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Rectal cancer treatment guidance

Mikendale's picture
Mikendale
Posts: 8
Joined: Feb 2018

Hi,

I’m about 6 weeks out from diagnosis with stage 3 rectal cancer.  Mayo has classified my cancer as T3N1M0 (Per imaging done on 1/30).  My tumor is about 7.5cm from the anal verge.  I’ve gotten opinions from 4 institutions so far and broadly, treatment seems to break down as below. I’d welcome experience (especially 2+ years out) from fellow cancer survivors who chose/were treated with these respective approaches:

Standard: 5.5 weeks of radiochemo therapy, LAR/TME with reattachment & diverting ilestomy followed by 8 rounds/4 months of chemo/FOLFOX finally the ileostomy “takedown” (pretty much default answer of all institutions)

Chemo first:  2 different trials that start with chemo/FOLFOX, one that conditionally follows with radiochemo therapy (if tumor doesn’t shrink enough), same surgeries with optional additional chemo/FOLFOX after surgery - big advantage seems to be less long term damage from radiation (offered by Mayo)

Organ preserving: similar to chemo first, with the option to delay surgery in a watch & wait approach in an effort to spare the organs IF tumor demonstrates a clinical complete response (I.e. becomes undetectable) - supporting institution (Sloan) suggests a 30% chance this could happen and that for tumors that show a complete response, survival & recurrence stays equal those of patients who underwent surgery, but with a higher quality of life relative to bowel function

 

Thank you so much for any insights

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

I'm sorry you've found yourself here, but I hope you get some answers.  

My ride has been a bit different, because I had to have surgery fast, after diagnoisis due to blockage and fear of rupture.  So, I had bowel resection surgery, followed by the placement of a port and then onto the chemo. Nine FOLFOX +5FU treatments followed by six weeks - 30 treatments - of radiatin and 24/7 hook up to 5FU pump. 

It was all rather rough.  

After the Cancer spread to the liver, I had a liver ablation in April of 2014 and have been NED (no evidence of disease) ever since. 

Making decisions is hard. I pretty much did what the Oncologsit suggested, so I didn't have any decisions to make until it came  to the liver tumour, which could have been resected, but I ended up going with the surgeon's suggestion of an ablation. 

I wish you all the luck in the world as you go forward. 

Tru

Mikendale's picture
Mikendale
Posts: 8
Joined: Feb 2018

Thank you so much, Tru.  I appreciate the insights and the welcome.  I’m so sorry you had to go through all of that. I met a fellow survivor at a support group meeting who, like you, was very blocked - so much so, in fact, it sounded like he was on a liquid diet by the time they diagnosed him. I don’t understand how PCPs are missing these things for so long. I’ve been wracking my brain why mine didn’t even suggest a flex sig over the years I was raising concerns of persistent and worsening bowel symptoms. I gather I’m not alone in this disappointment.

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

My diagnosis is pretty close to yours, Stage 3B, and I had Xeloda (5FU) and Radiation for 28 days, Surgery to remove the rectum and am on XELOX for 8 weeks. I do not know if I'm going to make the 8 weeks on XELOX though. FOXFOX is 5FU + Oxaliplatin. 5FU is the infused form (you carry around a pump for a bit less than two days). XELOX is the pill form of 5FU. My tumor was about 100 cc and shrunk over 90% on XELOX and Radiation and the remainder was removed via surgery with a pathalogical complete response. My tumor was about 5+ CM from AV so you're in better shape in that aspect than was I.

So what I have is basically your first option. I was diagnosed last June so I don't have two years of experience but there should be people with 2 or more years out with this approach as it's been the standard approach for a while.

I've read about the chemo-first trials and they are fairly new approaches. One thing that I should mention is that the first option is usually only 5FU + Radiation while the chmo-first trials appear to be 5FU + Oxaliplatin. I find 5FU/Xeloda to be pretty easy but I'm doing the Oxaliplatin after surgery and it's really tough. Most people that I've heard from have a tough time with the Oxaliplatin. So that approach would be harder up front. For me, the easiest was the Xeloda + Radiation, then recovering from surgery was harder and the Xeloda + Oxaliplatin is the toughest.

