Just diagnosed...

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Been reading this site posts for a week now and decided to join.  I am in the swirl of having the eus toomorrow and getting staged and am terrified.  Trying to stay even through this.   I have a 16 year old daughter.  I was told that after a hospital  visit last month, which at the time they thought my appendix may have ruptured or diverticulitis, now was possibly the rupture of my colon where the cancer is.  It is 3 cm.  So i may have cancer all over mynperitoneum.  My heart is constantly racing...i am trying to be strong for my daughter and husband...i feel terrible that this is causing so much pain.  

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  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    *Deep breath*

    The initial diagnosis, those first weeks, months even, are the worst.  No matter how many people tell you that we can now 'cure' cancer, your head tells you different. All of your worst fears are foremost in your mind. 

    You have to allow yourself a time of mourning. Not for the loss of life, but for the loss of life as you know it now. 

    I can tell you that once you are told what your treatment plan is going to be, and once you start, things get dramaticlly better. Knowing that you are 'doing' something to kill the Cancer, changes your mindset.

    After I started chemo, my mind was racing so bad I honestly thought my head was going to explode. That is when I found meditation. I started with guided imagery. Listening to a CD when I went to bed. I slept like a dream for the first time since diagnosis. It worked for me, and may work for you, if you want to give it a go. Thing is, you need to find something that works for you. 

    I had a notebook. Well, I had two. One I filled with every question, everything I was feeling emotionally and physically, and I took that to every appointment I had with my Oncologist, and made sure I went though all of it with him; writing down his answers so that I could remember them when I got home. The other notebook was a pretty little thing that I used as a journal. 

    So I welcome you to the forum, Mary. You will love it here; so much information for those who are travelling the same road either as the patient or the caregiver. 

    Ask anything you want.

    Sue - Trubrit

  • Mary1864
    Mary1864 Member Posts: 39
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    Trubrit said:

    *Deep breath*

    The initial diagnosis, those first weeks, months even, are the worst.  No matter how many people tell you that we can now 'cure' cancer, your head tells you different. All of your worst fears are foremost in your mind. 

    You have to allow yourself a time of mourning. Not for the loss of life, but for the loss of life as you know it now. 

    I can tell you that once you are told what your treatment plan is going to be, and once you start, things get dramaticlly better. Knowing that you are 'doing' something to kill the Cancer, changes your mindset.

    After I started chemo, my mind was racing so bad I honestly thought my head was going to explode. That is when I found meditation. I started with guided imagery. Listening to a CD when I went to bed. I slept like a dream for the first time since diagnosis. It worked for me, and may work for you, if you want to give it a go. Thing is, you need to find something that works for you. 

    I had a notebook. Well, I had two. One I filled with every question, everything I was feeling emotionally and physically, and I took that to every appointment I had with my Oncologist, and made sure I went though all of it with him; writing down his answers so that I could remember them when I got home. The other notebook was a pretty little thing that I used as a journal. 

    So I welcome you to the forum, Mary. You will love it here; so much information for those who are travelling the same road either as the patient or the caregiver. 

    Ask anything you want.

    Sue - Trubrit

    Thank you Sue.  Your words to

    Thank you Sue.  Your words to so many here on this site are kind and full of wisdom.  

    I have mentally been from one extreme to the other.  I should clean out my closets and prepare to not make it through this....maybe i will be given the blessing of seeing my daughter graduate high school.  All of these racings thoughts are awful to say out loud to my husband and mom.  I am just trying to go day by day for now....

  • Semira
    Semira Member Posts: 381 Member
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    one day at a time...

    ... one step at a time.

    How I remember this blur of thoughts and panic back in Nov 2011 when my husband was diagnosed with stage IV (mets to liver). Don't forget to breathe and take one step afte the other. Glad you found this great grop with so many great people full of wisdom. You will find much input and support here!

    A big hug from Germany
    Petra

  • NewHere
    NewHere Member Posts: 1,427 Member
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    I Am There With You

    I was diagnosed a month ago (actual biopsy confirming things less than 3 weeks ago), and it has been a whirlwind including having surgery last week to remove a portion of my colon and reroute things.

