Rectal cancer treatment guidance

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

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Comments

  • Trubrit
    Trubrit Member Posts: 5,754 Member
    Welcome to the forum

    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
    Mikendale Member Posts: 8
    edited February 2018 #3
    Trubrit said:

    Welcome to the forum

    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

    Thank you so much, Tru.  I

    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
    Mikenh Member Posts: 777
    My diagnosis is pretty close

    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

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    edited February 2018 #5
    Hello there

    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! 

  • Mikendale
    Mikendale Member Posts: 8
    Mikenh said:

    My diagnosis is pretty close

    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

    Thanks so much for your

    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!

  • lizard44
    lizard44 Member Posts: 409 Member
    My situation is different

    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
    lhduffer Member Posts: 90 Member
    Similar treatment

    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.

     

  • Mikenh
    Mikenh Member Posts: 777
    Mikendale said:

    Thanks so much for your

    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!

    I know how you feel as do a

    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.

  • Mikendale
    Mikendale Member Posts: 8
    Wow, thanks so much for the

    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
    James_B Member Posts: 14
    Hi all.

    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
    Mikenh Member Posts: 777
    James_B said:

    Hi all.

    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

    Sorry to hear about your

    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.

  • Trubrit
    Trubrit Member Posts: 5,754 Member
    James_B said:

    Hi all.

    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

    5 Years out and still have neuropathy

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

    Be sure to mention it to your Oncologist. 

    Tru

  • danker
    danker Member Posts: 1,276 Member
    take heart

    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
    Annabelle41415 Member Posts: 6,729 Member
    edited February 2018 #15
    Welcome

    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
    James_B Member Posts: 14
    Mikenh said:

    Sorry to hear about your

    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.

    Thanks Mikenh, it seem I got

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

  • James_B
    James_B Member Posts: 14
    Trubrit said:

    5 Years out and still have neuropathy

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

    Be sure to mention it to your Oncologist. 

    Tru

    Thanks Trubrit :) wish you a

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

  • James_B
    James_B Member Posts: 14
    Mikenh said:

    Sorry to hear about your

    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.

    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)?

  • BGNor
    BGNor Member Posts: 32 Member
    edited February 2018 #19
    James_B said:

    Hi all.

    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

    Oxaliplatin effects

    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
    James_B Member Posts: 14
    BGNor said:

    Oxaliplatin effects

    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

    Worry about numbness…

    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.

  • James_B
    James_B Member Posts: 14
    Side effect of Oxaliplatin (infusion) and Capecitabine (oral)

    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 ?