There are threads on Watch and Waith approaches on ColonTalk (another CRC forum) though I think that most of them are more about Stage 2. You might be able to find existing information from people that have chosen that approach or you could ask for people who have tried it for Stage 3.

There's a lot of experience here in going through what you're going to go through so please feel to ask away. It's not an easy road but I'm sure that you're already aware of that. We can definitely help you along the way with experience and support.

 There are folks considering this or going through this at http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59420

Mikendale's picture
Mikendale
Posts: 8
Joined: Feb 2018

Thanks so much for your thoughtful response and that very helpful link, Mike. I wish I’d posted two weeks ago. I’m under so much pressure to get started now. I’m trying to convince my docs to change my regimen to at least start with chemo and make radiation conditional. I’ve so desperately wanted to talk with people who’ve been through this, but I’ve just been swimming through so much info that it’s tough to know what to prioritize and chase next.  Again, much appreciated!

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I know how you feel as do a lot of people here. It cost me two or three weeks to get second opinions and I would have preferred to start sooner. The cancer learning curve is really, really steep as you know now and it stays that way for a while. I've tried to plan ahead and anticipate the stuff coming up as best I can but reality is often different than what you expect - that is others can tell you what's going to happen but you only really feel it when you get there. There is a long thread on wait and watch at http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53498 which you may or may not find useful.

plsletitrain
Posts: 253
Joined: Jul 2017

Like Tru, mine was also via emergency operation as the tumor was already blocking and about to rupture.  So my case is that it was surgery first then chemo.  I had the operation on March of last year and still have an ileostomy bag now.  The chemo itself can be quite challenging, especially for me because its an out-of-the-pocket expense so I really can't say I've completed the prescribed cycles.  I'm still on the monitoring phase but I really just hope and pray that I remain cancer free.

I think you're on the right hands so all I can say is, trust your doctors and help your body and mind in facing this.  We can do this! 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

I  guess you could say I've had almost all the options:neoadjuvant chemo,chemo/radiation, a wait and see approach, surgery and adjuvant chemo.  I was diagnosed with stage 4 rectal cancer  with mets to the liver in May 2015 following a colonoscopy, CT scan and PET scan. MY rectal tumor was very close to the anal verge and we  knew surgery would involve a permanent colostomy. I had  8 Folfox plus Avastin treatments followed by  28 chemo-radiation treatments (chemo was a  5FU pump  24/5).  The  rectal tumor shrank- not a complete clinical response, but close; the colorectal surgeon was more concerned about the liver mets and decided to keep a watch on the rectal tumor. I  had more chemo (4 treatments  with Avastin, 5FU and Fusilev) but the liver tumor grew, so  the oncologist started me on Erbitux and Irinotecan in April, 2016.  The tumor shrank enough to be ablated in August 2016, and I continued on the Erbitux and Irinotecan.  Once the   liver  tumor was taken care of, the surgeon decided it was time to  remove what was left of the rectal tumor and I had APR surgery with a permanent colostomy  in October 2017.  I    am still on the Erbitux and Irinotecan as maintenance therapy (I've lost count of how many treatments at this point). I've been fortunate in  having few side  effects other than some skin, nail and hair problems from the Erbitux. I've enjoyed a good quality of life and am still able to   do most things I could do before the diagnosis. 

Whichever  treatment plan you  and your  doctors  decide to pursue, I hope you have the best possible outcome.

Grace/lizard44

lhduffer
Posts: 89
Joined: Oct 2015

I was diagnosed with rectal cancer July 2015, which after testing was determined to be T3N1M1 (stage 4).  My tumor was 5cm and approximately 5cm from the anal verge.  My treatment followed your option 2.

