Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

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PainInTheAss
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby PainInTheAss » Sun Feb 26, 2017 5:54 am

L2saint wrote:This is good stuff. Unfortunately, I did not have a complete response to neo-adjuvant chemoradiation. This wasn't discovered until the pathology report came back from my surgery, where 8 of 12 lymph nodes were found to have cancer cells. Curious to know how they determine complete response? Is it absence of tumor cells in the rectum?


Yes, exactly. They check the tissue they removed and the tumor itself. Mine had trace cancer cells, and I was devestated that I didn't get a complete Response because that overrides prognosis stats from your stage. As a IIIc, it would have been like getting a golden ticket Later, my Onc explained that a very good response is still a very positive indicator of prognosis, and he's been very confident in my chances of cure. I decided to join in his optimism.
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

PainInTheAss
Posts: 655
Joined: Tue Jul 02, 2013 3:08 am

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby PainInTheAss » Sun Feb 26, 2017 7:06 am

MegTayMcc wrote:Wow! Thank you everyone, so much for your replies.

I spent much of today thinking and talking with family about my options. I believe I have decided to go ahead with surgery. I just don't believe I could live comfortably with the worry and doubt that has consumed me the past 4 months. The what ifs and what could have been if there was a reoccurrence, that didn't work out in my favor. Having two young children and hopefully a long life to live ahead of me has played a large roll in my decision. Maybe a few years down the road my choice would be different, with more studies and concrete numbers. But its right now, and I feel as though this is the right choice for me.

I just wanted to clarify, when I said that the doctor told me that the cancer would be nearly impossible to beat a second time, was before I started treatment, from a general surgeon (whom is not treating me), regarding my course of treatment. It was not directed towards the salvage surgery. I didn't even know that was an option at the time.

Karen, your post helped me :). You're right, it's just that, a stoma. There isn't anything ugly about it. It could possibly be my life saver and shouldn't deter me from the decision that lies ahead.

Happy New Year everyone! Here's to a happy, healthy 2017



I am actually relieved that you made this decision, and I'm alarmed at so many willing to play veritable Russian Roulette (so?) with something as deadly as cancer.

This is for the CRs reading these posts and now considering taking this approach, not for the ones who already made the decision. I hope you are NED forever.

When I first joined this board, I was mostly looking for other IIIcs who were still NED after 5 or more years. Each one I saw was a nugget of hope. I always looked at the signatures. In the last three and a half years, Jaynee is the ONLY member I can think of who has avoided surgery and is still NED more than 5 years later, although I'm sure there are others. And she didn't just do watch and wait, as she explained. Doing biopsies can miss trace cancer cells. That means you run the risk of leaving cancer in your body if you only trust in the clinical response. Most of the posters doing wait and see now saying they are NED are only a year out. The ones who did do watch and wait and no TME and ended up with a recurrence and died because of it are not here to warn you not to take the risk. I do know of one.

Is there an actual clinical trial showing the salvage surgery has the same results or just proponents personal statistics? If trials, how many trials and how many participants? This number of 12 people I heard is compared to tens of thousands who have done standard treatment. Do you think you would ever hear about many patients dying from this approach? Who would tell you? Especially if this is mostly outside of the US. And the biggest question of all...

Is just one dying from a recurrence enough risk for you? To avoid a colostomy you would get anyway if you did the salvage surgery?

I told my surgeon to do whatever he needed to do to SAVE MY LIFE, not my sphincter. My kids need their mom. I would never take a risk like that even as a IIIA with a complete response because of my kids. Yes, I have a bag. I hope it saved my life. I won't know until I am NED long enough to say I'm cured. I still get scared when I have shooting pains that the cancer is back. Where are all the posters who are 10 years NED who did waiti and see based on just a clinical response? I know the procedure is fairly new, but that would really worry me. Some are considering doing this simply based on someone saying, "Well, my doctor said...."