    Currently I am waiting for the official staging (it is III but unsure of which one) and meeting with the Doctor next week to start discussing chemo plan.

    The people here have been amazing in support.  And so far the reality of things, such as the discomfort from the surgery, has been less than I anticipated - meaning my fear and stress of what would happen was way more than actually what has happened.  It is difficult not to get wound up when something like this is dropped in your lap, but the times where I am able not to think about it as much or not worry as much have been helpful.  And speaking with people here about thoughts and concerns has helped in being prepared for what is next, the advice alone about being prepared to walk after surgery as soon as possible really got me going in the right path when I was out of surgery.

    Wishing you the best and speedy recovery.

  • Mary1864
    Mary1864 Member Posts: 39
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    NewHere said:

    I Am There With You

    I was diagnosed a month ago (actual biopsy confirming things less than 3 weeks ago), and it has been a whirlwind including having surgery last week to remove a portion of my colon and reroute things.

    Currently I am waiting for the official staging (it is III but unsure of which one) and meeting with the Doctor next week to start discussing chemo plan.

    The people here have been amazing in support.  And so far the reality of things, such as the discomfort from the surgery, has been less than I anticipated - meaning my fear and stress of what would happen was way more than actually what has happened.  It is difficult not to get wound up when something like this is dropped in your lap, but the times where I am able not to think about it as much or not worry as much have been helpful.  And speaking with people here about thoughts and concerns has helped in being prepared for what is next, the advice alone about being prepared to walk after surgery as soon as possible really got me going in the right path when I was out of surgery.

    Wishing you the best and speedy recovery.

    Thank you

    I am scheduled tomorrow for an ultrasound (eus) which they me will begin staging the cancer, along with a cat chest on friday.  Did you feel like you just jumped on this train that is going 100 miles an hour?  I just feel like i am so worked up all the time and am truingnto be normal for my family.  

    I was told that chemo is likely to come first...but still uncertain...of everything for that matter.

    I read many posts for about a week and didnt think i would join.  Just be a passive member....but i feel like i need to talk about this scary and overwhelming disease without feeling guilty or hesitant.  And i do agree..everyone hear is so supportive.

    Are you home now?   Very glad to hear that you felt better than expected after surgery.

  • alphagam
    alphagam Member Posts: 5
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    Mary1864 said:

    Thank you

    I am scheduled tomorrow for an ultrasound (eus) which they me will begin staging the cancer, along with a cat chest on friday.  Did you feel like you just jumped on this train that is going 100 miles an hour?  I just feel like i am so worked up all the time and am truingnto be normal for my family.  

    I was told that chemo is likely to come first...but still uncertain...of everything for that matter.

    I read many posts for about a week and didnt think i would join.  Just be a passive member....but i feel like i need to talk about this scary and overwhelming disease without feeling guilty or hesitant.  And i do agree..everyone hear is so supportive.

    Are you home now?   Very glad to hear that you felt better than expected after surgery.

    EUS

    i had an EUS which stated that the tumor had grown through the rectal wall.  Went for second opinion and found that in reality the tumor was only in the rectal lining, Stage 0.  That was four years ago.  I get yearly screenings, but all is well.  My surgeon says EUS is an outdated test

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Mary1864 said:

    Thank you

    I am scheduled tomorrow for an ultrasound (eus) which they me will begin staging the cancer, along with a cat chest on friday.  Did you feel like you just jumped on this train that is going 100 miles an hour?  I just feel like i am so worked up all the time and am truingnto be normal for my family.  

    I was told that chemo is likely to come first...but still uncertain...of everything for that matter.

    I read many posts for about a week and didnt think i would join.  Just be a passive member....but i feel like i need to talk about this scary and overwhelming disease without feeling guilty or hesitant.  And i do agree..everyone hear is so supportive.

    Are you home now?   Very glad to hear that you felt better than expected after surgery.

