Recal cancer surgery options - quality of life and cure goals

dschreffler
dschreffler Member Posts: 58
edited March 2014 in Colorectal Cancer #1
Greetings,

I am weighing surgical options and looking for insight from others whom have gone thru this.

I was diagnosed with T3, Nx, M0 rectal cancer in January. I just completed 6 weeks of neoadjunctive (pre surgery) chemo and radiation treatments. Chemo was a weekly infusion of Oxi, and M-F xeloda with radiation.

Other then the radiation burn on the back side (OMG), only minor side effects - cold sensitivity, some tingling in the hands/feet, and constipation.

My goals are highest cure/lowest reoccurrence rate, followed by less complications on urinary, sexual function, and bowel control. I'm healthy otherwise, enjoy outdoor and other activities so lack of bowel/bladder control a greater issue for me then having "the bag". At the same time, I'd hate to make such a complete irreversible action if other techniques would be effective.

Hopkin's opinion is permanent colostomy, not even bothering with re-staging after this neoadjunctive chemo/radiation.
Local colon/rectal surgeon recommending re-staging in a couple weeks and then make determination on what surgical solution is then.

I'm going for a 3rd opinion at Sloan kettering in NYC as a tie breaker.

Anyone have sphincter saving surgery that seems to be more of an issue then a colostomy would have been?

Thoughts?
«1

Comments

  • Kerry S
    Kerry S Member Posts: 606
    transanal
    My rectal tumor was just a few inches in. The first 2 docs wanted to do open surgery and put me on a bag with a maybe re-hookup. The colon surgeon I chose cut the damn thing out transanal (right through my butt). He did have to cut out ¾ around my rectum to get it out. I also have quality of life on the top of my list. I think you do have to factor in your age when making these type of decisions. I’m 67 and everything is working as it should down there after 2 years.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Several Thoughts Actually...
    First, hello to you - thanks for stopping in to see us.

    Rectal surgery really differs from colon surgery, in the fact that there is less margin to work with when it comes to piecing you back together.

    In the colon, you can have several feet taken out and re-assembled...but with the rectum, there is only so much skin and muscle there in which to work from. The majority of cases end up with a colostomy.

    In my case, I only had millimeters separating me from a colostomy. As a result, I did external radiation (25x) and 5fu chemo pump 24 hours a day for weeks #1 and weeks #5. The goal was to shrink the tumor enough to allow the resection, as it was quite large and that's what the thought process was to accomplish this goal.

    Unfortunately, the radiation was none too kind to me, in fact it was brutal and wrecked everything inside of me from the waist down.

    One day I got up and had pain on that specific organ, and when I looked at it, it was bright red and a couple layers of skin had been burned through. So, it would stick to your underwear and when you peeled it off, let's just say Ouch.

    Not being too proud anymore, I went to my radiation oncologist and showed it to them. They gave me some cream to use - it helped some, but the damage was already done.

    It was hard to urinate for the longest time, painful and sometimes unable to fully void the bladder. We used FLOMAX to help ease the symptoms.

    Sexual dysfunction - radiation burned everything in its path, rendering things "useless." Wasn't even good to pee from anymore, much less perform any tricks. And while we're just talking frank, there was a great deal of "atrophy." Things shrank so much and you go from being a man to a little boy - that's a permanent issue.

    My onc finally explained that for radiation, it goes in and has to come out. And in a man, there is only ONE exit point, and you know what that is. So in essence, it was a raging forest fire and there was nothing left after it's destructive path.

    Rectal resection followed this - I was spared a colostomy just barely. But the first TWO years of my life were a living he11...bowel control was a huge issue and I could not plan on going anywhere. Sometimes I could make it into work and sometimes I had to leave mid-day, due to all of those complications.

    The bowels don't like to have their plumbing tinkered with and rectal surgery, where the spinchter muscle and control is, had been majorly jacked with due to radiation and the surgery.

