Low rectal cancer - deferral of surgery?

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chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: Low rectal cancer - deferral of surgery?

Postby chemo sabe » Sat May 03, 2014 6:47 pm

Ticktock - my 2 cents - first I think your sign on name is quite appropriate. I believe that CRC is a time bomb. You say you do want surgery but yet you wrote in here which tells me you have no confidence in your decision. There is a vein that goes from your butt straight to your lungs. That vein could be carrying cancer cells. Personally, I wanted all that cancerous tissue out. Whatever you decide, I wish you the very best.
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

ticktock10
Posts: 49
Joined: Fri Mar 07, 2014 3:49 am

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Sun May 04, 2014 2:08 am

Hi chemo sabe,

Thanks for the response. I'm not sure where I wrote that I wanted surgery, as the truth is that I always wanted to avoid it. From day one when I was told I was facing CRT, then APR, then chemo, I was looking to see if there was an alternative to the APR surgery. I discovered that the only way I would have any alternative to surgery was if I attained a 'complete response' from the CRT, so that was what I was hoping for. I never ruled out the surgical option, I just hoped that I would find myself in a position where I had an option to avoid it. And ultimately that is what happened, but when it happened it was still a big dilemma. You are right that I am not 100% confident in my decision to 'watch and wait'. However, I know that I would always struggle to mentally accept a colostomy bag if my post-surgery pathology came back all clear. In that situation, I know that I would believe (rightly or wrongly) that the surgery could have been avoided if I had only followed my gut instinct. It is a tough decision and it is a personal decision. I did a lot of research into the 'watch and wait' studies which have been done and I came to the conclusion that it was a viable option for me. However, that does not mean it is for everyone. The clincher for me was the fact that there is currently a trial underway at the Marsden in the UK and if I was there, I would be eligible for it (I am from UK originally, now living in Australia). So, I asked myself the hypothetical question - if I was there would I sign up for the trial? And the answer was 'yes'. So, my logic then was that I should follow the same protocol here in Melbourne, as I don't believe that geography should be the deciding factor. There is a little bit of negotiation involved with the hospital here as they do not want to commit to 3-monthly MRI's - but by and large they are on-board with my decision and they are going to support me.

I am looking on the positive side and the way I see it, the CRT has done its job and got rid of the tumour. Now, I just need the 'mop-up chemo' to do its job and kill any residual microscopic cancer cells which may or may not still be present. Whilst I am aware that this could not work, I believe that it will. If anything changes in the future, then I will deal with it at that time - but for now, I am focusing on the positive.
Oct 2013 - Dx Stage 2/3 low rectal cancer
Dec 2013- 6 weeks neo-adjuvant chemo-rad
Apr 2014 - PET and MRI show 'complete response'
May 2014 - Chose 'watch and wait' instead of APR surgery
Jun-Sep 2014 - 'adjuvant' chemo - 5FU
Sep 2014 - PET and MRI clear

ticktock10
Posts: 49
Joined: Fri Mar 07, 2014 3:49 am

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Fri May 09, 2014 5:41 am

I saw the oncologist yesterday and he has recommended the same 'adjuvant' chemo regime as he would have done if I was post-surgery. It will consist of 9 x fortnightly cycles of 5FU. Each cycle involves a 48-hour infusion of 5FU via Baxter pump (I still have port in my chest), followed by 12 days 'off'. I didn't check whether it includes leucovorin but I think it does. It's basically the exact same chemo treatment as I had during CRT, just a different dosage/duration of infusion.

I asked him about Oxaliplatin, as FOLFOX gets mentioned a lot on here and I thought he might recommend it - but he said that whilst there is evidence to support its use with colon cancer, there isn't any real evidence with rectal cancer. I was a bit surprised but that, but I didn't question it. I would have got on with whatever treatment he proposed, so to be honest I am quite relieved not to have to worry about the potential neuropathy issues.

The onc said that most people find adjuvant 5FU chemo a bit easier to tolerate than their neo-adjuvant CRT treatment, so I am hoping that will be the case with me.

He has also booked me in for a follow-up PET scan in 2 months. He said they are guessing a little bit with regards to the follow-up protocol, but I am just grateful that they are being so supportive.

So, the summary for me is 18 weeks of chemo to start soon (i.e. next week or so), PET in mid-July, flex sigmoidoscopy (with ultrasound/possible biopsy) in mid-August... and then take it from there.
Oct 2013 - Dx Stage 2/3 low rectal cancer
Dec 2013- 6 weeks neo-adjuvant chemo-rad
Apr 2014 - PET and MRI show 'complete response'
May 2014 - Chose 'watch and wait' instead of APR surgery
Jun-Sep 2014 - 'adjuvant' chemo - 5FU
Sep 2014 - PET and MRI clear

Devastated
Posts: 3
Joined: Fri May 09, 2014 9:54 pm

Re: Low rectal cancer - deferral of surgery?