Here is a story of someone with a CR who did wait and see, had a recurrence, and later passed away after the cancer spread. He states very plainly that wait and see was a "mistake." Yes, he may have had a recurrence anyway. But there was no way to know once he took that gamble. His loss of life is not part of any official trial or statistic for this procedure. It's someone you would never have happened of who took the gamble and lost. Only hearing from living winners can make it seem like everybody wins.

http://www.teachingcancertocry.com

Standard treatment that has been proven to save lives is not radical surgery. It's life saving surgery. This is about your life.

Again, I am not speaking to the ones who have already made the decision. But I wish you would wait to encourage this approach when you yourselves had been NED 5 years or more. I have always respected Jaynees decision to do TME rather than surgery, and I think she is in a good position to be an advocate as a long term survivor. New patients are in denial, and it's very hard to face the reality that you could die from this. Hearing they could just skip a scary surgery might be music to their ears, as it was to Ezra who busy and eager to just get back to his normal life. It seemed like a good idea at the time.

Anyway, I just wanted to firmly state the opposing view. I might have been a CR if I had waited 8 or 10 weeks. I will happily wear my bag the rest of my, hopefully, long life with no regrets.

Oh, and Ezra talks a lot about irrigating on his blog which is the next best thing to not having a bag. I got irrigation supplies after reading his blog. I find it too time consuming to do regularly, but it's a nice option if I don't want to have to wear a full sized bag like under a fitted dress. I also had read about an irrigator who just wore a bandage on her stoma at the beach so she could still wear a bikini. A stoma is not the end of the world.
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

weisssoccermom
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby weisssoccermom » Sun Feb 26, 2017 12:04 pm

As I was mentioned in PITA's posts, I would like to echo much of what she said. (BTW, just to clarify, I had TEM ....not TME...huge difference which may be confusing some). First of all, there are others that I know of, like me, who had TEM and who are still alive....more than 5 years later. Like many who have 'beat' the disease, they have moved on and left the board. However, like me, they also didn't just do a simple 'watch and wait' strategy. While having a TEM (or the old fashioned simple transanal excision) isn't the same as the full blown LAR or APR, it IS something that can and does give the surgeon and the patient much more information about his/her prognosis. The biggest difference is that it doesn't (generally) allow the removal of any lymph nodes....and certainly not the number that are removed during and LAR or APR. To simply do some biopsies wouldn't have been enough for me. A rectal biopsy during a scope or a flex sig just can't give the surgeon or the patient enough information. Sure, cancer cells may not be lurking on the surface or even slightly lower down in the rectal wall BUT....that doesn't mean that even microscopic cancer cells aren't further down in the rectal wall. At least with a FULL THICKNESS excision, the pathologist examines the ENTIRE rectal wall....to the perirectal fat layer (and, in my case a few lymph nodes happened to be in the specimen). Just because a CT/MRI or rectal ultrasound after chemoradiation doesn't show anything which 'appears' to be cancerous is NOT a reason to think that something microscopic isn't lurking. Furthermore, as I have said many times on this board, tests such as CT/MRI or rectal ultrasound done up to 3 months after chemoradiation are NOT reliable. Those tests cannot tell the difference between scar tissue from the chemorad treatments and the remnants of the tumor. Any doctor will tell you this. So to say that someone has had a 'complete response' isn't really accurate. It may 'look' as though someone had a complete response BUT....unless and until you at least remove the area where the tumor was, you really can't be certain.
I may have missed the follow ups that the W & W strategy utilize so I would be very interested to know just exactly what those are. As I also mentioned earlier, when I contacted Dr. Habr-Gama 10 years ago, she was a HUGE advocate for the excision, mop up chemo and meticulous follow ups. To take the excision part out of the equation would just worry the heck out of me and I'd like to know why she is advocating for its removal. As she is a brilliant surgeon, I'm sure she has her reasons and has studied this new strategy carefully and thoroughly but....unless I was personally in HER hands or under the care of someone who has worked with her, I would just be really nervous.