The course of treatment recommended for me was as follows:  I started with 4 rounds of capeox from Sept. - Dec. 2015.  This was followed up with 5 1/2 weeks of chemo/radiation (capecitabine as the chemo portion).  After imaging I did have a complete clinical response and really wanted to try the wait and see approach for the reason you site - better quality of life with the bowel function, but due to my original staging this was not recommended.  I had the LAR surgery with a temporary ileostomy April 2016.  The biopsy from the surgery did show 1 node still had cancer, so I did not have a complete pathological response.  After healing from surgery I followed up with an additional 2 rounds of capeox and then had my reversal September 2016.

I do believe that having the chemo first was easier on me as the side effects from the oxaliplatin were the tougher of the two for me personally.  I was told that many people have a tough time completing the course of treatment after surgery due to the healing and recovery our bodies are going through.

The information overload can be paralyzing.  I relied heavily on the recommendations of my doctors and feel that they were truly advising what was best for my situation.  Wishing you the best as you begin your treatment.

 

Mikendale's picture
Mikendale
Posts: 8
Joined: Feb 2018

Wow, thanks so much for the great responses.  I’m so sorry everyone has had all these tough experiences, but heartened to see the progress. I really want to leave it in my docs’ hands ASAP, just wish they were a bit more flexible in the treatment approach. Though, I’m sure they have some rigidity for very good reasons.

James_B
Posts: 14
Joined: Feb 2018

I am a Colorectal cancer victim, after 6 month of chemo treatment with Oxaliplatin (infusion) and Capecitabine (oral), after stoping the treatment for a month, my finger tip, toe is numb and been wonder, does this side effect a permenant? or it will goes away at some time

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

Sorry to hear about your problems. I'm almost done with my third round and my hands feel arthritic in the morning. I'm pretty sure that the Xeloda is doing that as the Oxaliplatin side-effects are fading.

I've heard that the finger issues are permanent for some and temporary for others. I've heard some say that the symptoms decreasae after 2-3 months out to 18 months. It seems to be all over the place. I may ask for a reduction in the Oxaliplating to 75% from 80% for #4.

James_B
Posts: 14
Joined: Feb 2018

Thanks Mikenh, it seem I got wait for the answer for myself, if I have the extra time left. 

James_B
Posts: 14
Joined: Feb 2018

That would be depand on the doctor… they have to calcalat from your weight and hight to get the dosage.

another question is the numbness of the finger and toe, would it get worsen (area numbness extent)?

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

So, for some, the numbness goes away, for others, like myself, its here to stay. 

Be sure to mention it to your Oncologist. 

Tru

James_B
Posts: 14
Joined: Feb 2018

Thanks Trubrit :) wish you a smoth recovery on your feture.  

BGNor's picture
BGNor
Posts: 29
Joined: Feb 2018

Hi

My experience was that the side effects will be reduced gradually with time. I still have a bit of numbness in my toes after 1.5 years, but that is something I can live with. I only have  sligth numbness and my oncologist told me that this could take a coulpe of years to go away, but some permanent numbness is possible. Not a big problem for me. Best guess is that you will experience a gradual improvement and most side effects will be gone. I'm pretty certain you will get a lot better over the next 6-12 months - my best guess.

Best wishes, BG

James_B
Posts: 14
Joined: Feb 2018

Currenly I've stop Chemo Trement for one month, but numbness on my finger Seems to be expanded ! not only numbness, finger join feel Hard ! 
Any one experence such sideeffect ?

And any way to overcome it? it seem to obstructing my balances.

danker
Posts: 1282
Joined: Apr 2012

Your situation is almost identical to mine, only I was 77 when diagnosed.  Currently 85 , I've  been NED (no evedence of disease) for last 8 years.             

Read my ffile and you will see how similar we are.  Your young age makes it a sinch for you.  It may be a bumpy ride, but it is doable.  Don't be afraid!!

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

Welcome to the group.  Mine was almost the same as you and Danker.  If you read my "about me" page it will describe in more detail about my journey.  I'm nine years out.  Did six weeks of radiation/chemo, surgery, chemo, takedown 7 months later.  If you have any questions you can PM anytime.  Wishing you the best.