Postby Devastated » Fri May 09, 2014 10:15 pm

Same boat over here!! I had stage four colon cancer with liver mets. Had a partial resection of my colon, chemo and then followed a liver resection. I've been in remission for over four years to have had a very recent colonoscopy come back with new high grade dysplasic polyps recent and was told I need a full colectomy and rectal removel or I will get a new colon cancer and die. I'm a fitness competitor and a calendar model. I'm devastated. They offered me another scope in three months but told me if I don't get Thai surgery I will die of a new colon cancer as a result of these polyps. I didn't understand as they cut them out I have them no longer. I'm so sad devastated and in total depair. I'm from Canada and the drs and their teams want to operate. I've been crying for weeks not eating or sleeping throughing up and sickend.
Someone please help me as I'm in a very very very serious deep depression. I have trained for six months to compete in my next fitness show and may never compete gain :( help me. 36 year old woman from Canada.

Jachut
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Facebook Username: hutchinson@aanet.com.au

Re: Low rectal cancer - deferral of surgery?

Postby Jachut » Fri May 09, 2014 11:14 pm

What I find ironic, although absolutely understandable, is the focus on the dreaded colostomy and thinking that radiation and chemo are somehow lesser evils than surgery. The longer I get from radiation, the more problems are appearing, the first being so much scarring that my pouch could not work anyway - there's no way that if that has happened, the original rectum which was in the firing line would be any use to me whatsoever. I'm fairly sure that I'd still be sitting here with a colostomy today. Chemo has left me with health problems that will last me for life. I have gut motility issues, damage to the lining of my gut, scarring from radiation etc. I had good doctors but I reacted really badly to the relatively "mild" 5FU and couldn't finish the course. Radiation also puts you at increased risk of other cancers further down the track.

What is stupid about the whole thing was that I found chemo and radiation before my surgery really damn easy - no nausea, no diarrhoea, no burns, it was a breeze.

This whole cancer business is a disaster, there's really little point focussing on the surgery alone. Its probably the bit that does the least damage and chances are high that you can be reconnected anyway.

That said, I absolutely get it. I was devastated at the thought of a bag. In reality its not that big a deal. I don't even hear from my stoma more than once every three or four days.

Cured
Posts: 519
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Low rectal cancer - deferral of surgery?

Postby Cured » Sat May 10, 2014 5:30 pm

Dear Ticktock10, I would think that Melbourne has experienced Colo-Rectal surgeons WHICH IS MOST IMPORTANT. There are people who have permanent colostomys who do not have to have them. I cannot say if you are one whose rectum can be reconnected, but the best Surgeon can give you the best results. My surgeon has seen too many patients after it is too late. He is able to rebuild colons when others cannot. I did not mind having a bag. True, my ostomy was only for half a year and not for life. But you will see hundreds of people in the Club with permanent ostomys who will testify that the inconvenience is very tolerable. Better than being dead.

All of this is hard to absorb. It is a good thing that you happened into the Colon Club.
I pray that God gives you strength, a good medical team, and a positive outcome.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9 Began Folfiri
CEA dropped to 4.5 after 1 chemo
After 8 rounds CEA 3
CEA 1.8 2.3 now
Finished 12 rounds of Folfiri
Avastin infusions every 3 weeks.
Had seizure-Anti-seizure meds working;no driving for 6 months

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PGLGreg
Posts: 1426
Joined: Sat Nov 04, 2006 12:38 am
Location: Waimanalo, HI

Re: Low rectal cancer - deferral of surgery?

Postby PGLGreg » Sat May 10, 2014 6:38 pm

Devastated wrote:Same boat over here!! I had stage four colon cancer with liver mets. Had a partial resection of my colon, chemo and then followed a liver resection. I've been in remission for over four years to have had a very recent colonoscopy come back with new high grade dysplasic polyps recent and was told I need a full colectomy and rectal removel or I will get a new colon cancer and die.

I don't think it's the same boat that you're in, but anyhow, your best bet for surviving this is almost surely to follow the advice of your doctors. Do they understand your concerns? Be sure to tell them, and perhaps they can give you some special help in recovering and getting your life back in order after treatment.
Greg
stage 2a rectal cancer 11/05 at age 63
LAR 12/05 with adjuvant radiation+5FU,leucovorin 1-2/06
NED for 12 years, cured

rebellove
Posts: 6
Joined: Fri Jan 31, 2014 10:55 am

Re: Low rectal cancer - deferral of surgery?

