Mom with cancer - question about kids

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Hi everyone - I'm new here, this is my 1st post. 

I am 41 with 2 kids (ages 11 & 13)

I have Stage 4 Colon Cancer which has spread to my liver and lymph nodes. I am told I am terminal, but going to fight as hard as I can anyway. 

My first 'set' of chemo has been cut to 60% for my 6th cycle this week. It will might be my last chemo treatment before we try surgery on the liver. I am wondering if I should bring my kids to the 'last' cycle this round?  I have been completely open and honest with my kids, but they only see me after treatment. Do you think it would be helpful for them to 'see' what it's like?  They could 'ring the bell' with me. 

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Welcome to the forum of hope and joy

    Yeah really, joy. I mean that.

    There are many here with a stage IV diagnosis who are survivors many years. I'm a fairly young one, with two years under my belt, and you will see others here several years out. So yes indeed, there is hope and joy. 

    If you are allowed to take your children into treatment with you, then I see no reason why not. Well, there are a few reasons, one if they are sick, and the other if you feel they couldn't handle it. You certainly sound like you have a handle on the situation, and are the kind of person who would not take them in if they were sick or couldn't handle it. 

    I don't know how your Chemo room is set up. I've been in both open rooms and rooms with partitians. If it is an open room, you might want to consider if other patients would find children in the room a tad uncomfortable. Also, if you have someone else along with you, that can take them out now and again, as treatment is usually a long haul. Well, it was for me.

    Anyway, I would say go for it, if you have the all-clear from the chemo nurses. 

    Good luck as you move into the next stage of treatment.  

    How many liver mets do you have and what size?  I had one, and it was 2.2cm. I had mine thermally ablated just over two years ago and so far so good. It is ALLOT less invasive than a resection, but has restrictions, like size of tumour and position. Its worth looking at all options though. 

    I hope you pop back and let us help you through this trip into the world of Cancer. 

    P.S. I just read back on my post. When I say 'young one' I meant in the Cancer world. I am in fact an 'old one' in the real world. 

    SUE

     

     

  • lizard44
    lizard44 Member Posts: 409 Member
    edited June 2016 #3
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    Welcome

    Welcome to the forum.  I'm a stage 4, too, with mets to the liver. I was diagnosed just over a year ago and have received both chemo and  chemo/radiation. I'm back on chemo now and we're hoping I'll be able to  get an ablation of the liver tumor after  the current rounds of chemo are finished. My onc won't use the word "cure" when talking about stage 4 but she doesn't often use the word "terminal" either. She  did say that with new treatments it's possible to  treat stage 4 cancer  as though it's a chronic disease that can be managed- sometimes for quite a long time. It may  be terminal eventually, and not all treatments work for all people, but  as Sue notes, there are quite a few folks in the forum who are  several years out from a stage 4 diagnosis and are doing well.

    As to whether you should take the children in,  check with  your  medical facility.  The clinic at which I receive my treatments doesn't allow children under 16 in the treatment area.  If your  facility does allow children, and you're pretty sure your children can handle it, then  I don't see why not.  If it turns out  you can't   let them in,  maybe you could  take pics or a video to show them.

    Again, welcome-  do  keep posting and let us know how you are doing.

    Grace/lizard44

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    I think taking them would be

    I think taking them would be a great idea. Kids (and adults) have a tendancy to imagine things are much worse than thery are when they don't know what's going on. They probably sense that this is a scary thing even if you haven't shared that with them.

    I'm uncomfortable with your doctor's diagnosis of being terminal. Unless something else gets us first this will probably be what kills all of us eventually. But we can't live forever, it's got to be something. I had lymph node involvement which made me a stage 3 but have since had lung mets which still makes me a stage 3 but in my mind that's stage 4. I expect to be around for a long time. At the moment my colon cancer seems to be dealt with and the lung mets have been radiated to oblivion. Sure, it could crop up somewhere else but it also might never do that. Who told you that you're terminal? Was it your family doctor or an oncologist? It seems kind of early for a medical professional to make a statement like that. 

    I hope you'll be treated and will deal well with the treatments and will have a great outcome.

