Upcoming LAR & Syndrome Concerns

scohow66
scohow66 Member Posts: 11
edited February 2022 in Colorectal Cancer #1

Hi all - I am a 51 year old male dx with rectal cancer last October (2016).  I have a T2N0M0 clinically staged tumer 6 cm from the anal verge.  Completed chemo/rad end of January (28 treatments with 24x7 5FU chemo).  Tumor is gone with only scar tissue remaining.  I have an LAR scheduled 4/25 and have been assessing many options around this and have concerns about LARS.  I can opt for (1) a more straight forward excision procedure without nodes, (2) LAR with temp bag or (3) APR with perm bag.  There is not great data beyond 5 years on the excision option as there could be node involvement even though not present on scans so would have to live with risk.  The LAR presents lots of concerns regarding the syndrome after reconnection.  Surgeon feels confident he can work with whats left to reconnect.  Last option is to go with APR and just get the bag and be done withouth risk of LAR syndrome and poor bowel function for years to life.  I have read a ton of info on all of these options along with many chat rooms and find that most don't have a good post op experience with LAR, in fact I have seen zero positive comments about the surgery and its post op impacts.  Interested in thoughts from the community here as this is a very difficult decision with no great outcomes regardless of which path taken.  I don't want to be tied to the bathroom and wearing diapers the rest of my life and certainly not starting at 51.  Your feedback is appreciated!  Thanks.

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    #2
    A quick hi

    I just saw your post slipping down the forum page, and wanted to bump it up to the top.

    I'm off out the door, so have no advice or help to give you, just a big hi and sorry you've found yourself on the forum no one wants to join. 

    Someone should be along soon with feedback.

    TRU

  • PamRav
    PamRav Member Posts: 348 Member
    #3

      You got some tough decisions to make. Unfortunately I too,  Will be of little help. I'm stageIV,   I had surgery last Friday - robotic LAR but mine was on the sigmoid and I had an end to end re-anastomosis, so no bag.   It's good to do as much research as possible so you know what you're getting yourself into  

     Post operative try to get up and walk as soon as you can,  take the pain medication as needed and be  patient, healing takes time.   

    I wish you surgical success and a speedy recovery   

    Peace

     

     

     

  • mozart13
    mozart13 Member Posts: 118
    #4

    I am in simillar situation, T1T2N0M0, completlly gonne after 25 sessions of chem/rad, white scar left,  56 year old.

    Finished chemo/rad at the end of jan, last scope, mri was couple of weeks ago for re staging, no new growth, just scar, same as 2 weeks after therapy, had both mri and scope at that time as well, and ct .

    Surgeon suggested W&W approach, had option of LAR, recovery time is 1-2years for bowell control.

    This stage is consider curable with LAR, quite few people are still around 15 years after.

    They call it ccr, after surgery if no cancer in biopsy, pcr.

     25% people have complete clinical response, out of those 25% , small percentege experience re growth, that is salvagable by surgery, there is more statistics to it.

    Any way I opted for WW approach, going to see my oncologist this week, would like to start folfox to kill any free floating cells, surgeon thing its overkilling.

    Good luck to you which ever way you go!

  • scohow66
    scohow66 Member Posts: 11
    #5
    mozart13 said:

    I am in simillar situation, T1T2N0M0, completlly gonne after 25 sessions of chem/rad, white scar left,  56 year old.

    Finished chemo/rad at the end of jan, last scope, mri was couple of weeks ago for re staging, no new growth, just scar, same as 2 weeks after therapy, had both mri and scope at that time as well, and ct .

    Surgeon suggested W&W approach, had option of LAR, recovery time is 1-2years for bowell control.

    This stage is consider curable with LAR, quite few people are still around 15 years after.

    They call it ccr, after surgery if no cancer in biopsy, pcr.

     25% people have complete clinical response, out of those 25% , small percentege experience re growth, that is salvagable by surgery, there is more statistics to it.

    Any way I opted for WW approach, going to see my oncologist this week, would like to start folfox to kill any free floating cells, surgeon thing its overkilling.

    Good luck to you which ever way you go!

    Right, I am aware about the

    Right, I am aware about the wait and watch approach, but not a lot of solid stats >5 years.  Best option for "cure" is to go wtih LAR to both address remaining tumor cells, but also to confirm presence in lymph nodes.  Not sure I can go wtih that risk as it can result in distant recurrance, which may not be addressed by surgery.  Given my age I want best shot at longevity.  Tough call on this for sure...just not sure I can roll the dice on the cancer cells and leaving it alone.  Appreciate the feedback and wish you the best.  I am certainly aware of all the risks with every option...no great choices here, but fiirst thing is to address the cancer and anything remaining...then tackle the post op challenges, etc.

