Age Factor and Colostomy

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momvocate
Posts: 3
Joined: Mon Jun 18, 2012 12:16 pm

Age Factor and Colostomy

Postby momvocate » Mon Jun 18, 2012 12:33 pm

Anyone out there/or member of family have a colostomy at the age of 81 or near that? My mom is facing this in August 2012. Just looking for some insight. Has anyone ever refused that radical surgery? We are awaiting the post chemo/radiation scan to tell us if and how much the tumor has shrunk. She experienced a devastating time with the radiation burn and subsequent 11 day hospital stay for a radiation induced bowel obstruction. Any thoughts/comments appreciated.

I don't have all the abbreviations down, but here's the list:

Turning 81 in July
Diagnosed 3/12
UT3 NO MO
2-4cm from dentate, 22mm x 22mm non-circumferential, up to 11mm thick
Chemo/Radiation stopped 5/24/12 due to complications
3 treatments short of 5 wk/5days radiation
3 days short of 5 wk Xeloda
Awaiting scan results post treatment

Thanks,
Daughter (momvocate)
Daughter of Patient who is:
Turning 81 in July
Diagnosed 3/12
Stage IIa
UT3 NO MO
2-4cm from dentate, 22mm x 22mm non-circumferential
Chemo/Radiation stopped 5/24/12 due to complications
3 trtmnts short of 5 wk/5days radiation
3 days short of 5 wk Xeloda

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Age Factor and Colostomy

Postby weisssoccermom » Mon Jun 18, 2012 1:45 pm

First of all, welcome to our board. I am really sorry that you had to have found us under the circumstances, but still, glad that we might be of help.
To answer your question, from a personal point of view, yes, I did refuse the radical surgery. In my case, the first surgeon wasn't sure what the chances were of a permanent colostomy - later it turned out that it was doubtful that I would need that. However, I did refuse the LAR which is also termed as radical surgery.
I'm certainly NOT saying that this should be your mothers choice however.
Let me ask you some questions. Has your mother sought the opinion of a board certified colorectal surgeon? I ask because so many general surgeons do the surgery but are not board certified and, I think you'll find that the opinion of most on this board is that with rectal cancer a patient really should be with a board certified colon and rectal surgeon. Here's the link to make sure that the surgeon your mom is considering is board certified.

http://www.abcrs.org/cgi-bin/search.pl

Even if the surgeon your mom is considering going to is board certified, I would highly suggest getting a second opinion. Your mom isn't far enough out of radiation yet to ascertain how well the treatments have worked. The newer protocol suggests waiting at least 8 weeks before treatment but going out as far as 12. Ten - 12 weeks seems the 'norm'. Honestly, a scan will not tell much about the shrinkage that has taken place. For accurate information, the surgeon really needs to do a scope (not a full colonoscopy) to see what is going on. Scanning now also isn't the ideal time either and FYI - scans have a difficult time discerning between scar tissue/tumor at this timeframe.

My advice to you would be to have your mom get another opinion - scheduled for the beginning of July at the earliest. That would give her some time to heal from the radiation before having someone do a 'look see' on her. This is only my opinion, but if that were my mom, I wouldn't put her through that surgery at age 81. IF the tumor has shrunk significantly, I would talk to the surgeon about an excision - specifically because of her age. Some other questions to consider. How is your mom's overall health?? Is she in good health to recuperate from this type of surgery? How is she emotionally dealing with it? What, if anything, has the doctor said about adjuvant (after surgery) chemo?? If it is recommended, is your mom willing to take it? If so, what types? Some are very hard - others, like Xeloda aren't as bad. I would highly suggest that you and your mom make some appts with the onc to talk about the different scenarios of chemo and then make an appt with another surgeon for a second opinion. Make sure that your mom is comfortable with whatever scenario she decides upon BEFORE she starts the process. While you don't want to just do nothing, you do have some time. Don't feel pressured into setting a date for a surgery that she may/may not be comfortable with before exploring ALL her options.

