Hello everyone, new member here 38 years old.

mzaenger
mzaenger Member Posts: 2
edited March 2014 in Colorectal Cancer #1
Hello everyone I am a new member to the boards here. I was recently diagnosed with colon cancer. Drs are guessing that I am currently at a stage 2 and hoping that surgery and chemo will take care of me.
About 2 months ago I woke up in the morning with what I felt were gas pains in my abdomen. pain was so bad at times that I was laying in the fetal position on the floor. I went to the ER and they took a CT scan and found a mass in my colon. At first they were saying it was colitis and perscribed me antibiotics, they also encouraged me to follow up with my primary DR. Follow up DR had me go in for colonoscopy. GI Dr said that there was a mass smaller than a tennis ball and it is cancerous (biopsy showed positive)
I was refered to general surgery and the Dr with my age and fimily history (both grandfathers died of colon cancer in their 50s) that he was recomending full colon removal.

Anyone have any advise/suggestions for me? My surgery is scheduled for 10/21/09.

Thank you

Martin
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Comments

  • Shayenne
    Shayenne Member Posts: 2,342
    Hello Martin!
    It's nice to meet you and Welcome to the board! I have Stage 4 Colon cancer with mets to the liver, and this family here will be very welcoming to you as well. My one advice is not to read the stats on the internet, they are out of date, and people are living longer with this cancer.

    When starting chemo, make sure you get really good anti-nausea drugs to help with it, take them even if you don't feel nauseous! Just keep on top of it.

    Keep coming here for support, we're all in this together, and keep a positive mind, it always helps, you will get through this. There is alot of things out there for pain as well, whatever questions you have, just ask away :)

    You will be in my thoughts and prayers :)
    Hugsss!
    ~Donna
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Welcome to the board
    Hi Martin, My name is Brooks and I have stage 3 rectal cancer (I'm 45). I have went through 6 ½ weeks of chemo and radiation and then on August 13 surgery to remove the tumor. Surgery went great and the tumor showed NO signs of cancer left from the treatments. Now I’m at home recovering from the surgery and have now went through my 3rd treatment of my final round of chemo Oxy and 5FU. Remember to stay strong and contact me if you don’t have anyone else to talk to. I’m here to help anyone else I can. I know it’s tough.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    go consult w/ another surgeon
    HI Martin,

    Sorry to hear of your situation. Personally, I'm stage IV- diagnosed two years ago just after my 41st birthday, but I am doing pretty well. Anyway, I would urge you TODAY to call another hospital or surgery center and ask for a consultation asap- on a quick emergency basis, since your scheduled surgery is coming up in less than a week. If I were you, I would NOT let a general surgeon operate on me to remove the colon. There are surgeons who specialize in colorectal surgery- they do many of the same kinds of surgeries daily. Where do you live?? I don't know the names of smaller centers, but I have heard that Mayo Clinic (I think in Minnesota and possibly another smaller location in Arizona?) is excellent, also MD Anderson in Texas, and Sloan Kettering in New York. I live just north of San Diego, CA. If you live in southern Calif, I'd recommend Dr. Ramamoorthy at UCSD. Further north is Dr. Lenz at USC (Los Angeles). I believe UCSF (San Francisco) is also very good. You ideally want to go a NCI (Nat'l Cancer Institute) comprehensive cancer center where you'll have your oncologist, surgeons, radiologists, etc. all work together as a team. I started out without one and found communication between doctors was a problem (I always had to relay the information, send copies of my scans, etc.)- it was a pain and inefficient. I also know that surgeons that specialize in colon/rectal surgery are more highly trained in the field and the "how to" than general surgeons.
    Hopefully, someone can get you in soon if you call today but, if not and it's a matter of waiting another week or two at the most, I'd postpone your scheduled surgery date until after I was able to get in to see someone else for another opinion. How one surgeon recommends the work to be done, you might get another who will completely agree, or someone else may have a different or even better approach. Sounds like you will need surgery, but perhaps the type of surgery done won't need to be as drastic. Sometimes some of them like to do radiation on the tumors first- this is pretty standard when the tumor is in the rectum, but I've heard some are starting to do radiation first even when it's higher in the colon.

