New Member and scared

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judman92
judman92 Member Posts: 31
I am only 36 yrs old and I just got diagnosed with Stage 3 colon cancer on June 2nd of this year. I had a colon resection which we thought was successful. I just recently went to my oncologist and my cancer marker was very high. The doctor was concerned that my cancer had spread. I had a PET scan and it has spread to my liver. Unfortunately, it did not spread into one area so taking part of the liver out is not an option. To say that I am shocked and scared to death is an understatement. I have a great support group of family and friends and they are helping me tremendously. My doctor is going to get me into a test group that is in Phase 2 and is already seeing some results. I am starting chemo in a couple of weeks and I am also nervous about the side effects of that. They have explained the possible side effects to me but then they say everyone is different. I am hopeful that this course of treatment will work for me and I really need as much support and encouragement as I can possibly get.
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Comments

  • John23
    John23 Member Posts: 2,122 Member
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    judman92 -
    First thing, stop with the fear.

    Next thing, stop with the $%^&&# fear.

    Cancer grows fairly slow; there's usually no "race against time".

    Take the time you have now, to get another opinion from
    another qualified colorectal surgeon that is not of the same
    group or organization as your present colorectal surgeon.

    I'm assuming you have a colorectal surgeon... You do, right?

    And you'll want to have a second opinion from a different
    oncologist, and again.... one that's not of the same group
    or organization.

    There seems to be some sort of a rush to get you into some
    "trial". Why? You haven't even started any serious treatment
    yet, and certainly not have tried treatments and have had them
    all fail, leaving you no recourse other than to be a guinea pig
    for the cancer indu$try.

    Take your time and relax. You have cancer; big deal. We all
    have cancer here, some have, some "had", but we're all here
    for the same reason. Shed the fear and allow your own instincts
    for survival take over. There are plenty of treatments available,
    chemo, radiation, ablation, and alternative medicine. There's
    more options to various treatments than your Oncologist is
    telling you. You need to have other professional opinions!

    You are right to question "side effects", since they can often
    last longer than the cancer and be more debilitating.

    You'll do just fine; just lose the fear of cancer and use your
    instincts and intelligence to provide direction.

    You -will- do fine!

    My best wishes,

    John
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry
    Sorry you had to join our group but you have come to the right place. We are here to help you get through this rollercoaster of cancer diagnosis. I'm with John on getting another opinion and why a trial drug now. Usually those are left as a last option. Whatever doctor you decide on make sure you are comfortable with him/her. Also, you should always take someone with you to appointments just to make sure you hear all the information correctly. Sometimes you will be so nervous that you don't always hear what you need to and always right down questions before going as you will most likely forget most of them when you get there. If you need any questions answered, we will do our best to help through our experiences. Please post and let us know how you are doing. Welcome to the group.

    Kim
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    Judman
    Judman,

    I can relate to how you're feeling. I was 39 when I was diagnosed and it was terrifying. I was diagnosed with liver mets at the start so it's a bit different than your experience. But I was about to go to bed tonight when I read your post and I couldn't go to sleep until I posted.

    First, I am a bit curious as to your initial staging. Did you have a scan prior to surgery? It's a bit confusing as you wrote you have multiple areas of the liver lighting up but they weren't there 6 weeks ago?

    In any case, I would advise you to get a second opinion. I haven't heard of anyone being told to get into a Phase 2 trial (or 1 or 3 for that matter) before he/she has even had chemotherapy. There is no way to know now how you will respond to different regimens but there are a couple of different treatments that would be tried before moving to a trial. Trials even have the requirement that standard protocols have failed in order to allow a person into the trial. So your doctor's comment is confusing.

    Second, I don't understand a doctor saying the cancer has spread to multiple liver areas and therefore surgery is not an option. The mets may be in a bad location and that could prohibit resection. That's understandable. But having a few mets in different locations doesn't preclude surgery. It didn't for me. I had 5 mets (3 in left, 1 in right, 1 in middle) and all 5 were removed during my surgery. If you were definitely told surgery is not an option because of multiple spots (and not because spots were by arteries, etc), then get a second opinion and make sure the opinion is from a hepatabiliary surgeon. You may still do chemo first. Sometimes it's a good idea to do that as you can see from the tumor response whether the chemo is working. I also did that (chemo for 4 rounds and then surgery).

