Transanal excision for T3 follow up

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
dschreffler
Posts: 102
Joined: Wed Apr 28, 2010 3:24 pm

Transanal excision for T3 follow up

Postby dschreffler » Sat Jul 17, 2010 3:06 pm

Cross posting from the CSN board:

Since I've pestered for so much info over the past months on surgical options, I figured it was time to share my results.

It has been almost 5 weeks since I had transanal excison for my T3 rectal cancer. For details, see link on the signature below.

Short form:
Had transanal excision surgery for my T3,Nx,M0 RC, after a great response to neoadjuctive chemo/radiation. Procedure was an outpatient, was relatively easy recovery, and am close to being back to normal in terms of body function/energy, etc. I returned to work 4 weeks post surgery.

Clear margins - pathology came back clean.

I start 9 rounds of chemo (FOLFOX) on Monday, as planned prior to surgery.

Risk was if pathology not clean, would have ended up with an APR surgery vs LAR. Other risk was reoccurance, but mitigating with post surgery chemo.

For me (strongly note the "for me") this option chosen to try less radical surgery first. Key to limiting reoccurance is to have post surgery chemo despite the clean pathology.

Regards,

Dan
DX:T3,Nx,M0 2/5/10 RC 3cm@analverge CEA7.3
Neoadjuntive 2/24-4/5: 28 rad/Xeloda(M-F),5 rnds Oxaliplatin,IVwkly
6/15/10-TAE surgery 10 weeks aft neoadjunctive.
Path clean, CEA1.3
post surgery 12 rnds FOLFOX
NED 1/26/11
http://csn.cancer.org/user/120360

rickker20
Posts: 117
Joined: Sat Apr 17, 2010 1:55 pm
Location: Houston Texas

Re: Transanal excision for T3 follow up

Postby rickker20 » Sat Jul 17, 2010 7:08 pm

Very risky but it's your choice good luck and hope everything works out.
Rectal Cancer 6/09
Stage 1 T2
9 days of 5fu
2 days of Avastin
5 weeks of Radiation
Lar 9/09 failed
Pull thru surgery 10/09
Rectum Removel,38 lymph nodes remove all cancer free
6 weeks of 5fu & Folfox
Bag reversal 6/10 & Port remove
Cancer free

weisssoccermom
Posts: 5966
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Transanal excision for T3 follow up

Postby weisssoccermom » Sat Jul 17, 2010 7:45 pm

Rickker,

I may get blasted for posting this but.....I really have a problem with your comments about the excision - and this isn't the first post like that. First of all, for select patients (trust me, I've had an excision and for four years now I have "done my homework on this") this option, along with adjuvant chemo provides results that are just as good as the more radical surgery. The term "radical' is not my terminology....it is an adjective commonly used in the medical literature to describe the APR or LAR surgery.

I realize that your surgeon didn't think it was an option for YOU, however, that doesn't mean it's not an option for other patients. It may very well be that your surgeon isn't comfortable doing that surgery or that you weren't the best candidate or any other number of reasons, but to simply say that it is 'very risky' without knowing anything about his situation is just wrong. My opinion, it's just plain and simply rude to say that what Dan chose to do was 'very risky'. Let me further educate you. Yes, I will agree that an excision by itself, is risky and the risk of recurrence is high. However, add to the mix some neoadjuvant chemoradiation (which btw, has been proven to reduce the risk of local recurrence by approx 1/2 regardless of which type of surgery the patient has), then add some more adjuvant chemotherapy to the mix and FINALLY, add the ever so thorough and sometimes very annoying followups and you have a combination therapy that has success rates that rival the more radical surgery in select patients. The key is how to determine who is a good patient and the researchers and surgeons who are doing trials with this and those that have been successful in this approach (Dr. David Medich- Pittsburg, Dr. Marks - Philadelphia, Dr. Habr-Gama - Brazil, et al) have concluded that patients who have a complete clinical response or near complete clinical response to chemoradiation present as ideal candidates. Dan fits that profile. If you'll take note of Dan's post, he also is completing or will complete each and every step of the 'protocol' i.e. - neoadjuvant chemoradiation, excision, adjuvant chemo (and not 'chemo lite' either!) and meticulous follow ups. If you'll also notice, Dan made it very clear that this was his first choice and, I can assure you that he is acutely aware that if something should arise, he realizes that his next option will be to have the more radical surgery. I would also like to point out that many surgeons talk about the stats for excision alone and either aren't aware of the small but growing number of studies showing it to be a viable solution to select patients with high survival rates or those same surgeons just don't want to even discuss it. Either way, you can't compare apples to oranges....meaning don't compare the stats for excisions alone with the stats for the entire protocol because they just aren't the same.

