Low rectal cancer - deferral of surgery?

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michelle c
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Joined: Wed Dec 02, 2009 3:58 am

Re: Low rectal cancer - deferral of surgery?

Postby michelle c » Sat Mar 08, 2014 1:02 am

I would so hate to be in your shoes....mine was colon cancer so no choices to make, I had to have surgery. It must be very hard for for and I don't envy you at all. It does sound to me like you have made your decision though or at least you are leaning towards not having surgery. All I can say is keep on doing your research, and maybe speak to people who have a bag, it's a daunting thought to have to have one, I know. My onc did say to me once - asking a surgeon if you need surgery is like asking a barber if you need a haircut. However, cancer is very sneaky. Research, research, research and get other opinions. All the best to you with your decision.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

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

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Sat Mar 08, 2014 8:43 am

It is really interesting to read these responses, so thanks once again. It is sobering to read real-life cases where the clinical complete response did not correspond to a pathologic complete response. On the other hand, it is also inspiring to read about people who have taken decisions into their own hands and been shown to be correct.

I am interested in the idea of having an excision as a biopsy. I had some discussions with the oncologist about doing an endoscopy and taking a biopsy and he suggested it would be a sensible next step. However, when I then spoke to the surgeon he basically told me I need to make my 'binary decision' before he will consider that. To be honest, I don't really understand what type of biopsy they were talking about and whether this corresponds with an excision?

My surgeon's viewpoint is that even if the biopsy comes back clear his opinion on having surgery will not change, so he was trying to get me to agree with him and just go with the surgery straightaway. I am now 8 weeks post CRT so I think he wants me to decide quickly and get booked in.

He is a well-qualified, highly-regarded colorectal specialist, so I have no doubts about his surgical ability. However, that doesn't necessarily mean that he knows what is best for me. It was confusing to get mixed messages on the same day from the onc and the surgeon and that is part of the reason I am struggling to figure out what to do.

If I tell him I want to defer surgery and if we then go down the route of taking biopsy as a next step, then I will have no problem in changing my mind and opting for surgery if there is any trace of disease.

I am really grateful to everyone for posting their experiences. I just spoke with a relative who has worked in pathology for many years so it was interesting to hear his perspective. He basically said its a dilemma and his conclusion was "there is no correct decision, therefore whatever decision you make is the correct decision". That is a good way to look at it and while it doesn't exactly guide me, it makes me feel a lot less stressed about the situation :)
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

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GreenMonkey
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Re: Low rectal cancer - deferral of surgery?

Postby GreenMonkey » Sat Mar 08, 2014 10:23 am

I was in a very similar position and considered not having the surgery. My gut said don't do it and my gut never lies but in the end I needed peace of mind. A CT/MRI I had from Sloan during diagnosis said 2 to 3 positive nodes. Three days later a CT/MRI from Johns Hopkins said no nodes were involved. I had high dose radiation but no chemo and the tests indicated no sign of cancer but I wouldn't know that for certain without the surgery. In the end 0/26 nodes, all tested clean, no sign of cancer so I wish I had NOT done the surgery. Good luck to you!!!
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

hart2hart
Posts: 789
Joined: Wed Nov 23, 2011 10:46 pm

Re: Low rectal cancer - deferral of surgery?

Postby hart2hart » Sat Mar 08, 2014 11:51 am

Hi Ben -

My hubby had VERY, VERY low Rectal Cancer 11/11.
He was first treated chemo/radiation at Yale New Haven in CT.
He had almost a complete response and Yale still wated to do a colostomy.....

We then proceeded to get 3 More opinions.....Mass general said 50/50.
Two local Drs. one at Stamford Hospital and one at Norwalk Hospital said 90/10 we
can reverse you. Well guess what: We went with Dr. James McClane, Norwalk, CT
(who is Cleveland Clinic Trained) and yes he DID in-fact save his spinchters. The surgeon
had to hand sew his connection vs. stapling. This doc who I call Ace McDreamy spent over 3 hours
doing the hand sewing......

We couldn't be happier with his Doctor. Had we gone with the first surgeon at Yale Pete would have a permanent
colostomy. And BTW.....if all 4 said permanent colostomy we would have done it and knew that we tried.....

Go get some more opinions ---PLEASE -- I know Jaynee referred a guy from India (yup, India) to Dr. McClane and he also save his sphincters where his local Doc in India said no way. I hope Jaynee with chime-in on this.

Good luck tick-tock. Not sure where you live but it would really be a good idea to get a few more suregons opinions. Call Dr.
McClane. It would be worth the trip. PM if you want his phone number.

Oh and BTW, Pete's new normal is pretty good. No incontinence and although it's different than it used to be with
Fiber caps, oatmeal, lomotil, etc. Pete is doing quite well! We are Grateful!


Cheers!



Julie H
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - To Current

texazgal
Posts: 144
Joined: Fri Sep 28, 2007 4:40 pm
Location: central Texas

Re: Low rectal cancer - deferral of surgery?

