T2 rectal tumor

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JHH
JHH Member Posts: 23

I've gone through many tests in the last 30 days, and now am waiting for surgery, my surgeon uses the DaVinci Robotic machine to aid in surgery. 

I have a lot of anxiety, no lymph node involvement, one more test to make sure all is still a confirmed T2 and not a T1, but same outcome is surgery since the tumor is considered large.  Plan is to do a laprocopic surgery with "possible'' temporary ileostomy, which I'm guessing from all my research is quite likely. 

It's difficult to fathom going from seemingly functional (I have few if any symptoms issues) to going through all the adjustments, poop issues I"m reading about.  I can't lie, I pretty scared, anxious and down right bummed.  (depressed is more accurate)  I'm a very active person, a runner, raising two teens and I don't want to be less than that.  I"m not trying to sound vain, I"m really just scared.

Any input/experiences from others would be awesome!  I do not require chemo or radiation at this point.  

 

jh

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  • Tunadog
    Tunadog Member Posts: 235 Member
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    I'm 2b Rectal Cancer

    Cool  I'm 2b Rectal Cancer And have a Colostomy 

    I'd say you will know more after the surgery. If they are saying Stage 2 now there's a good chance for full recovery.

    Best of Luck to you, don't stress out over it.

  • JHH
    JHH Member Posts: 23
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    Tunadog

      It's hard not to stress, I really feel like my lack of diigence to preventive health pretty much led to this.  I know it's not worth beating myself up over, I'm a fighter and survivor.  Going to try and go into the surgery has healthy as possible.  I figure if I were running a marathon, I"d prepare and train, so going to try and be as healthy as possible going into it.  That's about as whiny as I"m going to get.  :-)

    Thanks for the kind words. I do realize I'm fortunate....

  • Tunadog
    Tunadog Member Posts: 235 Member
    edited July 2017 #4
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    It scared the Sh** out of me..

    It's a real emotional roller coaster. I was freaked out.

    I'm much calmer now.

  • JHH
    JHH Member Posts: 23
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    Ha

    Great pun!!!   I'm learning to be calm.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited July 2017 #6
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    In training

    I think you are on the right track thinking of going into surgery as being in training.  It is best to go in strong, and that helps with a fast recovery and increases your chances of living without a recurrence.

    It is a stressful and difficult time for you, I am sure.  Keeping a journal, for some reason, is helpful. Maybe putting your private thoughts into words helps you to categorize and deal with them.  Anyway, I started one presurgery and I still write in it every day.  Meditation can also be helpful.  If are not familiar with it, you might read the short book "You are Here," probably available at your library.  Also, I find exercise and solitude (like long walks alone) to be very helpful.  Also, it is not unusual to feel depressed. It would be unusual if you did not.  Give yourself room to feel what you feel. 

    Sorry you are in this circumstance and good luck with your upcoming challenges.

     

     

  • JHH
    JHH Member Posts: 23
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    Thanks Sandia

    I am a runner, so it is my saving grace right now.  I either wander around in my head while running, until I find my zen.  Or lose myself while running, 'being in my zen'  Calm hasn't always been where I'm at, it's funny.  Since I've begun this journey, I"m calmer than ever, yet very anxious about the upcoming surgery.

    I like the journal idea very much.  I kept one for a long time after my sons death last year.  And I try not to dwell in my own 'pity' too awfully long.  I give myself permission to go there, but I must leave!  :-) , and quickly. Depression and I have been friends before, and I"d rather not have that relationship while trying to maintain a positive attitude.

    Thanks for the uplifting message, I'm raising two teens (my sons two children) and I really want to continue to be for there, for them AND in stellar health, I believe in visualization!  I"m hopeful!

  • danker
    danker Member Posts: 1,276 Member
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    JHH

    Read my history.  It may be a bumpy ride, but it is doable.  And i'm sure you are much younger than I was when I went through it. Best of luck!!!