    Third, don't start worrying yourself over the chemo. No lie, chemo is not a walk in the park but I had very few side effects and tolerated it very well. Others have more profound side effects. You don't know how you will do but worrying about it now will not change the outcome of how you do with it. My attitude on my first infusion was "let's get it on." The best thing you can do is prepare for possible side effects and if they happen, let your doctor know so you can have pre-meds and/or dosage adjustments.

    Finally, John23 here is a resident alternative medicine and has lots of good ideas on natural ways to help your body with supplements. My advice would be to research lots on that topic as well and never be afraid of asking questions. We are here for you.

    Amy
  • buckeye2
    buckeye2 Member Posts: 428 Member
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    Me Too
    I read your post and am posting my first post. My husband was diagnosed with Stage IV colon cancer about 8 weeks ago. There is a mass outside the colon and two spots on the liver, only one believed to be cancer. This week his oncologist said he might be on chemo the rest of his life and he didn't think surgery would ever be an option. My husband has been very depressed since and I feel so helpless. The posts of this website are helping me.
  • buckeye2
    buckeye2 Member Posts: 428 Member
    Options
    John23 said:

    judman92 -
    First thing, stop with the fear.

    Next thing, stop with the $%^&&# fear.

    Cancer grows fairly slow; there's usually no "race against time".

    Take the time you have now, to get another opinion from
    another qualified colorectal surgeon that is not of the same
    group or organization as your present colorectal surgeon.

    I'm assuming you have a colorectal surgeon... You do, right?

    And you'll want to have a second opinion from a different
    oncologist, and again.... one that's not of the same group
    or organization.

    There seems to be some sort of a rush to get you into some
    "trial". Why? You haven't even started any serious treatment
    yet, and certainly not have tried treatments and have had them
    all fail, leaving you no recourse other than to be a guinea pig
    for the cancer indu$try.

    Take your time and relax. You have cancer; big deal. We all
    have cancer here, some have, some "had", but we're all here
    for the same reason. Shed the fear and allow your own instincts
    for survival take over. There are plenty of treatments available,
    chemo, radiation, ablation, and alternative medicine. There's
    more options to various treatments than your Oncologist is
    telling you. You need to have other professional opinions!

    You are right to question "side effects", since they can often
    last longer than the cancer and be more debilitating.

    You'll do just fine; just lose the fear of cancer and use your
    instincts and intelligence to provide direction.

    You -will- do fine!

    My best wishes,

    John

    Great Attitude
    I love your attitude.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    buckeye2 said:

    Me Too
    I read your post and am posting my first post. My husband was diagnosed with Stage IV colon cancer about 8 weeks ago. There is a mass outside the colon and two spots on the liver, only one believed to be cancer. This week his oncologist said he might be on chemo the rest of his life and he didn't think surgery would ever be an option. My husband has been very depressed since and I feel so helpless. The posts of this website are helping me.

    Look at it this way.........
    If there was one man on this earth most likely he would be wore out by now......If there was one woman on this earth most likely she would be bossing all the men around by now...kidding...but what I am getting at is this...there are many many many great surgeons, hospitals, clinics, Oncologists, and survivors that were in the same shoes as the 2 of you. Do Not sit back and let one individual make life decisions for you...You will be your own defense mechanism against your cancer. They will recommend treatments to you or other avenues to go but do not think for one minute that anyone has cornered the market on whether or not your options are limited. Oh contraire...your options are limitless...as long as you become proactive in your own knowledge base and be courteous but vigilant in your options for treatment...Make some calls to other hospitals ie. Vanderbilt,MD Anderson, Sloan Kettering etc....do not limit your ability to make major advancements to help yourself get back into the life you lived before cancer. There are so many new things out there...go find one that fits you.......buzz
  • eightpawz
    eightpawz Member Posts: 28
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    buckeye2 said:

    Me Too
    I read your post and am posting my first post. My husband was diagnosed with Stage IV colon cancer about 8 weeks ago. There is a mass outside the colon and two spots on the liver, only one believed to be cancer. This week his oncologist said he might be on chemo the rest of his life and he didn't think surgery would ever be an option. My husband has been very depressed since and I feel so helpless. The posts of this website are helping me.