    In all truth, it was 2 years lost right off the top, followed by slow recovery for the next 2 years. About 5-years out, things began to stabilize for me and it is now largely what it will be for the rest of my life. Things can still go sideways, but it is more manageable and I've got a better handle on things now.

    And sexual dysfunction eased up as well. Did all of the ED drugs available, Viagra, Levitra, and Cialis...found Cialis to be the best with the less side effects - it allowed a more normal flow to living and lasted 36-hours so you had some leeway and an option for things to happen.

    Over time, things repaired themselves to a degree and ED drugs are no longer mandatory - things can work on their own, but it's not like it was before all of this mess started.

    Shrinkage is permananent in a man or woman, but if things get rolling, it looks like you are accustomed to seeing. But in a normal state, it makes you want to cry. Things that nobody tells you about. Of course, when you're trying to save your life vs sex, the answer becomes clearer....you just have to trade this for that and then live with it for the rest of your life.

    TIME was the big key for me. I did not want a colostomy and fought hard and paid a heavy price for not having one. I thought that would be the straw that broke this camel's back and I did not think I could live with it.

    These are issues that most men would prefer to keep in a closet - after all their appendage relates directly to their manhood and it's embarassing to talk about. I have wanted to open a post about this for about a year, but I did not. I figured it would not get much airplay with little to no responses from the men on the forum.

    I'm not embarassed to discuss this and am glad that you posted. I hope my story will give you a counter-balance when weighing your decision.

    Right now, going into year #6, alot of functionality has returned fortunately - I can still get it done...will be the best 30 seconds of your life, baby - "brace yourself", LOL:)

    I'm as normal as I can be given everything, but what a beating I took for this route. No medical professional told me Jack $hit about any of this, and when I saw your post, I thought no man should have to go through this and should have the experience of another, and then decide.

    I wish you nothing but the best of luck with your decision. Many folks on the board with a colostomy and they are doing quite fine and have learned to live with it just fine. I admire these people with a sense of respect that I'm sure few of them know.

    Take care - Craig
  • dianetavegia
    dianetavegia Member Posts: 1,942
    Tho it might be that the cancer has shrunk, you are never actually downstaged. Treatment depends on the highest stage you have reached.
  • PGLGreg
    PGLGreg Member Posts: 731
    My rectal cancer was 5 cm
    My rectal cancer was 5 cm above the anus, and my surgeon did an LAR to cut it out. Stage 2a. No colostomy, but also no promises from my surgeon, who told me I might wake up with a bag. I had some mild symptoms during and after chemoradiation, but now, 4 1/2 years later, the only thing I notice is 2-3/day bowel movements and a little rectal gas. No other problems.

    --Greg
  • RickMurtagh
    RickMurtagh Member Posts: 586
    tumors
    One of my tumors was about three inches from the anus. Radiation and chemo made the tumor small enough for a jpouch to be an option. The problem with messing around so low in the abdomen is all the nerves for all kinds of stuff are there. The more they mess with things down there the more likely you will be to be part of the approximately %5 of men who end up with permanent erectile dysfunction. But as Craig said, better to be alive.

    I have an ileostomy and I am scheduled for my takedown next Tuesday. I'll let you know a month or two after that if it was worth it all. I have just gotten used to my ileo in the last month or so. If I had to I could see having one for life and it would not bother me overly much. Prior to the last month or so I could only wait, hope and pray for my takedown date to arrive.

    One of the things that weighs on my mind is how well I adjust to the takedown. I have had pretty significant diarrhea for two full weeks now and I can't even bare to think what that will mean post takedown. Now it means I empty and change my bag more often. Later it means...I prefer not to even go there.

    I think it is all about how well you are with accepting the consequences of the decisions you make now. In fact I think how you manage those consequences is what really determines what your quality of life will really be, not the decisions, the consequences or even the results of treatment.

    best wishes
  • John23
    John23 Member Posts: 2,122
    dschreffler -

    Re:
    "Anyone have sphincter saving surgery that seems to be more of an issue then a colostomy would have been?"

