Just found out

JR6020
JR6020 Member Posts: 14
edited March 2014 in Colorectal Cancer #1
Hello
Wish myself and everyone else did not have to be on this site. Just found out Monday, Feb 19 I have rectal cancer. Don't know what stage yet, will find out Monday after ultrasound. Tumor is about 8cm so it's pretty large. Good news I guess is catscan and xray showed all organs to be ok, blood work great. 1 lymph node questionable. So close to rectum, maybe 2cm or so, will probably have to have colostomy though. As long as I'm breathing, guess I can learn to live with that. Then Chemo/radiation and then surgery, thats the surgeons plan anyways. Have not seen oncologist yet. Any thoughts or comments would be helpful. Will know more on Monday. Only 44, but have awsome wife and family/friends that are very supportive. posted this origionally on anal cancer board, they recommended this one. This is all new to me, how was I to know :) Haven't read to many posts, but see there are alot and realize, wow, I'm not the only one out there with this, the feeling I had when I was first told 3 days ago. Wish all nothing but the best to beat this, my buddy said it's all about attitude, I'm beating it!

Joe
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Comments

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    hi
    Welcome to the board, Joe. I'm sorry you have to be here, but you have done yourself a favor by coming. You'll find lots of support here. Everybody feels like the only person in the world going through it at first.

    Please let us know what we can do to help!

    *hugs*
    Gail
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Hi Joe,
    Welcome to the

    Hi Joe,

    Welcome to the board. I think you will find it very useful + comforting. Your buddy is right, attitude plays a big role in this. Take good care!
  • Aud
    Aud Member Posts: 479 Member
    Welcome
    Welcome to the board, Joe. sorry you have to be here too. There are a lot of caring, supportive, and knowledgeable people here. Ask anything, say anything (as long as the Board Police approve). We're here.
    ~Aud
  • pf78248
    pf78248 Member Posts: 209
    Welcome to this board
    Joe,

    I am so sorry you had to join this club, but this is a great group who can help you and your family in so many ways. Right now it is so new and scary and everyone on this board has gone through it as a cancer survivor or caregiver/family member.

    Any questions can be answered here and you will find lots of encouragement and support. My husband David is stage 4 colon cancer and is doing very well. One of the first things we did was order the American Cancer Society's Guide to Colorectal Cancer. It was extremely helpful in understanding the disease, tests, drugs, and terminology, and will help you ask good questions of your health care team. Later we came here, read lots of posts from those who were taking this journey.

    Best of luck and my wish for you is you kick this disease to the curb!

    Priscilla (from San Antonio, currently at M D Anderson Cancer Center in Houston recovering from liver resection)
  • coloCan
    coloCan Member Posts: 1,944 Member
    pf78248 said:

    Welcome to this board
    Joe,

    I am so sorry you had to join this club, but this is a great group who can help you and your family in so many ways. Right now it is so new and scary and everyone on this board has gone through it as a cancer survivor or caregiver/family member.

    Any questions can be answered here and you will find lots of encouragement and support. My husband David is stage 4 colon cancer and is doing very well. One of the first things we did was order the American Cancer Society's Guide to Colorectal Cancer. It was extremely helpful in understanding the disease, tests, drugs, and terminology, and will help you ask good questions of your health care team. Later we came here, read lots of posts from those who were taking this journey.

    Best of luck and my wish for you is you kick this disease to the curb!

    Priscilla (from San Antonio, currently at M D Anderson Cancer Center in Houston recovering from liver resection)

    You;re right Joe, attitude is extremely important,
    Thinking that you ARE going to beat this, despite all you're gonna go thru to do it, is very important; I never had any doubts I'd still be here;also, you CAN live with a bag. I had my colostomy Sept 2, 2009 and it was difficult at first to just look at myself; now, its part of me and keeping me alive and I can do alot of what I did prior to CRC Dx. (Somethings I may never be able to do again but sobeit). People here will gladly help you, as they did me,sharing their experience4s and knowledge to make your journey more bearable. Remember too, you are not alone......Best of results for you,.......steve
  • khl8
    khl8 Member Posts: 807
    Welcome Joe,
    I am so sorry

