long, 2-3 weeks. He has had 3-4 rounds of different chemo and does great. He is good about paying attention to his body and resting when he needs to, but we didn't slow down. He was diag'd 13 months ago, since then we have gone on 2 cruises, flown to about 8 different sporting events, he was 2nd in his club golf championship, and many many weekend trips. Our surgeon gave us wonderful advice at the hospital. He said focus on living, not dying. We are both able to do his 92% of the time and it has helped tremendously. We don't put off things, we just do it.

God bless you.

WendyMarie · August 2006

I certainly understand your fears. I had a colectomy 3 years ago leaving only centimeters of colon. Stage 3 colon cancer diagnosed 6/13/2003. I didn't have a choice though because I have a disease called familial adenomatous polyposis (FAP) and had over 1,000 polyps at the time of removal. I had a bag for a while, mainly because of a problem that arose during surgery. I had a J pouch procedure-rectum created out of part of the small bowel. It does take some adjusting but I have to say my quality of life is excellent. I am a runner, a musician and the mother of 2 small boys (who may or may not also have the FAP gene-genetic testing in progress)as well as a part time pre-school teacher and my condition doesn't keep me from enjoying any of this. It sometimes takes a little planning concerning meal times. I have to say I am very satisfied with the results, especially considering the alternative!! I hope this helps you and good luck to you!!!

Wendy

WendyMarie · August 2006

WendyMarie said:
I certainly understand your fears. I had a colectomy 3 years ago leaving only centimeters of colon. Stage 3 colon cancer diagnosed 6/13/2003. I didn't have a choice though because I have a disease called familial adenomatous polyposis (FAP) and had over 1,000 polyps at the time of removal. I had a bag for a while, mainly because of a problem that arose during surgery. I had a J pouch procedure-rectum created out of part of the small bowel. It does take some adjusting but I have to say my quality of life is excellent. I am a runner, a musician and the mother of 2 small boys (who may or may not also have the FAP gene-genetic testing in progress)as well as a part time pre-school teacher and my condition doesn't keep me from enjoying any of this. It sometimes takes a little planning concerning meal times. I have to say I am very satisfied with the results, especially considering the alternative!! I hope this helps you and good luck to you!!!

Wendy

By the "alternative", I meant not being here at all. I could certainly live with the ostomy!!
Wendy

Puddy · August 2006

WendyMarie said:
I certainly understand your fears. I had a colectomy 3 years ago leaving only centimeters of colon. Stage 3 colon cancer diagnosed 6/13/2003. I didn't have a choice though because I have a disease called familial adenomatous polyposis (FAP) and had over 1,000 polyps at the time of removal. I had a bag for a while, mainly because of a problem that arose during surgery. I had a J pouch procedure-rectum created out of part of the small bowel. It does take some adjusting but I have to say my quality of life is excellent. I am a runner, a musician and the mother of 2 small boys (who may or may not also have the FAP gene-genetic testing in progress)as well as a part time pre-school teacher and my condition doesn't keep me from enjoying any of this. It sometimes takes a little planning concerning meal times. I have to say I am very satisfied with the results, especially considering the alternative!! I hope this helps you and good luck to you!!!

Wendy

Thank you so much Wendy. They will not determine the stage until surgery, but the CT scan didn't appear to show anything further. Although I did not have as many polyps as you they did express a family concern because of my mom and brother and our predisposition to polyps. Genetic counseling is a consideration since I have a 23 year old son. The cancer is in the sigmoid at about 11mm so the surgeon discussed the pouch procedure in the event it becomes necessary. The plan is for laproscopic surgery, but even that might change once in there. It was helpful to hear that you are an active person as I too lead a pretty busy life. I love to travel and also travel with my job. My question to my surgeon to try and get a fix on this was, "If I am in the middle of a presentation to room full of people and get an urge, do I finish the sentence or just run." He chuckled at my attempt to find some humor in a serious question, but replied. Finish your sentence and perhaps finish the presentation. He said it would take some time but I would be able to gage myself and my presentations after a while. Of course, it is just easier to focus on such things than face bigger questions. So much is just unknown, but having feedback like yours helps. Thanks for your well wishes and I wish the same for you.

Puddy · August 2006

Betsydoglover said:
Welcome, although I am sorry you have to be here. This is a great group and you can find much information and much support here.