    Do take care- I know things are confusing, but read up on different types of colon/rectal resections on the internet (check the dates and sources of your articles/info carefully- reading outdated info won't be helpful). I'd only read and take seriously info that was written within the past two years- within the last year would even be better.
    Sometimes if you google some of the major hospitals with cancer centers, they'll give info on their website about the types of surgies they offer, you can read the doctors/surgeons, bios, etc. Worth looking into asap!

    Take care,
    Lias
  • AceSFO
    AceSFO Member Posts: 229
    Hi, Martin
    Donna's right - the people on this board are wonderful and amazing and will offer you all sorts of support and maybe some gentle ribbing from time to time too ;-). My partner was dx'd with stage 3 colon cancer in oct. '07 and has done two rounds of chemo, 6 weeks of radiation and cyber knife treatments as well (he just posted about those this morning - johnsfo). During his first round of chemo there was a lot of nausea, and, this is going to sound odd, but my sister was pregnant at the time and sent us some little candies designed for morning sickness called Preggie Pop Drops. They really helped. I also have to provide a disclaimer that everyone knows that sugar feeds cancer, so take it or leave it. The other thing that really worked for nausea isn't exactly legal, but if you've got some...
    Do you have a spouse/partner or someone to help you through this?
    Keep us posted,
    Adrian
  • Shayenne
    Shayenne Member Posts: 2,342
    AceSFO said:

    Hi, Martin
    Donna's right - the people on this board are wonderful and amazing and will offer you all sorts of support and maybe some gentle ribbing from time to time too ;-). My partner was dx'd with stage 3 colon cancer in oct. '07 and has done two rounds of chemo, 6 weeks of radiation and cyber knife treatments as well (he just posted about those this morning - johnsfo). During his first round of chemo there was a lot of nausea, and, this is going to sound odd, but my sister was pregnant at the time and sent us some little candies designed for morning sickness called Preggie Pop Drops. They really helped. I also have to provide a disclaimer that everyone knows that sugar feeds cancer, so take it or leave it. The other thing that really worked for nausea isn't exactly legal, but if you've got some...
    Do you have a spouse/partner or someone to help you through this?
    Keep us posted,
    Adrian

    OK....
    ...Just wanted to comment that I am totally giggling at John taking Preggie Pop Drops. That is too cute LOL

    Hugsss!
    ~Donna
  • Patteee
    Patteee Member Posts: 945
    Just a general surgeon is
    Just a general surgeon is doing your surgery? I am confused on why the recommendation to take the entire colon? Due to a family history? Did you have genetic testing on the tumor? The initial concern for me was my strong family history of colon cancer and the surgeon wanting to know before hand if it was genetic. If it was, she wanted to take the entire colon, if not, no need to take the whole thing. Testing was done at Mayo on a Wednesday, surgery set for the following Monday. She called me Friday afternoon that the testing was negative and I was good to go for a resection of colon on that Monday. We wished one another a restful weekend, I told her to eat her corn flakes on Monday am. And then my bowel obstructed that night and I was rushed to Mayo in the middle of the night.

    My recommendation is just to take care of those pesky things before the surgery. Like job, family, home :):) I broke my cancer treatment into 3 parts 1. surgery, 2. chemo 3. reconnection of bowels (I had a colostomy). I really tried to focus on the part I was in by not looking back and not looking ahead. In other words when I would panic about the chemo part when I was healing from the surgery I would stop myself and say to myself, "you aren't there yet Patty, when you are that will be plenty of time to freak out!" Thinking like this helped me keep it in perspective. Afterall, no sense in replaying horrific events from the past and no point in trying to figure out the future.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Hello and welcome. Sorry
    Hello and welcome. Sorry you need to be here, but since you do, you've found a great community.

    I would really suggest getting a second opinion from a specialist. "Full colon removal" sounds VERY drastic for what is considered to be stage II. Most of us have had resections with anywhere from 6" to over a foot of colon removed. I have never heard of anyone at stage II having their entire colon removed? You won't know full staging until after surgery when they can see exactly how far through the colon wall the tumor has grown (if it has penetrated the wall) and if there is any lymph node involvement.

