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Rolled a 3

darcher
darcher Member Posts: 304

I got the official word today.  The endoscopic ultrasound was done and it's stage 3 and sits right at the border of the rectum and colon.  30 mm long and 23mm wide.  The doctor said since it penetrated a level of tissue in the colon that it got upgraded (As though it's a good thing).  Pictures were included, as if I really needed to see that.   I was hoping for a 2 but oh well.  It's almost funny how this went.  First the surgeon told me a simple surgery would do it a couple weeks back which changed to radiation and surgery a week later.  Now it's chemo, radiation, and surgery. 

   I  don't know what to expect beyond having the procedures.  Will I be able to continue working, sit, or do much of anything and for how long.  If anyone has had similarly situated stage 3 what sort of process is done and in what order.  Is radiation and chemo done together or one after the other.  I read radiation can be for several weeks and every day except weekeds.  Does it depend on your overall health as to being able to tolerate them together if they do it that way.  From all the posts I've read chemo is probably going to be an **** kicker. But what about radiation?  Is that a free from pain process?     

Comments

  • plsletitrain
    plsletitrain Member Posts: 252
    Stage 3

    Is it stage 3A, B, or C?  The good news is after the surgery, it will be downgraded.  Mine was stage 3B after surgery, damn. As I've said in my other posts, I had the emergency operation because of the erupting thing.  I think I now get what that meant.  The mass blocked some portion of the colon that my wastes were not going out (I haven't pooped for the last 3 days until I checked in the ER so I was in danger of being poisoned).

    The surgery will be for just a couple of hours.   After that is great feeling.  You'll feel as healthy as a newborn.  I was standing up the next day, and started walking a few steps, was back to normal after a week or two.  I don't have any input on Radiation as it wasn't an option for me.  I'm now on chemo and I'm quite fine, I gotta do what I gotta do.  There are times I say this sucks, why do I have this but I realize its there, time to accept it, and do what I can to prolong my life.

    Good luck and keep us posted! We can do this!

  • darcher
    darcher Member Posts: 304
    edited July 2017 #3
    They didn't say what the

    They didn't say what the suffix was.  I suspect that doesn't come into play until surgery time.  I could use a 'newborn' feeling.  This POS tumor is clogging me up half the time.    

  • betula
    betula Member Posts: 86
    treatment

    My husband's tumor was low in his rectum.  He had 28 days of raditaion and 5 fu chemo which was delivered through a pump that he wore for 5 days.  He could have done a pill form of chemo but because he was taking another medication for a trial study that he got into, he had to do the pump.  Radiation was every day M-F.  Side effects are accumulative.  They basically said that his side effects would primarily be from the radiation.  He is a firefighter but did continue to work for most of that time but on "light duty" which was 12 hours every third day.  He would just leave work, go to radition which took about 20 minutes and then go back.  By the end of the chemo/radiation he did take time off because he was feeling pretty bad. The goal of chemo/radiation prior to surgery is to shrink the tumor to have a better outcome from surgery.  He did end up with a permanent colostomy because his tumor was so low.  Prior to surgery he was stage 2 and after surgery it went to stage three.   If I remember right it was because prior to they could not see all of the tumor because it was close to bladder and prostate.  he had four tumor deposits and 1 of 31 lymph nodes were involved.   A lot of times you will see tumors graded like this: T (tumor) N (how many nodes involved) M (Metastisis).  I believe my husband was T3N1M0 after surgery. 

    He is now having "mop up" chemo which is Oxaliplatin (sp?) and he has the 5 fu pump for two days but also gets a bolus of it when he goes in for his chemo infusion.  He just had his fourth treatment yesterday and the side effects are getting a bit worse each treatment.  He will have a total of 8 and gets them every two weeks.  He had his surgery April 26th and just went back to light duty again earlier this month.  If you don't have a colostomy your recovery time would be much less.  He is very tired a few days after chemo so he will take days off as needed.  So far this has not been as bad as radiation for him.