I can't really advise on the surgery. I thought polyps could removed via colonoscopy, but this doesn't seem to be the case with you. I had a large sigmoid colon tumor and was able to have it and the sigmoid colon removed laporascopically. Others on this site should be able to help with more extensive surgical options. Not having "a bag" sounds good, but if that ends up being necessary, there are many here who are leading good, active lives with such - so it is not some sort of doom. And, if chemo is necessary, come back, cuz lots of us can help with the options there. One step at a time, though.

Best wishes for the surgery. You will go back to being a high energy person, but accept the fact that surgery will lay you a bit low for a while. I was back at work 4 weeks after surgery, but it took 3+ months for my appetite to return to normal (and of course I was on chemo then, so that had other appetite issues.) And for a long time I needed more sleep, but was still feeling good as long as I got an extra couple of hours.

Will be thinking of you on Thursday as you have your surgery. Come back and let us know how you are doing.

Best wishes,
Betsy

Thanks Betsy. It sounds like our tumors are similar. Did you have other polyps as well? Besides the walnut sized cancerous tumor I had 4 other individual polyps and a small cluster of flat ones. With the exception of the one they all tested benign, precancerous. Most could be removed in the colonoscopy originally done by my GE, but when the surgeon went back in during a 2nd colonoscopy for the cluster he could not find it. He said it had to still be there but must have been in a fold. He was very aggressive in his search, but could not find it and therefore could not remove it. Since the other polyps were in multiple locations and it appeared that I had a predisposition he felt it highly advisable to remove the colon and any future concerns or worries. His recommendation perhaps would have been different if he had located and removed the cluster. I had been hoping for that option, but now it seems very unlikely. Thanks again, this is a great website and I will be back.

WendyMarie · August 2006

Puddy said:
Thank you so much Wendy. They will not determine the stage until surgery, but the CT scan didn't appear to show anything further. Although I did not have as many polyps as you they did express a family concern because of my mom and brother and our predisposition to polyps. Genetic counseling is a consideration since I have a 23 year old son. The cancer is in the sigmoid at about 11mm so the surgeon discussed the pouch procedure in the event it becomes necessary. The plan is for laproscopic surgery, but even that might change once in there. It was helpful to hear that you are an active person as I too lead a pretty busy life. I love to travel and also travel with my job. My question to my surgeon to try and get a fix on this was, "If I am in the middle of a presentation to room full of people and get an urge, do I finish the sentence or just run." He chuckled at my attempt to find some humor in a serious question, but replied. Finish your sentence and perhaps finish the presentation. He said it would take some time but I would be able to gage myself and my presentations after a while. Of course, it is just easier to focus on such things than face bigger questions. So much is just unknown, but having feedback like yours helps. Thanks for your well wishes and I wish the same for you.

FYI..Have always had complete control.I've had no accidents and have never really had to dash to the bathroom. Except maybe during bowel prep!!! It takes a little time, but you will figure out what works for you.

Wendy

KathiM · August 2006

I don't have any words of wisdom...just experiences. I still have a good part of my colon, but am missing the rectum and sigmoid colon. My resection was in May, 05. I did not have a bag, not even temp. It has taken some work, and my eating habits are different, but now, a year later, I have formed stool, 1 or 2 times a day, depending on what I have eaten.
At the beginning, you may want to not 'finish the presentation', but much of my emergency trips were during or right after eating...my lifestyle change is to check where I'm going for good, clean bathrooms...THAT will determine what and how much I eat....
I am a computer consultant...I worked off and on during my 2 battles (read my page if you want more)....and I am now back to about 75% of what I did pre-cancer...
I suppose my one 'pearl' of wisdom would be to take VERY good care of your body, give it time to adjust and heal...you will be rewarded, just like I am.....
Hugs, Kathi

Kanort · August 2006

I will be thinking of you tomorrow and will be praying for a compelete recovery. As for words of wisdom, I have none. I had my sigmoid colon removed. Blockages in my small intestines create the opposite condition to which you refer. Please keep us posted on your progress.

Hugs,

Kay

usakat · August 2006

Hello Puddy. Sorry to hear of your diagnosis, but welcome. Like everyone said, this is a great group.

I cannot comment on your type of surgery because my case was quite different (check out my Personal Page), but I can say from my own experience that since you're high energy you will be amazed at how quickly you will recover. My best advice while in the hospital is to follow your doctor's and nurse's recommendations, especially walking, walking, walking. While it was sometimes not easy, it was the best medicine. Also, laughter was and still is essential (when I was in the hospital after surgery I laughed, I farted, I got chicken broth...it was good after four days of ice chips).