    chemo for life
    I'm sorry your husband is feeling down, I get it. I was dx Stage IV in September, and I have a 2 year old daughter. My liver was 75% full of tumors when I started chemo, they were surprised I had no pain or jaundice. I had a scan on Monday, a number of the smaller tumors have drastically shrunk or are gone, and the biggest one has shrunk 60% in size. They don't even look at the primary tumor anymore, can't find it. At this time they're saying I'm a chemo for life as well, but that's today. They said moving forward if the tumors stablize, maybe it could become maintenance, once per month. I think of like have a chronic illness, like diabetes.

    I fight for my daugther. She's my moon, sun and sky. Last night we went to a local fair and jumped in a bounce house together for an hour. Not sure who was more tired, me or her.

    -Dawn
  • eightpawz
    eightpawz Member Posts: 28
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    don't fear chemo
    Chemo may not be the perfect solution, but they have to tell you about the side-effects. I've had 9 cycles (27 sessions) of chemo and have barely any side-effects. They'll talk to you about the neuropath problems (tingling in the hands and feet). Mine is barely there. Haven't lost any hair, sometimes get a little sour feeling but nothing that keeps me down. I find that better eating helps with that. Don't wait for the side-effects, they might not show up.

    It's okay to fear it (cancer), we all have, but put on your boxing gloves, step to the center of the ring and swing. It's time to fight. But remember, you're not alone, turn around, you've got a large corner team to help.

    -Dawn
  • Connie43
    Connie43 Member Posts: 44
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    scared
    I am much older than you and I too was scared when the dr. told me I had colon cancer, and he had me scheduled for surgery the next day. My side effects from the chemo have been minimal. The people here have been through this and have given me much strength.
  • MelodieH
    MelodieH Member Posts: 6
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    I'm with you
    I too have been recently diagnosed. Will start chemo in about 3 weeks. I'm 53 years old. My thoughts are with you and I hope that through this message board I will be able to keep in touch with you and your progress.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Welcome
    Hi! Welcome to the group. I'm so sorry about your diagnosis, and I do understand your fear. Once you get some other opinions and have time to really formulate a plan, I think you'll feel better. It sounds like you have a great support system!

    *hugs*
    Gail
  • luvmum
    luvmum Member Posts: 457 Member
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    I am sorry
    I am a caregiver to my mum. Although I am not a patient, I can totally understand how you scared you are. I hope you can stay strong and be positive.

    Take good care.
    Dora
  • fatmomma
    fatmomma Member Posts: 95
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    luvmum said:

    I am sorry
    I am a caregiver to my mum. Although I am not a patient, I can totally understand how you scared you are. I hope you can stay strong and be positive.

    Take good care.
    Dora

    Sorry
    Welcome to the group. This is a great support group. Even thought I'm not the one with cancer (my mother is) I learn more from this site than I do with doctors. Stay strong and have a positive attitude. Will be praying for you.
    FM
  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    buckeye2 said:

    Me Too
    I read your post and am posting my first post. My husband was diagnosed with Stage IV colon cancer about 8 weeks ago. There is a mass outside the colon and two spots on the liver, only one believed to be cancer. This week his oncologist said he might be on chemo the rest of his life and he didn't think surgery would ever be an option. My husband has been very depressed since and I feel so helpless. The posts of this website are helping me.

    Hello Buckeye2
    I'm assuming from Ohio? I used to live in Springfield for about 20 years.
    My onc told me chemo for rest of life (and my life wasn't supposed to be long). But here I am over a year later, had the surgeries they said I wouldn't have (colon, liver and ureter resections)tumors gone, just had my last chemos last Friday. Tell your hubby don't give up hope, I did for awhile myself, then got busy fighting for every minute of my life, and you know, maybe another piece of cancer will come back alive, maybe there's little cancer babies (LOL, have to have a bit of humor) hanging around in me, but what the heck, I'm not living in that depression (it lasted a while then would go away and then be back) any more, I'm busy enjoying myself. They didn't tell me "they didn't think surgery would ever be an option", they told me it "NEVER" would be an option, goes to show you what the oncs know.
    Thinking of you both.
    Winter Marie
  • buckeye2
    buckeye2 Member Posts: 428 Member
    Options
    Buzzard said:

