<<added 6/10/2010: I had new data since this and choose TAE, see my posts later in this thread for a complete perspective!>>
Since you all shared so much with me, I'll try to return the favor and share where my head is at and how I got to the decision.
It took a while, and I was lucky enough to be in a postion to research the possibilities and provide guidance to the surgen on my wishes, not leave it up to them entirely.
However, I also know that once the surgeon begins their work, may find that based on cancer/anatomy, your only option may be APR. So I prepared and have accepted this as a possible outcome.
But assuming I have a choice, here is my process and what I decided - your mileage will vary.
1) Get opinions of 2-3 surgeons - experts in the field - I know insurance coverage will constrain who, where, and how many. Don't settle for 1 perspective. In my case I chose the top colorectal folk in Scranton, Johns Hopkins, and MSKCC.
2) Understand standard of care for stage and location of your cancer - readily avaiable on
http://www.cancer.org,
http://www.cancer.gov.
3) Ask the hard questions about both short and long term risks of each treatment option. Setting the expecation before the surgury will help deal with what actually is reality after surgery. Ignoring them will not change the odds of your outcome.
4) Get statisicial information from clinical studies with large numbers in the study.
http://www.ncbi.nlm.nih.gov/pubmed/5) Look and ask for first hand accounts from reputable internet forums like this Colonclub.com, uoaa.org, csn.cancer.org, to consider risks, results, and complicartions that you may not have thought of. This first hand informaiton is good, but always counter with statical studies as responses on the boards are only one perspective and not a scientific study. In fact, take what i write with a grain of salt and do your own dang homework!
6) Know thyself - what are your priorities - what can you deal with - what is the worse case. Again, setting expectations before hand.
7) Don't rush the decision and bounce it off a loved one - preconceptions about treatment, emotion, can have you deciding before you should. I found trying to explain to my wife and a good friend why i thought something was a good idea exposed helped me to really decide if I was right. The danger is their fears/prejudices can cause more confusion
I pushed my decision to the edge of when I should as I am looking at 10-12 weeks post neoadjuctive vs 6-8 that is normal.
My priorities
1) Cure the dang cancer
2) Quality of life - as in functional urinary, sexual and fecal control.
3) Balance surgery and recovery time vs benefit of surgery. How much time do you want to spent in a hospital/recovery vs how much time living a life vs how much time will you be managing your decsion for rest of life?
My options
All 3 recommended neoadjuctive chemo/radiation and post surgery chemo. In my case I responded very well to chemo/radiation with tumor no longer visible in the scoping 5 weeks after chemo/rad.
Given the tumor downstaging, my age 45, good health, no medications, I got 3 very different options for surgery.
1) Transanal excision (TAE), do a pathology, and if no signs of cancer monitor closley, else perform APR. Really attractive as TAE is outpaient, with low surgical risk or complications. Ruled out as not standard of care for T3, no significant study that show this option has low reoorrance or high long term surivcal rates. Also, if fails, then LAR no longer an option in my case.
2) APR + TME - the standard for removal of cancerous tissue in colon. Enables larger margins for tissue removal. Very tempting given less surgeries, a little shorter recovery time, and controlled incontinece (into a bag) better then in your pants should LAR not work out. Downside is bag maintence for life.
3) LAR + TME - emerging standard as recent studies show onocological results similar to APR. Depending upon the patient, this provides a mean to remove cancer and not have to have a colostomy. Need to weigh the possibility of fecal incontinence and a longer recovery time - 6-18 months. Some possibility of never being continent and need to do APR.
And my choice is: LAR + TME.
1) cancer removal - Onocological results for APR and LAR the same, TAE too risky - even for stage 1 appears unreliable
2) quality of life - recent sudies showing LAR with j-pouch has good return of continence at 6 months post surgery and improving over time. If it would not work in my case, then can revert to APR.
3) balance surgery and recovery time vs benefit of surgery.
Ideally I'd like to do LAR+TME, do the reversal, then the chemo as I think bowel recovery will be quicker, but will depend upon pathology from surgery and if I can get agreement from Sloan.
Below are some of the studies I used:
OVERVIEWS:
2009: M. McCourt - Rectal cancer
http://www.ncbi.nlm.nih.gov/pubmed/19580180 2006: Geibel - Modern management of rectal cancer: A 2006 update
http://www.wjgnet.com/1007-9327/12/3186.pdf2004: Chessin - Surgical Issues in Rectal Cancer: A 2004 Update
http://www.ncbi.nlm.nih.gov/pubmed/155552042003: McNamara - Methods and Results of Sphincter-Preserving Surgery for Rectal Cancer
http://www.ncbi.nlm.nih.gov/pubmed/127946191997: Surgical Treatment of Colorectal Cancer
http://caonline.amcancersoc.org/cgi/rep ... /2/113.pdf2005: Rengan - Distal cT2N0 Rectal Cancer: Is There an Alternative to Abdominoperineal Resection?
http://www.ncbi.nlm.nih.gov/pubmed/16051945Outcome/Quality of life - TME and preoperative radiation, LAR, APR:
2010: The relation between illness cognitions and quality of life in people with and without a stoma following rectal cancer treatment
http://www3.interscience.wiley.com/jour ... 0/abstract2009: Krouse - Health-related quality of life among long-term rectal cancer survivors with an ostomy: manifestations by sex.
http://www.ncbi.nlm.nih.gov/pubmed/197209202004: Marijen - Impact of Short-Term Preoperative Radiotherapy on Health-Related Quality of Life and Sexual Functioning in Primary Rectal Cancer: Report of a Multicenter Randomized Trial
http://journal.shouxi.net/qikan/article.php?id=2145072003: Engel - Quality of Life in Rectal Cancer Patients
http://www.ncbi.nlm.nih.gov/pubmed/128940132001: Grumann - Comparison of Quality of Life in Patients Undergoing Abdominoperineal Extirpation or
Anterior Resection for Rectal Cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1421194/2008: Lange - Faecal and Urinary Incontinence after Multimodality Treatment of Rectal Cancer
case study and discussion ofpossible issues and how to address.
http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed2002: Minsky - Sphincter Preservation for Rectal Cancer: Fact or Fiction?
http://jco.ascopubs.org/cgi/content/full/20/8/19712004: Rauch - Quality of Life Among Disease-Free Survivors of Rectal Cancer
http://www.ncbi.nlm.nih.gov/pubmed/147220432007: Chamiou - Long-term results of intersphincteric resection for low rectal cancer.
http://www.ncbi.nlm.nih.gov/pubmed/180430922000: Gamagami - Fecal continence following partial resection of the anal canal in distal rectal cancer: long-term results after coloanal anastomoses.
http://www.ncbi.nlm.nih.gov/pubmed/107159842005: DAI - Preservation of the continence function after intersphincteric resection using a prolapsing technique in the patients with low rectal cancer and its clinical prognosis.
http://www.cmj.org/Periodical/PDF/2008101650923570.pdf2005: Schiessel - Technique and long-term results of intersphincteric resection for low rectal cancer.
http://www.ncbi.nlm.nih.gov/pubmed/16086223 (NEED)
2005: Rullier - Sphincter Saving Resection End of the 2 cm Rule?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1409892/2001: Rullier - Preoperative radiochemotherapy and sphincter-saving resection for T3 carcinomas of the lower third of the rectum.
http://www.ncbi.nlm.nih.gov/pubmed/11685026