    Hope this helps and was not information that you already knew.  I am certainly not an expert...too busy with kids/ work/ etc to do tons of research and sometimes I think that might be a good thing Smile

    Wishing you the best on this journey!

     

     

     

  • zx10guy
    zx10guy Member Posts: 273
    The explanation you got from

    The explanation you got from your doctor makes absolutely no sense.  A stage 3 diagnosis has nothing to do with the penetration of the tumor into the colon/rectal walls.  It's primarily due to lymph node involvement.  I'd go back and ask for clarification or seek a second opinion if he/she doesn't clarify the lymph node involvement.

  • betula
    betula Member Posts: 86
    edited July 2017 #6
    lymph nodes

    Prior to surgery my husband had a procedure similar to colonoscopy but it was a biopsy to stage the tumor.  At that time, they staged at a two, with no lymph nodes around it involved.  To my understanding, this staging is just preliminary and after surgery is the "offical" staging. 

  • zx10guy
    zx10guy Member Posts: 273
    betula said:

    lymph nodes

    Prior to surgery my husband had a procedure similar to colonoscopy but it was a biopsy to stage the tumor.  At that time, they staged at a two, with no lymph nodes around it involved.  To my understanding, this staging is just preliminary and after surgery is the "offical" staging. 

    This is correct.  I'm

    This is correct.  I'm concerned by the misinformation or lack of clarity provided by the doctor in question.  If his statement about OP being stage 3 due to the depth of invasion of the tumor is accurate, I'd be looking for a new doctor ASAP.

  • JanJan63
    JanJan63 Member Posts: 2,478
    I had the radiation and the

    I had the radiation and the chemo at the same time before the surgery and I found it to be very tiring. I couldn't have worked during it. I was half out of it and would lie in bed all day staring out the window at the clouds. I'm normally a very active person who doesn't sit still well so this was extreme for me. At one point I fell asleep during a long distance phone call and didn't have a long distance plan at the time.

    I know that it's different for other people but that was my experience. Some people work during it. The chemo was the 5FU.

    Jan 

  • zx10guy
    zx10guy Member Posts: 273
    I have a friend who was

    I have a friend who was border line rectal/colon due to the tumor location.  They decided in the end to treat it as rectal.  Her team of doctors decided not to do radiation.  There's been some focus on whether radiation in some rectal cancer patients is actually providing any benefit.  So she only had chemo prior to surgery and after.

  • darcher
    darcher Member Posts: 304
      I got the full designation.

      I got the full designation.  I had to read through a lot of stuff to get to where it said T3 UN0.  The "N0" I guess means no nodes. Prior to getting proded the doctor said they'll probably get some samples but after looking around they didn't see a need to.  Perhaps the position being where it is made the difference.  It did say it was in to the submucosa (Thanks Newhere) the picture on the staging page helped.   Reading through that I didn't see anything about the letter 'U' which may mean unknown so maybe I shouldn't be too joyous about a N0 since it may not be clearly accurate.

      Now I'm waiting for the referrel to oncology and radiation.  Here we go.  I just hope to God I don't have to wear a permanent colostomy bag.  I don't think I'd be able handle that. 

  • plsletitrain
    plsletitrain Member Posts: 252
    Permanent colostomy bag

    I'm quite comfortable with it that my decision as of now is not to have the reverse surgery.  I think I'll live with this thing forever.  I'm okay with that.