Kim

James_B
Posts: 14
Joined: Feb 2018

Have the weird kinda of felling that my toe stacking on each other (Crossed) ?!?!Surprised

Do any one have thses kinda of expirence after the above treatment ? 

linda7408
Posts: 21
Joined: Mar 2018

Hi. I think I was in the same trial as you but at Strong Memorial Hospital. I had 30 radiation treatments and then was to receive 4 months of FOLFOX. My tumor was tight on the sphincter and rectum. I

had to stop the chemo halfway for surgery and then resumed the FOLFOX for 2 more months.  There had been a small nodule that we were watching. I was able to have a biopsy of the largest nodule

in March of this year and it proved to be cancer. There are 4 more scattered throughout both lungs. I will be starting Folfiri with Avastin in a few weeks for 6 months. 

 

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

I chose surgery with a perm colostomy.  I was given choice to do radiation and chemo, but with no guarantees that I wouldn't end up with surgery anyway.

I am 8 years out from surgery, with no followup radiation or chemo.  I feel very blessed.  The ostomy was a bit disconcering at the beginning but just a part of life now.

All cases are different.  I was 62 yrs old, no significant other and had grown children.

Whatever path you take, don't ever look back and think "what if".  Unfortunately we can't see into the future.  Just make the best informed decision for you and give it all ya got to beat it.

Best wishes,

Marie who loves kitties

darcher's picture
darcher
Posts: 303
Joined: Jun 2017

  I was officially diagnosed with stage 3 back in July last year and was 55 at the time.  I had a colonoscopy in June and was told I had a tumor.  I was given what they called the standard treatment.  28 sessions of radiation and Xeloda on a schedule of 5 days on and 2 off.  M-F with the weekends off.  Then a surgery followed by 6 2 week sessions of continuous xeloda with a week off in between each session.  If I remember right I think it was around 10 or 11 cm from the verge and about an inch and a half long and an inch wide.  Pretty much at the junction of the rectum and colon.   

 Im in the 2nd week of the 5th session of follow up chemo.  Dosage was increased to 3500 mg a day from the 3000 I was taking back when I first started.  The surgeon is who actually sets the cancer stage and so forth. At least thats what they do it here. There were many pivitol moments and scares along the way beyond knowing I had cancer.  There were several bright moments as well so overall it wasn't a completely horrible experience.

 The first part of this became routine rather quickly and as you have probably found out you can forget about modesty.  For the radiation you have to drop your pants and shorts in front of mostly women. You get used to it.  Doing the surgery was an experience.  I never had an operation of any kind so this was my first. The operation went quite well I guess. I was asleep through the event but I must have twitched or something because when I woke up in recovery I had a slight scab on my right elbow.  When I went in to the operating room they had me sit up and lean forward so they could put in an epideral.  I had my arms draped over a nurse and I must have let one slip off as I started to doze off.  I woke up in the recovery room about 4 hours later.  I was concerned because I told the surgeon beforehand that if they have to put in a permanent colostomy bag not to do it.  I know, vanity but some things I just can't take and that's one of them.  

 Once awake the first thing I did was yank out the Ox hose from my nose and took off the leg brases. Nurses tried to stop me but I knew I didn't need that stuff.  Within a couple minutes of being babied I was finally allowed to get up and walk around.  I ended up staying there for the minimum 3 days and then they cut me loose.  The nurses were all very nice even though I had an accident while laying there on the first day. The Galvenite doesn't completely clean you out and what I thought was just gas wasn't. That was a very embarassing moment.  But then again, this is a very nasty dirty disease so chances are there are going to be incidents like that. I didn't get any bag at all which was the first thing I checked for once I did wake up and was coherent.

   One thing I would recommend.  If you have a choice go with the epideral for the pain medication.  It keeps your entire midsection numb which is helpful when they give the shots for preventing blood clots.  You won't feel a thing. Then again, I wish I could have felt at least a little bit.  I had my wife bring me a BigMac since they had me on no food restrictions.  That stayed down for about 30 seconds and came right back up.  The only good thing about that was I didn't feel the usual expected pain throwing up.  I can't imagine how excruciating it would have been if it weren't for the epideral.     