    Jan

  • SilentRenegade
    SilentRenegade Member Posts: 123
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    Don't listen to that terminal

    Don't listen to that terminal stuff... Yeah, statistically that might be true, but my dad has had colon cancer in his liver, lungs, and brain. His main tumors were taken care of with just chemo and radiation and have been gone for 2 years. He also ended up with medullary thyroid cancer and that was quite a **** - this is during the colon cancer treatment. Right now he has lung and liver involvement only, but it's a **** trying to take care of it. We're starting new options too. 

    Get a a second opinion if you aren't comfortable with the first. I wish my dad would have done that sooner, but better late than never, I suppose...

  • lp1964
    lp1964 Member Posts: 1,239 Member
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    Dear Friend,

    Wanting and willing to fight and trusting the treatment and the people who treat you is more than half of the success. So you have a pretty good chance.

    The reaction of children especially teenagers can be very different from strong support through complete break down( least likely) to indifference. Don't be surprised if you get one of these. We adults need a long time to learn to deal and live with this, they probably need even more. Watch their reaction and keep reinforcing them and yourself that everything will be ok. 

    Wish you all the best,

    Laz

  • Momma with a Bentley
    Momma with a Bentley Member Posts: 4
    edited June 2016 #7
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    So glad I decided to share

    Thank you everyone for your comments and feedback. 

    The word terminal was used by my oncologis. Gave me 6 months without treatment and an average of 2 years with treatment. Meaning 50% of parients won't make 2 years and 50% will surpass 2 years. That was how it was worded to me, and those stats only applies IF surgery on my liver is possible. 

    As for the kids. I have spoke to the doctors and the clinic and they would be happy to have them (not for the full 4 hours but for a bit). Because I have shared my journey with their school, we will be skyping with their class to help show them what chemo looks like for me. I love the idea that we can share, learn and talk openly about this process every step of the way. 

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    So glad I decided to share

    Thank you everyone for your comments and feedback. 

    The word terminal was used by my oncologis. Gave me 6 months without treatment and an average of 2 years with treatment. Meaning 50% of parients won't make 2 years and 50% will surpass 2 years. That was how it was worded to me, and those stats only applies IF surgery on my liver is possible. 

    As for the kids. I have spoke to the doctors and the clinic and they would be happy to have them (not for the full 4 hours but for a bit). Because I have shared my journey with their school, we will be skyping with their class to help show them what chemo looks like for me. I love the idea that we can share, learn and talk openly about this process every step of the way. 

    Ignore the stats

    YOU are not a stat. Totally ignore them. I can't emphasize how far a positive attitude can take you. Its a personal thing, none of us can tell you how to get there, but with your young children and the man in the picture who I presume is someone very special, I bet you have plenty to live for. 

    And, I'm not saying that you life may not be shortened because of this disease; but 6 months, 2 years, they are just numbers. 

    I do hope that your liver mets can be surgically removed. You might want to look into getting a second opinion from another Oncologist. You may be surprised with the results. 

    Stick around. You can join those of us who are living beyond the stats. 

    SUE

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Ignore The Stats

    As others have said, do not get bogged down with them.  I am not IV, but IIIC with a TON of lymph nodes.  (I am 50/50 of lasting 5 years.  In 16 months or so, so 50/50 of a few more years.  Screw that noise.....)  My oncologist told me that based on my health and being young (my health is fine, other than the 800 pound gorilla, and I am a tad over a decade older than you, well maybe a dozen years :) ) that he is confident I will be okay even if it comes back.  

    The only thing I would say is get opinions and do not give up based on one opinion.  Not sure where you are, but if in NY area, go to Sloan, Texas, MD Anderson, etc.  

    Do not let the down moments take you down.  We all have them.  Kind of understandable since we all have cancer :)  But go with the good stuff.

    And lastly, welcome to the forum.  None of us like to see new people, but this is a place filled with great people.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited June 2016 #10
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    What a great idea about

    What a great idea about skyping with the children's class! You never know, you might insoire one of them to be a nurse or doctor or find the cure for cancer! One of the things they say on this site is that a doctor can't tell you how long you have unless they're planning to come to your door and shoot you after the alloted time. And staying positive is the best defense. Your body's ability to fight will be depleted by negative thoughts, it really does affect our immune system. You give me the impression you're a fighter, though. The liver does regenerate itself to a certain extent so I'm hoping surgery will be an option or ablation or something that will help. Then prove the doctor wrong and live long and live well!