How is someone deemed to be a 'candidate' for this protocol? What determines 'complete response' in the doctor's eyes? Terry, a dear friend and a former member, had what her doctors deemed a 'complete response' based on a few tests but when they did the excision they found microscopic cells. By all accounts, Terry had a super positive result to the chemoradiation and she always wondered what would have happened IF the surgeon hadn't talked her onc into no chemo. What if Terry had been given the standard 6 more months of chemo....would she have had a recurrence? That is something we will never know, but the point is, without that pathology report from the excision, there is NO way Terry would have even known that there were microscopic cells left inside of her. I know of another woman who asked for my help with her decision. She refused the full thickness excision (not sure why) and instead opted for a 'scoop' like biopsy so she wouldn't have to be put out. ( I liken it to a mini melon ball scoop by the way she described it). She felt as though this was enough. Well, all it did was barely 'scratch the surface' so to speak and it didn't get down deep enough or, in my case, through the entire rectal wall, to see if cancer cells were still lurking there. Her CT and MRI both appeared to look good and the biopsy didn't show anything so she just went on her merry way and continued with follow ups. Her doctor advised against this procedure but she wouldn't listen. As I'm sure you've guessed, there were likely cancer cells lurking in her and she passed away.

Yes, there are success stories like myself BUT...at least to my knowledge, they are all of patients who did all three aspects of the protocol AND all of whom had either a complete pathological response (based on the TEM) or only microscopic cells remaining. We all had: chemoradiation and experienced what appeared to be a complete or near complete response, a full thickness excision, an additional 5 -6 months of chemo AND at least 5 years of super meticulous follow ups. The people that I have kept in contact with also had a 'plan' based on the pathology results with a backup LAR or APR 'on the table' if the pathology report wasn't as good as they hoped for.

Did I play Russian Roulette with my treatment? Maybe but I also did a TON of research, contacted doctors like Dr. Habr-Gama, read extensively and made a decision that was based on everything that I read. Even my surgeon initially wasn't so sure but she said it was my life, she agreed that I was a perfect candidate and she REQUIRED me to follow up with all the tests, etc. every 3 months at first. She recognizes that there ARE good candidates for the protocol that I did but, she also recognizes that it isn't for everyone. BTW - she has also had some patients who, like me, have done very well with the protocol that I followed and even though she highly respects Dr. Habr-Gama, I don't think my surgeon would be comfortable at all with skipping the full thickness excision. Why would you want to?? I have passed the 10 year mark since I was diagnosed, and on April 20th of this year, it will be 10 years since my excision. I no longer go in for the meticulous checkups as my surgeon said they were no longer needed but I stayed on with her for a full SEVEN years. Even when she wanted to lengthen the time between the flex sigs, I said NO. I am very cognizant of the fact that I am a success story and I often wonder what would have happened had I not done all three of the components. What if I hadn't done more chemo? Were there any microscopic cells lurking that would have explored my body to find a new place to set up roots had I not killed them off with more chemo? Trust me when I say that Terry and I talked about that all the time in her case.

I'd really like to hear from someone undergoing this strategy as to whether or not more chemo is given and, if so, what type and how long. What are the follow ups made up of? How often do you have a CT, a flex sig, CEA and/or a rectal ultrasound? If one is truly just waiting and watching after only doing chemoradiation....I can tell you that while it sounds wonderful to avoid surgery, it isn't something that I would agree to.
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!
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CRguy
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby CRguy » Sun Feb 26, 2017 4:13 pm

Just to follow along here and comment on the overall "WATCH" part :
going back to the original poster
prs wrote:Also, of course, the "Watch" part of the strategy is very important so if there is a recurrence it's caught before it spreads. The Kaiser "Watch" procedures are:
1. Six months of folfox or xelox chemotherapy to kill any remaining cancer cells. I was encouraged to start chemo without delay.
2. A CEA, a rectal exam, a flex sig, and a special pelvic MRI every three months for the first two years, and then every six months for the following three years.
3. An annual colonoscopy.

all of which seem very good for getting a lead on a LOCAL recurrence

Reading through much of the rest of this topic though, I see little of WATCHing for other possible loco-regional changes, distant abdominal changes or thoracic mets.
I don't see the original monitoring protocol to include specific lymphovascular, hepatic or thoracic imaging sufficient to picking up metastasis in those systems OR any random / unusual location (spleen/brain/bone/skin) and would rely on patients to seek attention IF there was a problem = the met has already taken hold.