From what his pathology report indicated, yes, Danis the 'ideal' candidate. There is absolutely NOTHING wrong with the plan that he has laid out - truthfully you know nothing about what his followup entails. As Dan indicated, even with a 100% clean path report, he is opting to take adjuvant chemo.....and I may add, some heavy duty chemo at that.

Rickker20, let me assure you that his surgeon/onc will keep close tabs on him and his follow ups will be thorough. As he said, this was the best decision 'for him' and while it may not be the decision you would have chosen, that too is ok. I would never presume to tell you that your choice of surgery/treatment was overkill or anything like that becuase it's not my place. Obviously, Dan's surgeon and onc are 'on board' with this and they wouldn't have either recommended it or gone along with it if they thought he was 'doomed' to failure. There is another very important factor to consider as well when one (like myself) makes this decision. The quality of life issues are oftentimes overlooked in rectal cancer surgery. Yes, some people such as Eric (brownbagger) appear to come through his treatments quite well but there are more cases of patients who long term have issues (particularly those patients who have received neoadjuvant chemoradiation) with their bowel habits/incontinence. For me, that was a HUGE issue - one that I had to consider very carefully when making my decision as to what type of surgery I wanted. No, an excision isn't for everyone....just like a colostomy isn't for everyone....and just like an LAR isn't for everyone. Consider that as more patients participate in these 'trials' .....whether those be trials with chemo, radiation, surgery or any combination...new surgical techniques and protocols will likely evolve for future rectal cancer patients.

Dan, good luck. Keep up with the frequent followups (yeah, I know that they're a pain but.....get through them). RIght now, just take your chemo one session at a time and get through that. Set your sights on the end (but always remember that a low blood level, etc. could push you back a time or two) of your chemo and then concentrate on getting your strength back and getting back to 'normal'...whatever that may end up being.

Take care.
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

linaSD
Posts: 13
Joined: Fri Feb 26, 2010 8:39 pm
Location: Idaho

Re: Transanal excision for T3 follow up

Postby linaSD » Sat Jul 17, 2010 8:54 pm

I am a transalal excision survivor, NED for one year now. In the beginning my doctors also were insistant that a colostomy is the best way to treat this, but when I asked how much difference there was between the two different treatments all they could come up with was about 3% difference in re-occurence. The most important thing with any of these treatments, no matter which way you go, is to keep doing the follow ups as needed to stay on top of things should a reoccurance happen. I do not believe that the "one size fits all" approach to treatments is right at all. We each have different bodies, diagnoses, and treatments. No matter what the cancer treatments are risky. The best thing we can do is educate ourselves as much as possible so that we can make the best decisions possible.
Carolyn
Stage I T1-N0 M0. Rectal Cancer
Surgery 6/8/09
6wkx xeloda & 30 radiations
7/11 lung mets
avastin/renitinkin/xeloda 3yrs treatment
3/14 cyberknife left lobe
5/14 lobectomy right center lobe
VATS upper and lower right lobes
7/14 clear scan NED

User avatar
dschreffler
Posts: 102
Joined: Wed Apr 28, 2010 3:24 pm

Re: Transanal excision for T3 follow up

Postby dschreffler » Sun Jul 18, 2010 10:06 am

For me not "very risky" as having researched options for 3 months, based on how my tumor responded to neoadjuctive chemorad, and the clear margins shown in pathology from the surgery.
TAE surgery alone is risky whether for T3 , T2 or even T1. But add in the following, and risks mitigated:

1) Post surgery chemo - I will have 9 sessions of FOLFOX starting 7/19. This is same chemo I would have received if they found positive nodes.
2) Do prescribed follow ups - scope/ultra sound every 3 months/CT every 6 months for 2 years. Already queued up for September.