    Welcome Joe,
    I am so sorry that you had to find us here. I was diagnosed with rectal cancer stage 3, Nov 2008, oral chemo and radiation to shrink the tumor, Awesome suregon was able to save the sphincter muscle during my resection in 02/09(tumor was low enough that this was deceided when he went it) . I did have a temporay illeostomy for 9 months and also had 9 treatments with Folfox. I ended my treatment in 08/09, had my reversal surgery in 09/09,
    port removed 02/10. And it is doable! I worked thorughout all the treatments and yes your friend is correct, it is about the attitude! I was 43 when I was diagnosed.
    YOU CAN DO THIS!
    Kathy
  • geotina
    geotina Member Posts: 2,111 Member
    Joe
    Welcome to the discussion board you never wanted to join. That being said, take a deep breath. The treatment plan you posted seems to be the norm for rectal cancer. My hubby's cancer was different, transverse colon, so no radiation just surgery followed by chemo. The chemo drugs used are generally the same for colon or rectal.

    Any questions about your chemo drugs can be answered here once you find out more. I can tell you that George, who is much older than you, did continue to work throughout treatment. He tolerated the drugs very well but then he did not have the radiation to deal with. George is a Stage IV with metastasis to the liver and lungs and was diagnosed 3/09.

    There are 2 other sites I find very informative, Colon Cancer Alliance and the Colon Club. Check those out if you have not already done so. Costs nothing to join like here.

    There are also lots of experienced people here regarding insurance issues, disability issues and social security issues should you need any information or have questions.

    If you click on our names you can read our stories in this journey.


    Take care - Tina and George
  • Kerry S
    Kerry S Member Posts: 606 Member
    Your buddy is right on the attitude fact
    Joe,
    Your buddy is right on the attitude fact. Stay positive and don’t squander your energies on worry. Spend it all on winning the battle. I was right where you are 2 years back.

    If I understand your post, your tumor is near the end of your rectum. I would ask your doc about transanal surgery to remove it. It has a real quick recovery time. They did that with me and then got the node with chemo/rad. Then we took care of my liver.

    This is a winnable battle. You can do it.
  • zenmonk
    zenmonk Member Posts: 198
    sorry for the news
    I had a very similar diagnosis back in 07. My tumor was about the same location but not as big. You will beat this. I am about your age. Feel free to email me.
  • baldwin
    baldwin Member Posts: 25
    zenmonk said:

    sorry for the news
    I had a very similar diagnosis back in 07. My tumor was about the same location but not as big. You will beat this. I am about your age. Feel free to email me.

    Good Luck with your surgery
    Good Luck with your surgery and know that you are not alone.
  • dschreffler
    dschreffler Member Posts: 58 Member
    Hi Joe,
    I had similar

    Hi Joe,

    I had similar surprise news in January. I'm stage 3 rectal - smaller tumor though - about 3 cm. Ct and other scans show only in rectum with 2 node questionable. Very close proximity to rectum. Blood test - CEA was 7.3 so a little high for the 0-5.o range that is considered normal.

    Positive attitude, and knowing that you make the decisions about your treatment helped me not be a victim of this, but in control of addressing a bad situation.

    Learn as much as you can to ensure your treatment decisions are make on facts and not emotion. My key sources:
    1) http://www.cancer.gov/
    2) American cancer society http://www.cancer.org/

    Watch for the snake oil that the internet has to offer.

    You are going to know so much about your lower digestive tract, cancer staging and treatment options.

    I'm assuming you mean internal ultra sound where they place the probe inside your anus. This will determine how much of the wall of the rectum has been penetrated by tumor. A mildly uncomfortable procedure. Similar to the fingers I'm sure your Dr already has used on you already. I got to see the camera's view of my insides, so I was fascinated despite the equipment up the ol'butt.

    I settled on local treatment for chemo and radiation. Local folk had very good reputation for chemo/radiation, insurance covered, and was only 1 mile from my house. I have pre surgery (neoadjuctive) to shrink the tumor as much as possible before surgery. It was via a clinical trial with 28 radiation and Xeloda treatments (M-f), and 5 session of oxaliplatin via IV - weekly.

    I'm working on where to have the surgery, but have narrowed down to either Hopkins or Sloan based on national ranking, and initial impression from their staff: http://health.usnews.com/best-hospitals/rankings/cancer.

    Given location of my tumor, I want a surgeon who has seen many of these and has the best knowledge, skill, and equipment to lessen complications and get out the cancer.