    By the way, everyone responds to chemo differently.  I was a smoothsailer on my 3 5FUs infusion...I didn't get weak, worked the following day.  Nothing.. except the metallic taste in the mouth.  However, I shifted to Xeloda because I can't handle the hospital set-up.  When I was with the 5FU I had to stay in the hospital for 3 days (I don't have a port so I can't bring home the pump with me), so I just had the usual IV line.  I was so immobile there and I hate being in the hospital.  So I switched to the Xeloda.  The catch is, since I'm on xeloda now, the oxaliplatin's dose was increased.  It made me weak this time.  I was in bed for 3 days, although I didn't feel nauseous.  I'm a bit afraid for the upcoming oxali infusions but I'd rather be weak at home than be at the hospital for 3 days with nothing to do, nothing to look at, nothing to breathe but hospital air.  My onco asked me which I prefer.  I'd prefer the 5FU physically, but it was mentally draining.  So I think I'll just stick with Xeloda and spend my "weak" days at home where I can move freely and see my kids.

  • JanJan63
    JanJan63 Member Posts: 2,478
    edited July 2017 #13
    I don't have a colostomy but

    I don't have a colostomy but I do have an illeostomy. I can have it reversed but I'm not going to. Not having to worry about things like diarrhea and now knowiing that I have areas where things have become smaller- I can't remember what that's called- there's no way I'm interested in reversing it. The only time it's annoying is when I have a day or a few hours where it fills or puffs up over and over. It doesn't happen often but when it does I think I hate it. Then I remember having diarrhea my whole life and having to choose jobs based on the drive to work and possibly having to make a stop and where the bathroom is located in the business and having it ruin just about every activity I've ever done in my life and I love it again. I couldn't go hiking, I couldn't take my horse on a trail ride, nothing that involved not being near a bathroom. And if I took something for diarrhea then I didn't have diarrhea but i had all the gas, bloating and pain, sometimes feeling so faint I thought I'd pass out. 

    Sorry, I'm going on and on about it but my point is that the ostomy is okay. No more worrying about passing wind in public! If you get one it's not the end of the world. It's just another step in getting healthy again. I'm not trying to sound dismissive of your concerns, I just hope that you'll worry less.

    Jan

  • darcher
    darcher Member Posts: 304
    edited July 2017 #14
      I read through the post

      I read through the post visit papers last night versus doing what I usually do, giving it a glance and then wadding them up and tossing it on the table which was part of the denial game I was playing.  That seems to be shifting into the anger phase because I can feel the resentment building up. 

      Some of the other details of what was found is that the sonagram showed possible breakthrough of the muscularis propria into the perirectal fat, layer 5.  It also covered 50% of lumen circumfrence which probably explains the constant constipation. My guess is only so much pressure is applied by the digestive tract and it's not enough to naturally get by the blockage causing what appears as constipation.  

      The radiation people called Friday and I'm going in Tuesday for the initial consultation.  I'm going to ask for proton therapy versus standard radiation due to it's more effective results. I met someone today that survived brain cancer.  His story was both compelling and encouraging in that he emphasized the need for a positive attitude and having a reason to survive. He's 7 years cancer free.  The woman at the radiation dpt I spoke to also said something similar and she too is a cancer survivor.  In both cases the symbiotic connection between attitude and the strength of the immune system was made. Seems this is as much a mental game as it is medical.  It is so tough staying upbeat when you feel like an oddball around normal people. 

       Janjan I'm kinda experiencing something similar.  I'm having a hard time controlling those little bowel fluctuations that could be gas or in my case end up as water leakage.  For a guy we can get away with passing gas in public to some degree but the other isn't.  It doesn't show or smell but it sure is unnerving.  We went to a little group picnic thing today and it happened a couple times. It was a surprise and I didn't have the chance to even consider a run to the bathroom. This is freakin unacceptable and all due to a stupid little blob that looks only slightly out of place. They give you pictures of it to look at.  I'm not sure why they do that.

       During my dad's colon cancer episode he didn't have a colostomy or anything else and his stage was the same as mine.  Maybe it's vanity but I really don't want to endure that.  Zx10guy, I'm going to bring that up concering actual benfits of radiation.  But, if proton can be done then I'll probably go through with it.  What ever it takes to get rid of it short of me just ripping it out with a pair plyers I'm game for.