    Look at it this way.........
    If there was one man on this earth most likely he would be wore out by now......If there was one woman on this earth most likely she would be bossing all the men around by now...kidding...but what I am getting at is this...there are many many many great surgeons, hospitals, clinics, Oncologists, and survivors that were in the same shoes as the 2 of you. Do Not sit back and let one individual make life decisions for you...You will be your own defense mechanism against your cancer. They will recommend treatments to you or other avenues to go but do not think for one minute that anyone has cornered the market on whether or not your options are limited. Oh contraire...your options are limitless...as long as you become proactive in your own knowledge base and be courteous but vigilant in your options for treatment...Make some calls to other hospitals ie. Vanderbilt,MD Anderson, Sloan Kettering etc....do not limit your ability to make major advancements to help yourself get back into the life you lived before cancer. There are so many new things out there...go find one that fits you.......buzz

    Thanks
    Thanks Buzzard. I guess it's time for us to quit feeling sorry for ourselves and put on our "big boy pants". This site is going to provide me so much comfort and I will share what I learn with me husband. Our situation is somewhat unique in that I was diagnosed with breast cancer six days prior to my husbands diagnosis. Mine was luckily in Stage I so only need radiation which begins this week. These diagnosis happened two weeks prior to our first daughters graduation from high school so instead of the planned $100 gift we were going to give her she got a convertible. She says cancer has made us better gift givers.
  • buckeye2
    buckeye2 Member Posts: 428 Member
    Options
    Buzzard said:

    Look at it this way.........
    If there was one man on this earth most likely he would be wore out by now......If there was one woman on this earth most likely she would be bossing all the men around by now...kidding...but what I am getting at is this...there are many many many great surgeons, hospitals, clinics, Oncologists, and survivors that were in the same shoes as the 2 of you. Do Not sit back and let one individual make life decisions for you...You will be your own defense mechanism against your cancer. They will recommend treatments to you or other avenues to go but do not think for one minute that anyone has cornered the market on whether or not your options are limited. Oh contraire...your options are limitless...as long as you become proactive in your own knowledge base and be courteous but vigilant in your options for treatment...Make some calls to other hospitals ie. Vanderbilt,MD Anderson, Sloan Kettering etc....do not limit your ability to make major advancements to help yourself get back into the life you lived before cancer. There are so many new things out there...go find one that fits you.......buzz

    Thanks
    Thanks Buzzard. I guess it's time for us to quit feeling sorry for ourselves and put on our "big boy pants". This site is going to provide me so much comfort and I will share what I learn with me husband. Our situation is somewhat unique in that I was diagnosed with breast cancer six days prior to my husbands diagnosis. Mine was luckily in Stage I so only need radiation which begins this week. These diagnosis happened two weeks prior to our first daughters graduation from high school so instead of the planned $100 gift we were going to give her she got a convertible. She says cancer has made us better gift givers.
  • buckeye2
    buckeye2 Member Posts: 428 Member
    Options
    Buzzard said:

    Look at it this way.........
    If there was one man on this earth most likely he would be wore out by now......If there was one woman on this earth most likely she would be bossing all the men around by now...kidding...but what I am getting at is this...there are many many many great surgeons, hospitals, clinics, Oncologists, and survivors that were in the same shoes as the 2 of you. Do Not sit back and let one individual make life decisions for you...You will be your own defense mechanism against your cancer. They will recommend treatments to you or other avenues to go but do not think for one minute that anyone has cornered the market on whether or not your options are limited. Oh contraire...your options are limitless...as long as you become proactive in your own knowledge base and be courteous but vigilant in your options for treatment...Make some calls to other hospitals ie. Vanderbilt,MD Anderson, Sloan Kettering etc....do not limit your ability to make major advancements to help yourself get back into the life you lived before cancer. There are so many new things out there...go find one that fits you.......buzz

