Questions about before and after Rectal surgery

DulcimerGal · Regular Joined: 01 Apr 2008 Posts: 36 Location: Virginia

Hello everyone,

I am looking for anyone who can encourage me and tell me that this is not the end of the world.

I was diagnosed in February with a Rectal Tumor - T3 N2 - probably as lymph nodes are swollen, so that is how they are treating me. I have NEVER been sick in my life - I am 58 so I guess that is not young - but heck I feel young - I excercise, eat right, am famous at work for never calling in sick, have tons of energy - when BOOM - along comes cancer.

So - I am on week 3 of six weeks of radiation and the continuous infusion of 5FU. They had to take off the pac last week as I got mouth sores really bad and lost my voice, but meds cleared it up and now the pac is on again at 10% reduced dose. Yes, I was fine and now they are making me sick, the radiation is tiring too!

I read that someone had Folfox before the surgery? and then again afterwards. I know I will have to have chemo after my surgery but I did not think to ask what kind, I just assumed it would be 5FU again. Does anyone know if this is something I should ask my oncologist about?

I also see Avastin mentioned. WHich is best? how will I know? I don't feel like I know the right questions to ask.

I am also worried about life after the surgery. I have a job where I deal with people every day - I would like to hear how long anyone who had this done was out of work.....six weeks? More - or less? Is going back to work hard with the ileostomy? I actually hope I get to have one as my tumor is very close to the sphincter muscle and my surgeon is hoping he can shrink it so he won't have to do a colostomy.

But one of you that posted said you had the whole lot out. To me that almost sounds easier than the other problems of burning etc that others of you mention. Please share your experiences. How are things going now?

I get very depressed about this whole thing. I know attitude is everything - but the radiation is making my butt so sore I can't work out like I used to and of course now I feel even worse because I feel even less fit.

Is anyone using any alternative therapies along with regular medicine?
I do know someone using herbal protocols who has stage 4 colon cancer, he swears it is helping him feel better and do more and having better quality of life as he goes through chemo. I would be interested in any experience that you could share.

Well - sorry this is long - hope to hear from some survivors soon.
Thanks to everyone posting on here, you are all doing a wonderful job of encouraging people, that's why I decided to take the plunge and post.

Cheers - DulcimerGal

REB

I am doing Avastin and Folfox (Which has 5FU) so you can do both.

I was back to work two weeks after my surgery (Work half-days the first week) and I have worked full time all through my chemo. I am a programmer, so I sit a lot. Many days I feel lousy, but I can still work.

I am not doing radiation, since they removed all the cancer when they removed the tumor. So I do not know how radiation makes you feel.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

DulcimerGal · Regular Joined: 01 Apr 2008 Posts: 36 Location: Virginia

Thanks REB

How long will you have to stay on the chemo?
Do you go every week?
How long are you hooked up in the chemo lounge?

I take it you got to keep your sphincter muscles?
Do you have a colostomy or ileostomy?

Thanks - DulcimerGal

REB · Last edited by REB on Mon Apr 07, 2008 7:47 am; edited 1 time in total

I do chemo every other week for a total of twelve treatments (Number 12 is next week).

They give me three of the drugs over a period of about 3 or 4 hours. Then I take home the fourth drug for two days (I believe its 5FU). I don't enjoy that one. You can't shower with it and I hate going to bed without a shower (Do the old sponge bath thing). Also, by the second day, the tape holding the needle in my port starts to itch. Sleeping with it is also interesting. Other than that, its not too bad.

My cancer was about 6 inches up my colon. They removed about 4 inches of my colon. I got to keep everything else.

I have a colostomy. I am so thankful it is temporary. If it was permanent I would probably be depressed about it. However, if it was permanent, I would be forced to deal with it. Being temporary, I know I only have to deal with it for so long.

Most things in life, a colostomy does not effect. I do have a hard time being social with it. I am always worried if I smell bad. I check the bag frequently to make sure it is clean and not leaking. It is a self image killer. It makes hard to be intimate. You need to have an understanding partner, like my wife. Still, even with her being very supported, I don't want her to see me shirtless (I know, self image problem). You also have to be careful with other physical activities. Anything that causes you to bend your stomach can force a leak if you are not careful. You learn these things over time.

A colostomy doesn't end your life, but it does change it some.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

DulcimerGal · Regular Joined: 01 Apr 2008 Posts: 36 Location: Virginia

Thanks REB,
your comments are so helpful. It is neat to know you have worked the whole six months you have been on Chemo with the colostomy. Congratulations on almost being finished! You need to have a party and celebrate!

Will they test you once they reverse the colostomy to make sure the cancer is gone? A CT or MRI or another colononscopy?

I understand about the port and sleeping. I am on this continuous hookup for 3 and a half more weeks. The port is in my chest and I have a waistpack on all the time with the 5fu pumped in. It gets refilled every week. I amnot supposed to shower either, but I have long hair, so I take the pack and hook it outside the shower, I cover up the port with saran wrap and tape and go for it....so far no problems.

My self image too would really suffer if I could not shower and get my hair done. It does take so long though, it is part of my depression - how life changes. As for the colostomy, I can totally see that self image being a problem for me too....and working - well I am already worried.

Right now though - it's the radiation that is the worst, it is starting to give me terrible cramping, I always feel like I have to go to the bathroom, and my rectum/colon really burn and hurt. I cannot wait for it to be over.

I guess I see the six weeks between this treatment and surgery as my best chance for a trip or something fun before they cut me up and mess with my plumbing. I think I am going to have to plan something.

Thanks for sharing your experience.
Goodluck with the recovery after chemo and please keep posting so we can keep up with you.

DulcimerGal

REB

[quote="DulcimerGal"]Will they test you once they reverse the colostomy to make sure the cancer is gone? A CT or MRI or another colononscopy?
[/quote]

I have yet to have a colonoscopy. They are going to do that when they do the surgery 3 weeks from today. I had a PET scan done last week and I will find out the results tomorrow. They found no more cancer in the first PET scan so I am hoping for the same news tomorrow.

I'll probably get another colonoscopy in a few months to check on the reconnect area. Cancer sometimes likes to form in the reconnect area.

After that, I will get them yearly for a few years. I am not sure about future PET scans. I'll probably also do them yearly.

So you have been hooked up for 3 weeks...Wow!. After two days with the thing, I am ready to get it off. I have thought about doing like you do to shower with it, but since it is only two days, the sponge bath technique does okay. I probably look pretty silly doing it, thou Smile

_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

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