    Yup Home

    I made it home within 4 days (check in the 10th, out the 14th) and I do credit the help here for it.  They all let me know walking after surgery was important, and I kept that in mind.  I probably did not get out of post-op until about 11:00PM and by 11:00AM (I guess) I was taking my first stroll.  Was not easy, and after 4 or 5 feet, I thought I was beat and could not go further.  BUT I had a great nurse and also remembered what I was told here - movment = healing = getting out of there.  (Easier to rest at home, as compared to being woken up every few hours, plus no IV line attached to walk around :) )  

    I think I tried two more times that day (maybe 3) and was making complete laps without stopping.  By the second day I was doing sets of two laps, guess I got to 6 (just shy of 1/2 mile in total).  The day before discharge I did two half mile sets.  (The staff knew how many laps made a mile :) )

    It is scary and overhwhelming for sure.  And I am not normally one who talks in general, but the rules changed when this landed on my lap and I have no regrets whatsoever in signing up and speaking with people here.  Not that other people do not understand, and obviously there is empathy and support, but we are now a part of this club.  I look at the posts here, the grace, knowledge and strength, and there is a ton of reassurance there.  

    Not sure if you saw the term NED yet (No Evidence of Disease), but it seems like 5 years of NED is the place where you want to wind up.   Since you and I are so close in time (there was also someone else) in 5 years we will all be stoked as we hit our 5 year NED point :)

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
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    extra

    My wife used cimetidine, high dose vitmain D3, K2, aspirin and a number of supplements recommended in Life Extension Foundation protocols to reduce the chances of cancer cell clusters surviving and to dramatically improve her immune response.  Our immediate response using these little known protocols, we consider to be her opportunity of her lifetime, destroying much cancer before her operation, including in the peritoneum and infiltrated fat.

    Read up on cimetidine, supplements, maybe celebrex for perioperative treatments that can be done before chemo will start, in a very limited time window.

  • Easyflip
    Easyflip Member Posts: 588 Member
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    Take a big breath and

    try to stay calm. I know that's easier said than done but you're in for a marathon, not a sprint. You'll feel better once you're staged and you know what you're up against. It's comforting when there's a plan in place and you begin marching towards the goal. The 'what ifs' will drive you crazy, and I gaurantee the majority of them will not happen. Much of the stats are outdated and everyone is different so try to stay off the internet and its doom and gloom. Think positively, hug your friends and loved ones and try to come from a place of gratitude instead of panic. I know it's hard, but you have to create a mindset that allows you to handle what's happening.  And remember we're all here for you too, Good luck, best wishes!

    Easyflip/Richard

  • Mary1864
    Mary1864 Member Posts: 39
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    alphagam said:

    EUS

    i had an EUS which stated that the tumor had grown through the rectal wall.  Went for second opinion and found that in reality the tumor was only in the rectal lining, Stage 0.  That was four years ago.  I get yearly screenings, but all is well.  My surgeon says EUS is an outdated test

    Second opinion?

    What test did they do when you went for a second opinion?  The surgeon told me that the eus is 60 percent effective.  

  • Mary1864
    Mary1864 Member Posts: 39
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    NewHere said:

    Yup Home

    I made it home within 4 days (check in the 10th, out the 14th) and I do credit the help here for it.  They all let me know walking after surgery was important, and I kept that in mind.  I probably did not get out of post-op until about 11:00PM and by 11:00AM (I guess) I was taking my first stroll.  Was not easy, and after 4 or 5 feet, I thought I was beat and could not go further.  BUT I had a great nurse and also remembered what I was told here - movment = healing = getting out of there.  (Easier to rest at home, as compared to being woken up every few hours, plus no IV line attached to walk around :) )  

    I think I tried two more times that day (maybe 3) and was making complete laps without stopping.  By the second day I was doing sets of two laps, guess I got to 6 (just shy of 1/2 mile in total).  The day before discharge I did two half mile sets.  (The staff knew how many laps made a mile :) )

    It is scary and overhwhelming for sure.  And I am not normally one who talks in general, but the rules changed when this landed on my lap and I have no regrets whatsoever in signing up and speaking with people here.  Not that other people do not understand, and obviously there is empathy and support, but we are now a part of this club.  I look at the posts here, the grace, knowledge and strength, and there is a ton of reassurance there.  

