Stage 3 no surgery?

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Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Stage 3 no surgery?

Postby Lydia666 » Sun Jan 17, 2016 10:19 am

I am not working since i am home with my one year old but I think u can totally work, it's basically invisible and you just go to the bathroom a few times a day for a few minutes. The downside is that it really stinks, more than any diahrea you've ever had. But bring a bathroom spray and it will be ok.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Stage 3 no surgery?

Postby tammylayne » Sun Jan 17, 2016 10:46 am

5 years ago my surgeon talked to me about the "wait and see" option...that it was being done in Europe with some good results. He said I would have a colonoscopy about every 3 months. The reason was that it appared that I had a "complete response" to the chemoradiation. I opted for the surgery, and glad I did as there were still cancer cells present. My surgeon told me good call.

This journey is full of unknowns and what ifs. The best you can do is try to make choices that give you the best odds and that YOU can live with. A surgeon that you trust (like others have said) is crucial. One of the few good things about this disease is that it is normally slow growing, so you can get a second...or third...or fourth opinion if needed. Obviously you don't want to dilly dally....but you can take a couple of weeks to do your homework.

As for the ileo...what really helped me to get my head around it was a poster that said " A bag or a BOX...your choice." I pick the bag. Hated my ileo. Had all sorts of issues with leaking, itching etc...but it beat the alternative hands down. Had my reversal. DIdn't work out. I now do a daily enema. Not as issue. Others have colostomies. Not an issue. My point....there are options that can help you get through most situations to make them doable. But not getting ALL the treatment needed because you are afraid your life will not be the same or not always easy...not even an option in MY mind.

Will your life be the same...nope. Will your life be worse? Not necessarily...just different. As a teacher, will you be able to teach? Most likely!!! You will just find ways to make you new normal...normal again. :D

And by the way...with an ileo, yes, you do need to empty it more often, but everyone is different...and you usually have warning...I had to empty about every 2 - 3 hours, but it takes minutes, so was easy enough to do on breaks and lunch time. I also found little tricks during the day that worked for me - ie didn't eat as much, picked certain foods that took a longer transit time etc...and I added mouthwash to my bag to help with the odor...made a HUGE difference. DIdn't make all the smell go away...but hey...no one else is "smell free" either :shock:

We do understand...there is soooooo much to think about and this is a scarey ride. Try to hold onto the fact that alot of this is temporary....alot of options are out there to help with whatever comes along....but as someone said...you want to be here to complain about it all for a very very long time....

Sending you many gentle hugs as you find your way...
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."

prs
Posts: 179
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Stage 3 no surgery?

Postby prs » Sun Jan 17, 2016 11:04 am

Nica, if you haven't yet seen this article http://gastro.oxfordjournals.org/conten ... ov039.full then reading it might keep you out of mischief for an hour or two. :)
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 8:01 pm

Lydia666 wrote:I am not working since i am home with my one year old but I think u can totally work, it's basically invisible and you just go to the bathroom a few times a day for a few minutes. The downside is that it really stinks, more than any diahrea you've ever had. But bring a bathroom spray and it will be ok.


Thank you! Good information to have!
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 8:06 pm

tammylayne wrote:5 years ago my surgeon talked to me about the "wait and see" option...that it was being done in Europe with some good results. He said I would have a colonoscopy about every 3 months. The reason was that it appared that I had a "complete response" to the chemoradiation. I opted for the surgery, and glad I did as there were still cancer cells present. My surgeon told me good call.

This journey is full of unknowns and what ifs. The best you can do is try to make choices that give you the best odds and that YOU can live with. A surgeon that you trust (like others have said) is crucial. One of the few good things about this disease is that it is normally slow growing, so you can get a second...or third...or fourth opinion if needed. Obviously you don't want to dilly dally....but you can take a couple of weeks to do your homework.

As for the ileo...what really helped me to get my head around it was a poster that said " A bag or a BOX...your choice." I pick the bag. Hated my ileo. Had all sorts of issues with leaking, itching etc...but it beat the alternative hands down. Had my reversal. DIdn't work out. I now do a daily enema. Not as issue. Others have colostomies. Not an issue. My point....there are options that can help you get through most situations to make them doable. But not getting ALL the treatment needed because you are afraid your life will not be the same or not always easy...not even an option in MY mind.

Will your life be the same...nope. Will your life be worse? Not necessarily...just different. As a teacher, will you be able to teach? Most likely!!! You will just find ways to make you new normal...normal again. :D

And by the way...with an ileo, yes, you do need to empty it more often, but everyone is different...and you usually have warning...I had to empty about every 2 - 3 hours, but it takes minutes, so was easy enough to do on breaks and lunch time. I also found little tricks during the day that worked for me - ie didn't eat as much, picked certain foods that took a longer transit time etc...and I added mouthwash to my bag to help with the odor...made a HUGE difference. DIdn't make all the smell go away...but hey...no one else is "smell free" either :shock:

We do understand...there is soooooo much to think about and this is a scarey ride. Try to hold onto the fact that alot of this is temporary....alot of options are out there to help with whatever comes along....but as someone said...you want to be here to complain about it all for a very very long time....