    Take a trip to www.uoaa.org

    You'll find plenty of answers there!!


    Good luck!
  • John23
    John23 Member Posts: 2,122

    tumors
    One of my tumors was about three inches from the anus. Radiation and chemo made the tumor small enough for a jpouch to be an option. The problem with messing around so low in the abdomen is all the nerves for all kinds of stuff are there. The more they mess with things down there the more likely you will be to be part of the approximately %5 of men who end up with permanent erectile dysfunction. But as Craig said, better to be alive.

    I have an ileostomy and I am scheduled for my takedown next Tuesday. I'll let you know a month or two after that if it was worth it all. I have just gotten used to my ileo in the last month or so. If I had to I could see having one for life and it would not bother me overly much. Prior to the last month or so I could only wait, hope and pray for my takedown date to arrive.

    One of the things that weighs on my mind is how well I adjust to the takedown. I have had pretty significant diarrhea for two full weeks now and I can't even bare to think what that will mean post takedown. Now it means I empty and change my bag more often. Later it means...I prefer not to even go there.

    I think it is all about how well you are with accepting the consequences of the decisions you make now. In fact I think how you manage those consequences is what really determines what your quality of life will really be, not the decisions, the consequences or even the results of treatment.

    best wishes

    Rick -


    Re:
    "I have had pretty significant diarrhea for two full weeks now..."

    Unless your doing chemo, radiation, or taking antibiotics, with an Ileo it's
    usually not "diarrhea", but generally due to what's called a "dumping syndrome".

    Once the re-connection is made and the ileocecal valve is restored,
    the digestive process may be restored, and the stuff flowing through
    will be in a more "timely fashion".

    I have an "end type" ileostomy, so a reversal will take the same
    major operation to reconnect it all. With a "loop type", the operation
    is simple, and recovery time fairly fast.... and there's less chance of
    having damage done to the prostrate, etc. from the surgery.

    I wish you guys the best of luck with the reversal.... I wish I had
    the courage to get mine done.
  • khl8
    khl8 Member Posts: 807

    tumors
    One of my tumors was about three inches from the anus. Radiation and chemo made the tumor small enough for a jpouch to be an option. The problem with messing around so low in the abdomen is all the nerves for all kinds of stuff are there. The more they mess with things down there the more likely you will be to be part of the approximately %5 of men who end up with permanent erectile dysfunction. But as Craig said, better to be alive.

    I have an ileostomy and I am scheduled for my takedown next Tuesday. I'll let you know a month or two after that if it was worth it all. I have just gotten used to my ileo in the last month or so. If I had to I could see having one for life and it would not bother me overly much. Prior to the last month or so I could only wait, hope and pray for my takedown date to arrive.

    One of the things that weighs on my mind is how well I adjust to the takedown. I have had pretty significant diarrhea for two full weeks now and I can't even bare to think what that will mean post takedown. Now it means I empty and change my bag more often. Later it means...I prefer not to even go there.

    I think it is all about how well you are with accepting the consequences of the decisions you make now. In fact I think how you manage those consequences is what really determines what your quality of life will really be, not the decisions, the consequences or even the results of treatment.

    best wishes

    Rick,
    Good luck with the

    Rick,
    Good luck with the reversal, if you need any guidance, support or suggestions, feel free to ask, Ihad my takedown last September after having the illeo for 9 months.
    Kathy
  • khl8
    khl8 Member Posts: 807
    I had rectal cancer and had
    I had rectal cancer and had to have a temporay illeostomy for 9 months, it has since been reversed. I personally hated the bag and was glad to see it go. The retraining after the reversal was challanging but worth it. I find that even though every third day or so I need to stay closer to a bathroom that I can do more without the bag than I felt I could wiht it.
    Again though this is up to you an your docs if you can save your sphincter. I begged the surgeon to do what he could to save it and did not know until I woke from surgery if if was temporary or permanent. Most of my problems with it were self image issues. I hate the thing and it wrecked havoc on my love life with my hubby. He did not mind it, but I couldn't deal with the bag being there. This was just my experience with it and eveyone is different.
    Kathy
  • dschreffler
    dschreffler Member Posts: 58
    Thank you all for the
    Thank you all for the feedback.