    Jan

  • DD3
    DD3 Member Posts: 136 Member
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    I

    say if your are comfortable and the docs don't mind.  Let them ring the bell!!!!!!!!!!!!!!!!

    Terminal... Hahahaha.  Tell the doc you're not buying what he selling.  Ingore the stats.  Keep your head up and stay positive.  After two years tell your oncologist "I told you so."  Good luck....

  • danker
    danker Member Posts: 1,276 Member
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    Trubrit said:

    Welcome to the forum of hope and joy

    Yeah really, joy. I mean that.

    There are many here with a stage IV diagnosis who are survivors many years. I'm a fairly young one, with two years under my belt, and you will see others here several years out. So yes indeed, there is hope and joy. 

    If you are allowed to take your children into treatment with you, then I see no reason why not. Well, there are a few reasons, one if they are sick, and the other if you feel they couldn't handle it. You certainly sound like you have a handle on the situation, and are the kind of person who would not take them in if they were sick or couldn't handle it. 

    I don't know how your Chemo room is set up. I've been in both open rooms and rooms with partitians. If it is an open room, you might want to consider if other patients would find children in the room a tad uncomfortable. Also, if you have someone else along with you, that can take them out now and again, as treatment is usually a long haul. Well, it was for me.

    Anyway, I would say go for it, if you have the all-clear from the chemo nurses. 

    Good luck as you move into the next stage of treatment.  

    How many liver mets do you have and what size?  I had one, and it was 2.2cm. I had mine thermally ablated just over two years ago and so far so good. It is ALLOT less invasive than a resection, but has restrictions, like size of tumour and position. Its worth looking at all options though. 

    I hope you pop back and let us help you through this trip into the world of Cancer. 

    P.S. I just read back on my post. When I say 'young one' I meant in the Cancer world. I am in fact an 'old one' in the real world. 

    SUE

     

     

    'old one'

    Age is relative!!! To me you are just a kid.!!! LOL

  • traci43
    traci43 Member Posts: 773 Member
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    I am a 9 year stage 4 survivor

    I refused to take my first oncologist's view that I was terminal and would be on chemo until I died.  I dumped his a$$ and changed to a Doctor that said that cancer could be treated as a chronic condition.  It took 7 years, 4 surgeries, and 56 rounds of chemo (no radiation) to be in remission for 2 years now.  Don't give up!  I was 45 when diagnosed.  My colon cancer had spread to the ovaries and peritoneum.  When I started Avastin was brand new, it had only been FDA approved 6 months earlier.  Now it's a standard for first line chemo.  My point is, there are so many changes that the statistics just don't hold up.

    I wish you all the best and hope the surgery is a huge success!  Traci

     

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    Hello!  Terminal is in the

    Hello!  Terminal is in the eyes of the beholder.  Doctors have no right to predict who is going to live and who is not.  Fight the good fight and I think it's great to include your kids in your treatment.  I think not only will they benefit from seeing how hard you are working to stay here for them but it will benefit you to have them with you to remind you what you're fighting for.  You go girl!  Beat that cancer.  And I swear that brocolli sprouts are one of the reasons I'm still here.  My neighbor gave me a batch every week and I ate them on a peanut butter sandwich (because they taste gross) on 7 grain bread washed down with almond milk.  Please look them up.  I thought she was nuts when she told me but when I looked them up, I was suprised to see that they are a really serious cancer fighter.  They are included in Sloan's website.  Not brocolli, but brocolli sprouts.  Chew them really well.  Found in any Whole Foods type store.  

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Hope...