Sending you many gentle hugs as you find your way...


Thank you, Tammy. I guess that poster really says it all. Great advice and a lot to think about.

So, are you saying that the ileostomy bag smells, as in someone standing near me can smell it if I haven't had a chance to empty it?
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Stage 3 no surgery?

Postby Lydia666 » Sun Jan 17, 2016 8:21 pm

No, the bag is not supposed to smell unless you have a leak going on, but when you empty it , then it stinks because it's fermented food with enzymes- the digestion stop at the bottom of the short intestin ( ileum).
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 8:57 pm

PRS wrote:Nica, if you haven't yet seen this article http://gastro.oxfordjournals.org/conten ... ov039.full then reading it might keep you out of mischief for an hour or two. :)


Thank you! I have the day off tomorrow so I will read it then.
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Sun Jan 17, 2016 8:58 pm

Lydia666 wrote:No, the bag is not supposed to smell unless you have a leak going on, but when you empty it , then it stinks because it's fermented food with enzymes- the digestion stop at the bottom of the short intestin ( ileum).


Thank goodness! I was pretty grossed out at that thought!
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Stage 3 no surgery?

Postby PainInTheAss » Mon Jan 18, 2016 6:51 am

Nica432 wrote:
Lydia666 wrote:No, the bag is not supposed to smell unless you have a leak going on, but when you empty it , then it stinks because it's fermented food with enzymes- the digestion stop at the bottom of the short intestin ( ileum).


Thank goodness! I was pretty grossed out at that thought!


Bear in mind that if your tumor is very low and they can't save the sphincter, you will get a permanent colostomy rather than an illeostomy. The big difference is that stool is thicker, more like normal poop, so you just poop from a different place. I only empty my bag at home. Also, irrigating is an option for colostomy. It's like an enema. Some successful Irrigators don't wear a bag at all. I'm hit and miss with irrigation because sometimes it's easier to just slap a new bag on and other times I might want to wear a fitted dress and not want to worry about a bag bulge. They have mini bags that are the size of a small coffee can lid.

Regardless, there are a lot of options and life can be pretty "normal" even with a permanent colostomy. I remember reading about an irrigator that still wore bikinis at the beach (with a bandage over the stoma) and that really inspired me.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Stage 3 no surgery?

Postby MissMolly » Mon Jan 18, 2016 8:14 am

I will chime in to provide input on life with an ileostomy (although my ileostomy is due to an extensive intestinal perforation).

The first order of business after surgery is finding a pouching system that is agreeable to your skin and to the topography of your abdomen (crevices, skin creases and dips). Pouching systems of today are quite advanced in their design and use of materials. Wafers (the part that attaches to the skin) are a thin composite of hydrocollide material and increasingly available with elastic polymers - making the wafer stetchable and adaptable to body contours and all manner of movement (ex. you can be at ease practicing yoga or pilates). The bag/pouch is available in a range of sizes - a mini pouch is about 5 inches.

There is no detectable smell with an intact wafer seal. The wafer and pouch/bag are air-tight and water-tight.

A loop ileostomy can be fairly high maintenance in terms of the number of times that it needs to be emptied in a day. Anywhere from 8 to 10 times a day. But emptying a bag/pouch takes only about 2 minutes, and then you are on your way.

If draining a pouch is odiferous, there are drops that you can add to the pouch (M9 drops, for example) that decrease the odor. The odor is due to the digested food and digestive enzymes . . . and your nose is in closer proximity to the pouch/bag than it is to an your butt or "back-side" in using a toilet in an intact digestive system. Some people add a few drops of mouthwash to their pouch/bag.

I have had a permanent ileostomy now for about 4 years. There was an emotional adjustment, for sure. Now I rarely give thought to my stoma and ostomy. In some respects, it is easier having an ileostomy. It is possible to live a quality life with an ostomy.
- Karen -
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.

EverySunriseCounts
Posts: 19
Joined: Sun Jan 17, 2016 1:25 pm

Re: Stage 3 no surgery?

Postby EverySunriseCounts » Mon Jan 18, 2016 9:01 am

Hi all,
Since we've moved to the topic of what it's like to have an ostomy... Our nurse (who has one) told us at the beginning: "There's nothing you can't do with an ostomy that you could have done without one". People have apparently climbed Mt. Everest, gone scuba-diving, etc.

Now that he's got one I'd say she's exaggerating a bit, but only a bit.