Postby rebellove » Wed May 28, 2014 9:10 am

Hi All,
We have a very positive update after the latest flex-sig endoscopy and biopsy. The pathology came back NED. Next the surgeon scheduled an excision (5/22) to remove as much of the remainder of the scar tissue of the original tumor as possible and he said it looked "as benign as benign" he's ever seen and the pathology report we received yesterday confirmed, once again, no evidence of cancer!
The oncologist has recommended no additional chemo--and we agree (http://www.cancer.net/research-and-advo ... lon-cancer).
Ben, I am not sure if you have begun your additional chemo, but please see how you do and consider the above article. My husband really responded well to all the neo-adjuvant treatment, but outside of any possible recurrence, we are the most nervous about the long-term side effects of the chemo.
We meet with surgeon next week to talk about follow up plan--timing of scans, etc. And while I realize there are no guarantees, we feel extremely lucky this was caught early enough to have good response.
Thank you for your support and we will be in touch down the road.
-RL
Rebellove=Wife of 52 y/o male
1/15/14-mass,1st colonoscopy
1/20-Ultrasnd dx Rectal Cancer
Stage IIA(T3, N0, M0)-3cm, app 6cm from AV
2/11-neoadjuvnt chemorad
28 days rad,3 rnds-FOLFOX
4/7-CT Scan-no visible mass
4/15, 4/29-5FU leucov
5/6-FlexSig/biopsy

weisssoccermom
Posts: 5939
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Low rectal cancer - deferral of surgery?

Postby weisssoccermom » Wed May 28, 2014 1:29 pm

RL - I know that your oncologist recommended no chemo and I understand your concern about long term side effects but please, consider talking to your onc about just doing either 5FU/leucovorin OR Xeloda. Personally, I would opt for the Xeloda (oral) over the infusion but that's a personal decision...they are, in essence, the same drug. I'm not sure what long term side effects your husband is worrying about but I suspect the side effects are the ones from oxi....neuropathy is the main one. There are relatively few l-t side effects with 5FU or Xeloda and IF a patient has any, they are very mild.

The article that you reference is for COLON cancer....not rectal cancer....although related very different cancers with very different prognoses (is that the plural of prognosis??). Anyway, I understand your desire for an excision....if you look at my signature, I also had an excision and am almost 8 years out from my dx (a little over 7 from my surgery) and doing fine. However, also remember that I had additional chemo as well. You need to also understand that although the pathology from the excision showed no cancer cells, no lymph nodes were taken as well. (please make sure that the excision was a FULL THICKNESS). The pelvic area is full of lymph nodes....a very 'popular' avenue for cancer cells to spread.

At the very least, PLEASE make sure that your husband is followed up with thorough, frequent and meticulous follow ups. They should include a CEA, CBC and CHEM panel every three months, a CT scan every 6 months, a flex sig every six months alternated with a rectal ultrasound every 6 months. Basically, he should be alternating the ultrasound with the flex sig and be checked every three months. The surgeon should be the one doing the flex sig/ultrasound as opposed to a random GI doc....that way if something does come up, the surgeon will be the first to see it and decide whether surgery is necessary. If you don't have a team that is going to follow your husband up on a thorough schedule, I would suggest finding different doctors.

Finally, I would ask your husband to consider talking to the onc about doing 4-5 more months of Xeloda as a precaution. IF cancer cells are lurking in the lymph nodes (all the negative test results in the world can't guarantee anything when it comes to cancer) and it is not caught in time, your husband will be looking at a very difficult situation. Just make sure that both of you are considering all the facts and are totally comfortable with your decision.
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

ticktock10
Posts: 49
Joined: Fri Mar 07, 2014 3:49 am

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Wed May 28, 2014 7:20 pm

Hi rebellove,

It's great to hear that your husband got such positive news from the endoscopy/biopsy. The surgeon's opinion on how it looks benign is also very positive, as I remember watching a video from Angelita Habr-Gama where she spoke about what a 'complete response' looks like and how this is a very strong prognosticator for a complete recovery.

Having said all that, I'm not sure about the recommendation for no adjuvant chemo. My understanding is that it is a grey area when it comes to Stage 2 and that the evidence is mixed, so different oncologists will make different recommendations.

What I would say is that it all comes back to the initial diagnosis and the initial treatment plan which was mapped out for you. In my case, there was one 'suspicious' lymph node on the initial imaging and when I asked the surgeon what stage I was, he said "well, you could be a stage 3 but it's more likely a stage 1-2". He covered all bases! He then said "it doesn't really matter because the treatment plan will be the same". ie. neo-adjuvant chemo-rad, surgery, adjuvant chemo.

As it turned out, I chose not to have surgery due to the complete response from the chemo-rad, but the logic for having the adjuvant chemo still applies. i.e. to mop up any cells which may still be in the bloodstream. I am currently sitting here with my 5FU bottle in my pocket and I am halfway through the second 48-hour infusion. I have not had much in the way of side-effects yet and I am happy to follow the program and complete my 9 rounds as that is what was planned for me originally.