The advantage is less complications (recovery time, bowel mgt.), and less surgeries (temp ileo, then takedown/reversal).

The LAR and pull through surgeries also had risk - anytime doing surgery you are at risk, but quality of life aspects compel folk to understand the risk vs rewards and then choose based on those facts. Take down/reversal surgeries do not prevent cancer reoccurrence. All patience could default to APR's, but they understand the risks to get to a possibly better quality of life - despite the risk due to additional surgeries and complications.

In my case, I decided to do the least amount of cutting to the body while still ensuring the cancer got removed.

As posted in prior thread: (viewtopic.php?f=1&t=11804&start=45)

Neoadjuctive chemo/rad + TAE + more chemo
This approach was heavily favored by both my local surgeon and oncologist given my reponse to the chemo and radiation so far, as well as my youthful age of 45.
1) cancer removal - Onocological results in line with other options provided post surgery chemo and with proper surveillance (scope/ultra sound every 3 months for 2 years. CT every 6 months.)
2) quality of life - Expecting little impact on fecal control or impact to sexual/urinary function short term and more importantly long term.
3) Balance surgery and recovery time vs benefit of surgery. The least recovery time due to surgeries or any option.

Supporting studies:
These studies have a small sample size, so I know this is not standard of care as generally APR or LAR the recommendation.

2008: Long-Term Results of Transanal Excision After Neoadjuvant Chemoradiation for T2 and T3 Adenocarcinomas of the Rectum
26 men and 18 women. Overall 5-year survival rates for T2/T3N0 and T2/T3N1 patients were 84% and 81%, respectively.

2004: Long-term results using local excision after preoperative chemoradiation among selected T3 rectal cancer patients
Actuarial overall survival at 5 years was 86% in the local-excision group compared with 81% among mesorectal-excision patients (p = NS), and 85% in patients with a complete clinical response to chemoradiation followed by mesorectal excision by APR or LAR (p = NS).
26 patients.
In an experience stimulated by patient refusal of APR, highly selected patients who responded well to conventional external-beam radiotherapy (CXRT) were selected to undergo local excision. Most of these patients had pathologic complete response. Local control and survival rates are comparable to those achieved with chemoradiation followed by mesorectal excision. This strategy should be prospectively studied in a group of patients with low rectal cancer who have no clinical evidence of tumor after chemoradiation.

2002: Transanal excision of locally advanced rectal cancers downstaged using neoadjuvant chemoradiotherapy
11 patients
CONCLUSIONS: In patients who have initial bulky (T3) lesions, and experience significant downstaging after neoadjuvant chemoradiotherapy, transanal excision appears to be a safe and effective treatment, preserving sphincter function and avoiding laparotomy.

Regards,

Dan
DX:T3,Nx,M0 2/5/10 RC 3cm@analverge CEA7.3
Neoadjuntive 2/24-4/5: 28 rad/Xeloda(M-F),5 rnds Oxaliplatin,IVwkly
6/15/10-TAE surgery 10 weeks aft neoadjunctive.
Path clean, CEA1.3
post surgery 12 rnds FOLFOX
NED 1/26/11
http://csn.cancer.org/user/120360

User avatar
BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Transanal excision for T3 follow up

Postby BrownBagger » Sun Jul 18, 2010 11:06 am

One thing that began to dawn on me as I got into treatment, Dan, is that cancer forces us to make some difficult choices. On the other hand, at least we do have a choice on many things. Nine rounds of chemo is a tough choice to make. Surgical options are tough. You talk to your doctors and loved ones, do your own research, follow your heart and get the best medical care that you can. Your approach may not be the most common, but you've obviously considered all the angles and decided this is best for you. So I say, good for you.

I had the option of either getting my LAR, etc. done laproscopically or by the conventional, open-the-guy-up method. I chose the latter. My thinking was: "I want to provide the surgeon with the best opportunity to get me fixed up right (the first time), and I think the hands-on approach offers the best chance of making that happen. I'm relatively young and strong, so I'm pretty sure I can bounce back from a 5-inch incision." It's not that I have anything against the lapo approach, just in my case I decided this was the way to go. Downside is a higher risk of infection and longer term, risk of herniation.

