Low rectal cancer - deferral of surgery?

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Ajane
Posts: 427
Joined: Tue Jul 23, 2013 3:03 am

Re: Low rectal cancer - deferral of surgery?

Postby Ajane » Wed Mar 12, 2014 3:05 pm

Ticktick, Thank you for posting the link to 2014 GI conference. It was quite interesting to actually see what a cCR actually looks like. The flexsig we did at 8 weeks looked nothing like that at all. The 3cm ulcer was gone. But at the site was a diffuse inflamed area . We never discussed why my surgeon wanted to do the 8 week flexsig. I think it was because he inherently knew I understood it was because I had some high risk factors, ie..3cm from AV, grade 3, and within 6mm of the sphincter. Having said all that, I AM a perfect example of what difference 4 weeks can make. Yes, anything shy of 12 weeks is not giving the radiation sufficient time to possibly reach cCR. I went back to edit my prior comment (again) to indicate that yes, we waited a full 12 weeks for the TEM surgery. And what a difference it made-not only cCR but cPR. And that is my hope and prayer for you.

Jaynee may have already addressed this in her PM to you. If not, you can find some really good articles online on TE versus TEM. But you might ask your surgeon is if TEM surgery is available in your area and if so, how experienced is your surgeon at TEM? I'm sure you've been forewarned that you might have "urgency" issues post-excision. I do. FYI, but with every week it seems to be getting better with kugel exercises, adjusting supplemental fiber intake, and identifying food triggers.

I digress... I know what you're going through. There were several scenarios to consider and I wavered back and forth for weeks on end. I listened to my surgeon and oncologists, researched and studied my options. The week leading up to the TEM, I finally made MY decision. If there was a single cancer cell in the biopsy, I was having the APR surgery. But if they found nothing, I was done! I finally accepted the risks with the choice I made. Whatever happens, I'll have no regrets. Life is too precious to waste it on regret.
Last edited by Ajane on Tue Apr 15, 2014 8:17 pm, edited 1 time in total.
7/13, T2, G3, Ultra-low. CEA 5.7 KRAS Wild, MSS
8-9/13 6 wks Xeloda/radiation
12/13 TEM pCR NED
5/15 CEA 4.6 PET 1.5 cm met, UL Lobectomy
6-10/15: Rounds 1-2 Xelox+Avastin; 3-8 Folfox+Avastin
10/15-4/16: 12 rounds Avastin
9/2016 CEA 4.2, 12 mm AP node
11/2016 CEA 4.3. PET/CT. 16mm AP nodal met removed
4 wks chemorad
2/2017 NED CEA 2.4
Carafate to tx esophageal ulcers caused by rad
Avastin maintenance postponed

2 Corinthians 12:9

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

Re: Low rectal cancer - deferral of surgery?

Postby rebellove » Sun Apr 13, 2014 9:11 am

Hi All,
This is my first post, but have been reading and getting as much info as I can since my husband's dx (see signature) in Jan. You guys are a wealth of info. Thank you so much!!
Ticktock10, how are you doing? We are hoping to have a "tough" decision rather than the obvious decision of surgery when my husband has the endoscopy/biopsy in May- it will be 6 weeks since end of radiation so hope it isn't too soon?? And, Ajane, I too will read about TE/TEM so that is good info and glad to hear your story! Hope you continue to heal up well!
In the meantime, I am looking at where we go for 2nd opinions in case there is the chance to look at sphincter preservation surgery, etc. or other advice to avoid the APR.
We have good care in our area. Radiologist oncologist is MDA trained, surgeon is colorectal/board certified, etc. Surgeon told us of the 3 similar patients he had with like low rectal cancer, 1 went for colostomy and 2 opted for no surgery. Those without the surgery are both 3 years out with no recurrence. And, our radiologist said that about 25-30% of the patients he sees have complete response to the chemorad. So, we went into this hoping we would beat it without having to have the APR/colostomy. It is not the surgeon's recommendation to go without the surgery. He is doing the endoscopy/biopsy after husband is more healed in a few weeks and we hope for NED at that time.
My husband handled the FOLFOX well, but only had 3 days a week every other week during the 5-6 weeks of chemorad so compared with some I have read about, it sounds like he had it easy! He is 2 weeks away from all treatment and seems to be almost "back to normal" with no lingering effects as far as we can tell now. I realize this might change, but we are very hopeful and grateful. The oncologist wants to do another round of 5-FU before the biopsy as he isn't comfortable going so far in between treatment before we get a pathology--even though the CT scan shows no mass. We are ALL for this. Even though we don't know long term effects, seems risk-benefit is pretty clear.
I want to be the best support possible so that if we do have to make the tough decision for APR (if the biopsy comes back with any positive disease) we are well-informed. It looks like we'll have about 2 weeks after biopsy to determine next steps for surgery, etc. The surgeon and oncologist both are aware he doesn't want the surgery if at all possible. And, he is healthy, didn't lose any weight during chemorad--exercises regularly.
Thanks, again for support and advice and if anyone knows of more similar posters/cases/research, please share.
-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 » Sun Apr 13, 2014 10:39 am