What you're going through is like a scary carnival ride - just know that your ups and downs are quite normal. I found the best thing was to ride it out, feel the feelings and be sure to rejoice in your victories. It's easy to let yourself get down in the face of what you're going through, but the mind-body connection is very powerful and the more positive you can allow yourself to be, the better your body will respond to all that medical stuff.

Also, you have just found a huge network of friends here who will support and encourage you every step of the way. Please consider this the biggest group hug of your life!

Best wishes for a speedy recovery - I'll include you in my very best thoughts and prayers.

All my best,
Kat

lfondots63 · August 2006

Hi Puddy,

Like Kat and others said welcome and wish we could meet on other terms. This is a great group. I have no words of wisdom since others have chimed in. I only had a tumor in my sigmoid removed Dec 20th 2005(my birthday). I just want to agree with the "group hug". We understand what you are going through and can help along the way. Come here to vent or just post something happy. Think of us holding your hand on Thursday through the surgery. We will all be sending good vibes for a speedy recovery. Don't forget to tell us how it went too.

Lisa

kangatoo · August 2006

lfondots63 said:
Hi Puddy,

Like Kat and others said welcome and wish we could meet on other terms. This is a great group. I have no words of wisdom since others have chimed in. I only had a tumor in my sigmoid removed Dec 20th 2005(my birthday). I just want to agree with the "group hug". We understand what you are going through and can help along the way. Come here to vent or just post something happy. Think of us holding your hand on Thursday through the surgery. We will all be sending good vibes for a speedy recovery. Don't forget to tell us how it went too.

Lisa

Hi Puddy. I hope you get a chance to read this as soon as you are out of hospital(you are probably preparing for that now). In any case come back as soon as you are able. I hope all goes well and they can resect without a colostomy. I had my sigmoid and part of the descending removed so your surgery may be similar. All the best and keep us informed. Ross and Jen

Puddy · August 2006

WendyMarie said:
FYI..Have always had complete control.I've had no accidents and have never really had to dash to the bathroom. Except maybe during bowel prep!!! It takes a little time, but you will figure out what works for you.

Wendy

Thanks Wendy, you are an inspiration. I feel guilty about worrying about function and lifestyle when I should just be thankful. But somehow the concern just won't go away. I am only 54 and have a lot of living to do and it concerns me that much of it is going to be centered around finding bathrooms. I guess it is just somehow easier to focus on this trivial issue right now. Thanks again.

Puddy · August 2006

KathiM said:
I don't have any words of wisdom...just experiences. I still have a good part of my colon, but am missing the rectum and sigmoid colon. My resection was in May, 05. I did not have a bag, not even temp. It has taken some work, and my eating habits are different, but now, a year later, I have formed stool, 1 or 2 times a day, depending on what I have eaten.
At the beginning, you may want to not 'finish the presentation', but much of my emergency trips were during or right after eating...my lifestyle change is to check where I'm going for good, clean bathrooms...THAT will determine what and how much I eat....
I am a computer consultant...I worked off and on during my 2 battles (read my page if you want more)....and I am now back to about 75% of what I did pre-cancer...
I suppose my one 'pearl' of wisdom would be to take VERY good care of your body, give it time to adjust and heal...you will be rewarded, just like I am.....
Hugs, Kathi

Thank Kathi. My surgeon is really pushing the coloectomy because of the one cancer and the other benign polyps found in different areas of my colon. If I only have the sigmoid removed then I face the continuing concern of future polyps and the possibility of them turning to cancer. I feel at times he has used scare tactics to get me to agree to the coloectomy, but at the same time understand he only wants what is best and the most likely cure. But it sounds like whether one is semi or full colon removal there are issues of control. I am glad you are working your way back up to to pre-cancer work schedule. I am a recruitment specialist so I travel quite a bit. In addition, I am the administrator for our applicant processing software, so I spend some time conducting training programs and part at a desk working on technology related issues. I am fortunate to have short term disability at work as well as the option of telecommuting during the non-travel periods. I consider myself fortunate, but have not come through the "why, why, why" stage yet less lone the "how do I do this phase." The one sure thing is I have found a gold mine of support in this group.

Puddy · August 2006

Kanort said:
I will be thinking of you tomorrow and will be praying for a compelete recovery. As for words of wisdom, I have none. I had my sigmoid colon removed. Blockages in my small intestines create the opposite condition to which you refer. Please keep us posted on your progress.