As I said, tough choices abound.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

rickker20
Posts: 117
Joined: Sat Apr 17, 2010 1:55 pm
Location: Houston Texas

Re: Transanal excision for T3 follow up

Postby rickker20 » Sun Jul 18, 2010 4:30 pm

From National Cancer Institute

Stage I Rectal Cancer

Stage I tumors extend beneath the mucosa into the submucosa (T1) or into, but not through, the bowel muscle wall (T2). Because of its localized nature at presentation, stage I has a high cure rate.

Standard treatment options:

Wide surgical resection and anastomosis when an adequate low-anterior resection (LAR) can be performed with sufficient distal rectum to allow a conventional anastomosis or coloanal anastomosis.
Wide surgical resection with abdominoperineal resection (APR) for lesions too distal to permit LAR.
Local transanal or other resection [1,2] with or without perioperative external beam radiation therapy (EBRT) plus fluorouracil (5-FU).
There are three potential options for surgical resection in stage I rectal cancer: local excision, LAR, and APR. Local excision should be restricted to tumors confined to the rectal wall and that do not, on rectal ultrasound or magnetic resonance imaging, involve the full thickness of the rectum (i.e., not a T3 tumor). The ideal candidate for local excision has a T1 tumor with well-to-moderate differentiation that occupies less than one-third of the circumference of the bowel wall. Local excision should only be applied to very select patients with T2 tumors, as there is a higher risk of local and systemic failure.

For patients with T1 and T2 tumors, no randomized trials are available to compare local excision with or without postoperative chemoradiation to wide surgical resection (LAR and APR). Investigators with the Cancer and Leukemia Group B (CALGB) enrolled patients with T1 and T2 rectal adenocarcinomas that were within 10 cm of the dentate line and not more than 4 cm in diameter, and involving not more than 40% of the rectal circumference, onto a prospective protocol, CLB-8984. Patients with T1 tumors received no additional treatment following surgery, whereas patients with T2 tumors were treated with external beam radiation therapy (54 Gy of 30 fractions, 5 days/week) and 5-FU (500 mg/m2 on days 1 through 2 and days 29 through 31 of radiation). At 48 months median follow-up, the 6-year failure-free survival and overall survival (OS) rates for patients with T1 tumors were 83% and 87%, respectively. For patients with T2 tumors, the 6-year failure-free survival and OS rates were 71% and 85%, respectively.[3]

Patients with tumors that are pathologically T1 may not need postoperative therapy. Patients with tumors that are T2 or greater have lymph node involvement about 20% of the time, and additional therapy should be considered, such as radiation and chemotherapy, or more standard surgical resection.[4] Patients with poor histologic features or positive margins after local excision should consider LAR or APR and postoperative treatment as dictated by full surgical staging.
Rectal Cancer 6/09
Stage 1 T2
9 days of 5fu
2 days of Avastin
5 weeks of Radiation
Lar 9/09 failed
Pull thru surgery 10/09
Rectum Removel,38 lymph nodes remove all cancer free
6 weeks of 5fu & Folfox
Bag reversal 6/10 & Port remove
Cancer free

weisssoccermom
Posts: 5966
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Transanal excision for T3 follow up

Postby weisssoccermom » Sun Jul 18, 2010 6:53 pm

Rickker,
Did you bother to look at the dates on this trial and/or the wording of what the trial proposed/didn't propose??
First of all, when you click on the link to the trial, under 'published results' at the bottom of the outline, the dates were 1997 and 1999. Furthermore, go and click on the abstract that is in PubMed - taken from the article originally published in the Annals of Surgical Oncology 1999 Jul-Aug issue. My point is, this study is quite old and, if since you were the one that 'opened the door' so to speak, it does NOT even compare at all with what Dan or I have gone through.