    Please keep us posted and this forum has great folk to share how they dealt with treatments, etc.
  • JR6020
    JR6020 Member Posts: 14

    Hi Joe,
    I had similar

    Hi Joe,

    I had similar surprise news in January. I'm stage 3 rectal - smaller tumor though - about 3 cm. Ct and other scans show only in rectum with 2 node questionable. Very close proximity to rectum. Blood test - CEA was 7.3 so a little high for the 0-5.o range that is considered normal.

    Positive attitude, and knowing that you make the decisions about your treatment helped me not be a victim of this, but in control of addressing a bad situation.

    Learn as much as you can to ensure your treatment decisions are make on facts and not emotion. My key sources:
    1) http://www.cancer.gov/
    2) American cancer society http://www.cancer.org/

    Watch for the snake oil that the internet has to offer.

    You are going to know so much about your lower digestive tract, cancer staging and treatment options.

    I'm assuming you mean internal ultra sound where they place the probe inside your anus. This will determine how much of the wall of the rectum has been penetrated by tumor. A mildly uncomfortable procedure. Similar to the fingers I'm sure your Dr already has used on you already. I got to see the camera's view of my insides, so I was fascinated despite the equipment up the ol'butt.

    I settled on local treatment for chemo and radiation. Local folk had very good reputation for chemo/radiation, insurance covered, and was only 1 mile from my house. I have pre surgery (neoadjuctive) to shrink the tumor as much as possible before surgery. It was via a clinical trial with 28 radiation and Xeloda treatments (M-f), and 5 session of oxaliplatin via IV - weekly.

    I'm working on where to have the surgery, but have narrowed down to either Hopkins or Sloan based on national ranking, and initial impression from their staff: http://health.usnews.com/best-hospitals/rankings/cancer.

    Given location of my tumor, I want a surgeon who has seen many of these and has the best knowledge, skill, and equipment to lessen complications and get out the cancer.

    Please keep us posted and this forum has great folk to share how they dealt with treatments, etc.

    Thanks
    dschreffler
    Thanks for reply. Yes, probe up butt ultra sound. I'm in southern Indiana, never really thought of going/researching place for surgery. Taking word of referal Gastro Dr. on who to have it done with. Trust him, known for over 20 yrs (wife has Chrohns). I just went cause I thought I had hemorrhoids. BIG shock. Do you have to have permanant colostomy? My tumor is only 2cm from anus, so he said I had to. Honestly, that is the toughest part in my mind anyways. Was hoping for some other way but uneducated on this, no family history, all new to me. I haven't seen radiation Dr. or cancer Dr. so not sure on radiation/chemo except he(surgeon)said have to have it prior to shrink it. Not sure for how long, afraid now, after reading posts will hurt/damage sexual organs/desires/capabilities? Will live with whatever I get and overcome it in time, as long as I get rid of cancer and survive, guess that is my main goal. Just would like to do it and remain as "normal" as possible, don't mean that in a negative or bad way to anyone who has this.
  • abrub
    abrub Member Posts: 2,174 Member
    JR6020 said:

    Thanks
    dschreffler
    Thanks for reply. Yes, probe up butt ultra sound. I'm in southern Indiana, never really thought of going/researching place for surgery. Taking word of referal Gastro Dr. on who to have it done with. Trust him, known for over 20 yrs (wife has Chrohns). I just went cause I thought I had hemorrhoids. BIG shock. Do you have to have permanant colostomy? My tumor is only 2cm from anus, so he said I had to. Honestly, that is the toughest part in my mind anyways. Was hoping for some other way but uneducated on this, no family history, all new to me. I haven't seen radiation Dr. or cancer Dr. so not sure on radiation/chemo except he(surgeon)said have to have it prior to shrink it. Not sure for how long, afraid now, after reading posts will hurt/damage sexual organs/desires/capabilities? Will live with whatever I get and overcome it in time, as long as I get rid of cancer and survive, guess that is my main goal. Just would like to do it and remain as "normal" as possible, don't mean that in a negative or bad way to anyone who has this.

    Surgery
    You really want to be sure you get the best surgeon possible. I know that my dr at MSK does whatever he can to avoid colostomy. Your tumor may be such that there is no option, but I would check with an expert to find out if there are other options.

    My cancer is appendiceal, and I had a double resection: left hemicolectomy (included cecum, and was reattached at the small intestine) and another section of my colon was removed as well - no ostomy, but if my dr had removed the whole stretch rather than 2 segments of my colon, I'd probably be a bag lady, too.