I was pCR so I KNEW with 100% certainty that my primary tumor was gone ( and had pelvic MRI and abdominal CTs as follow ups )
I had surgery and six monthly CT / xray / ultrasound monitoring when a lung met was picked up at just under 3 years.
Had I been on W-W as described above, my lung met would have been missed as I had NO clinical symptoms whatsoever.
" You will miss more for not LOOKING ... than not knowing." The original protocol does not appear to "Look" for lung mets, which is one of the common sites for rectosigmoid primaries to "met."

Originally I may have considered a W-W ..."knowing what I know then" .... BUTT now that in fact, I KNOW what I know now ... I would not do W-W unless I had enhanced monitoring over and above what I had originally, and what would have to exceed the initially proposed protocols. JMO.

A while back at ASCO Dr. Axel Grothey( Mayo, Rochester ) was also suggesting a consideration for W-W in "certain non hi-risk" patients instead of follow up surgeries, but was also an advocate of " excision, mop up chemo and meticulous follow ups ", as Jaynee had noted.

MSK also had an ongoing clinical trial assessing efficacy of the W-W Observation Appropriate for Some Patients With Rectal Cancer Following Neoadjuvant Therapy wherein they consider it could be appropriate for some patients.

Still a work in progress I believe and perhaps some more info can be gathered with certain tumor behaviors based on genomic testing ?????
Would be nice to know genetically, which tumors tend to met and why ... then a W-W could be based on sound science instead of retrospective assumptions.

CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

weisssoccermom
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby weisssoccermom » Sun Feb 26, 2017 4:35 pm

Agreed, CRGuy.....
Just an FYI....I should have also stated that in addition to the every three month CEA and Flex Sig (or rectal ultrasound...they alternated those) that I had with my surgeon, I also had a chest/abdominal/pelvic CT every three months to check for distant mets. The latter lasted (if memory serves me correctly) for at least TWO years and then I went to the same CTs every SIX months until I reached the 5 year mark.
Neither my surgeon, my onc or my GP ever suggested that I could just punt the CT's. On the contrary, I was quite clearly TOLD that I NEEDED that type of monitoring to ensure that no rogue cancer cells had strayed into other parts of my body. I would NEVER EVER have considered forgoing even one of those tests (and trust me, I didn't like them but they are necessary). I do remember getting sick and tired of always seeming to be at some doctor for one test or another but.....I wouldn't have been comfortable NOT having that type of surveillance.

Honestly, I don't know what the 'standard' follow up protocol is nowadays for someone who has had a 'standard' LAR/APR but I would venture that for a stage I-III, there would be at least a chest/abdominal/pelvic CT every six months or more for the first 2-3 years. Someone chime in with this info please. If this is the standard, then WHY wouldn't someone who is doing a less invasive surgery also do that followup OR more???
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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CRguy
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby CRguy » Sun Feb 26, 2017 5:34 pm

I was mostly referring to the original The Kaiser "Watch" procedures NOT mentioning thoracic imaging.

I know as standard for most folks with a rectal primary => chest imaging is a must do ! so if you're not watching the chest ... you are not "looking"
..... and thoracic imaging has always been part of my follow ups whether C-A-P CTs or survey xrays, which was actually WHAT picked up my lung met ... not a CT !

Cheers
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

ozziej
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby ozziej » Sun Feb 26, 2017 7:01 pm

Honestly, I don't know what the 'standard' follow up protocol is nowadays for someone who has had a 'standard' LAR/APR but I would venture that for a stage I-III, there would be at least a chest/abdominal/pelvic CT every six months or more for the first 2-3 years. Someone chime in with this info please. If this is the standard, then WHY wouldn't someone who is doing a less invasive surgery also do that followup OR more???[/quote]