  • JHH
    JHH Member Posts: 23
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    danker

    Thank you!  I'm 61 years young, :-)  Still have my CT scan and CEA bloodwork to do, then if cleared by the Dr., it's on to surgery!  I'm very stressed but keeping a schedule helps.  Do what I normally do, since I don't feel sick 'at all'.  Mostly emotionally drained right now.

  • plsletitrain
    plsletitrain Member Posts: 252 Member
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    The surgery will be over before you know it

    I know its easier said than done, but try not to think about it. Like distract yourself, immerse into reading some stuff or marathon watch some series or movies.  The good news is that its at worst stage 2, so there's a very strong likelihood that after the surgery and if your surgeon did a good job, you'll be cancer free by then.  

    I had no choice but to undergo surgery.  Just imagine someone being pre-conditioned that the mass was cancerous while lying on the operating table--it was very stressful (not to mention I was already in severe pain and my surgeon was late for 3 hours Cool).  I can't explain my feeling then.  I had no one to talk too so I just laid there and pray.  Pray that my surgeon finally arrives and that I come out alive after the surgery.  After that, I had reason to rejoice.  At least, one hurdle down.  Next is the chemo.  Take one step at a time.  You're done with the surgery before you know it.

  • JHH
    JHH Member Posts: 23
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    I'm all for any and all

    I'm all for any and all suggestions plsletitrain.  Thank you.  

  • Sooker55
    Sooker55 Member Posts: 21 Member
    edited July 2017 #12
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    Same situation

     I was in a similar situation, totally freaked out by diagnosis of rectal cancer following routine colonoscopy with no symptoms.  Had trans-anal surgery to remove tumor, then second surgery to confirm clear margins.  That was four years ago when I was 61.  Had no Chemo or radiation. Biggest issue I had was conflicting recommendations, one major center telling me I had stage 3 due to swollen lymph in area, another major center telling me stage 1. Four years later all follow up tests clear.  It will get easier, I promise! 

     

  • JHH
    JHH Member Posts: 23
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    Sooker55 said:

    Same situation

     I was in a similar situation, totally freaked out by diagnosis of rectal cancer following routine colonoscopy with no symptoms.  Had trans-anal surgery to remove tumor, then second surgery to confirm clear margins.  That was four years ago when I was 61.  Had no Chemo or radiation. Biggest issue I had was conflicting recommendations, one major center telling me I had stage 3 due to swollen lymph in area, another major center telling me stage 1. Four years later all follow up tests clear.  It will get easier, I promise! 

     

    I'm told mine is too large

    I'm told mine is too large for trans-anal surgery, so I'll be having a lower resection with "possible" temporary ilesotmy (I'm thinking probable), then after 8 weeks the surgeon anticipates reconnecting. So far lymph nodes and surrounding area looks clear...so I"m still hopeful....always!!!  Thanks for sharing, it makes it easier.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Ostomy

    My ileostomy was temporary as mine was rectal cancer and it lasted about 9 months and then a reversal.  I'm understanding your being bummed out about it as it is a shock to your dignity and "self" just are compromised.  Dealing with it about 9 months was a struggle but you learn to deal with it and then you become more comfortable with it.  Let me tell you now after my reversal I'm going up to 15 times a day.  I'm limited to where I'm able to go and at what time of day.  I've got to watch how far a bathroom is from me and I'm never EVER able to go eat at a restaurant.  Everything goes right through me or possibly could, but usually does.  I'm bound to being around a bathroom and if anyone occupies it, I'm nervous.  You can get a second opinon if you want which isn't a bad idea.  Don't let this get you down as if you can be cancer free that's all that matters.  Wishing you well and if you ever have any other quetions, please ask.