    Lots of good advice and good support here. There's also a Rare Cancers forum for Anal/rectal Cancer that has lots of people with lots of experiences (google "rare cancers forum"). I'm part of their appendix cancer forum.

    Good luck to you. It won't be easy, but it is doable. The time will come when you look back on treatment, reassess your life, and understand that you can go on.
  • khl8
    khl8 Member Posts: 807
    JR6020 said:

    Thanks
    dschreffler
    Thanks for reply. Yes, probe up butt ultra sound. I'm in southern Indiana, never really thought of going/researching place for surgery. Taking word of referal Gastro Dr. on who to have it done with. Trust him, known for over 20 yrs (wife has Chrohns). I just went cause I thought I had hemorrhoids. BIG shock. Do you have to have permanant colostomy? My tumor is only 2cm from anus, so he said I had to. Honestly, that is the toughest part in my mind anyways. Was hoping for some other way but uneducated on this, no family history, all new to me. I haven't seen radiation Dr. or cancer Dr. so not sure on radiation/chemo except he(surgeon)said have to have it prior to shrink it. Not sure for how long, afraid now, after reading posts will hurt/damage sexual organs/desires/capabilities? Will live with whatever I get and overcome it in time, as long as I get rid of cancer and survive, guess that is my main goal. Just would like to do it and remain as "normal" as possible, don't mean that in a negative or bad way to anyone who has this.

    It can't hurt to get another
    It can't hurt to get another opinion on the colostomy. Once it is done you cannot change it. Maybe another doc can try and save the sphincter. Just a thought.
    Kathy
  • JR6020
    JR6020 Member Posts: 14
    khl8 said:

    It can't hurt to get another
    It can't hurt to get another opinion on the colostomy. Once it is done you cannot change it. Maybe another doc can try and save the sphincter. Just a thought.
    Kathy

    Time
    Worried about time. In my mind it's growing by the min and I need to get it out asap crazy I know again uneducated about cancer
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    JR6020 said:

    Time
    Worried about time. In my mind it's growing by the min and I need to get it out asap crazy I know again uneducated about cancer

    Mine was exactly as yours is........
    I can tell you what to expect, the highs and lows, and what the colostomy entails, mentally and physically, routes and paths you take during treatment, and how after your treatment and surgery and almost to the week 1 year of running and gunning you will look back and welcome life as it is and realize that you , along with your attitude and help of your "caregiver" learn a new reasoning for the term " living life to the fullest"...You will be fine, it will be a battle of small victories celebrated but the battle will be won. Positive attitude is a must...the mental side will attack in every direction, but you must be strong willed and minded and keep the light at the end of the tunnel in sight....It won't be a train although sometimes it will seem like it.......I'll help you through as well as all the others. I went through just about the exact same thing as you are about to...and if you are looking for a second opinion you might try Vanderbilt-Ingram Cancer Center in Nashville......Love and Hope, Buzz
  • idas_nick
    idas_nick Member Posts: 2
    The Place to Be (Unfortunately)
    Joe, sorry to see you here. My wife Ida was diagnosed over a year ago. Since then,his group has been a remarkable resource for her with information about treatments, symptoms, side effects and more. You did the right thing to join up (I _finally_ opened my own account today). Ida has repeatedly told me that she didn't know where she'd be without the support of "SemiColon".

    You're going to beat this!

    -Nick
  • JR6020
    JR6020 Member Posts: 14
    idas_nick said:

    The Place to Be (Unfortunately)
    Joe, sorry to see you here. My wife Ida was diagnosed over a year ago. Since then,his group has been a remarkable resource for her with information about treatments, symptoms, side effects and more. You did the right thing to join up (I _finally_ opened my own account today). Ida has repeatedly told me that she didn't know where she'd be without the support of "SemiColon".

    You're going to beat this!