    There is always hope. I agree with what others are saying, with all the new chemo meds coming out, most doctors are treating stage 4 crc as a chronic condition. My brother's doctor told him it is treated similar to diabetes, it's something that you have to live with. She said he's 'LIVING WITH CANCER" NOT "dying from cancer " My brother is different than most others on this board because he had non hodgkins lymphoma in 2000 and was given really strong chemo meds for that. He beat NHL but it weakened his heart. Then he was diagnosed with rectal cancer in 2011 and had rectal surgery and did chemo and radiation. He has been on chmo since then, but unfortunately, his heart has become too weak right now for the chemo. At this point, 5 years after diagnosis and still feeling well, he has decided to stop chemo, feeling his heart will give out if he stays on it. I believe if he hadn't had the NHL in 2000 and was on the strong chemo cocktail, he's be around for many, many years to come. Please don't see your diagnosis as a death sentence. Maybe you should seek a 2nd opinion and go with an oncologist who wants to fight for you to live. Keep fighting and ignore the statistics. They are outdated and do not apply to all.

    As far as your children handling being at your infusion visit, you know your kids best. If you think they can handle it, go for it.

    Keep fighting!

    Lin

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited June 2016 #16
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    Hope...

    There is always hope. I agree with what others are saying, with all the new chemo meds coming out, most doctors are treating stage 4 crc as a chronic condition. My brother's doctor told him it is treated similar to diabetes, it's something that you have to live with. She said he's 'LIVING WITH CANCER" NOT "dying from cancer " My brother is different than most others on this board because he had non hodgkins lymphoma in 2000 and was given really strong chemo meds for that. He beat NHL but it weakened his heart. Then he was diagnosed with rectal cancer in 2011 and had rectal surgery and did chemo and radiation. He has been on chmo since then, but unfortunately, his heart has become too weak right now for the chemo. At this point, 5 years after diagnosis and still feeling well, he has decided to stop chemo, feeling his heart will give out if he stays on it. I believe if he hadn't had the NHL in 2000 and was on the strong chemo cocktail, he's be around for many, many years to come. Please don't see your diagnosis as a death sentence. Maybe you should seek a 2nd opinion and go with an oncologist who wants to fight for you to live. Keep fighting and ignore the statistics. They are outdated and do not apply to all.

    As far as your children handling being at your infusion visit, you know your kids best. If you think they can handle it, go for it.

    Keep fighting!

    Lin

    Chemo brain

    I'm sure I've heard that expression 'Living with Cancer, not dying from Cancer' but when I read your post today, its like 'what?!! I like that! Why haven't I heard that before?'  

    Maybe chemo brain erased it. But its back now. Thanks!

  • JessiB16
    JessiB16 Member Posts: 1
    edited June 2016 #17
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    Hello!

    Hello :) I am new and this is my 1st post! I am a 34 year old mother of 2 with a diagnosis of Stage IV colon cancer with mets on my liver, lungs. 2 lymphnodes and abdominal tissue... I have had 3 rounds of chemo so far. I have just started getting on here to give me some hope as my diagnosis isn't the best either :(

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    JessiB16 said:

    Hello!

    Hello :) I am new and this is my 1st post! I am a 34 year old mother of 2 with a diagnosis of Stage IV colon cancer with mets on my liver, lungs. 2 lymphnodes and abdominal tissue... I have had 3 rounds of chemo so far. I have just started getting on here to give me some hope as my diagnosis isn't the best either :(

    Welcome to the forum

    I am sorry that you have a need to join us here; this diagnosis is the pits. 

    Now that you are here, you will definitely support the and information you need to help you through this journey. 

    Here is the forums home page http://csn.cancer.org/forum/128  please feel free to post an intoductory thread, so that members can welcome you. 

    SUE

  • Faithandstrength
    Faithandstrength Member Posts: 19
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    JessiB16 said:

    Hello!

    Hello :) I am new and this is my 1st post! I am a 34 year old mother of 2 with a diagnosis of Stage IV colon cancer with mets on my liver, lungs. 2 lymphnodes and abdominal tissue... I have had 3 rounds of chemo so far. I have just started getting on here to give me some hope as my diagnosis isn't the best either :(

    Hello

    hello I'm sorry to hear of your diagnosis. I'm taking care of my mom now who is also stage 4. My family has been a big support system for my mom. Just have hope and never give up. Keep fighting and with your loved ones by your side, you can get through this. I always tell my mom we will take it one day at a time. i try to make the environment around her a happy one and I buy her fresh flowers and put them in a vase on the coffee table. On the days where you feel good and aren't dealing with the side effects, keep yourself busy with something you enjoy doing such as watching one of your favorite tv shows or listening to some nice music in the mornings, these things help my mom because it doesn't allow her mind to wander. I wish you the best on this journey. 