    Craig/Rick - I really appreciate the candor.. exactly the perspective I'm looking for. So would you have done anything different given what you know now?

    I understand the change to body image with having "the bag" and the emotional impact that has on folk - disfiguring of what was considered normal, dealing with a bag etc. The question I'm wrestling with is if that is compelling enough to overcome the risk of incomplete cancer removal, and potential complications for the additional surgeries to be "normal". I've not made any decisions, and am waiting to see what Sloan says, but still looking to hear why I would spend 2-3 years of recovery to enable stool to pass from by butt vs into a bag and have a shorter, less complicated ordeal, other then maintenance of stoma for rest of life.

    I'm asking hard questions and hope I don't appear callus in my asking - but I want to make a decision on facts, folks actual experiences and not emotion. I'm a function over form type of guy and am afraid I am biased one way already, so looking for insight.
  • RickMurtagh
    RickMurtagh Member Posts: 586
    John23 said:

    Rick -


    Re:
    "I have had pretty significant diarrhea for two full weeks now..."

    Unless your doing chemo, radiation, or taking antibiotics, with an Ileo it's
    usually not "diarrhea", but generally due to what's called a "dumping syndrome".

    Once the re-connection is made and the ileocecal valve is restored,
    the digestive process may be restored, and the stuff flowing through
    will be in a more "timely fashion".

    I have an "end type" ileostomy, so a reversal will take the same
    major operation to reconnect it all. With a "loop type", the operation
    is simple, and recovery time fairly fast.... and there's less chance of
    having damage done to the prostrate, etc. from the surgery.

    I wish you guys the best of luck with the reversal.... I wish I had
    the courage to get mine done.

    output
    I have had extremely good output for months - you could make roses if you put on a pastry bag tip. Then I had my CT scan and liquid for three days in a row (I expected that because of the barium contrast) and it has not recovered yet. My output has been so good for so long, I have been thinking of naming them.
  • abrub
    abrub Member Posts: 2,174 Member
    MSK
    I don't know who you're seeing at MSK, but Dr. Paty is my colorectal surgeon - brilliant, talented, and compassionate. Dr. Chung is my medical oncologist there - also a super rep.

    My cancer is appendiceal, but I'm treated in the colorectal group.

    Good luck. I see that you are considering all of the pros and cons to the various options - you have to decide what is right for you. I consulted with 3 specialists, including Dr. Paty, and was given 3 different treatment approaches. Dr. Paty's made the most sense to me, so I went with MSK, and have been happy with my decision. For someone else, a different approach might be better.

    I'm back to MSK on April 26th for my next round of CT scans and dr appointments.
  • steve g
    steve g Member Posts: 58 Member
    Sundanceh said:

    Several Thoughts Actually...
    First, hello to you - thanks for stopping in to see us.

    Rectal surgery really differs from colon surgery, in the fact that there is less margin to work with when it comes to piecing you back together.

    In the colon, you can have several feet taken out and re-assembled...but with the rectum, there is only so much skin and muscle there in which to work from. The majority of cases end up with a colostomy.

    In my case, I only had millimeters separating me from a colostomy. As a result, I did external radiation (25x) and 5fu chemo pump 24 hours a day for weeks #1 and weeks #5. The goal was to shrink the tumor enough to allow the resection, as it was quite large and that's what the thought process was to accomplish this goal.

    Unfortunately, the radiation was none too kind to me, in fact it was brutal and wrecked everything inside of me from the waist down.

    One day I got up and had pain on that specific organ, and when I looked at it, it was bright red and a couple layers of skin had been burned through. So, it would stick to your underwear and when you peeled it off, let's just say Ouch.

    Not being too proud anymore, I went to my radiation oncologist and showed it to them. They gave me some cream to use - it helped some, but the damage was already done.