Good luck.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

RixInPhx
Posts: 1904
Joined: Fri Oct 08, 2010 11:53 pm
Location: Phoenix

Re: Age Factor and Colostomy

Postby RixInPhx » Mon Jun 18, 2012 2:37 pm

So sorry to hear of your mother's condition, and your need to join our club.
But you've come to a good place for experiences of others in similar situations, and for support.

In addition to the medicaal necessity/desire to the procedure, a major factor is your mother's general state of health.
At 81, my mother was quite feeble and not capable of taking care of a colostomy on here on her own.
Others are in excellent health and quite active, and the appliance would be no problem.

HTH, Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192

Olivia
Posts: 9
Joined: Fri May 06, 2011 7:41 pm

Re: Age Factor and Colostomy

Postby Olivia » Mon Jun 18, 2012 3:17 pm

My Mother got a colostomy as a Christmas present last December (long story for another thread). She turned 84 in April. She is not the most fit or active, but recovered ok. Had several visits with a good ostomy nurse and she manages her appliance well on her own.
Can't comment on the radiation/surgery issues, but good luck..........

User avatar
MonaL
Posts: 479
Joined: Sun Feb 15, 2009 2:42 am

Re: Age Factor and Colostomy

Postby MonaL » Mon Jun 18, 2012 4:35 pm

My mom had a C Diff infection and lost her colon. She had an illeostomy at 84 years old, in 2009. She can empty the bag herself, but she can't change it because of her vision, and possibly, even then, with her mobility issues, might not be able to. My Dad has been just wonderful and changes the bag for her. Of course, a colostomy bag is in a different location, but I don't know about the other distinctions very well.

I should add, she was not fit or active at the time, but, at least in her situation, it was lifesaving. It took her a long time though to actually understand exactly what happened, but part of that might have been because she was so very sick and most of this happened without her being conscious of it.

Best of luck with all of this, it's all tough....
Dad, stage IV CC, mets to liver, 2007-2008
surgery, Xelox, and IP-6
NED summer 2009
surveillance stopped summer 2014, due to age
died 1/2018 at age 88, from Parkinson's and respiratory infection
(Parkinson's triggered by one of his cancer surgeries and/or chemo)

User avatar
elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Age Factor and Colostomy

Postby elise » Tue Jun 19, 2012 9:38 am

I was given the option of a full colon resection with colostomy or a partial (right memo-colectomy) knowing I'd be poked and proded a lot for the rest of my life. I chose a partial. My surgeon was ok with it.

Make sure you understand all the pros and cons of all the options offered for your mother. I'm sorry you're in this boat :(
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

momvocate
Posts: 3
Joined: Mon Jun 18, 2012 12:16 pm

Re: Age Factor and Colostomy

Postby momvocate » Wed Jun 20, 2012 12:44 pm

I'm back, sorry, just had to take a brain break! Let's see-her surgeon is a Board Certified Colorectal surgeon. I actually e-mailed him after I posted this post, and got a very prompt response. Here it is:(My question was: If the chemo/radiation treatment successfully downstages her tumor with either clinical (cCR) or pathologic complete response (pCR), would you consider trans-anal excision rather than the permanent colostomy surgery? His answer:
"This is a very good question and one that a lot of people would like to know the answer to. The issue is that there is no reliable way to determine a complete pathologic response by looking clinically. While removing the rectum and finding no cancer is very unappealing to everyone involved there is no information on whether the cancer would have cropped up later to cause a problem if not removed. While a topic of many studies and something offered by people a local excision in this situation is not something I advise or offer to patients. It makes some intuitive sense to take out the “scar” in the rectum and see if there is tumor but the behavior and biology of these cancers is more complex than that and I wouldn’t know what to do with information. If we were to go down that route and the tumor were to return we do know that those patients have a much worse prognosis than if we had just done the big surgery from the beginning. I hope this helps. I think the treatment of rectal cancer is very difficult with a lot of these different questions not currently answered."

