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

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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 » Thu Dec 15, 2016 10:10 am

I was diagnosed with T3N2M0 rectal/sigmoid cancer in Feb 2016. Following MRI/CT scans, I commenced 5 weeks (25 days) of chemoradiotherapy (Xelox 1650 x twice daily and 45 Gy radiotherapy). Following the usual after treatment scans and numerous biopsies (1 under GA), my surgeon has informed me that I've had a complete response to treatment and that the tumour has shrunk into "oblivion", plus no cancer cells being found in all the biopsies. He has placed me on the W&W programme and I will have the next 3 monthly scan and sigmoidoscopy in March 2017. I mentioned to him my concern about any lymph nodes which may have been affected, to which he said they look all clear, and future MRI scans would pick up any change in them. I have not been offered a discussion on this programme with an oncologist, so I assume my surgeon has done this himself at the meetings they have. However, since just finding this Forum, and me living in the UK, I notice that many patients like myself, who have had a complete response, without surgery, have all been given a follow up course of Xelox, when placed on W&W. I wonder if this is the USA protocol as I have not been offered a course of Xelox. Any advice about this would be much appreciated.

prs
Posts: 201
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 » Thu Dec 15, 2016 12:15 pm

Ronjay, congratulations on your complete clinical response. W&W is not an approved method of treatment in the USA, so there is no standard protocol. However my colorectal surgeon strongly advised me to begin a course of follow up chemo as soon as she determined I'd had a cCR and was going on W&W. I believe a course of chemo is the standard treatment for those patients who have had surgery, so it makes sense that those who avoid surgery should also do it.

The standard rectal cancer chemo in the USA is Xelox or Folfox. Xelox is oxaliplatin infusions plus oral Xeloda, whereas Folfox is oxaliplatin infusions plus 5FU by pump. These two treatments are equally effective. I chose Xelox, and it was only after I had severe side effects from the oxaliplatin that my onc told me he thought 80% of the benefits came from the Xeloda.

I'm originally from Rochdale so know sunny Blackpool and its golden mile very well. :)
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 1,000 mg Xeloda twice per 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 07/15
MRI and rectal exam every six months starting 07/17
NED

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 » Fri Dec 16, 2016 5:29 am

Hi PRS. Many thanks for your reply and information. I will contact my colorectal nurse about whether I should be having follow up Xelox or not. I know it is the standard to have it here also if you have had surgery. Well done to you also on your complete response. Not so sunny in Blackpool at present, but we've had a nice summer for a change!
Best Wishes,
Ron

Garycee
Posts: 5
Joined: Mon Dec 12, 2016 12:30 pm

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

Postby Garycee » Sat Dec 24, 2016 2:37 am

Thanks Nic. New to board. How do I repost my question as new ?
Age 64
Colorectal diag 09/16. Mets to liver solitary tumor.
One tumor in colon/rectum 4 CM.
11/16 liver resection tumor which has shrunk to a shadow after 4 session if folfixi chemo.
Post op recovery now. 4 weeks out and starting to fee normal. Liver completely clean
Now back to chemo regimen for 6-8 sessions and then look at colon tumor. Radiation and surgery
I'm 64. One surgeon said that rectal tumor has "shrunk back" into Colon and because it's shrunk so much from chemo maybe just radiate

Nik Colon

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

Postby Nik Colon » Sat Dec 24, 2016 4:51 am

Garycee wrote:Thanks Nic. New to board. How do I repost my question as new ?

You can copy it then start a new topic/thread then post it and name it what you want (the title). If you have issues, I can do it for you

MegTayMcc
Posts: 14
Joined: Wed Dec 28, 2016 10:27 pm

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

Postby MegTayMcc » Sun Jan 01, 2017 10:24 am

Hi friends! I'm new to the page.. so please excuse me for not understanding all the lingo. :)

After much research, I'm still on the fence. I hoped to make my decision this week whether I will proceed with surgery or watch and wait. I've had complete response after 28 radiation treatments, combined with constant drip of 5fu. I started at stage 2, 4cm rectal tumor. From the start I was told I'd need a permanent colostomy, after docs said the chances of beating this cancer a 2nd time is slim to none. Much to my surprise, this option was presented last week after my surgeon and her team had reviewed my scans. The decision is consuming my life right now. I'm 31, married with two lovely boys who are my whole world.

I'm hoping someone has been in my shoes before, and could possibly shed some outlook on their choices, thoughts and decisions. I cannot seem to find enough supporting information to help with this choice.