I guess what I am trying to say is that, in my opinion, the choice to do or not do adjuvant chemo in your situation should be the same one you would have made if you had had full surgery and then received a clean pathology report. That is the way I look at it anyway.
Oct 2013 - Dx Stage 2/3 low rectal cancer
Dec 2013- 6 weeks neo-adjuvant chemo-rad
Apr 2014 - PET and MRI show 'complete response'
May 2014 - Chose 'watch and wait' instead of APR surgery
Jun-Sep 2014 - 'adjuvant' chemo - 5FU
Sep 2014 - PET and MRI clear

Peabody5422
Posts: 334
Joined: Fri Dec 09, 2011 10:21 am
Facebook Username: debbie.whitaker

Re: Low rectal cancer - deferral of surgery?

Postby Peabody5422 » Wed May 28, 2014 7:40 pm

Started out with low rectal T1. Had surgery 1st with biospy - just removed "spot". The dx: T1 N1c MX and had RC for 3 month. Scan clear. Labs clear for 2 yrs. Then CEA went up and PET scan was done. Now have lymp tumors in 4 different places. No recommended surgery now to dangerous - only hope chemo. Keep all options open. Make sure you get specific test done.

Good luck and God bless.
DX: RC 11/11 T1 N1c MX
Surgery: LAR 12/23/11
Rad & Xeloda: 1/12 - 4/12
Clean CT: 4/12
Reoccur: Lymp 4/14 4 new locations. 2 Aortic, 2 locations Rectum
Chemo to start: 6/14, OXI, Advastin, 5FU
10/14: One tumor left - on Avastin only
Surgeries: 4/15, 7/15 and 8/15 :last tumor w/Illeostomy then Ostomy
NED by 7/15 Surgery

Cured
Posts: 519
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Low rectal cancer - deferral of surgery?

Postby Cured » Fri Jun 13, 2014 11:05 pm

Peabody, may God be with you. Praying that the chemo does good.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9 Began Folfiri
CEA dropped to 4.5 after 1 chemo
After 8 rounds CEA 3
CEA 1.8 2.3 now
Finished 12 rounds of Folfiri
Avastin infusions every 3 weeks.
Had seizure-Anti-seizure meds working;no driving for 6 months

mswinkle
Posts: 2
Joined: Sat Jul 25, 2015 8:50 am

Re: Low rectal cancer - deferral of surgery?

Postby mswinkle » Sat Jul 25, 2015 9:23 am

weisssoccermom wrote:I would ask the doctor to postpone the endoscopy for another week or two (max) to allow your husband's insides more time to heal. I know of a few people whose doctors did biopsies that early and said it was extremely uncomfortable. My surgeon was adamant that NO DRE, no scopes no NOTHING for at least 7-8 weeks as most people have some internal damage from the radiation.

As you can see from my signature, I had a TE almost 7 years ago and am doing fine today. It is not considered standard of care and most (even my surgeon was in this group initially) will proceed with either the LAR or the APR.....even for the stage I patient. Like your husband, I also did chemo in between my chemorad and my surgery.....5.5 months of Xeloda. Explore all your options and make sure that whatever he decides he is totally comfortable with it.

FYI - while the biopsy might show no cancer cells on the surface, without something initially like an excision (which is full thickness), there is no way to be certain that there aren't cancer cells in the rectal wall. My point is that a biopsy only tells a small story about what is/isn't going on in the rectum.



Hi I am new to this site and would love some feedback. I tried to PM you, but site does not let me I am wondering how I cam share the information with you.

thank you

weisssoccermom
Posts: 5939
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Low rectal cancer - deferral of surgery?

Postby weisssoccermom » Sat Jul 25, 2015 1:50 pm

I will send you a PM with contact info in it. You have to have a certain number of approved posts before you can send a PM on the site. Don't worry....as you continue to post, you will get full privileges.
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

inthewoods
Posts: 2
Joined: Mon Jul 27, 2015 1:52 pm

Re: Low rectal cancer - deferral of surgery?

Postby inthewoods » Mon Jul 27, 2015 3:01 pm

I am new to this forum and feel in reading the messages, particularily the ones on "deferral of surgery" that I have found some empathetic voices. I was diagnosed in December 2014 with T3N1c, have completed 28 neoadjuvant trmts of oral Xeloda and radiation in mid-May with good response. I am from the PNW and my medical care has been at UWMC and Swedish in Seattle. Like many of you, I have experienced an up hill battle with my oncologists and surgeons when it comes to treating this disease with anything outside the USA protoccol of chemo/rad, surgery, and post chemo. I am seriously considering the "wait and see" approach at this point due to the positive response to my c/r trmts. Is there anyone who can recommend a surgeon in the PNW that is willing to perform an excision and depending on the results, (no evidence of cancer cells), work with me on the "wait and see" option instead of surgery.


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