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.
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

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

Re: Low rectal cancer - deferral of surgery?

Postby rebellove » Sun Apr 13, 2014 11:04 am

Thanks for the thoughts on waiting a bit longer. We'll definitely talk with the doc.
Sorry to sound ignorant (because I probably am on this topic!), but I thought the full excision wasn't possible in the case of a very low tumor as it would not be able to be resectioned back? I was under the impression that the only way to "know" (as best as possible) if all the cancer is removed is to take all the tissue and surrounding nodes = APR. Just wanted to be sure I was clear.
We realize nothing is 100% when it comes to this! Just trying to weigh the odds, pros/cons, as well as possible.
Either way, I will certainly ask on the timing and will keep reading.
I am just very happy that he seems to be handling things well, is able to work, seems to be healing well and everything seems to be functioning normally! Hoping to keep that a trend.
Appreciate the thoughts.
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

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

Re: Low rectal cancer - deferral of surgery?

Postby hart2hart » Sun Apr 13, 2014 11:52 am

My husband Had Very, Very Low Rectal Cancer (11/11) - Stage 3

He had almost complete response to chemo/rad. Here is our findings.

Yale New Hospital and Mass General wanted to do a Colostomy. We sought-out 2 other opinions
at regional Connecticut Hospitals and two separate surgeons said probably 90/10 we can save your husband's
spinchters! Turns out we went with the slightly younger of the two surgeons and low and behold he did in-fact SAVE
Pete's sphincters. That was 4/12. The key is the skill of the surgeon.......Doc McClane spent 3.5 hours
handsewing this anastomies (sp?) vs stapling which he wasn't able to do and guess what it was successful. He is my hero forever.
How many surgeons would take the time to hand-sewn for 3.5 hours? Someone who cares alot about the PT and is not just a number in
the operating room.

So --this tells me that some of these large teaching hospitals can't think out of the box or let me put it
this way..."It is not our Protocol to do this!" And yes infact-, both Yale and Mass General said this to our faces.

Pete is one year post reversal and yes his new normal is not my normal --- But he is doing great and we will
forever be grateful for Doc McClanes skill as a surgeon and all-around nice nice guy! You rock Dr. McClane!

BTW, we have sent other PTS to him and he has also saved their sphincters!

Go get more opinions is our recommendation to anyone who feels not quite right about what their surgeon is saying.
We are sooooo glad we did this!


Cheers!



Julie And Pete
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

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

Re: Low rectal cancer - deferral of surgery?

Postby weisssoccermom » Sun Apr 13, 2014 12:34 pm

I am a little confused about your signature. If your husband's tumor is 6 cm from the anal verge, that shouldn't automatically indicate an APR. Are you 100% positive that the surgeon your are seeing is board certified in COLON and RECTAL surgery. I will post a link at the end of this article to verify. The reason I ask is simple. Too often, a general surgeon, who is board certified but in general surgery can and will do this surgery. This is not to say that a general surgeon shouldn't do the surgery but.....with rectal cancer, I would want to make sure, without a shadow of a doubt, that the surgeon is board certified not only in general surgery, but also in colon and rectal surgery.