    -Nick

    Thanks
    Thanks Nick and Buzz and everyone else foe inputs. My wife has crohns and after her last surgery she got on a posting place similar to this only with other crohns patients. Honest thought it was kind of silly at the time. Now I could kick myself in the **** for thinking that. Don't even know you all and feel like we've been friends forever, the connection I guess all fighting for the same thing...life. Something I've been taking for granted. Still have a thousand ?'s, bought a journal to write down thoughts, event etc throughout not wired idea is it? Bad memory, think I already said that....can't remember :) came up with plan on way home from work. My youngest son just turned sixteen not to long ago. Told him he could buy car when he got a job well he got job so now I'm going to buy it for him but the catch is he has to pay me back ten dollars a month for 180 months (15 years) that will put me at sixty and everyone knows I'm a tight **** and won't go anywhere if someone owes me $$ :) getting it in writing too!!
  • khl8
    khl8 Member Posts: 807
    JR6020 said:

    Thanks
    Thanks Nick and Buzz and everyone else foe inputs. My wife has crohns and after her last surgery she got on a posting place similar to this only with other crohns patients. Honest thought it was kind of silly at the time. Now I could kick myself in the **** for thinking that. Don't even know you all and feel like we've been friends forever, the connection I guess all fighting for the same thing...life. Something I've been taking for granted. Still have a thousand ?'s, bought a journal to write down thoughts, event etc throughout not wired idea is it? Bad memory, think I already said that....can't remember :) came up with plan on way home from work. My youngest son just turned sixteen not to long ago. Told him he could buy car when he got a job well he got job so now I'm going to buy it for him but the catch is he has to pay me back ten dollars a month for 180 months (15 years) that will put me at sixty and everyone knows I'm a tight **** and won't go anywhere if someone owes me $$ :) getting it in writing too!!

    I like your car idea, sounds
    I like your car idea, sounds a bit like and insurance policy to me! LOL
    I understand what you mean about this board, I did not find these wonderful people until my treatment was just about over. I wish I would have had them form the beginning as everyone here has been fantastic. If you are happy they smile with you, if you are sad they shed a tear, you want to vent they let you. And when you start acting like a jerk, they will let you know.
    As for questions? we got a whole lot of answers!
    Kathy
  • dschreffler
    dschreffler Member Posts: 58 Member
    JR6020 said:

    Thanks
    dschreffler
    Thanks for reply. Yes, probe up butt ultra sound. I'm in southern Indiana, never really thought of going/researching place for surgery. Taking word of referal Gastro Dr. on who to have it done with. Trust him, known for over 20 yrs (wife has Chrohns). I just went cause I thought I had hemorrhoids. BIG shock. Do you have to have permanant colostomy? My tumor is only 2cm from anus, so he said I had to. Honestly, that is the toughest part in my mind anyways. Was hoping for some other way but uneducated on this, no family history, all new to me. I haven't seen radiation Dr. or cancer Dr. so not sure on radiation/chemo except he(surgeon)said have to have it prior to shrink it. Not sure for how long, afraid now, after reading posts will hurt/damage sexual organs/desires/capabilities? Will live with whatever I get and overcome it in time, as long as I get rid of cancer and survive, guess that is my main goal. Just would like to do it and remain as "normal" as possible, don't mean that in a negative or bad way to anyone who has this.

    My tumor is < 2cm also. I'm
    My tumor is < 2cm also. I'm getting a 3rd opinion as my prior 2 are night and day apart... one says permanent colostomy and the other says it will depend upon how tumor reacted to the chemo and radiation and may not even need surgery. So off to Sloan for another perspective.

    I recommend understand the options before hand - get a few opinions. Each of the surgeons I have met with have come highly recommended, but they each have a different approach. My perspective is this is my choice based on data.

    My main goal is remove cancer, less complications/risks to other areas. Hence I'm concerned about temp colostomy and then the additional surgery with a reversal. Does it really get all the cancer and what are odds for cuasing more issues. I'm carefully wieghing these now before surgery. i value an active and control about bowels and can live with a bags if more control, less complications.

    Based on that Hopkin's recommends permanent. However, my local guy says restage in a couple weeks since I just ended chemo/rad and then see what is conservative approach to see if can avoid colostomy.

    I found data to back up his claim to restage and 2 cm rule may no longer apply:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1356985/
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1409892/

    My other options (see bottom of web page for rectal cancer):
    http://www.hopkinscoloncancercenter.org/CMS/CMS_Page.aspx?CurrentUDV=59&CMS_Page_ID=3ADE123E-CBF3-44ED-9122-5303AF76A32C

    Neoadjunctive chemo.rad (pre surgery) recommended to potentially "downstge" the tumor - shrink and provide more surgical options, and reduce reoccurrence.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1421320/

    Knowledge is power.. you are in control of this! The medical staff works for you, not the other way around.

    Hope this helps.