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Trubrit said:

    Chemo brain

    I'm sure I've heard that expression 'Living with Cancer, not dying from Cancer' but when I read your post today, its like 'what?!! I like that! Why haven't I heard that before?'  

    Maybe chemo brain erased it. But its back now. Thanks!

    Sue

    I love my brother's oncologist. She has such a positive attitude. I know she is disappointed that he doesn't want to stay on chemo. She was willing to try to adjust the dosages and try again, but my brother is tired and afriad that his heart will fail. 

    I do believe most people on here are "living with cancer." Chemo is the manitenance needed like a diabetic needs insulin. That's how she explained it to him. 

    None of us have a date of death stamped on the bottom of our foot, so a doctor saying a person is terminal this early in the game makes me question whether a 2nd opinion would be a better idea. The dr sounds like he's giving up before he's even started.

  • BillO60
    BillO60 Member Posts: 72
    edited June 2016 #21
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    In the immortal words of Han Solo

    "Don't tell me the odds".   Anyone that knows statistics will tell you that they are easily manipulated, they depend a lot on the data being correct (there's always a margin for error), it depends on how large the data set is, etc.    Here's a few factoids to offset the terminal diagnosis...

    1.   Much of the research data used in most cancer statistics related to survival rates are based on studies performed a decade or more ago. There haven't been enough large scale studies using the new treatments to adjust the survival rate statistics so much of what doctors throw out as fact is either based on old data or it's ancedotal based on their experience or what's been published in some study or another.  I've pinned down more than one doctor who freely admit it's guesswork. 

    2.   There are many new treatments that weren't around even 5 years ago that could invalidate the "averages" that get thrown around.

    3.    My wife passed away from Stage IV colon cancer in 1999.   She was diagnosed in 1994. From the very beginning of her diagnosis she was told she had 6 months to a year to live.  She was told that for 5 years.  I often wonder if she'd been diagnosed today if the outcome wouldn't have been alot different.

    On taking kids to your treatment.   If you can, I'd certainly suggest it.  My daughter was 12 when my wife was diagnosed and by year 4 she pretty much believed that her mom wasn't as sick as she claimed she was.  The problem was that my wife (who was an RN) wanted to shield her from the reality of what was going on so my daughter was pretty much in the dark. She was also in shock and had a few years of guilt after my wife passed away.  

    So, your kids may not totally grasp what's going on.  Kids tend to have lots of built-in filters that help them to see and deal with reality in a whole different way than adults do.   But, if they are included and see what you are going through, and apply that to what you've already told them, they'll probably understand better why mom isn't up to some of the activities she might have been doing before.

    If you have an oncologist using the word "terminal" find another one.   There's not a single oncologist, surgeon, or any other healthcare professional that is so good they can predict the future.   If I had one use the t word I'd fire them because I'd have to believe they (1) gave up, (2) aren't bothering to keep up with the latest treatments and modalities, (3) are idiots because the battle is as much mental as it is physical and no health professional should put that kind of thought into someone's head.  They should be open and honest and present all of the facts as they know them but they should never sabotage a patient that way.

    I'm not a blue-sky and life is going to be easy kind of person and I'm not in denial about what I need to do to stay alive as long as I can.  I used to go to Las Vegas and, unfortunately, the first thing I learned were the odds.   That meant that I lost more often than I won which really frustrated me. 

    I finally took a more zen approach and would take $200 with the firm thought that the money was not mine but belonged to Las Vegas and my sole goal was to hang on to it for as long as I could.  I quit thinking about the odds and it made it more fun, I was more relaxed, and I actually won once in awhile. 

    That's my philosophy here. My sole goal is to do what I need to do to hang on to life for as long as I can.  It may be measured in months, years, decades.  I don't what it will be, (and neither does anyone else), so I will hang on to it for as long as I can.  No matter how you look at it, if you get an extra 50 years or 5 minutes you've won.

    Welcome to the Discussion and I wish you and your family the best

    Bill