Professional football and boxing are likely out, but my DH has gone kayaking, snorkeling, hiking, and works (when the chemo allows him) a regular day. If you can get the Sure Seal seals (available on Amazon), they help a lot with waterproofing and leak prevention. And, umm, nobody's asking but sex still happens.

So, what Karen said:
It is possible to live a quality life with an ostomy.
Partner:
-Diagnosed with Stage IV CRC 09/14, liver,lymph mets
-Started Folfox
- Emergency surgery 10/14, removed colon tumor, temp ileostomy
- New abdominal tumor 05/15 changed to Folfiri
- Added Avastin 09/15
- Stable scan (liver mets still present) 11/15
- Stable scan 02/16; chemo halted 03/25
-Ostomy reversal 05/16

ponzlaw
Posts: 1
Joined: Fri Dec 04, 2015 5:48 am
Location: Wilton, CT

Re: Stage 3 no surgery?

Postby ponzlaw » Mon Jan 18, 2016 11:47 am

I am stage III currently in neoadjuvant chemo ( 3 cycles so far) Treating at Sloan. When I asked my surgeon if I could forgo surgery if the chemo 'worked" to shrink nodes, he said that would be like playing Russian Roulette with three bullets in the chamber. Now that's me///every case is different. My node involvement is a local node involvement from a mucinous adenocarcinoma of the appendix. Appendix was removed with tumor contained and clear margins.In fact, the node enlargement may be from inflammatory changes since they haven't been biopsied.Tumor was about 3 cm x 2 cm more or less.Good luck this is beatable. :)

ALW
Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: Stage 3 no surgery?

Postby ALW » Mon Jan 18, 2016 12:03 pm

EverySunriseCounts wrote:
Professional football and boxing are likely out

Rolf Benirschke played for the Chargers with an ileostomy. :D
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

EverySunriseCounts
Posts: 19
Joined: Sun Jan 17, 2016 1:25 pm

Re: Stage 3 no surgery?

Postby EverySunriseCounts » Mon Jan 18, 2016 2:55 pm

Hey ALW, thanks for that!

Rolf Benirschke played for the Chargers with an ileostomy. :D


Find us a boxer and I'll cheerfully stand corrected on that point as well. Good thing I phrased it with weasel-words :)

I'm still trying to figure out how the guy (or gal? or guys/gals?) who climbed Everest managed to keep things from freezing, but I guess where there's a will there's a way...and it's surprising that a wetsuit is actually quite comfortable over an ostomy (or so DH says).

Anyway, Nica, you are getting the idea, I hope! Obviously an ostomy is not something anyone would choose just for giggles, but it doesn't have to be as life-changing as feared.

I will also say that watching a man worry about "leakage" and embarrassing clothing bulges and getting caught without supplies far from home makes me think, "Aha, NOW you know what it's like to be a gal!" Many of us have had to deal with those issues since we were 12 (even if they've since gone away). Not that it's at all the same thing, but you know.. some elements in common.
Partner:
-Diagnosed with Stage IV CRC 09/14, liver,lymph mets
-Started Folfox
- Emergency surgery 10/14, removed colon tumor, temp ileostomy
- New abdominal tumor 05/15 changed to Folfiri
- Added Avastin 09/15
- Stable scan (liver mets still present) 11/15
- Stable scan 02/16; chemo halted 03/25
-Ostomy reversal 05/16

Nica432
Posts: 24
Joined: Sat Jan 16, 2016 1:12 pm

Re: Stage 3 no surgery?

Postby Nica432 » Mon Jan 18, 2016 4:27 pm

PainInTheAss wrote:
Nica432 wrote:
Lydia666 wrote:No, the bag is not supposed to smell unless you have a leak going on, but when you empty it , then it stinks because it's fermented food with enzymes- the digestion stop at the bottom of the short intestin ( ileum).


Thank goodness! I was pretty grossed out at that thought!


Bear in mind that if your tumor is very low and they can't save the sphincter, you will get a permanent colostomy rather than an illeostomy. The big difference is that stool is thicker, more like normal poop, so you just poop from a different place. I only empty my bag at home. Also, irrigating is an option for colostomy. It's like an enema. Some successful Irrigators don't wear a bag at all. I'm hit and miss with irrigation because sometimes it's easier to just slap a new bag on and other times I might want to wear a fitted dress and not want to worry about a bag bulge. They have mini bags that are the size of a small coffee can lid.

Regardless, there are a lot of options and life can be pretty "normal" even with a permanent colostomy. I remember reading about an irrigator that still wore bikinis at the beach (with a bandage over the stoma) and that really inspired me.

I had no idea that you could ever go without the bag. That's great news to read!
Colonoscopy 11/25/15
Dx 11/27/15 rectal cancer
CT scan MRI 12/1/15
Determined stage 3A 12/3/15
28 day Chemo / radiation therapy 12/21/15
1300 mg Capecitabine daily


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