    It was hard to urinate for the longest time, painful and sometimes unable to fully void the bladder. We used FLOMAX to help ease the symptoms.

    Sexual dysfunction - radiation burned everything in its path, rendering things "useless." Wasn't even good to pee from anymore, much less perform any tricks. And while we're just talking frank, there was a great deal of "atrophy." Things shrank so much and you go from being a man to a little boy - that's a permanent issue.

    My onc finally explained that for radiation, it goes in and has to come out. And in a man, there is only ONE exit point, and you know what that is. So in essence, it was a raging forest fire and there was nothing left after it's destructive path.

    Rectal resection followed this - I was spared a colostomy just barely. But the first TWO years of my life were a living he11...bowel control was a huge issue and I could not plan on going anywhere. Sometimes I could make it into work and sometimes I had to leave mid-day, due to all of those complications.

    The bowels don't like to have their plumbing tinkered with and rectal surgery, where the spinchter muscle and control is, had been majorly jacked with due to radiation and the surgery.

    In all truth, it was 2 years lost right off the top, followed by slow recovery for the next 2 years. About 5-years out, things began to stabilize for me and it is now largely what it will be for the rest of my life. Things can still go sideways, but it is more manageable and I've got a better handle on things now.

    And sexual dysfunction eased up as well. Did all of the ED drugs available, Viagra, Levitra, and Cialis...found Cialis to be the best with the less side effects - it allowed a more normal flow to living and lasted 36-hours so you had some leeway and an option for things to happen.

    Over time, things repaired themselves to a degree and ED drugs are no longer mandatory - things can work on their own, but it's not like it was before all of this mess started.

    Shrinkage is permananent in a man or woman, but if things get rolling, it looks like you are accustomed to seeing. But in a normal state, it makes you want to cry. Things that nobody tells you about. Of course, when you're trying to save your life vs sex, the answer becomes clearer....you just have to trade this for that and then live with it for the rest of your life.

    TIME was the big key for me. I did not want a colostomy and fought hard and paid a heavy price for not having one. I thought that would be the straw that broke this camel's back and I did not think I could live with it.

    These are issues that most men would prefer to keep in a closet - after all their appendage relates directly to their manhood and it's embarassing to talk about. I have wanted to open a post about this for about a year, but I did not. I figured it would not get much airplay with little to no responses from the men on the forum.

    I'm not embarassed to discuss this and am glad that you posted. I hope my story will give you a counter-balance when weighing your decision.

    Right now, going into year #6, alot of functionality has returned fortunately - I can still get it done...will be the best 30 seconds of your life, baby - "brace yourself", LOL:)

    I'm as normal as I can be given everything, but what a beating I took for this route. No medical professional told me Jack $hit about any of this, and when I saw your post, I thought no man should have to go through this and should have the experience of another, and then decide.

    I wish you nothing but the best of luck with your decision. Many folks on the board with a colostomy and they are doing quite fine and have learned to live with it just fine. I admire these people with a sense of respect that I'm sure few of them know.

    Take care - Craig

    Thanks Craig
    Your open and honest discussuon of problems post surgery have been extremely helpfull. I had a permanent colostomy in Nov. 08 and have experienced many of the same problems that you have but I blamed it on age, I'm now 70. The bag was hard to accept but after reading what Vicki from Co. went through for the first year, I'm satisfied with what I have and have accepted it. I didn't realize that the bladder problems caused by radiation were normal as well as the sexual dysfunction and the psychological aspects of the whole ordeal. Once more Thank You, I thought I was alone with my problems because I was too embarrassed to ask anyone and never read anything on this site related to them.
    Steve
  • coloCan
    coloCan Member Posts: 1,944 Member
    steve g said:

    Thanks Craig
    Your open and honest discussuon of problems post surgery have been extremely helpfull. I had a permanent colostomy in Nov. 08 and have experienced many of the same problems that you have but I blamed it on age, I'm now 70. The bag was hard to accept but after reading what Vicki from Co. went through for the first year, I'm satisfied with what I have and have accepted it. I didn't realize that the bladder problems caused by radiation were normal as well as the sexual dysfunction and the psychological aspects of the whole ordeal. Once more Thank You, I thought I was alone with my problems because I was too embarrassed to ask anyone and never read anything on this site related to them.
    Steve