http://www.abcrs.org/verify-a-physician-2/

An APR is NOT the only way to know that everything is clear. There is another surgery, the lower anterior resection (LAR) which removes most/all of the rectum (depends on where the tumor is located), the surrounding perirectal fats (where the nodes are) but leaves the sphincter muscles and rectal stump and brings down the colon (either creating a pouch or a straight connect) and connects the colon to the remaining rectal stump. You need to understand that with either the LAR or APR there is NO guarantee that all the cancer has been removed. There will still be nodes left in the pelvis...there have to be for your future health. The excision, whether done as microsurgery (TEM) or visually done (TE) removes, via full excision, the area where the tumor was located and a margin of surrounding tissue. This area cannot generally be larger than 3cm in diameter so as not to make the rectum too small. The full thickness excision specimen may/may not contain a node or two (mine did) depending on the individual patient's anatomy. The TEM/TE, however, do not remove the perirectal fat around the rectum where the nodes are located. After the excision, the small area removed is sutured up (which is why the excised area can't be overly large). I wish more surgeons would recommend for people like your husband who are struggling with this to proceed first with the excision.....use the information garnered from that procedure and use the information like one you would use from the biopsy. Studies have shown a very strong correlation between total and complete pathological response and nodal response. These studies were based on APR/LAR specimens that were removed and studied.

When I had my excision, I had to make a decision as to what I would do in a variety of scenarios. What would I do if the specimen contained microscopic cells, a T1 tumor, T2 and so on. You might ask the surgeon to schedule an excision in a few weeks instead of the biopsy.....you'll have way more information to base whatever decision you choose. Remember, a biopsy doesn't go down through all the layers of the rectum....if even microscopic cells are further down, a biopsy won't necessarily give you that information.
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

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

Re: Low rectal cancer - deferral of surgery?

Postby rebellove » Sun Apr 13, 2014 1:03 pm

Thanks Julie and Pete. That is great news about the detailed surgery and that there are experts out there in this specific area where there is documented success--aka you!

Jaynee, I say less than 6cm because that is what we were told so 6cm is the best case...and I believe it is less than that because the surgeon can feel it manually when he does the rectal exam. I have asked to get all the medical records and can read for myself. Prior to now, we knew we were doing chemorad so that was the focus and now on to the next step! We've taken a day-to-day approach for now, partially so we don't get overwhelmed, jumping too far ahead of ourselves and also because we wanted to see how effective chemorad was. But now it's time to focus on potential outcomes. We know the tumor was in the lowest area of the rectum that was most problematic for a resection. Our surgeon has not waivered from saying that the only surgical option is APR, but is open to "watch and wait" (Depending on biopsy). We also have access to an MRI that can look more microscopically at the tissue, but not sure if he will do that with the biopsy next month or if that can only be done with excision/surgery. I wonder if the mass/original tumor at about 3cm means that is too large for excision? Or it was too large before radiology so think he wants to do the scope and biopsy to determine what is the size of the area before scheduling excision? This is all what I am trying to get information on so we can take that to him. And, so we'll have a good understanding of options to go for second opinions.
Our surgeon is a board certified colorectal surgeon, highly recommended by our gastroenterologist who is the best in our state. I looked the surgeon up on that link you provided a little while ago. Thanks for that. Good stuff!

I agree that we need to create scenarios based on the outcome of information that is possible to get in the short-term. A kind of "if this, then that" plan. And, that is where we are in this period of time where we are a bit more clear-headed because we aren't dealing with daily appointments at radiology or side effects.

A friend of mine told me that there is no 100% way to know if you are free of cancer until you die from something else! Amen.
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

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

Re: Low rectal cancer - deferral of surgery?

Postby PGLGreg » Sun Apr 13, 2014 1:33 pm

rebellove wrote:Thanks for the thoughts on waiting a bit longer. We'll definitely talk with the doc.
Sorry to sound ignorant (because I probably am on this topic!), but I thought the full excision wasn't possible in the case of a very low tumor as it would not be able to be resectioned back? I was under the impression that the only way to "know" (as best as possible) if all the cancer is removed is to take all the tissue and surrounding nodes = APR.