     

     

  • JanJan63
    JanJan63 Member Posts: 2,478
    darcher said:

      I read through the post

      I read through the post visit papers last night versus doing what I usually do, giving it a glance and then wadding them up and tossing it on the table which was part of the denial game I was playing.  That seems to be shifting into the anger phase because I can feel the resentment building up. 

      Some of the other details of what was found is that the sonagram showed possible breakthrough of the muscularis propria into the perirectal fat, layer 5.  It also covered 50% of lumen circumfrence which probably explains the constant constipation. My guess is only so much pressure is applied by the digestive tract and it's not enough to naturally get by the blockage causing what appears as constipation.  

      The radiation people called Friday and I'm going in Tuesday for the initial consultation.  I'm going to ask for proton therapy versus standard radiation due to it's more effective results. I met someone today that survived brain cancer.  His story was both compelling and encouraging in that he emphasized the need for a positive attitude and having a reason to survive. He's 7 years cancer free.  The woman at the radiation dpt I spoke to also said something similar and she too is a cancer survivor.  In both cases the symbiotic connection between attitude and the strength of the immune system was made. Seems this is as much a mental game as it is medical.  It is so tough staying upbeat when you feel like an oddball around normal people. 

       Janjan I'm kinda experiencing something similar.  I'm having a hard time controlling those little bowel fluctuations that could be gas or in my case end up as water leakage.  For a guy we can get away with passing gas in public to some degree but the other isn't.  It doesn't show or smell but it sure is unnerving.  We went to a little group picnic thing today and it happened a couple times. It was a surprise and I didn't have the chance to even consider a run to the bathroom. This is freakin unacceptable and all due to a stupid little blob that looks only slightly out of place. They give you pictures of it to look at.  I'm not sure why they do that.

       During my dad's colon cancer episode he didn't have a colostomy or anything else and his stage was the same as mine.  Maybe it's vanity but I really don't want to endure that.  Zx10guy, I'm going to bring that up concering actual benfits of radiation.  But, if proton can be done then I'll probably go through with it.  What ever it takes to get rid of it short of me just ripping it out with a pair plyers I'm game for.

     

     

    Oh yeah, there's few things

    Oh yeah, there's few things more shocking than getting that little bit that scares you for a second! The "OMG, it's a liquid, not just air!" gives quite a jolt! I still get the odd bit of liquid in very small quantities because the bowels keep producing mucous to keep things that aren't there moving along and sometimes when that happens I get quite the jolt. 

    I hope you'll find peace if it happens that way. But I hope you don't need one! The supplies are expensive, too.

    Jan

  • Annabelle41415
    Annabelle41415 Member Posts: 6,711 **
    edited July 2017 #16
    zx10guy said:

    I have a friend who was

    I have a friend who was border line rectal/colon due to the tumor location.  They decided in the end to treat it as rectal.  Her team of doctors decided not to do radiation.  There's been some focus on whether radiation in some rectal cancer patients is actually providing any benefit.  So she only had chemo prior to surgery and after.

    Mine was rectal and they did chemo/radiation, surgery, chemo so things might have changed since my diagnosis in 2008, but I'm still cancer free however, I've been through two hip replacements and neuropathy because of chemo since then.  Hope they did change the regime.  Also my tumor was decreased from a nickle size tumor in the rectum to the size of a ball point pin tip after radiation so I'd pick radiation any day of the week.

    Kim

  • phuckcancer
    phuckcancer Member Posts: 63
    prayers and well wishes

    prayers and well wishes coming your way!!!!! (((hug))

  • danker
    danker Member Posts: 1,276
    stage

    I was stage 2 boardering on stage 3.  Radiation and chemo  for 5 weeks. then a 5week rest before surgery, 

    .  Given an iliostome ,which was reversed  six weeks later.  Developed fistula that healed itself with 6 weeks.  Ned with only confirming colonoscopies in years following.  Now NED for 7 years.  Started at age 77, currently 85!!!