    Steve g
    Tried sending you a PM on this problem but couldn't get thru......steve
  • coloCan
    coloCan Member Posts: 1,944 Member
    steve g said:

    Thanks Craig
    Your open and honest discussuon of problems post surgery have been extremely helpfull. I had a permanent colostomy in Nov. 08 and have experienced many of the same problems that you have but I blamed it on age, I'm now 70. The bag was hard to accept but after reading what Vicki from Co. went through for the first year, I'm satisfied with what I have and have accepted it. I didn't realize that the bladder problems caused by radiation were normal as well as the sexual dysfunction and the psychological aspects of the whole ordeal. Once more Thank You, I thought I was alone with my problems because I was too embarrassed to ask anyone and never read anything on this site related to them.
    Steve

    Steve g
    Tried sending you a PM on this problem but couldn't get thru......steve
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Thank you all for the
    Thank you all for the feedback.

    Craig/Rick - I really appreciate the candor.. exactly the perspective I'm looking for. So would you have done anything different given what you know now?

    I understand the change to body image with having "the bag" and the emotional impact that has on folk - disfiguring of what was considered normal, dealing with a bag etc. The question I'm wrestling with is if that is compelling enough to overcome the risk of incomplete cancer removal, and potential complications for the additional surgeries to be "normal". I've not made any decisions, and am waiting to see what Sloan says, but still looking to hear why I would spend 2-3 years of recovery to enable stool to pass from by butt vs into a bag and have a shorter, less complicated ordeal, other then maintenance of stoma for rest of life.

    I'm asking hard questions and hope I don't appear callus in my asking - but I want to make a decision on facts, folks actual experiences and not emotion. I'm a function over form type of guy and am afraid I am biased one way already, so looking for insight.

    $64,000 Question
    Hi D

    You know I've played this one "over and over" in my head for the last 6-years. What would I do differently? Or would I?

    Given my age then 42 and my age now 48, I would probably go down the same path again. What they should have told me, is you are going to lose several years of your life with "recovery."

    That would have helped me gear my mind right, so I would know that even though I'm suffering so, things will ease up and recover to some degree. I know 5-years of recovery is a long time to get well, but in the scheme of a longer life, I feel like I'm still ahead of the game and I'm still mostly normal.

    I mean, I'm the only one that I know of here, where my recovery took so long - I'm a unique case it seems. For most people, that may seem like too long of a time for them.

    But, it's also the emotional vs the physical. The mental aspect of one's survival and recovery is not to be underestimated. That's one that separates all of us - it's so unique to each and every individual.

    If I had woke up with a colostomy, I'm sure it would have thrown me for a loop - but I'm sure I would have dealt with like so many other brave people here do everyday.

    It's safe to say, that none of us would volunteer for a colostomy, but if you have one, it's like alot of things - you've got to come to grips with it, or you won't survive.

    Again, the $64,000 question.

    So, yes for me right now, only because of my age - if I were much older, then I might not want to invest the time for that recovery.

    It's been good talking to you - I'm glad that we as men, can openly talk about this issue. I've always said, "How are we going to learn from one another, if we don't tell the truth?"

    I wish you nothing but the best in your decision going forward - hope that whatever you decide will be the best thing for you to do. I look forward to hearing what you decide on, if you would like to tell me.