How low is "low"? I see that his is estimated at 6cm above the anal verge. My rectal tumor was estimated before surgery to be 17cm above, and when the surgeon got inside there to look, it turned out to be only 5cm above. I had an LAR with no colostomy, done by a general surgeon, and I am now cured (knock on wood). So the estimated location of the tumor is not the same as the actual location, and a relatively low tumor doesn't necessarily imply a colostomy.

You never "know" whether the cancer will recur -- it's all a game of odds. Cutting more tissue out, an ostomy, radiation, more chemo, may or may not improve the odds. I think your surgeon and oncologist will have a better idea than any of us could have about just how to improve the odds in your specific case.
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

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

Re: Low rectal cancer - deferral of surgery?

Postby Peabody5422 » Tue Apr 15, 2014 12:19 pm

I had surgery (no colostomy) 1st because they thought it was simple T1 with no nod involved. Once bio it showed "rare' cancer cells around site. Went from no radiation to full blow and chemo. DX was then T1 1NC MX. Compared to all the other surgeries I have had this one was a piece of cake. So far now NED 18 months out of chemo and rad. Would do the same again.
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

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

Re: Low rectal cancer - deferral of surgery?

Postby hart2hart » Tue Apr 15, 2014 6:42 pm

Hi Rebelolove -

Why not more opinions? Where do you live? Just curious?

Honestly IMHO some surgeons really do not want to take the time that is needed
that Ultra Low Rectal Resections need. I can tell you that from our 4 opinions
I just felt that the two that said, Permanent Colostomy, just didn't want to take the time
needed to do this intense, LAR with a hand-sewn connection......(Or even try)

My hubby is doing great.....a surgeon that thinks out-of-the box really worked for us.
Why not investigate this type for your husband?



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

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

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Tue Apr 15, 2014 11:05 pm

hi rebellove,

thanks for posting in this thread. I hope your husband continues to respond well and that everything comes back clear. It sounds like he is in a very similar boat to me so if things go well it does make for a tough decision - but it is still a good choice to have.

I am a bit surprised that your docs want to do the endoscopy/biopsy so soon (ie. 6 weeks) after CRT. I had my scans done at 6 weeks post-CRT and then the endoscopy/biopsy was done last Friday, which was 12 weeks post-CRT. I have heard that the radiation continues to work for 6-8 weeks minimum after final treatment, so I would be tempted to ask them to delay in your case if possible.

I haven't heard back with any biopsy results yet, although they did tell me afterwards that there was no visible tumour anymore - so that is good news and it matches up with my scan results. I was still groggy from the anaesthetic when I was told that, so I didn't ask any questions or get any detail. I will hopefully get the biopsy results before Easter but I am trying to keep busy and not think about it. If the results do come back clear, then I am still not exactly sure what will happen next. They will all have a meeting and figure out if they are going to recommend 'mop up chemo' for me or not - and they also need to work out what the follow-up protocol will be. The surgeon did flag with me that 3-monthly MRI's may not be possible and 'this needs to be negotiated'. Basically, he told me that they would make their decisions regarding future treatment only after they knew the results of the endoscopy/biopsy.

I am feeling fine though. I am comfortable with the path I have chosen and I am not worrying too much about what I cannot control. I know that things will start to get clearer over the next few weeks and I will soon have a better idea of what I am dealing with and where my treatment is heading. As I said, fingers crossed for your husband. It is definitely worth thinking ahead and preparing yourselves for how you think you will react in each different scenario.

Ben
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

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

Re: Low rectal cancer - deferral of surgery?

Postby rebellove » Wed Apr 16, 2014 3:00 pm

Ben,
I wish you very positive results from your biopsy!! And hope you hear something very soon because I know how difficult the waiting is--even a few days seems like a long time.
I agree that this biopsy seems a bit early, but all along the surgeon said 6 weeks post radiation was the timeframe he was looking at. And, we'll see the radiologist for a 4-week follow up pretty soon and he can also help push out the endoscopy if he feels it is too soon as well.

Julie and Jaynee, we will definitely be getting second opinions!
And I really appreciate everyone else's comments and support.

My husband and I are going away on a much needed vacation--that was previously planned before the dx and had to be moved out. We are really looking forward to the trip and I am glad he says he is feeling nearly 100% right now so that is wonderful.

Please let us know how you do with your test results, Ben, and again, best wishes for a happy outcome.