    Not sure if you saw the term NED yet (No Evidence of Disease), but it seems like 5 years of NED is the place where you want to wind up.   Since you and I are so close in time (there was also someone else) in 5 years we will all be stoked as we hit our 5 year NED point :)

     

    Ok...let's set that goal!

    I like thinking of a 5 year goal!  

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Mary1864 said:

    Ok...let's set that goal!

    I like thinking of a 5 year goal!  

    It Is A Deal

    Just marked my calender and also a reminder two days before :)

     

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
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    Been there

    I was diagnosed April 2012 Stage IV, mets to liver and lymph nodes.  The scariest time of my life.  Everything was a blur, had to take Ativan for anxiety.  My twin boys were 14 years old.  That's all I could think of is that I wouldn't be here to see them graduate.  Well they are graduating in 3 months and I am still here.  Also I am NED, so I hope to be here to see them graduate college. 

    Sandy

  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    Colon tumors

    my last two colon tumors did not show up on CT scans, just had a CT Scan this January on my third colon tumor and it does not show the tumor at all.  I know it's there because the pain is in the same place when it hits.  My second primary tumor (highly unusual in most cases) did not show up on 5 different CT/PET scans I suffered in great pain for months before finally getting a colonoscopy which showed I was 95% blocked from the size of tumor and got it cut out.

    I am gettings another colonoscopy for this third present tumor since it isn't showing up on CT Scan and am thrilled that my oncologist is recommending this one be cut out as well.

    So until you have a colonoscopy I don't really think you will know what is happening in your colon, if I were you I would insist that my oncologist give me one (I had to insist on this last tumor)  they do have to listen to you.

    Best of luck.

    Winter Marie

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    You are not alone

    For everyone getting a cancer diagnosis, the instant fear is there in some form or another.

    Have you had surgery?  Have you had a PET and/or CT scan?

    You are not causing pain to your loved ones, the cancer is.  Yes, staying strong and positive is important, but you will also need to let them help support you. 

    Please let us know what part of the country you are in, as members here are from all over and may be able to offer you some specific insights as time goes one.

    There are many here who have faced dire predictions from their doctors, who continue to live and live well.  It can be done.

    Hugs,

    Marie who loves kitties

  • Mary1864
    Mary1864 Member Posts: 39
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    You are not alone

    For everyone getting a cancer diagnosis, the instant fear is there in some form or another.

    Have you had surgery?  Have you had a PET and/or CT scan?

    You are not causing pain to your loved ones, the cancer is.  Yes, staying strong and positive is important, but you will also need to let them help support you. 

    Please let us know what part of the country you are in, as members here are from all over and may be able to offer you some specific insights as time goes one.

    There are many here who have faced dire predictions from their doctors, who continue to live and live well.  It can be done.

    Hugs,

    Marie who loves kitties

    Thank you

    I live in New Jersey.  I had a colonoscopy last week which the doc found  a 3 cm mass and knew it was cancerous.  Pathology came back as adenocarcinoma last friday.  Met with surgeon this past monday.  Had my baseline cea bloodwork on wednesday.  Eus ultrasound on thursday and a chest cat scan today.  I am feeling so withered....was doing good thru the week but i am just so exhausted.

     

    The eus results were that the cancer has spread into first two layers...not into muscular wall.  So he classified me as a stage 2.  But i know that is not a final diagnosis because i still have chest results to wait for....could jump right into stage 4.   I have to get better at dealing with the rollercoaster ride i am on.  The doc said that he saw two lymph nodes involved.

  • LindaK.
    LindaK. Member Posts: 506 Member
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    Mary1864 said:

    Thank you

    I live in New Jersey.  I had a colonoscopy last week which the doc found  a 3 cm mass and knew it was cancerous.  Pathology came back as adenocarcinoma last friday.  Met with surgeon this past monday.  Had my baseline cea bloodwork on wednesday.  Eus ultrasound on thursday and a chest cat scan today.  I am feeling so withered....was doing good thru the week but i am just so exhausted.