  • Cindy225
    Cindy225 Member Posts: 172 Member
    #6
    Stage 3B Rectal Cancer

    Hi scohow66 - Initially, I was staged with a T1 tumor 4 cm from the anal sphincter.  My options were either excision of the tumor with follow up chemo or LAR including removing the tumor, rectum and surrounding lymph nodes with no chemo unless the lymph nodes were involved. Because the pathology report from the original polyp indicted there was LVI present – lymphovascular invasion- my surgeon reco’d that the best choice for oncological success was the later procedure. Sphincter preservation was very important to me. My surgeon was able to accomplish it although I did have to get a temporary ileostomy. The pathology report after the LAR came back finding 7 out of 13 nodes had involvement. My surgeon and oncologist restaged me to 3B with follow up chemo and no radiation. I’m on my 8th chemo treatment of Oxaliplatin and 5-FU with 4 more to go.

    My reco would be to go for the LAR and temporary Ileostomy. As devastating as this journey has been I am so thankful that I went for the procedure that has the best opportunity to treat the disease and maintain quality of life.  I’ve been reading the posts about how challenging the ileostomy reversal is but planning to go for it.  I’ve already started doing Kegel exercises to retrain my muscles. Reversal is scheduled for July once a CT scan is completed and the port is removed.

    Good luck making your decision.  It’s a crazy situation to be in.  I’ve found the discussions on this forum to be so helpful in gaining perspective and knowledge.

  • danker
    danker Member Posts: 1,276 Member
    edited April 2017 #7
    lar

    At age 77, I had lar with iliostomy.  Six weeks later ileostomy reversed.  Developed a fistula  at ostomy site.  Six more weeks with bag over fistula.  But it healed itself from the inside out.  All this in 2010.  Soon to be 85, have been NED

    ever since.  Often have diarrhea, but it is managable.  LOL  Apparently I am definately one of the lucky ones!!

  • scohow66
    scohow66 Member Posts: 11
    #8
    danker said:

    lar

    At age 77, I had lar with iliostomy.  Six weeks later ileostomy reversed.  Developed a fistula  at ostomy site.  Six more weeks with bag over fistula.  But it healed itself from the inside out.  All this in 2010.  Soon to be 85, have been NED

    ever since.  Often have diarrhea, but it is managable.  LOL  Apparently I am definately one of the lucky ones!!

    LAR

    Thank you all for the feedback and input.  Very helpul, but a LOT to consider and once a path is choosen that's pretty much it I think.

  • lhduffer
    lhduffer Member Posts: 90 Member
    #9
    LAR and Temp Ileostomy

    I was diagnosed with rectal cancer at the age of 50, T3N1M1, which was very low in the rectum.  I had my LAR with a temporary ileostomy April 2016 after my initial 4 rounds of chemo, followed by chemo and radiation for 25 treatments.  It involved complete removal of my rectum along with a portion of my sigmoid colon (24 cm total).  Thanks to my amazing surgeon, and the good Lord, I had my ileostomy reversal September 2016.  I too had read many negative reports of life after a reversal and was very apprehensive of what to expect.  Seven months later I am very happy with my decision to have the reversal.  There are still some challenging times, but overall I have resumed my very active life.  We are all very different as are our outcomes and experiences, but there are good outcomes despite all of the negative you have read.  As Cindy mentioned, I believe the kegel exercises are a help.  Wishing you all the best and a speedy recovery as you move forward on your journey.

  • JoanMar
    JoanMar Member Posts: 19 Member
    #10

    Hi All, I was diagnosed with T3N1MO in July. Just finished up TNT, radiation short course/16 weeks of FOLFOX. I have my scans scheduled in 2 weeks. The plan is for surgery next, however if a complete response shows on the scans then the option of the WW approach is on the table. The surgeon is planning on a LAR, with temp ileostomy. I have not read or heard of any positive outcomes with this surgery. The thought of LAR syndrome is just something I do not think I can agree to. Everything I read and hear confirms that 80% come out of surgery with significant bowel dysfunction which is life changing. I am an active 73 yo woman, still working, travel for work, spend a lot of time and vacations with my daughter and grandchildren. Seems like I would have to give most of that up, can you sit on a lakeside dock all day in your bathing suit, run out to the grocery on a whim, doesn't sound like it. Can anyone out there tell me that they came through this on a positive note.

Discussion Boards