    -Craig
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    steve g said:

    Thanks Craig
    Your open and honest discussuon of problems post surgery have been extremely helpfull. I had a permanent colostomy in Nov. 08 and have experienced many of the same problems that you have but I blamed it on age, I'm now 70. The bag was hard to accept but after reading what Vicki from Co. went through for the first year, I'm satisfied with what I have and have accepted it. I didn't realize that the bladder problems caused by radiation were normal as well as the sexual dysfunction and the psychological aspects of the whole ordeal. Once more Thank You, I thought I was alone with my problems because I was too embarrassed to ask anyone and never read anything on this site related to them.
    Steve

    The Door Opened and I Walked Through It...
    Hi Steve

    Well, thank you for your post, I appreciate it. You are more than welcome...I am glad I was able to validate your feelings. I too have wandered alone with this issue for all of those years...even finding the board, I too did not see any postings or info on this and we being men...well we can sometimes be just that, men.

    When this post opened, I realized this was my chance to come out with my story, in the hopes that it would help D, who opened it, plus any other men, who might benefit from it.

    Seeing yours and D's responses have validated that I made the right decision. I've always figured "How are we going to really learn from one another, if we don't tell the truth?"

    As you can see, I'm not shy about a great many topics - this one is close to the heart. I wish I had known more or been told more by my medical staff - that is why it was so important for me to finally be able to say what I had long wanted to say. I was going to post, but just held it and held it. I want to thank D, for popping the cork and letting me get all of this out.

    You are definitely not alone - it's that alone feeling that makes us feel like we're not right and we feel more isolated by not being able to discuss it openly. Even here with the board, where we are supposed to be able to talk about anything, it just seemed TABOO.

    I had seen the ladies talk about their radiation issues on their "particulars" and it hurt me to read those struggles too, but it was enlightening to hear how they were affected. I admired their courage - the ladies are better than the men at discussing such matters. A couple of times I posted on their threads (was the only guy) and one lady said she appreciated hearing things from a male's perspective - just as curious about us as we are them:)

    I was 42 when it happened to me, so you can imagine how emotionally devastating it was for a young man to lose his manhood and have nothing offer his wife - I kept reminding myself of the bigger picture - LIFE, but still, when you look in the mirror, you see the effects of the "medicine" they gave you, and not telling you what was going to happen. Upsets me to this day.

    That's why I work these boards, I was lied to, and not properly informed. I was just the guinea pig, who they "practiced" on. When I came here, I decided I was going to help people from my direct experiences and hope that they would at least have the knowledge that I did not, so they ccould make the proper decisions for themselves, armed with knowledge that the medical community so conveiently "overlook."

    Real pleasure to meet you, Steve. I'm 48 now. It was nice to wake up to your post and see that I was able to lend some insight.

    And "You're Welcome" - take care!

    -Craig
  • dschreffler
    dschreffler Member Posts: 58
    abrub said:

    MSK
    I don't know who you're seeing at MSK, but Dr. Paty is my colorectal surgeon - brilliant, talented, and compassionate. Dr. Chung is my medical oncologist there - also a super rep.

    My cancer is appendiceal, but I'm treated in the colorectal group.

    Good luck. I see that you are considering all of the pros and cons to the various options - you have to decide what is right for you. I consulted with 3 specialists, including Dr. Paty, and was given 3 different treatment approaches. Dr. Paty's made the most sense to me, so I went with MSK, and have been happy with my decision. For someone else, a different approach might be better.

    I'm back to MSK on April 26th for my next round of CT scans and dr appointments.

    I'll be seeing Dr Weisser on
    I'll be seeing Dr Weisser on the 27th. I've heard a lot of praise for Dr. Paty, and all the staff at MSK. One of my chemo pals had his surgery done by Paty. He is in similar situation as I am, just a bit older and looking forward to reversal.

    Good luck with your scans!
  • steve g
    steve g Member Posts: 58 Member
    coloCan said:

    Steve g
    Tried sending you a PM on this problem but couldn't get thru......steve

    Computer illerate
    Sorry Steve, haven't any idea how to receive PM's on here..Steve
  • coloCan
    coloCan Member Posts: 1,944 Member
    steve g said:

    Computer illerate
    Sorry Steve, haven't any idea how to receive PM's on here..Steve

    You seem to have a block on receiving PMs
    which I don't know how for you to undo (not too computer literate myself-thus no photo)steve