:roll:
32/wife/mom/CAN
Rectal IIb - 08/16
ChemoRad - 09/16-11/16
APR - 01/17
Complete Pathological Response
Folfox 03/17 - 07/17
NED

weisssoccermom
Posts: 5988
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 » Sun Jan 01, 2017 5:08 pm

Hello and welcome to the board. I was in a similar position 10 years ago, although then surgeons didn't give the patient any other choice but what they termed as the 'radical' surgery....either the LAR or APR. I had done my research and had actually corresponded with Dr. Habr-Gama. At the time, she was advocating (and still does to my understanding) on performing a transanal excision on select patients who have a complete clinical response. Obviously, unless you actually surgically remove the affected tissue (where the tumor was) one will never know if there was a true pathological response. I had a very difficult time convincing any surgeon to approach my case from this position and had to do a lot of searching before I was able to find a surgeon who agreed with me and my choice. For the record, an excision is much like a lumpectomy for breast cancer patients. It is a relatively easy procedure where the surgeon goes in via the anus and removes a quarter size piece of the rectum (it can't be much bigger or the surgery would leave the patient with a too small rectum) that goes through the entire layer of the rectum down to the perirectal fat......hence the name a full thickness excision. Some times a little bit of the perirectal fat and hopefully a few nodes are also obtained during the surgery. This specimen gives the surgeon and patient a much better idea of what is/isn't remaining in the diseased tissue. Are there microscopic cancer cells remaining? Is there still some live tumor deeply embedded in the specimen? Remember that a CT/MRI is NOT valuable after radiation for the first couple of months to ascertain what exactly is going on. A CT/MRI cannot discern between tumor scar tissue from radiation and actual tumor tissue and neither can 'see' microscopic cells. I had a 'plan' for my pathological results. If there were microscopic cells, then I would proceed with 6 more months of chemo....if there were still cells deeper down that would stage my tumor at a T1, I would still proceed with only chemo but if my tumor was still deeper down than that, I would agree to the LAR. Keep in mind that when your surgeon takes a 'look' with a scope, he/she can ONLY see what is going on (or not happening) in the surface of the rectum. He/she cannot see what is/isn't going on deeper down in the rectal wall tissues and again, a CT/MRI cannot discern the difference between dead radiated tissue and live cancer cells (even a PET can't necessarily tell if there is only a minute amount of live tumor cells still lurking).

In my particular case, the timing between the end of radiation and the surgery was almost 5 months simply because the surgeon who I thought was onboard with my plan for an excision (he said he was but chickened out....likely due to pressure from his peers at the surgical practice) wouldn't do it. So, while I attempted to find a surgeon, my oncologist put my on Xeloda during that time. In the end, my pathology report from my surgery showed a complete pathological response and all the subsequent testing/followup....and there was a LOT that I did.....has shown that I was clear and still am to this day.....ten years later. I don't regret my decision but recognize that it isn't for everyone. I'm honestly not sure that I could have done the total wait and see without the excision....for me, that little day surgery was peace of mind that I truly knew what was going on in my body. I know that some people will say things like 'but how do you know that there wasn't anything going on in the nodes'. I was comfortable with my decision because Dr. Medich (in Pittsburgh who had done research/trials with Dr. Habr-Gama) and Dr. Habr-Gama had sent me studies and information showing that there was a direct correlation between radiation response and nodal involvement in over 2000 specimens that had been removed via more traditional surgery. While no one can 100% rely on statistics, for me, the fact that I was 100% cancer free in the excised specimen (from the excision) meant, according to the statistics presented to me, that I had less than a something like 8% chance of nodal involvement, which was enough for me to say NO THANK YOU to the more radical LAR and yes to the excision.

Now, I will tell you that I am a FIRM believer that anyone undergoing an excision or the newer 'wait and see' strategy should take an additional 6 months of chemo. There was another woman on this board who became a close friend of mine. She also had an excision to avoid the APR (permanent colostomy) but her surgeon didn't feel that she needed more chemo because there were only microscopic cells left in the excised specimen.(It appeared by all the testing that she had a complete response and the microscopic cells were only found during the excision) At the time, her oncologist disagreed but apparently bowed to pressure from her surgeon and she never received any additional chemo. For 18 months, Terry was fine and then she had a recurrence ....in her lungs. Over time, the cancer spread and Terry passed away not quite 5 years from her diagnosis. While no one will ever know for sure, Terry always wondered what might have happened IF she had taken 6 more months of chemo instead of doing nothing????