Hugs,

Kay

Thanks for your thoughts and prayers for tomorrow. I am trying so hard to stay focused and busy today. My surgeon had mentioned the possibility of blockages. I guess there are issues regardless of how much is removed and each person is a little different. I have to stop looking for the "sure thing" answer. Thanks again and take care.
Puddy

Puddy · August 2006

usakat said:
Hello Puddy. Sorry to hear of your diagnosis, but welcome. Like everyone said, this is a great group.

I cannot comment on your type of surgery because my case was quite different (check out my Personal Page), but I can say from my own experience that since you're high energy you will be amazed at how quickly you will recover. My best advice while in the hospital is to follow your doctor's and nurse's recommendations, especially walking, walking, walking. While it was sometimes not easy, it was the best medicine. Also, laughter was and still is essential (when I was in the hospital after surgery I laughed, I farted, I got chicken broth...it was good after four days of ice chips).

What you're going through is like a scary carnival ride - just know that your ups and downs are quite normal. I found the best thing was to ride it out, feel the feelings and be sure to rejoice in your victories. It's easy to let yourself get down in the face of what you're going through, but the mind-body connection is very powerful and the more positive you can allow yourself to be, the better your body will respond to all that medical stuff.

Also, you have just found a huge network of friends here who will support and encourage you every step of the way. Please consider this the biggest group hug of your life!

Best wishes for a speedy recovery - I'll include you in my very best thoughts and prayers.

All my best,
Kat

Thanks Kat and you are right about the group hug. I am an optimist and normally have a very positive outlook. This has been the ultimate challenge.

vinny3 · August 2006

Sorry to meet this way but welcome to the group. The others have given you good advice. It is a very difficult decision. I had rectal cancer and had chemoradiation first and then just a local excision as my surgeon and I wanted to avoid "the bag". However my cancer recurred and I now have a colostomy and it is no big deal. It is easier than before as I don't need to find a bathroom urgently anymore. However with a colostomy the stools are more formed (the water has been mostly removed) so there is less emptying of the bag. If it requires an ileostomy the discharge is more liguid and I believe emptying must be done more often but others can tell you more about that.

Good luck on your decision. We will pray for guidance. ****

AuthorUnknown · August 2006

Hello,

I am glad you have found us. This is great place of support. There are people here who had their colon completely removed. You might want to post the message with the subject line "all colon removed - please respond" or something like this. You will get some answers.

I wish you all the best for tomorrow - successful surgery and speedy recovery. May God helps you through this difficult period.

Best wishes and God Bless.
Eleonora

AuthorUnknown · August 2006

Puddy said:
Thank you so much Wendy. They will not determine the stage until surgery, but the CT scan didn't appear to show anything further. Although I did not have as many polyps as you they did express a family concern because of my mom and brother and our predisposition to polyps. Genetic counseling is a consideration since I have a 23 year old son. The cancer is in the sigmoid at about 11mm so the surgeon discussed the pouch procedure in the event it becomes necessary. The plan is for laproscopic surgery, but even that might change once in there. It was helpful to hear that you are an active person as I too lead a pretty busy life. I love to travel and also travel with my job. My question to my surgeon to try and get a fix on this was, "If I am in the middle of a presentation to room full of people and get an urge, do I finish the sentence or just run." He chuckled at my attempt to find some humor in a serious question, but replied. Finish your sentence and perhaps finish the presentation. He said it would take some time but I would be able to gage myself and my presentations after a while. Of course, it is just easier to focus on such things than face bigger questions. So much is just unknown, but having feedback like yours helps. Thanks for your well wishes and I wish the same for you.

Welcome to this board although we are all sorry that anyone has to find us.

I am the caregiver, as such, in our household. My husband has stage 4 with liver mets. He had the laposcopic procedure and did very well. He actually had two cancerous polys but they were close together. I know of one person who recently had the colon removed and is doing fine. We did not have to make that decision. I really wanted to comment on your statement about the family history and especially your son. Not to worry you but please consider having your son get a colonscopy. It seemed possible that our family carried the bad gene so our 29 yr old son had the colonscopy. The doctor was amazed. Son had four polys, one of which was large and bleeding. Doc said that had he waited two years, he would certainly have cancer. Not to scare you but to inform you. I know you are dealing with a lot right now but keep this in the back of your mind. That is what we did. We waited a year after husband's dx before son was tested. Now both will be tested yearly. I wish you well with the procedure and decisions to be made. Know that you will be in our prayers. Keep us posted.

Betty

Recently diagnosed

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