    I would HIGHLY recommend finding a doctor that does the laproscopic procedure if possible. The recovery is a lot easier and quicker. I was "pushed through" the system even quicker than you. I'd had the pains you had for about a year - pretty awful since last January, but my primary was stuck on thinking it was IBS. I have a high pain tolerance, so he just didn't understand how bad my pain was. So by the time I had my scope my colon was almost completely blocked. I needed the tumor out immediately because any day I would have had total obstruction. As I was pulling out of the GI Dr's office, I had a call from the surgeon's - pre-op scheduled the next day, with surgery the following.

    I jumped online in the morning before my pre-op appointment with the surgeon, to do a little research, and found "minimally invasive colon surgery." I am so glad I did that. When I went to my appointment I found that they did have surgeons who performed laps, but the one I was scheduled with did not. One that did them agreed to work on his day off to do my surgery, and the original surgeon assisted to learn more so he can do them soon. (He does right side through lap, but not left currently.)

    You aren't guaranteed that a lap procedure will work for you - they warn that if it doesn't go easy they might have to revert to open surgery. But I'd definitely go for the least invasive procedure to start. They never know exactly how much colon they need to take till they get in and do it. They will also take surrounding tissue to test as many lymph nodes as possible to see if you have lymph nodes involved. You won't know those answers until after surgery and biopsies. So you won't know staging and recommended follow-up treatment till then. It is hard to wait for answers, but no way around it.

    You have a little more time than I did for research. Get out there and do as much research as you can. Read, ask questions, get a second opinion. It is VERY important to be an advocate for yourself.

    Best of luck to you. Please read, ask questions, keep us updated, and stop by just for moral support - this is a great group!
  • mzaenger
    mzaenger Member Posts: 2
    lisa42 said:

    go consult w/ another surgeon
    HI Martin,

    Sorry to hear of your situation. Personally, I'm stage IV- diagnosed two years ago just after my 41st birthday, but I am doing pretty well. Anyway, I would urge you TODAY to call another hospital or surgery center and ask for a consultation asap- on a quick emergency basis, since your scheduled surgery is coming up in less than a week. If I were you, I would NOT let a general surgeon operate on me to remove the colon. There are surgeons who specialize in colorectal surgery- they do many of the same kinds of surgeries daily. Where do you live?? I don't know the names of smaller centers, but I have heard that Mayo Clinic (I think in Minnesota and possibly another smaller location in Arizona?) is excellent, also MD Anderson in Texas, and Sloan Kettering in New York. I live just north of San Diego, CA. If you live in southern Calif, I'd recommend Dr. Ramamoorthy at UCSD. Further north is Dr. Lenz at USC (Los Angeles). I believe UCSF (San Francisco) is also very good. You ideally want to go a NCI (Nat'l Cancer Institute) comprehensive cancer center where you'll have your oncologist, surgeons, radiologists, etc. all work together as a team. I started out without one and found communication between doctors was a problem (I always had to relay the information, send copies of my scans, etc.)- it was a pain and inefficient. I also know that surgeons that specialize in colon/rectal surgery are more highly trained in the field and the "how to" than general surgeons.
    Hopefully, someone can get you in soon if you call today but, if not and it's a matter of waiting another week or two at the most, I'd postpone your scheduled surgery date until after I was able to get in to see someone else for another opinion. How one surgeon recommends the work to be done, you might get another who will completely agree, or someone else may have a different or even better approach. Sounds like you will need surgery, but perhaps the type of surgery done won't need to be as drastic. Sometimes some of them like to do radiation on the tumors first- this is pretty standard when the tumor is in the rectum, but I've heard some are starting to do radiation first even when it's higher in the colon.

    Do take care- I know things are confusing, but read up on different types of colon/rectal resections on the internet (check the dates and sources of your articles/info carefully- reading outdated info won't be helpful). I'd only read and take seriously info that was written within the past two years- within the last year would even be better.
    Sometimes if you google some of the major hospitals with cancer centers, they'll give info on their website about the types of surgies they offer, you can read the doctors/surgeons, bios, etc. Worth looking into asap!

    Take care,
    Lias

    Thanks everyone
    Lisa, I live in El Cajon Ca.