In my earlier post, I warned about comparing 'apples to oranges' and Rickker, you are doing just that. Let me point out the very distinct differences:

1. This study does NOT talk about neoadjuvant chemoradiation at all - rather it talks about only treated T2 patients with adjuvant chemoradiation - HUGE DIFFERENCE
2. As this study makes no mention of neoadjuvant chemoradiation, you have totally negated the premise of the 'ideal' candidate - one that appears to have a complete clinical or near complete clinical response to the treatment - again, HUGE point your 'study' doesn't even mention
3. This 'article' that you published doesn't mention, as both Dan and I did, that another key to success is the addition of adjuvant chemotherapy.

Rickker, you are trying to say that this surgery is 'very risky' in situations that are NOT the same scenarios and don't follow the same protocol that Dan and I mentioned. Frankly, it's 'very risky' and irresponsible to try and compare two different protocols to make your point.

You're also missing the other very obvious point here. Dan's doctors (and mine as well) agreed with this treatment plan as a perfectly viable option for our select cases and gives us results with little to no extra risk. Sure, it probably entails more treatment and follow up than the radical surgery but that was/is our decision and those decisions should be left up to the patient and his/her doctors. No one is saying that this is the best option for everyone but certainly, IF a patient has a superb response to neoadjuvant chemoradiation, IF the patient is willing to undergo all the 'phases' of the entire treatment plan, IF the patient desires this option and IF the surgeon/onc all agree then who are you to say that this is a 'very risky' surgery???? As I said in my earlier post, if your surgeon didn't feel that it was the best treatment plan for you and you didn't want to 'go there' then that's your choice and that was the right choice for YOU! This was the right choice for Dan and I might add, the right choice for ME as well.

The study you cited doesn't address the treatment plan that Dan talked about and as such, can't be compared with the protocol/treatment plan (or the statistics from that treatment plan) that Dan talked about.

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

rickker20
Posts: 117
Joined: Sat Apr 17, 2010 1:55 pm
Location: Houston Texas

Re: Transanal excision for T3 follow up

Postby rickker20 » Sun Jul 18, 2010 7:30 pm

Jaynee

Was your tumor a T3? I'm asking because you are considering that a T3 tumor is fine for Local Excision. I spoke 4 doctors from MD Anderson, Methodists Hospital, CRC, Herman Hospital and not one agree that I should get local excision for a T3 tumor. I guess they all must be wrong. I have 4 specialist telling me this was not the correct thing to do. Sure I could have look around and found one that would have agreed with me and could have done a local excision but I could not against the recommendation of 4 specialist. I'm glad for you and Dan and again hope for the best outcome.
Rectal Cancer 6/09
Stage 1 T2
9 days of 5fu
2 days of Avastin
5 weeks of Radiation
Lar 9/09 failed
Pull thru surgery 10/09
Rectum Removel,38 lymph nodes remove all cancer free
6 weeks of 5fu & Folfox
Bag reversal 6/10 & Port remove
Cancer free

weisssoccermom
Posts: 5966
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Transanal excision for T3 follow up

Postby weisssoccermom » Sun Jul 18, 2010 10:09 pm

Yes, my tumor was staged as a T3. There has been some questions about whether or not my tumor was a late T2 or an early T3 but it was classified on my ultrasound as a T3. As I stated earlier, having an excision without meeting all the criteria of the newer studies wouldn't be the wisest of decisions and just because some people with a T3 tumor are candidates for excision certainly doesn't mean that everyone is. I'm not saying that the doctors you consulted were wrong in their assessment of the excision for YOU, but just because they said it wasn't a good decision in your case doesn't necessarily mean that it's not a viable and/or good decision for another patient. Conversely, just because someone on this board or someone is some study has had a treatment doesn't mean that that treatment is applicable for another person.

Just as you feel your surgeons gave the best option for you, I also believe that my surgeon took into consideration all the facts in MY case and, in conjuction with me and my onc, helped me come up to the best decision for ME. Are you saying that all the surgeons who are studying this option, who believe in the treatment protocol as described in previous posts are wrong???? Rickker, without patients and doctors who are willing to explore other options, who are willing to participate in trials, who are willing to 'think outside of the box', newer and safer treatments will never come to fruition. Just so you know, I also spoke to some surgeons who wouldn't even consider an excision - simply because it wasn't the 'standard of care' yet I had more than one BOARD CERTIFIED COLORECTAL surgeon who thought that (a) due to my excellent response and (b) due to my willingness to submit to rigorous, thorough and meticulous follow ups, I was an ideal candidate.