 There was one twist.  When they did the surgery they said it had clear margins, was well defined, and no lymph node involvement. That's about as good news as you can get. Hearing about the post surgical findings I assumed I might be able to skip the follow up chemo.  The oncologist didn't agree saying it's quite possible the first rounds may have killed off the cells in the nodes and I'd get a recurrance in a couple years. He decided that I do the normal stage 3 mop up.  I didn't argue because I don't know diddly about cancer and a few months of chemo discomfort is tolerable compared to being dead in 2 years. That's super important. Like the rest of us you'll read up on things and begin to think you know how to get treated.  Forget it. We're all idiots unless we've got MD next to our name.  

 

I would strongly advise just doing what the doctors say.  The number one reason people don't survive is because they deviated from the treatments or tried some so-called miracle cure that will end up killing you.  There is a post on this site about apricot seeds.  Really?  Those contain cyanide and if you eat enough of them your toast.  Same goes for Dycotamous earth. The same stuff that's put in swimming pool filters.  They advocate raising your alkaline level to kill cancer. If you could raise it you'd be dead too. I swear, if I didn't know better I'd say these people posting that nonsense were intentionally trying to kill us. Following orders includes not changing the dosage amount of anything unless you really can't tolerate it. That little bit of difference can mean the living or not. 

Xeloda which is the chemo I was given which is the pill form of 5FU has many and different side affects and they vary from person to person quite a bit.  What I've got here you may or may not experience. I've gotten some hand foot syndrome, essentially temproary neuropathy.  That's where you feel a little numb in the fingers and your feet will hurt trying to walk when you first get up.  The foot issue lasts about 30 seconds or so and then goes away.  This didn't happen until I was in the mop up phase so the dosage is probably the trigger.  The bottom of your feet and toe nails will look hideous.  Oh well, youve got cancer so being fashionable with open toe shoes is out.   

Drug interactions with chemo.  Melatonin, I know some advocate it but I've had bad reactions to it. That and antibiotics. The melatonin would keep me up at night with cramps which defeats the purpose of taking it.  Antibiotics, which I was taking for a planned oral surgery caused me to turn from Dr, Jekell to Mr hyde. I went nuts is the best way to explain it from just two days overlap.  Other things may do different things or nothing at all. Youmay have a little bit of hair loss and very dry skin so keep lots of lotion on hand for your hands and feet.  I guess the hair will grow back.  Given what chemo does none of these are a surprise. It kills cells by not allowing them to divide.  It's what most chemo therapies do.  Yours is a fluid and so will invariably be different, or not when it comes to side affects. Rest assured there will be some.  It's not the end of the world and it is tolerable.

Now, the post cancer surprises.  You may end up with retrograde ejaculation. Ie, dry orgasms.  I did and it scared the hell out of me when I first saw it. They didn't say anything about it and I thought sure as hell it's leaking inside and I'd end up with an infection. It's caused by a valve that directs either urine or semen getting burned and jammed up from radiation. It ends up in the bladder.  It might be fixable or not.  I can't say and I was told to see a urologist which I'll do once the chemo is completely done. I've got plenty of kids but I still would like the appearance of normal. Another one is neuropathy.  This one seems to vary quite a bit as well. Most of us have it to some degree or another and in a lot of cases it goes away on its own.  That's the summary version of my "adventure".  I've got it completely documented in my blog which is about 30 pages long. Big surprise on that one. 

 

 

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

Cool Thanks Darcher,

Much like my experience 

tj65
Posts: 2
Joined: May 2021

Hi,

I had rectal cancer stg 3, i had radiation and chemo, had an lower anterior resection with ileostomy, then an ileostomy takedown, with more rounds of chemo. Ever since the takedown in Octover 2020, I am unable to nail down a routine to eliminate diarreah. I take immodium 3-5 daily,  as my insurance will not cover it and benefiber. I was told by a nutritionist to take fiber at night, 2 tablespoons and drink a lot of water. This caused 2 accidents through the night. Does anyone have a recommended routine that works for them?

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