    Thanks everyone I have a call in for a second opinion, however a close personal friend of the family who was my family Dr since I was a kid agrees with the surgeons opinion, he also treated one of my Grandfathers.
    The surgeon is only guessing that I am a stage 2 currently I have not had any testing done yet besides the colonoscopy/biopsy.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    mzaenger said:

    Thanks everyone
    Lisa, I live in El Cajon Ca.


    Thanks everyone I have a call in for a second opinion, however a close personal friend of the family who was my family Dr since I was a kid agrees with the surgeons opinion, he also treated one of my Grandfathers.
    The surgeon is only guessing that I am a stage 2 currently I have not had any testing done yet besides the colonoscopy/biopsy.

    Sorry - I hate to say this
    Sorry - I hate to say this because I don't want it to come off wrong. I don't mean to be argumentative or negative, but I would NOT put a lot of stock in the opinion of any general practitioner - especially an older one.

    I wouldn't use the primary doctor that treated my grandmother's liver cancer - she died in her 50's. It may have started as colon cancer, but they never caught it till it spread. We don't know. It was many years ago, as was your grandfather's.

    My reasoning: SPECIALISTS deal with this on a daily basis, and a LOT has changed since your grandfather's DX. A LOT! A GP does not have the expertise to deal with this one - there is a reason they refer you out to a GI doctor for a colonoscopy, and a surgeon or oncologist for follow-up.

    I would talk with a specialist - possibly both a surgeon and oncologist, who deal with this day in and day out and know all of the newest options for treatment and prognosis.

    I give this advice after a lifetime of "weird" medical issues. I've learned that a specialist is the best option in almost all cases. If I'd stuck to my usualy policy of going to a specialist and had gone to a GI doctor instead of my primary I would have been Dx'd a year earlier... I've had many fantastic specialists through the years. My primary is a good doctor - but GI issues and cancer are just not his expertise. I want the best. I deserve the best. It is my life on the line.

    It is your life, and your quality of life at stake here too.
  • robinvan
    robinvan Member Posts: 1,012
    Hello Martin
    Sorry to hear about your diagnosis.

    I am another Stage 4 survivor. (Details are on the profile page) You have come to the right place for advice and support. Good luck as you move towards an initial treatment plan.

    Rob; in Vancouver
  • mac1212
    mac1212 Member Posts: 31
    2nd Opinion
    I am sorry to hear about your Dx. I am 39 and was Dx on July 1st. After a rectal ultrasound they staged me before surgery at IIa. I did 5 weeks of radiation and chemo and am scheduled for surgery on the 29th of this month. I have some history in the family but they are not taking out my colon. They will be taking between 6 to 8 inches or so and reconnecting and I will have a temporary loop ileostomy. My surgeon specializes in colorectal surgery. Obviously things could change in the surgery but they are not going in planning on taking it all. Hang in there and let us know how you are doing.

    Brian
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    HI Martin
    HI Martin,

    Welcome to the board, sorry you have to be here. It's good you got things checked out. I don't want to be pushy either but please consider a colon surgeon to do your surgery. It can make a very big difference in your outcome. Someone who does surgery on colons all day, every day knows more and has seen more than someone who operates on an arm, leg, shoulder and every once in awhile a colon. Do not worry about offending doctors, it's your life, it's your colon.
    You have many, many options for colon surgeons in So. Cal. We flew from Hawaii to California for just that reason. My husband doctor was Dr. Philip Fletchner at Cedar Sinai in LA. You have great surgeons available to you, I urge you to use the best.
    Of course, each person has to choose their path. You will decide what is best for you and it will go well.

    Best to you.

    Aloha,
    Kathleen
  • pokismom
    pokismom Member Posts: 153
    Welcome
    Hi Martin,
    Welcome to the board, like the others said this is a good place to come with questions and help. The people have so much insight and info it's incredible! I was dx stage III, had resection and did chemo. Any advise you may need just post it here, we are all here for you!
    Love Donna
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    I second the second opinion
    Hi Martin,

    Stick around and you won't be a newbie for long. Post surgery you will officially be a Semi-colon. So welcome.

    I really hope you seek out a specialist for gastro cancer issues since they are talking about taking out your entire colon. There ain't no puttin' it back in once it's gone.