My Mom is in good health, is now recovering well from the radiation/chemo. I guess my next question to the doc is, will the colostomy surgery provide enough answers to state that she will not have a recurrence? I wonder what the difference is between recurrence after radical surgery and after excision?

I guess my question for the board is: how do you get a second opinion? Does the clinic share records, or does the new doc have to do all his/her own research? Can I get the records and have them looked at in another state?

-Momvocate
Daughter of Patient who is:
Turning 81 in July
Diagnosed 3/12
UT3 NO MO
2-4cm from dentate, 22mm x 22mm non-circumferential, up to 11mm thick
Chemo/Radiation stopped 5/24/12 due to complications
3 treatments short of 5 wk/5days radiation
3 days short of 5 wk Xeloda
Daughter of Patient who is:
Turning 81 in July
Diagnosed 3/12
Stage IIa
UT3 NO MO
2-4cm from dentate, 22mm x 22mm non-circumferential
Chemo/Radiation stopped 5/24/12 due to complications
3 trtmnts short of 5 wk/5days radiation
3 days short of 5 wk Xeloda

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Age Factor and Colostomy

Postby weisssoccermom » Thu Jun 21, 2012 9:58 am

No surgeon can or should tell you that by having any surgery (when one is dealing with cancer) that they can tell you no recurrence. The odds might be higher but unfortunately, that just isn't the case. Obviously with a colostomy, your mom wouldn't have a rectal recurrence, but there's no guarantee that she couldn't recur in the pelvic region (although the chemoradiation does significantly minimize that risk - but it's not gone all together) nor is there any guarantee that she couldn't have a distant recurrence. It would be nice to say that having a colostomy takes all the risk of recurrence away, but simply put, it doesn't.

As to seeking another opinion, I would highly recommend it. First of all, your mom should have a copy of ALL her test results. If not, I would highly suggest you start gathering those up and keep a notebook. A three ring binder, complete with dividers, is the best way. Make a section for things like the pathology report, colonoscopy reports (she'll be having more of these), CT/Ultrasound/PET, etc. reports, blood work, etc. Does your mom have a family doctor?? If so, has the GP been getting all these reports? Sometimes when the patient has an already good, established relationship with the GP, they are the easiest one to go to to get all of this information. Then, when you want to make a second opinion appt, you have all the information at your fingertips and can easily either take the info to the new doc or fax it. I would highly suggest (this is my opinion) that you not ask your current surgeon for another doc's name - particularly another one in the same practice. If surgeons work together or have some other professional relationship, they will tend NOT to disagree with one another. Your clinic or doc's office should share that info but your mom will likely have to sign a release of information authorization to allow them to send her records. This is one reason why I would HIGHLY suggest that you start accumulating all of her records and keep them in one, easily accessible place.

Hope this helps.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Surroundedbylove
Posts: 3126
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Age Factor and Colostomy

Postby Surroundedbylove » Thu Jun 21, 2012 10:40 am

Is the doctor recommending a permanent colostomy or a temporary ileostomy?

My MIL had permanent colostomy surgery this year - she is age 88 and very active. The colostomy surgery gave her a life back because her medical condition otherwise made her tied to a home to be close to a bathroom at least every other day. She recovered well from the surgery and is thrilled.

SBL
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

momvocate
Posts: 3
Joined: Mon Jun 18, 2012 12:16 pm

Re: Age Factor and Colostomy

Postby momvocate » Sat Jun 23, 2012 2:29 pm

weisssoccermom, Surroundedbylove, et al,
Thank you for this excellent advice/insight. I am now going to hang off the board a bit and get moving on what I need to do. Thanks a bunch and I'll let you all know what happens!

-momvocate
Daughter of Patient who is:
Turning 81 in July
Diagnosed 3/12
Stage IIa
UT3 NO MO
2-4cm from dentate, 22mm x 22mm non-circumferential
Chemo/Radiation stopped 5/24/12 due to complications
3 trtmnts short of 5 wk/5days radiation
3 days short of 5 wk Xeloda


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