Postby texazgal » Sat Mar 08, 2014 12:31 pm

I'm not going to tell you not to have surgery. But I will say I was in almost your same situation (didn't have chemo or radiation) but did have just the tumor removed and felt wonderful. Dr. wanted to do more, much more as it turned out. I so wish I had not let her. She is a general surgeon and quite good at that, but maybe a colorectal surgeon might have spared me from a permanent colostomy. Have had my "friend" for almost 10 years and still hate it. Not everyone feels that way about having one, but I do. Good luck with your decision.
DX rectal cancer Aug 04
Surgery Sept 04, perm ostomy, "BarbieButt" Sept 23, 04.
Dad passed '93 CC
Gdad cc '68, uncle cc '69 too much CC in fam
DD 42 yo/w/2 polyps removed

Ktwirls
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Location: Quad Cities IA/IL
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Re: Low rectal cancer - deferral of surgery?

Postby Ktwirls » Sat Mar 08, 2014 1:25 pm

On the other hand, it is also inspiring to read about people who have taken decisions into their own hands and been shown to be correct.


I would say shown to be correct so far it can change in at any time. So it really comes to down how you would feel if it came back and didn't do surgery. That to me really helped me because no matter what, you can do everything including surgery and it can come back and not do surgery and it comes back. But can you handle the consequences of your decision for good and bad.
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/

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

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Sat Mar 08, 2014 5:29 pm

Just a quick update. I sent an email to the team running the "Watch and Wait" trial at Royal Marsden in UK asking them if they had any preliminary findings or any other information they could share with me and they were kind enough to write back.

Firstly, they said..

"Our trial only has small numbers and in general we are looking at more advanced cancers than in most series. We are still actively recruiting patients so we can’t do any analysis yet, but I would say that the majority of patients have not yet required surgery.

A couple of points to mention:

1. All our patients who are node positive on initial imaging would be offered adjuvant chemotherapy, in exactly the same way as they would be if the decision about chemotherapy was based on pathological staging.

2. There does need to be stringent follow-up with, particularly in the first two years, frequent MRI, clinical examination, endoscopy and CEA. We are also looking at PET which I think if helpful in confirming any change that occurs in the other modalities.

I hope this is helpful and good look with the decision making.
"

And then, I got a separate email with a bit more detail...

"we cannot disclose any further information regarding the trial as it is still recruiting patients at the moment.

However, I can share with you our experience so far published in the in the GI ASCO 2011 as a poster presentation. In 2011, 22 patients were recruited, 41% patient developed tumour regrowth and require surgery. More importantly, all the patients with tumour regrowth underwent surgical resection with clear margins. The median time in 2011 for tumour regrowth was 14 months post CRT.

I hope the information will help you decide your next treatment step that will suit you the best.
"

I am very grateful to them for taking the time to write back. The striking thing is that 9 out of 22 people (41%) who had a cCR and who opted for this approach ended up with local recurrence and had to have salvage surgery. That seems like quite a high number to me, although I just found the following research from Habr-Gama, which puts the local recurrence rate at 31% for those who had cCR http://www.redjournal.org/article/S0360-3016(13)03668-7/abstract

I know in the Dutch study by Maas in Holland, that only 1 out of 21 (5%) had to have salvage surgery after a local recurrence so the figures seem to vary a lot. I guess that is because we are dealing with relatively small numbers of people in each study and because protocols vary.

Reading between the lines, I am guessing that the Royal Marsden team are thinking about introducing PET scans as part of their initial cCR diagnosis in order to hopefully reduce the local recurrence rate. That is just speculation on my part but it seems logical. The fact I have already had a PET scan come back clear is another ingredient I need to factor into the mix.

In any case, they seem to be quite positive about the success rate of salvage surgery for local recurrences, although this obviously introduces extra risk and it does make me nervous.

Still, all information is good information if it helps me make an informed decision. I am working towards 'peace of mind' in whichever option I choose. At the moment, all the info is swirling around my head but I am aiming to get to a place where it all settles down and I can choose my pathway and accept the consequences, good or bad.
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

Ktwirls
Posts: 147
Joined: Thu Aug 12, 2010 9:12 am
Location: Quad Cities IA/IL
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Re: Low rectal cancer - deferral of surgery?

Postby Ktwirls » Sun Mar 09, 2014 3:42 pm

Isn't it great that they having been willing to email with us! Thanks for sharing the info you got, I had not talked to them since I was making my decision.

Doing the prep (yuck!) today for the scope/biopsy tomorrow, hoping for NED again. I am 3yrs, 2mth since last treatment, so at least I made it longer than their average of 14mths till recurrence.
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/

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

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Sun Mar 09, 2014 7:08 pm

Thanks Kim, yes I think its great that they take the time to reply individually, I am very grateful to them for that.

Even though the local recurrence rate makes me very nervous, I think I am still leaning towards the 'watch and wait' approach. However, I now have a little devil on my shoulder telling me I am a) arrogant (for ignoring the surgeon's advice) and b) greedy (for not taking the option with the highest chance of cure).