     

    The eus results were that the cancer has spread into first two layers...not into muscular wall.  So he classified me as a stage 2.  But i know that is not a final diagnosis because i still have chest results to wait for....could jump right into stage 4.   I have to get better at dealing with the rollercoaster ride i am on.  The doc said that he saw two lymph nodes involved.

    So sorry

    Wow, you have had quite a week, no wonder you are exhausted.  That is a lot to deal with in 1 week.  Try not to worry too much, easier said than done.  Try to get out this weekend (I know it's cold, I live in western NY) to do something to get your mind off all this if at all possible.  My husband had colon cancer but I'd never heard of a an EUS unless that is an endoscopy.  He had 2 in September for placements of stents when his bile duct and duodenum were blocked.  I am glad you are getting all the information so quickly, that is a blessing in disguise.

    Hopefully your oncologist will have a plan for you soon.  Whether it is surgery or chemo or radiation first.  It's a lot of information all at once.  Hang in there

    Linda

  • Mary1864
    Mary1864 Member Posts: 39
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    LindaK. said:

    So sorry

    Wow, you have had quite a week, no wonder you are exhausted.  That is a lot to deal with in 1 week.  Try not to worry too much, easier said than done.  Try to get out this weekend (I know it's cold, I live in western NY) to do something to get your mind off all this if at all possible.  My husband had colon cancer but I'd never heard of a an EUS unless that is an endoscopy.  He had 2 in September for placements of stents when his bile duct and duodenum were blocked.  I am glad you are getting all the information so quickly, that is a blessing in disguise.

    Hopefully your oncologist will have a plan for you soon.  Whether it is surgery or chemo or radiation first.  It's a lot of information all at once.  Hang in there

    Linda

    Thank you!
     
    The Eus is the

    Thank you!

     

    The Eus is the internal ultrasound....mostly to see the cancers penetration into intestinal wall.  I was grateful that it wasnt fully grown outside, but i know that doesnt mean it has not spread either.  I did have a lower cat scan in january, but it was for a post hospital stay workup.

     

    I went to the er in december with hgih fever and pain low to the right side.  They thought it may have been appendicitis or diverticulitis.  Never confirmed.  I went on antibiotic therapy, got better and went home.  Did follow up cat scan in january to find the source.  Doc could not determine.  The results showed a benign cycst on liver.   Now i am wondering if it really is benign.  Do they know right off from a cat scan whether it is benign ir malignant?

    Is having a cocktail ok with colon cancer?   Think i could reeeeaaalllllly use one!

    Always good, trying to find humor in this somewhere!

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    Hi Mary and welcome to the forum...

    hang in there!  You are in what is one of the toughest stages of the journey, imo.  It really helps once you get a plan in place and start working on getting rid of this crap.

    I too had a large tumor that ruptured the colon, and I did end up with peritoneal implants, as well as seeding in other areas.  But these were all removed in a series of surgeries, and I have been clear of disease (NED=No Evidence of Disease) for over three years.

    So there is hope.  And we will do all we can to support you through this.  It's a hard path to walk, but you don't have to do it alone.

    Big hugs~AA

  • Mary1864
    Mary1864 Member Posts: 39
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    Hi Mary and welcome to the forum...

    hang in there!  You are in what is one of the toughest stages of the journey, imo.  It really helps once you get a plan in place and start working on getting rid of this crap.

    I too had a large tumor that ruptured the colon, and I did end up with peritoneal implants, as well as seeding in other areas.  But these were all removed in a series of surgeries, and I have been clear of disease (NED=No Evidence of Disease) for over three years.

    So there is hope.  And we will do all we can to support you through this.  It's a hard path to walk, but you don't have to do it alone.

    Big hugs~AA

    Thank you for the encouraging words...

    It is easy here to say things....and share my fears.  Thank you.