    Hugs!  Kim

  • JHH
    JHH Member Posts: 23
    edited July 2017 #15
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    Ostomy

    My ileostomy was temporary as mine was rectal cancer and it lasted about 9 months and then a reversal.  I'm understanding your being bummed out about it as it is a shock to your dignity and "self" just are compromised.  Dealing with it about 9 months was a struggle but you learn to deal with it and then you become more comfortable with it.  Let me tell you now after my reversal I'm going up to 15 times a day.  I'm limited to where I'm able to go and at what time of day.  I've got to watch how far a bathroom is from me and I'm never EVER able to go eat at a restaurant.  Everything goes right through me or possibly could, but usually does.  I'm bound to being around a bathroom and if anyone occupies it, I'm nervous.  You can get a second opinon if you want which isn't a bad idea.  Don't let this get you down as if you can be cancer free that's all that matters.  Wishing you well and if you ever have any other quetions, please ask.

    Hugs!  Kim

    My biggest question at this

    My biggest question at this point, is why can't the surgery be an EMR procedure instead of a lower resection?  (I'm going to ask my Dr.)  I'm guessing it's because of the size and invasivness.  However, that's my assumption.  Dr. said a "possible" illeostomy, but I've read that the reasoning behing that (and been told) it allows for healing of the resection because if something were to later/post surgery, go wrong, you are now going to have a permanent one, not temporary.  All so much to take in.  I'm a very active and outdoorsy person.  So much of this is very difficult for me to wrap my head around.

    I'm aware of getting a 2nd opinion, I've thought of it, but not sure anything (the remedy) would be different.  I may still do so.  Thanks for the input Kim.  

    jacQue

  • JHH
    JHH Member Posts: 23
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    Has anyone here had a 'j

    Has anyone here had a 'j pouch' procedure done?  Also, has anyone opted to "keep" the illeostomy instead of having the reversal?  

  • Cindy225
    Cindy225 Member Posts: 172 Member
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    In Training

    I am a runner too and trained for this journey like a marathon.  Started with T1 rectal tumor that turned into Stage 3B once LAR completed and pathology came back with 7/13 lymph nodes involved. Darn tumor was sitting on a blood vessel so off it travelled through the rectum lymph system. Fortunate to have done the LAR.  That said, have a temporary ileostomy that I am getting reversed July 28. It's been a bit of an arts and craft project but you figure it out and establish a routine. But now it's time to say bye bye Baby Stoma!  I realize it will be a long process but my surgeon made the decision along with my Onc not to do radiation so I am hoping that will improve my bowel functionality.  Doing 100 kegels a day (should be doing more) to strengthen sphincter mussles. Had 12 rounds of Folfox and finished June 9. Scans were NED.

    After surgery and while on chemo, I ran the whole time and when I couldn't due to wearing the pump I walked.  I ran a 5K on June 11 and finished.  Running with the ileostomy is OK.  Got a stealth belt but compression pants work fine.  Need to stay hydrated.  Signed up for another 5K in October so hoping the reversal will be under control to complete.

    Prior to my dx I ran a marathon, half-marathons, 10 milers, 10Ks.  So starting off with a 5K was humbling.  Couch to 5K great app to get your butt in gear!

    This journey requires going the distance. Meditation, positive thinking, exercise, friends and family, CSN make all the difference.  Key is to keep fighing.

    Cindy 

  • JHH
    JHH Member Posts: 23
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    Cindy225 said:

    In Training

    I am a runner too and trained for this journey like a marathon.  Started with T1 rectal tumor that turned into Stage 3B once LAR completed and pathology came back with 7/13 lymph nodes involved. Darn tumor was sitting on a blood vessel so off it travelled through the rectum lymph system. Fortunate to have done the LAR.  That said, have a temporary ileostomy that I am getting reversed July 28. It's been a bit of an arts and craft project but you figure it out and establish a routine. But now it's time to say bye bye Baby Stoma!  I realize it will be a long process but my surgeon made the decision along with my Onc not to do radiation so I am hoping that will improve my bowel functionality.  Doing 100 kegels a day (should be doing more) to strengthen sphincter mussles. Had 12 rounds of Folfox and finished June 9. Scans were NED.