It is a difficult one and I am going round in circles. I don't want to appear ungrateful as I know there are many people on here who would love to be in my position with a clinical complete response, but I just feel like I have a life-changing decision to make and it will be my fault if it goes wrong...
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

weisssoccermom
Posts: 5951
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Low rectal cancer - deferral of surgery?

Postby weisssoccermom » Sun Mar 09, 2014 9:10 pm

ticktock.....why not talk to the doctor about doing a biopsy? IF there are cancer cells in a biopsy, then you can have more information to base your decision on.
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 » Sun Mar 09, 2014 10:00 pm

Hi Jaynee, yes I think i will bring this up again. I did discuss it last week as the oncologist had suggested this would be a logical next step. However, the surgeon kind of shut that down. He said "well, we could do that..." but his tone was not exactly encouraging. He then told me that he wants me to make a philosophical decision about which path I want to go down before we go any further and he was quite firm in recommending the surgery. I am not sure if I am explaining it well, he was fair and he has been consistent with me all the way through and I respect his opinion, I just think he sees things as quite black and white. He gave the impression that it shouldn't be that hard a decision to make. i.e. it is 'standard of care', it gives best chance of cure, the bag is not really that big of a deal, so just stop dithering and get on with it. Maybe I am exaggerating a bit... but that is how I ended up feeling and that is why I was so confused.

In any case, I am not clear about the value of getting a biopsy or excision done as the reading I have done seems to indicate that this has a low chance of detecting cancerous cells that are still in the system. I think I read 13% somewhere but not sure about that. So, yes, sure I am happy to go ahead and have it done because on the off chance it does detect something, then it will change my mind and allow me to have the surgery. However, I am doubtful that it would give me much extra peace of mind if it came back negative. Does that make sense? The more I think about it, the more I think the surgeon is right in pushing me to make a choice. He knows that I can change my mind and have the surgery later if it is shown to be necessary but if I am going to have it anyway I should just decide now.

Are you able to give me any more info on using an excision as a biopsy and if there is something specific they should be doing? I am a bit fuzzy on what it means...

Thanks.
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

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

Re: Low rectal cancer - deferral of surgery?

Postby nkoske » Mon Mar 10, 2014 12:33 am

Not sure what else I can add but...

I had 3 enlarged lymph nodes at DX. They were all greater than 1 cm and none of them showed up on the PET. Something that had my Rad Onc flabbergasted. Post ChemoRT, they still didn't show up on the PET. But post surgery path of the excised tissue showed two were cancer positive. IMO, PET is not a sensitive enough test for me to make a decision on. Personally I would not chance there being a single live cell and would have it removed. Even with a biopsy, I'm not sure you could guarantee getting it the right spot potentially missing viable cells.

Seeing how surgery is how most become cured, I wouldn't chance it.
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017

weisssoccermom
Posts: 5951
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Low rectal cancer - deferral of surgery?

Postby weisssoccermom » Mon Mar 10, 2014 2:32 am

I sent you a PM.
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

PainInTheAss
Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: Low rectal cancer - deferral of surgery?

Postby PainInTheAss » Mon Mar 10, 2014 3:42 am

Ditto to all said.

I had read about this wait-and-see approach that involves biopsies rather than scans for monitoring when there is a complete response.

My scans made it look like a complete response, but a biopsy showed trace cancer cells prior to surgery. My pathology showed trace cancer cells at both the tumor site and two lymph nodes.

You are just going to have to get more information than just what's on the scans one way or another.
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

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

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Wed Mar 12, 2014 6:33 am

I just wanted to say thanks once again to everyone who has posted with your advice and feedback, I really appreciate it. I have made a decision of sorts, I am basically not prepared to sign up for the APR at this stage. I am only 8 weeks post-CRT and I know it can be done at 12 weeks (or later if necessary), so I am not going to be pushed into making that decision now.

I have decided that I want to give myself every chance of avoiding the surgery, so I will talk to the surgeon about excision/biopsy as a number of have you suggested. If the examination shows no remnants of any tumour and the biopsy comes back clear, then I will proceed down the 'non-operative' path.

I expect I will still have chemo (as this was part of original plan, based on initial staging) but I will discuss this with the surgeon tomorrow, along with the protocol for follow-up scans etc.

I am at peace with this decision. I will deal with any setback if it arises but it is a case of only crossing that bridge if I come to it. For now, I am feeling fit and healthy, have 'no detectable disease' and i am choosing to focus on remaining that way.

By the way, I found a number of videos on YouTube which were uploaded from the 2014 St Gallen Gastrointestinal Cancer Conference which took place only last week (!) in Switzerland. They seem to have uploaded every speaker presentation, so there is a huge wealth of expert information available: http://web.oncoletter.ch/kongressberich ... -2014.html

You can either go to Youtube and search for user "oncoletter" and check their most recently uploaded videos - or go to website above and then click on each session to view all of the speaker presentations directly.

I was obviously most interested in Angelita Habr-Gama's presentation as part of Session 6 and this helped me come to my decision (although she has a strong accent and I didn't understand every word!) but there are a lot of fascinating talks.

Hopefully this information will help some of you as much as it helped me :)
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


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