    Thanks
    Thanks Buzzard. I guess it's time for us to quit feeling sorry for ourselves and put on our "big boy pants". This site is going to provide me so much comfort and I will share what I learn with me husband. Our situation is somewhat unique in that I was diagnosed with breast cancer six days prior to my husbands diagnosis. Mine was luckily in Stage I so only need radiation which begins this week. These diagnosis happened two weeks prior to our first daughters graduation from high school so instead of the planned $100 gift we were going to give her she got a convertible. She says cancer has made us better gift givers.
  • buckeye2
    buckeye2 Member Posts: 428 Member
    Options
    eightpawz said:

    chemo for life
    I'm sorry your husband is feeling down, I get it. I was dx Stage IV in September, and I have a 2 year old daughter. My liver was 75% full of tumors when I started chemo, they were surprised I had no pain or jaundice. I had a scan on Monday, a number of the smaller tumors have drastically shrunk or are gone, and the biggest one has shrunk 60% in size. They don't even look at the primary tumor anymore, can't find it. At this time they're saying I'm a chemo for life as well, but that's today. They said moving forward if the tumors stablize, maybe it could become maintenance, once per month. I think of like have a chronic illness, like diabetes.

    I fight for my daugther. She's my moon, sun and sky. Last night we went to a local fair and jumped in a bounce house together for an hour. Not sure who was more tired, me or her.

    -Dawn

    Thanks for sharing
    Dawn, thanks for sharing your journey to encourage us to find the strength to fight ours. Our youngest daughter is twelve and she thinks her dad walks on water.my hope is that you will be there to pick out your daughters prom dress because if left up to her dad she most likely will be wearing a Burka. My husband has to be around to complete the raising of our youngest daughter because he created this monster, he is sticking around to deal with it. Hope you wore a good bra for that hour long bouncing session. Have a great day!!!!
  • buckeye2
    buckeye2 Member Posts: 428 Member
    Options

    Hello Buckeye2
    I'm assuming from Ohio? I used to live in Springfield for about 20 years.
    My onc told me chemo for rest of life (and my life wasn't supposed to be long). But here I am over a year later, had the surgeries they said I wouldn't have (colon, liver and ureter resections)tumors gone, just had my last chemos last Friday. Tell your hubby don't give up hope, I did for awhile myself, then got busy fighting for every minute of my life, and you know, maybe another piece of cancer will come back alive, maybe there's little cancer babies (LOL, have to have a bit of humor) hanging around in me, but what the heck, I'm not living in that depression (it lasted a while then would go away and then be back) any more, I'm busy enjoying myself. They didn't tell me "they didn't think surgery would ever be an option", they told me it "NEVER" would be an option, goes to show you what the oncs know.
    Thinking of you both.
    Winter Marie

    Winter Marie, thanks fro
    Winter Marie, thanks fro sharing. It gives me hope. My husband is sleeping but I want to go in and wake him up just to share it. I never realized how precious the gift of hope is. Hopefully I can "play it forward" some day. We are from Ohio. We live in a small town on the western border.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Hi Judman
    Sorry to hear of your diagnosis. It certainly is scary at first, then one often gets used to it. You can't let fear overtake you because it becomes easy to make poor decisions.

    It is VERY often a good idea to get a second opinion on things to see all of the options that are out there for you. The majority of the members here have done mainstream treatments with great success, others have done surgery then gone TCM (traditional chinese medicine) or juicing/dietary changes and have had great success. It's also possible to do either of those protocols and not have great success. That's the thing with cancer, one size does not fit all. What may kill one person may save another's life.

    I was DX with stage IV over 7 years ago, did chemo then surgery. Then more chemo and another surgery, repeat a few more times...and here I am. My liver was not operable at the time but going on Avastin for about 6 months made be operable by shrinking the tumors. It's seems VERY early to try to determine if your liver is operable to me. I also would investigate what options you have prior to doing a phase II clinical trial. It just seems so premature given the information that you've provided. Actually, if you could give more details we might be able to offer more suggestions. Did they mention Avastin, Erbitux, FOLFOX?

    You are right, side effects vary from person to person. One thing that I believe is that where you're treated and what you do first makes a HUGE difference in your outcome. It's hard to un-do something that someone screwed up. Given the chance to go back in time, I would do the same treatment that I've done. I have no regrets.
    All the best Judman
    -phil