My point in all of this is simple. Regardless of what treatment a member of this board gets, its not up to any of us to be putting it down and putting doubt into their minds. We have no idea what thought processes that person went through in coming to their decision. Hopefully whatever a poster chooses to do/not to do, he/she has thoroughly researched all options and has taken every facet of risk, survival benefits, quality of life issues, etc. into consideration when making the decision. Keep in mind that everyone on this board has different criteria when making decisions about treatments. To some, survival at all costs is all that matters, while others take into consideration existing health issues, quality of life issues, etc. There is no right or wrong when a patient makes a decision about his/her own treatment options. I don't know what criteria is important for you and conversely, you don't know what criteria is important for me and regardless of what our personal beliefs are, we don't have the right to 'bash' another person's choices. Rickker, in a previous post, you indicated that you had a 'pull through' surgery because of some complications and because you wanted to avoid a colostomy. Was your choice right??? There would be surgeons who wouldn't do that surgery because of higher complication rates and again because it wasn't 'standard of care'. That doesn't mean, however, that for YOU it wasn't the best choice.

Let me further clarify one point that you made. I am not making a blanket statement for ANYONE that a local excision, regardless of T stage is fine - so please don't infer that I am. I am saying, however, that studies are showing that patients with T3 tumors that have a good response to neoadjuvant chemoradiation (good would be a complete clinical response) can be good candidates for a local excision. That doesn't mean that the patient has to have that surgery - just that it is a viable option to a highly select group of patients who fit the criteria. I have no idea whether or not you fit that criteria and even if you did, that certainly doesn't mean that you may have wanted the excision over another type of surgery.

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

User avatar
dschreffler
Posts: 102
Joined: Wed Apr 28, 2010 3:24 pm

Re: Transanal excision for T3 follow up

Postby dschreffler » Mon Jul 19, 2010 10:26 am

Yikes... My intent was only to report in.
I did not shop around for someone to do TAE. In fact after having 3 opinions, was set to do an LAR, but series of appointment and insurance misqueues allowed time for both my local onc and surgeon to make their case for their recomendation why TAE was right given my specific case. I met the criteria and does not universally apply to all T3's.
Funny, as back in March I was considering strongly APR as it showed the best results against reocurrance due to bigger margins. Then looking at more recent studies, and considering quality of life, LAR was also attractive.
My point in posting is to let folk know that there are many options that folk need to reconcile with their priorities and specific cancers. No one size firs all, and seek 2-3 opinions.

Peace
DX:T3,Nx,M0 2/5/10 RC 3cm@analverge CEA7.3
Neoadjuntive 2/24-4/5: 28 rad/Xeloda(M-F),5 rnds Oxaliplatin,IVwkly
6/15/10-TAE surgery 10 weeks aft neoadjunctive.
Path clean, CEA1.3
post surgery 12 rnds FOLFOX
NED 1/26/11
http://csn.cancer.org/user/120360

Ktwirls
Posts: 147
Joined: Thu Aug 12, 2010 9:12 am
Location: Quad Cities IA/IL
Contact:

Re: Transanal excision for T3 follow up

Postby Ktwirls » Thu Sep 09, 2010 11:31 pm

I know this is an old thread, but found it when googling "patient refusal of apr surgery". That is me, I am sersiously considering not doing the APR surgery. I don't want the "standard of care". I am not standard. I am a T3. I have yet to find anyone doing what I am doing-- after dx first started on 8 rounds of FOLFOX (on number 6 now and after round 2 no symptoms I had previously--now I have no blood, normal stool size, and no pressure of the mass that was felt before this, and cea level went from 13 to 2 after 5 rounds), then to do 6 wks radiation w/ 24/7 5fu chemo pump, then I am supposed to have a the recommended APR surgery. I feel like if I have great response to this treatment I do not want to do the APR (or LAR even though they don't even offer me that!). I see that you say that your rectal was within 3cm of anal verge. Mine is 1-2 cm. I wonder how mine being closer would effect doing the tae. I have only talked to the gi surgeon once right after dx and was totally like a deer in head lights so you just took what they said. But after learning and reading and reading and thinking for me I can't see doing the surgery. I have only had ongoing contact with my chemo dr and told him this and of course he is like no do what the surgeon says. He thinks I don't want to live because I don't want the surgery! He actually said that! No! I WANT to LIVE that is why I don't want the surgery. I want the life *I* want for me. Everyone is different and I respect what they choose for themselves.
Kim Ann, mom to 6
dx May 2010 age 37 (symptoms started in pregnancy age 36)
Rectal Cancer stage 3b T4,N1
FolFox 8, chem/rad 6wks
It came back March 2014
APR w/ PPE surgery, now on chemo, latest scan NED
http://cancercaughtme.blogspot.com/

User avatar
Terry
Posts: 5536
Joined: Wed Oct 03, 2007 10:36 pm
Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

Re: Transanal excision for T3 follow up

Postby Terry » Thu Sep 09, 2010 11:51 pm

They have only recently started doing chemo after surgery with transanal resections. I had mine in 2007, first I had 7.5 weeks of cont. infusion 5FU/radiation, surgery 2 1/2 months after. I had moderately clean borders and begged for folfox. It wasn't the standard of care and they wouldn't give it to me. Now they are doing the adjuvant chemo which I'm happy about. My cancer may have spread no matter which procedure I had and I'm sure not going to beat myself up about it. I made a choice and it spread BUT they're treating it differently now. Also, since I have mucinous adenocarcinoma it's likely it went through my bloodsystem. It's not for us to judge what another person on here chooses to do. It's up to us to support unless someone is asking us for advice before their procedure. My advice to someone would be make sure you get adjuvant chemo (and not chemo lite).
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

Ktwirls
Posts: 147
Joined: Thu Aug 12, 2010 9:12 am
Location: Quad Cities IA/IL
Contact:

Re: Transanal excision for T3 follow up

Postby Ktwirls » Fri Sep 10, 2010 12:26 am

Just trying to understand---so is getting all the stuff before surgery the "old" way? so folfox should be after surgery is the "new" way?
and is what I am doing in terms of chemo considered "lite"? I want the most chemo I can get!
thank you for helping
Kim Ann, mom to 6
dx May 2010 age 37 (symptoms started in pregnancy age 36)
Rectal Cancer stage 3b T4,N1
FolFox 8, chem/rad 6wks
It came back March 2014
APR w/ PPE surgery, now on chemo, latest scan NED
http://cancercaughtme.blogspot.com/

User avatar
CaliforniaBagMan
Posts: 329
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: Transanal excision for T3 follow up

Postby CaliforniaBagMan » Fri Sep 10, 2010 7:17 am

I faced the same decision regarding surgery, even though none of my doctors, or those giving 2nd opinions, would agree to do an excision. But I didn't let that stop me in considering it as I knew I could find someone, somewhere to do it if I insisted. And, I considered *no* surgery at all-- only chemo and rad. That provoked my rad oncologist to communicate that "he didn't want to be any part of that method." And provoked my surgeon to comment that "you will die" if you don't have surgery. All of this came out in the data gathering stage that we have all been through, and it was for Stage III very near the anal verge (1-2cm.)

The tipping point for me was the likely prognosis *if* there was recurrance. I was told that a recurrence can often be a more serious event than the first or primary cancer, and I've since seen enough examples to believe this is true. My cancer, fortunately, was operable; a future cancer, or a recurrence to the original cancer may not be. I recently went through a scare regarding some tissue necrosis and occured in an area that was likely to be inoperable-- quite a scare until it was ruled out to not be cancer.

These are personal decisions that each patient must make on their own. I chose APR, and have not in any way regretted that decision. But, I respect that someone different, with a different body and different cancer made the choice for an excision. Based on everything I read or was told, I do hold the *opinion* that the excision is a more risky approach for recurrance than a larger surgery, but this in no way means I am judging the correctness of the decision. After all, my surgery came with a 100% risk of a colostomy, and other choices don't.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 7 guests