I made my decision to avoid LAR surgery based solely on my quality of life issues after such a drastic surgery. I wasn't willing to take any chances of having to deal with the very real problems that so many deal with after a surgery like the LAR. It seems with this new 'wait and see' strategy, that perhaps an alternative to the LAR/APR is becoming more acceptable and that, IMO, is a good thing. As far as your surgeon telling you that salvage surgery wouldn't be effective....well, I don't understand that at all. IF you have meticulous follow ups every three months, any recurrence is going to be caught at a very early stage and as my surgeon said (10 years ago), any salvage surgery would likely be just as effective as had I had the surgery in the first place.

I'm very happy and content with my decision but I recognize that it isn't for everyone. With cancer, there's never any guarantee. IMO, you have to go with your gut....with what you feel is best for YOU. Don't let others tell you what is right or wrong....because what is right for someone else isn't necessarily what is right for you. Good luck in whatever you decide....remember that it is your life and only you know what it right for YOU.
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

prs
Posts: 201
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 » Sun Jan 01, 2017 5:48 pm

I completely agree with everything weissoccermom just said. The decision became easy for me when my surgeon told me that rigorous quarterly check ups were part of the w&w protocol, and that if a recurrence did happen, they would catch it early and salvage surgery stood just as good a chance as if I'd had surgery in the first place.

I discovered this forum after my treatment was over so I didn't know anything about the transanal excision, and didn't get one or ask for one. I do remember my surgeon saying she wasn't going to go in and get any sample material from my tumor site and test for residual cancer cells. She said to get enough material to make the sample meaningful she risked doing enough damage to my rectum to possibly impact my QOL. I don't know if this thinking is new but she did say it was meeting all the strict Habr-Gama tests for complete clinical response that qualified one of her patients to go on w&w.

Like weissoccermom, my surgeon also strongly advised me to take six months mop up chemo beginning as soon as I went on w&w.

I am in awe of you guys that you are, and were able, to do all this research, and make decisions about your treatment before it's too late. I was too stunned after diagnosis to do anything like that. I just had good doctors and got lucky :-)
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 1,000 mg Xeloda twice per 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 07/15
MRI and rectal exam every six months starting 07/17
NED

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sun Jan 01, 2017 6:08 pm

I would hate to see someone avoid surgery solely due to what may be ill-perceived perceptions of life with an ostomy.

I will reiterate . . . my ostomy is simply no big deal. In fact, I actually am rather fond of my little stoma. And I am very fond of the fact that I survived an horrific intestinal perforation (literally an unzipping of my intestine) where I was give a 5% chance of recovery. I survived. And I have accomplished much in the 4 years since my ostomy surgery that has had meaning and purpose.

For those with the option of a colostomy, know that the day-to-day care of a colostomy is much easier/simplified than the day-to-day care of a temporary loop ileostomy.

A loop ilesotomy is positioned high along the length of the small intestine, meaning that the fecal output is highly liquid in nature with a high degree of caustic digestive enzymes. Pouching is more onerous, oft requiring placement of an adaptic ring to prevent undermining leaks of the wafer. The pouch requires more frequent emptying, on average 6-8 times a day.

A colostomy is generally placed at the distal end of the sigmoid colon, forming what is called a Hartman's pouch. The fecal output is more formed and semi-solid. Pouching is less complex as the fecal output is less liquid in nature with a lower concentration of digestive enzymes. Colostomates have the option of using a closed-ended pouching system as well as a drainable pouching system. A closed-ended pouching system enables the individual to simply take off the pouch when 1/2 to 1/3 full, seal the wafer edges, place the contained pouch in a plastic bag or doggy poop bag, and dispose of in the trash. It is as simple as pealing off the back of a pouching wafer and slapping the one-piece pouch on the skin. Easy-peezy. And you are good to go and get on with you day.

My stoma looks like a small rose bud on my skin. It is about 3/4 inch in diameter and flush with my skin. There is no "ick" factor in looking at the stoma. My stoma is not repulsive to look at.

I adapted fairly easily to my stoma. But I will admit that I have struggled with health challenges for the past 20 years, so the laparotomy and stoma and extensive hospital stay were but one additional hurdle in a life of hurdles.

I experienced a near-death experience in the immediate aftermath of my intestinal perforation. I was neither here on earth nor in Heaven . . . but somewhere in the in-between. I am not an overly religious person and would describe myself more as respective of many faiths with a strong personal spirituality. The near death experience was a life-defining experience for me. There is not a day that I do not reflect on my interaction with God/Higher Power and the directives given to me in returning to earth. I can tell you that I did not make the decision to return to earth. That decision was made for me by God/Higher Power. I would have just as well have preferred to stay in Heaven. The milieu was immensely comforting. I had no physical body, so I had no pain. I was enveloped by a energy source, which I came to identify as God/Higher Power. I felt immensely comforted and safe. While there were no words spoken between us, there was an immense change of energy. I was given three directives in returning to earth, assignments to guide me in my life after the near death experience. I offer this as a personal experience to provide comfort and reassurance to anyone who is facing a life-threatening health situation.