Not sure if I'm getting 'standard' follow up for a Stage 1 post ULAR but I saw my surgeon every 3 months for the first year, with quarterly CEA, flex sig at 6 months, colonoscopy at 12 months (clear). This past year i have had a review every 4 months with CEA. I enquired about CAP CT but was told that risk of recurrence was thought to be lower than risk of re-irradiation.
Interestingly, my GP apparently thinks I'm being over-serviced on my current schedule and should be down to yearly reviews. I think i will stick with my surgeon's schedule thank you very much :mrgreen:
This discussion thread is very interesting to me because I had an EMR to remove a supposedly benign sessile polyp only to be revised to Stage 1 on pathology review. I was immediately referred to a colorectal surgeon who offered ULAR /APR or watch and wait. The watch and wait was to involve intensive follow up for 5 years but NO chemo. I chose the ULAR but I do wonder whether chemo and surveillance might have meant i avoided the LARS i have now. Having said that, I understand that there is a considerable difference between the EMR and the full thickness excision that Jaynee described. I do think the sad thing in all of this is that getting the most appropriate treatment for the best outcome is often a lottery. I'm in awe of Jaynee and her ability to research and advocate for herself. Unfortunately for many people (including myself ) the shock of receiving a cancer diagnosis significantly impairs these skills. As such, I'm pleased to see that researchers are working on developing evidence based decision making tools to aid the process in the future. :D
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

prs
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby prs » Mon Feb 27, 2017 1:52 pm

CRguy wrote:Just to follow along here and comment on the overall "WATCH" part :
going back to the original poster
prs wrote:Also, of course, the "Watch" part of the strategy is very important so if there is a recurrence it's caught before it spreads. The Kaiser "Watch" procedures are:
1. Six months of folfox or xelox chemotherapy to kill any remaining cancer cells. I was encouraged to start chemo without delay.
2. A CEA, a rectal exam, a flex sig, and a special pelvic MRI every three months for the first two years, and then every six months for the following three years.
3. An annual colonoscopy.

all of which seem very good for getting a lead on a LOCAL recurrence

Reading through much of the rest of this topic though, I see little of WATCHing for other possible loco-regional changes, distant abdominal changes or thoracic mets.
I don't see the original monitoring protocol to include specific lymphovascular, hepatic or thoracic imaging sufficient to picking up metastasis in those systems OR any random / unusual location (spleen/brain/bone/skin) and would rely on patients to seek attention IF there was a problem = the met has already taken hold.

CRguy


Sorry for the confusion, but my W&W procedure does include an annual CT scan of chest, abdomen and pelvis, in fact I have one scheduled for next week. I forgot to include this in my original post and have edited that post to correct the omission.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 2,000 mg Xeloda each day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 10/15
NED but still early days.

prs
Posts: 77
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby prs » Mon Feb 27, 2017 2:05 pm

ret wrote:Hello, new member here! My spouse is stage 4 rectal CA. Now, after a year of radiation and chemo, with a mid-year liver resection for mets, he appears to be tumor-free per CT-PET scan. His surgeon has suggested possibility of wait/watch ! However his oncologist and the tumor board cont to advise APR with associated ostomy.
I have some new knowledge of the Habr-Gama approach and it seems that these 'W-W'clinical guidelines limit this option to stages 1-2-3.
Question: does anyone have info or personal experience with "waiting and watching' (with careful surveillance ) for people with stageIV disease. thank you!

I believe the Habr-Gama guidelines are based on a physical examination of the tumor location and not on the results of a CT-PET scan. There is a post early in this thread with a link to a video presentation by Dr Habr-Gama with slides that detail what she means by a "complete clinical response".

My surgeon told me that she knows of some programs that had lower success rates with W&W because they were not strict enough in following the guidelines.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 2,000 mg Xeloda each day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 10/15
NED but still early days.

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

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby weisssoccermom » Mon Feb 27, 2017 3:46 pm

I can only tell you that IMO, an annual CT wouldn't be enough for me. A year is a LONG time to go between scans....too much could happen, particularly when you're dealing with the W & W strategy. If you are comfortable with that schedule....that's fine. I just know that I wouldn't be.
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

MegTayMcc
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby MegTayMcc » Mon Feb 27, 2017 4:31 pm

Hello again!
I'm back, after my apr surgery. My biopsy did confirm I had complete response. There was nothing to be found, and the cancer was gone. Even today, dealing with many little complications, a great deal of pain and battling a brutal perineal infection, I can very comfortably say I wouldn't change my decision. I won't have to worry, and can move on from this terrible chapter in my life, with checkups of course.