    Please keep us posted, and when you do have your surgery I hope all goes well.

    peace, emily
  • shrevebud
    shrevebud Member Posts: 105
    Hi Martin:

    Welcome to the forum. There can be a lot of good information out there. I have stage IV colon cancer and have never had surgery since my cancer had already spread. I would be hesitant about having that extensive surgery at stage II. I have a friend and co-worker - she and I were in chemotherapy together and her's was stage III - she had a resection and no bag. I'll hope you'll get a specialist to take a look at you before making drastic decisions. Right now, you've had a lot of news thrown at you. Take care. Roy
  • luv3jay
    luv3jay Member Posts: 533 Member
    Removing the entire colon sounds a bit radical for stage 2. But as it stands, I have stage 4 and had a general sugeon do my low anterior resection and he did a great job. Wouldn't trade him for another. Although I had a hepatic surgeon do the liver resection and a thoracic surgeon do my lung resection! Whew! Anyway, I agree with the others to get a second opinion before such a major surgery. But whatever you decide, we'll be here to support you and care about you. Be blessed!

    -Sheri
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    2bhealed said:

    I second the second opinion
    Hi Martin,

    Stick around and you won't be a newbie for long. Post surgery you will officially be a Semi-colon. So welcome.

    I really hope you seek out a specialist for gastro cancer issues since they are talking about taking out your entire colon. There ain't no puttin' it back in once it's gone.

    Please keep us posted, and when you do have your surgery I hope all goes well.

    peace, emily

    Martin............................
    Second opinions are free....you have 1 life here on earth. Find someone that does this everyday for a living, don't worry about a friends friend or a dr that your 3rd wifes brother in laws 2nd husband knows. Not to say hes not a good General Practicioner, but he is just in fact that, a "general" practicioner. He is not a cancer specialist and we are not talking about a simple surgery to take something out surgically. We are talking about a pre treatment, surgery, then a post operative treatment. The specialist looks to save lives and as much normalcy after the fact that he can. A general practioner hasn't got the credentials to go the long haul for you. Your call though bud and I will respect it either way you choose. Just offering up my opinion , I know you have a lot to fathom right now so don't rush into a decision until you have thought it out completely.......Good Luck and we will be on standby if you need us.......Clift
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Hi
    Wow, I agree that removing the entire colon for Stage 2 sounds a bit dramatic, but then I'm not a doctor. Perhaps a second opinion on that one, though?

    Welcome to the board. I hope we can be of great comfort to you. Let us know about your progress!

    *hugs*
    Gail
  • Patteee
    Patteee Member Posts: 945
    if I could one more time
    if I could one more time Martin-
    just from your brief post and from the little bit my colorectal surgeon told me and my situation-
    I too have a strong family history of colon cancer. I do see where the surgeon told you the recommendation to remove your entire colon based on this, the colorectal surgeon told me the same thing. If my cancer was genetic, she told me, it would be a matter of time before she would have to go back in to remove the rest of the colon. She wanted to delay my surgery until the genetic testing came back. She also said the majority of genetic testing on colon tumors is negative. In addition she said when the genetic testing is positive there is usually always other family history of various other cancers- there was none in mine. My point? What I heard from her was even with a strong family history of colon cancer that she did not suspect any genetic connection with mine. But it was important to know, it would mean the difference between a resection of the colon or removal of the colon.
    Was there something in your grandfather's cc history that would lead a doc to think genetic connection? Yes, removal of the entire colon for suspected cc stage 2 is drastic. It just begs the question of why? If it is due to family history, there are tests that can be done first to determine if there is a genetic basis for it.
    You have 2 docs recommending removal of the colon- I hope you are hearing that a lot of us would be more comfortable with that if it was a colorectal surgeon and if genetic testing pointed that way.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    mzaenger said:

    Thanks everyone
    Lisa, I live in El Cajon Ca.


    Thanks everyone I have a call in for a second opinion, however a close personal friend of the family who was my family Dr since I was a kid agrees with the surgeons opinion, he also treated one of my Grandfathers.
    The surgeon is only guessing that I am a stage 2 currently I have not had any testing done yet besides the colonoscopy/biopsy.

    Maybe lunch sometime
    I see you're in El Cajon. I'm in Murrieta and my doc and chemo is in Escondido. Maybe we could do lunch or something after your surgery? Kind of nice to have somebody near me.

    Brooks