Life really is a personal journey. My frail health and innumerable challenges have solidified in me the importance of family and close friends and the relationships that we hold in life. For me, the genuine bond with animals/pets. The need to live a life being of caring and sensitivity and being genuine to oneself. A life lived with no regrets.

Whatever your decision, do not let your decision be detoured by fear of an ostomy and stoma. There is a quality life with a
stoma.

Feel free to visit the United Ostomy Association of America home page and support forum. The UOAA was a life-line of care and comfort to me in my early weeks and months of recovery. http://www.ostomy.org
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

MegTayMcc
Posts: 14
Joined: Wed Dec 28, 2016 10:27 pm

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

Postby MegTayMcc » Sun Jan 01, 2017 6:59 pm

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
32/wife/mom/CAN
Rectal IIb - 08/16
ChemoRad - 09/16-11/16
APR - 01/17
Complete Pathological Response
Folfox 03/17 - 07/17
NED

hawkowl
Posts: 132
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

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

Postby hawkowl » Sun Jan 01, 2017 11:50 pm

I am glad you have made a decision that works for you; I totally understand your reasoning. I am nearly 18 months out from my APR and have no regrets. in the end, we have to trust our gut and do what feels right. Good luck!
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
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, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

L2saint
Posts: 12
Joined: Tue May 31, 2016 7:12 am
Location: Ellicott City, MD

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

Postby L2saint » Fri Jan 13, 2017 3:17 pm

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?
Rectal cancer diagnosed April 2015
Chemo + radiation May-June 2015
Proctectomy + TME + ileostomy September 2015
Started CapeOx chemo October 2015
Finished treatment March 2016
Ileostomy reversed April 2016
Port removed May 2016
Fingers crossed...

mozart13
Posts: 158
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Wed Jan 25, 2017 9:03 pm

Today's scans can't detect cancer microcells, only way of detection is deep biopsy, or operation, when samples are sent for analysis.
3d endorectal ultrasound is also very accurate, somwhere around 90 plus percent.
My current radiation is in one hospital, oncologist and surgeon are in different hospital, once a week I see radiologist with his team, so I ask them about this protocol, 30 to 50% of CCR patients biopsy samples come back positive.
So there is still good percentage of people with CCR disease free, but the risk is there.
Even surgery is not guarantee, that why chemo is recomended after, to get rid of free floating cells, and whatever is left in site.
About 25% of patients have complete clinical response, after chemo/radiation.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

ret
Posts: 2
Joined: Sat Feb 25, 2017 1:09 pm

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

Postby ret » Sat Feb 25, 2017 2:00 pm

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!

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Sat Feb 25, 2017 8:33 pm

Hi ret, and welcome to CTalk .. the BEST place nobody ever wants to HAVE to join !

Your post raises a few great questions in my mind and my discussion is strictly JMO .. based on my experiences … YMMV !

The W-W as I see it, is designed to prevent patients with less advanced cancers from undergoing unnecessary surgeries if the chemo or chemoradiation appears to have “worked completely”
In my case it DID ( I was pCR not just cCR ) … BUTT I still had the surgery and still had a lung met resected later with more treatment

As a Stage IVa myself, my mindset is and was, “to do anything and everything to nuke this beast … forever !”
and not watch and wait for loco-regional recurrence or metastasis, and then play “whack-a-mole” catch up …. after the spread.

If hubby IS already Stage IV and this is JMO …… I would NOT W-W
I would agree with the Docs who say get the tumor OUT if he is now resectable for the primary tumor.

Many folks here have “lived” for the opportunity to become resectable with Stage IV disease.
Many Docs won’t do the primary surgery if there are a lotta mets elsewhere, so he could consider himself “lucky” that they would now even consider a resection.

IF I were a new Stage I / II, I would absolutely … knowing what I know NOW .. do W-W with aggressive complete monitoring
IF I were a new hi-risk Stage II / Stage III …. I would have a very serious discussion with as many experts as I could before deciding anything
IF I were a new Stage IV now .. I would nuke this beast back to the last millenium with everything I could throw at it and that means surgery / chemo / radiation

… and that my new friend, is exactly what I did do and I am still here, now NED to talk about it…. and would do it all again in a minute !

Best wishes whatever hubby decides
it is ultimately HIS decision

Cheers
CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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