    After surgery and while on chemo, I ran the whole time and when I couldn't due to wearing the pump I walked.  I ran a 5K on June 11 and finished.  Running with the ileostomy is OK.  Got a stealth belt but compression pants work fine.  Need to stay hydrated.  Signed up for another 5K in October so hoping the reversal will be under control to complete.

    Prior to my dx I ran a marathon, half-marathons, 10 milers, 10Ks.  So starting off with a 5K was humbling.  Couch to 5K great app to get your butt in gear!

    This journey requires going the distance. Meditation, positive thinking, exercise, friends and family, CSN make all the difference.  Key is to keep fighing.

    Cindy 

    Cindy225

    Wow!  I've been running daily and eating clean, which I usually do.  I've been maintaining my normal routine.  I also did some reading on the kegels, and wasn't sure it would help prior to surgery, but was planning on that 'after' the surgery.  Sounds like you and I have the same mind set there.

    I want to be as active after surgery (after I'm healed) as I am now.  And I've already been scoping out stealth belts!  :-) Thanks for your story!  And happy for your NED dx.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited July 2017 #19
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    JHH said:

    Has anyone here had a 'j

    Has anyone here had a 'j pouch' procedure done?  Also, has anyone opted to "keep" the illeostomy instead of having the reversal?  

    JPouch

    That is exactly what they did for me at time of initial surgery, but they gave me an ileostomy at the same time and then the reversal.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Cindy225 said:

    In Training

    I am a runner too and trained for this journey like a marathon.  Started with T1 rectal tumor that turned into Stage 3B once LAR completed and pathology came back with 7/13 lymph nodes involved. Darn tumor was sitting on a blood vessel so off it travelled through the rectum lymph system. Fortunate to have done the LAR.  That said, have a temporary ileostomy that I am getting reversed July 28. It's been a bit of an arts and craft project but you figure it out and establish a routine. But now it's time to say bye bye Baby Stoma!  I realize it will be a long process but my surgeon made the decision along with my Onc not to do radiation so I am hoping that will improve my bowel functionality.  Doing 100 kegels a day (should be doing more) to strengthen sphincter mussles. Had 12 rounds of Folfox and finished June 9. Scans were NED.

    After surgery and while on chemo, I ran the whole time and when I couldn't due to wearing the pump I walked.  I ran a 5K on June 11 and finished.  Running with the ileostomy is OK.  Got a stealth belt but compression pants work fine.  Need to stay hydrated.  Signed up for another 5K in October so hoping the reversal will be under control to complete.

    Prior to my dx I ran a marathon, half-marathons, 10 milers, 10Ks.  So starting off with a 5K was humbling.  Couch to 5K great app to get your butt in gear!

    This journey requires going the distance. Meditation, positive thinking, exercise, friends and family, CSN make all the difference.  Key is to keep fighing.

    Cindy 

    Good for you

    Awesome - that is great that you are so active while going through all this.  Inspiration to this board.

    Kim

  • betula
    betula Member Posts: 86
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    Marathon not a sprint

    My husband was diagnosed with stage 3 rectal cancer at 47.  We have a 14 and 12 yr old.  He has since had chemo/radiation, surgery that ended in permanent colostomy because his tumor was so low in his rectum.  A j pouch was not an option for him.  He is now doing his "mop up" chemo.  He has adjusted very well to the colostomy which was a great concern to me.  We have done our best to keep everything normal for our kids during this time as well as ourselves and to just "keep it  moving".  

    Seeing that you are a runner I wanted to share what our oncologist said on our first appointment.  He explained the whole course of treatment and said that this is a marathon, not a sprint.  It sure has been!  You sound like a you have a great attitude and are very positive and being in good health prior to this diagnosis will be such a plus.  Like others have said, keep as busy as you can, rest when need and "keep it moving".

    Betsy