Happy Easter/Passover/Spring to all!!

-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

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

Re: Low rectal cancer - deferral of surgery?

Postby ticktock10 » Sat May 03, 2014 3:06 am

Just a quick update: I saw my surgeon yesterday and he confirmed to me that the flex sig examination he did a couple of weeks ago showed no residual tumour and the rectal ultrasound was also clear. He also explained how he took a number of 'needle biopsies' from the area where the tumour was previously located and these all came back benign.

So, the upshot is that I am going to continue down the "watch and wait" path.

I have an appointment with the oncologist next week and they will talk to me about which chemo regimen to follow as this will effectively be my 'adjuvant' treatment. The way I am looking at it, I feel that I am now in a similar position to someone who had surgery and was told that their pathology was all clear. I realise that I may be wrong and that there is no way to know whether there are still residual cancer cells unless you have surgery - but I also know that there are no guarantees either way.

I am booked in for a follow-up flex sig and ultrasound (with possible biopsies) in 3 months time and follow-up MRI will probably happen in 6 months time.

So, all in all, it's positive news and I am now getting my head ready to take on the chemo challenge.
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

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

Re: Low rectal cancer - deferral of surgery?

Postby rebellove » Sat May 03, 2014 1:18 pm

Ben,
That is very positive news about the biopsy results! I hope you continue to feel good.
I think I mentioned previously that my husband had CT results come back after chemorad, and the oncologist said, "Where the pre-treatment PET scan showed a mass, the CT scan shows none." The clinical response was echoed by the radiologist who confirmed that there appears that there is no more cancer--but he was careful to state that too strongly as we know the best "read' will be from the surgeon when he does the FlexSig biopsy and scans next week.
Because my husband has already told his team that he would like to avoid surgery (if at all possible), the oncologist added 2 more rounds of 5FU and leucovorin-every other week intervals-before the endoscopy. He handled that OK. It was certainly better than the FOLFOX -- as the neuropathy from the Oxaliplatin was pretty disconcerting -- but besides the obvious worry about battling the cancer and fighting its return, we are concerned about long-term side effects from the chemo. We'll cross that bridge when we get there after the procedure next Tuesday, and after the results of the pathology. We were told those tests might be available in 2-3 days after so hope by next weekend we have some very good news, too!
Please keep us posted on the recommends from your oncologist. As we are also looking at potentially going "against protocol" I'd like to learn more about the adjuvant therapy, too.
We are also planning some second opinions (MD Anderson is close to us) as soon as we get biopsy results.
Best to you (and all!).
-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 » Sat May 03, 2014 2:01 pm

Be prepared, RL, for a 'fight' from places like MD Anderson. You're going against the 'standard of care'....a phrase that 7+ years ago I learned to despise. Now, don't get me wrong, I understand the implications of the standard of care and that, in reality, it is a good thing but I just couldn't go along with the LAR and instead, opted for the excision. It isn't an option for everyone but it certainly was the best choice for me. An excision is similar to a lumpectomy for breast cancer patients. No incision....the surgery is done directly through the anus and the only portion of the rectum removed is a very small section where the tumor once was. The section is excised through ALL the layers of the rectal wall because no matter what the ultrasound and/or CT says, those imaging studies cannot tell, particularly immediately following radiation, whether there is residual tumor or scar tissue left over. For me, it was the best decision and I am glad that I opted out of the 'standard of care' but I have to tell you, it was a long and difficult road...between doubting myself and being faced with surgeon after surgeon who tried to 'sell' me on the standard LAR. You may want to talk to your surgeon about the possibility of an excision still followed up with chemotherapy if you are intent on not having either an LAR/APR. The advantage is simple....it is a much more thorough 'biopsy' that WILL tell you whether or not there are any microscopic cancer cells lurking in the layers of the rectum. Remember that a biopsy that a surgeon/GI does with a flex sig can ONLY get cells near the surface and can't obtain samples deeper into the rectal wall. In my case, the excised portion was the size of a quarter....closed up and that was that. Whatever you do, you must get regular followups that should include blood work, CT scans and rectal ultrasounds at least every 6 months for the first three years....and also including regular colonoscopies as well. 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


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