I'm 4.5 weeks post op, I was supposed to start 8 rounds of folfox last week but need to get this wound healing before chemo. I see my surgeon next week, and praying to get the go ahead. There has been mention of needing to reopen the wound, adding a drain or cleaning out the area if there is little improvement... has anyone experienced anything of the sort? This has me very worried.

After folfox treatment I will have 6 month follow ups, pelvic/chest/abdomen CT.
31/wife/mom/CAN
Rectal IIb - 08/16
ChemoRad - 09/16-11/16
APR - 01/17
Complete Pathological Response
Folfox 03/17-Present

prs
Posts: 77
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Location: Central California

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby prs » Mon Feb 27, 2017 4:59 pm

OK, I was thinking about that after I saw how often you had been getting scans. I have a CT scan next week and will discuss increasing the frequency with my oncologist at my next appointment in April.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 2,000 mg Xeloda each day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 10/15
NED but still early days.

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CRguy
Posts: 9080
Joined: Sun Feb 10, 2008 6:00 pm

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby CRguy » Mon Feb 27, 2017 6:47 pm

prs wrote:Sorry for the confusion, but my W&W procedure does include an annual CT scan of chest, abdomen and pelvis, in fact I have one scheduled for next week. I forgot to include this in my original post and have edited that post to correct the omission.

I thought it odd with no chest imaging after rectal tumor ... SO thanks for that clarification ...
liver and lungs at least need to be monitored after a rectal CRC, as well as loco-regional sites !
......AND I think this topic just serves as a good reminder for patients to advocate / investigate / educate
themselves and their health care team !!!!

Just FYI, I also had every 6 month imaging after initial surgeries ( using CT, xray, ultrasounds )

AFTER my lung met I got aggressive and pushed for ( and got ) every 3 monthly C-A-P CT scans for 6 scans, then every 6 months for 2 years, follow up, and then annually for 2 years until released by Onc to my GP,
where we are now "plotting" my surveillance intervals and protocols ..... (( => I have a GREAT family doctor ! ))
and I will basically get to decide how much / where /when I need to be scanned and probed :shock:

Best wishes
on the Journey with y'all
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

hawkowl
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby hawkowl » Wed Mar 01, 2017 3:49 am

Annual chest imaging is a long time to wait IMO...especially for distal rectal tumors...but is the current "standard of care " for asymptomatic stage 2 or 3. It is possible that insurance may try to deny payment for more frequent scans unless your oncologist documents a symptom that would "justify" more frequent imaging (cough, shortness of breath, chest wall discomfort).

I agree that we need to be our own advocates and push for frequent monitoring...especially for those who cannot use CEA as a reliable indicator of disease. I have such severe scanxiety that the thought of actually asking for more imaging is enough to make me want to take Ativan and 420, but denial won't lead to early detection of a recurrence
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7

ronjay
Posts: 4
Joined: Wed Dec 14, 2016 9:00 am
Location: Blackpool, UK

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby ronjay » Mon Mar 06, 2017 10:07 am

Hi Everyone,
Further to my initial post on Page 3. I had my 2nd 3 month follow up on the W&W programme here in the UK. MRI scan on 7th Feb and Sigmoidoscopy on 27th Feb. During the procedure, my surgeon informed me that the cancer had returned at the original tumour site! Being a shock to me is an under statement. I asked him what the course of treatment would be and he said to cut it out. I must admit my surgeon has never been one for many words, if one will do! However, the Colorectal nurse phoned me on Friday 3rd Mar to inform me that the MDT discussed my case, and that I need to have a CT scan within 5-10 days. She said I will then meet with surgeon in his clinic (when CT scan results are known) to discuss when I will have the surgery. Looks like the W&W was not the best thing for me, but I was not given an option of surgery after they decided I had a complete response to the 5 week chemo/radiotherapy. Nor did they offer me a course of Xelox. Any views/advice would be very much appreciated.


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