My Brother was just diagnosed with stage 4 colon cancer

I can tell you are such a loving sister.  I joined this forum this year and am Stage IV rectal cancer.  This discussion board has helped me so much; not just for advice, but more emotionally.  I felt so alone.  Know that you are not alone!  The people here have helped me be more patient and calm.  We can ruin ourselveswith worry and fear.

I can't give much advice because all of our cancers are different.  But I can tell you there is lots of hope.  Please try to think positively.  For me, I decided to focus on living!  

May your baby brother get the best of care through this.  I already know he has lots of support.  

--Beth

37 is too young for this stuff, but life is anything but fair or evenhanded, it just is. My road is somewhat similar, though I was 49 at the time. Click on our blog names to get our histories. They pulled cancer out of my colon and liver[twice], and I'm here ten years later, NED and feeling fine. Other's diagnoses are even closer to your brother's, and they're here after many years, either clear or fighting the fight. Read awhile and know this is just the start of things, know that others have beaten it back, and your brother can, as well........................................Dave

Wish neither of you had family members going through this; but God is good.  Wonderful to have a friend who can empathize, cause this disease can be lonely.  

It's very tough when you hear the news that a loved one has cancer.  From diagnosis to surgery to start of chemo, it  can seem and feel like a whirlwind.  Meeting the surgeon, getting a second opinion (navigating your health care network in order to do so; maybe being turned away from a provider that is more well known for cancer treatment because you are out of their network), meeting the oncologist you're assigned to and maybe meeting with one or two more to get other views (not as likely even if they are located in other hospital locations -- they each may have their own policy on how often to do CT scans but I doubt they will contradict another doctor at another location of the same provider), then making the touch decisions about treatment and moving forward with that decision.  The anxiety from the regular blood tests and CT scans to detect any trace of cancer is unpleasant, but you feel like a ton of worry is off your chest (and your family's) when they come back "okay", giving you a 3-6 month reprieve until the next tests.  Then, you may have clean scans and blood tests for 3 years, at which point your oncologist and surgeon may spread out the regular tests to one year (keeping blood tests at every few months to continue using that as an early indicator of recurrence).  At the 3 year mark, the chances of recurrence is supposed to drop the most (like 85%), from years 3-5 it becomes 15%, and after year five to ten it becomes even less..  I think reaching year 3 with no evidence of disease is a blessing.  Would feel even better once you hit year 5 with NED.  But even after year 5, you're still not totally out of the woods, but your chances of survival improve dramatically.  I personally feel like it'd take reaching year 10 with NED before I would feel truly "cured".  What I'm saying is there will be intervals of anxiety in between your everyday living and enjoying of life.  During some blood tests, you may find CEA bounces up and down, and with each bounce up it may bring increased anxiety.  Some hospitals view CEA below 2.5 or 3 as "normal" and others view anything below 5 as normal.  Some things other the cancer returning, such as exposure to cigarette smoke, infection and inflammation somewhere else in your body, and other things can cause CEA to rise.  The oncologists usually look for a trend before they become concerned, at which point if the rise crosses a certain threshold value, they may order scans earlier than your regularly scheduled date.

I won't sugar coat things.  I can be very emotionally and mentally draining on loved ones caring for someone with cancer, especially if you have to juggle your day job, kids/pets, other responsibilities.  Also, you experience anxiety as well.  There will be ups and downs. 

Here is some advice, for what it's worth:

1. Get second opinions if possible (if needed get 3rd opinions) on sugery and chemo options, to determine what's the best course of action.

2. Don't be afraid to ask questions and educate yourself, but avoid over doing "ask Dr. Google" and creating more worry and anxiety than you should deal with on a day to day basis.  Be mindful of your own health, so that you can remain able bodied to help your loved one as needed.

3. The patient and family should have the right to understand and feel free to ask as many questions as they need to understand things and to make informed decisions.  Don't let any doctor give you have assed answers, but also be cognizant that you're working together - it's a partnership of sorts, so you want to maintain the relationship, so being persistent and insistent on quality answers and supporting documentation in a tactful manner counts.  If you have good reason to doubt the doctor is the right choice (you want to give them a real chance and pick substantive reasons if you do wish to terminate the relationship), it may be worth the effort to meet with other doctors and find one you believe is engaged and experienced to the level that you think they should be.

4. Help your loved one by buying dry mouth mouthwash like Biotene that's easier on their mouth during this sensitive time.  Lotion for their dry hands and feet also help.  Taking them on walks after surgery and during chemo period is important also.  Continuing to eat well is also important.  During chemo, you may be asked to lay off of concentrated anti-oxidants like you find in homemade smoothies made of fruits and veggies or supplements.  They may work against the chemo meds.  After chemo is over, start consuming more anti-oxidants.

5. Family spending quality time with your loved one is important.. kids, grand kids, siblings, etc.  You get a greater appreciation for the gift of life and how fleeting it can be during this time.  Try to live life and look at the positives with your loved one, with joy and appreciation and a new found zest for life.  attitude can play a part in getting and staying healthy in mind and body.

6. Take care of yourself and don't try to take on everything yourself.  Share responsibilities with other family, taking shifts in the care of your loved one.  You need to stay healthy.  Anxiety, worry, sadness, overwork can wear you down and that helps nobody.  You may end up creating physical problems for yourself.

Having other family and friends to help out is a blessing not everyone is fortunate enough to have.. same with understanding workplaces that give you some flexibility to take off early or work from home as needed.  Having good doctors and the patient responding well to treatment is also a blessing.

The patient continuing to look after their health, what foods they consume and etc is also important, even after they feel they are "in the clear".

Hope this helps.  If you have anything else you wish to know or ask, feel free.

findthebesthelp said:

It's very tough when you hear

It's very tough when you hear the news that a loved one has cancer.  From diagnosis to surgery to start of chemo, it  can seem and feel like a whirlwind.  Meeting the surgeon, getting a second opinion (navigating your health care network in order to do so; maybe being turned away from a provider that is more well known for cancer treatment because you are out of their network), meeting the oncologist you're assigned to and maybe meeting with one or two more to get other views (not as likely even if they are located in other hospital locations -- they each may have their own policy on how often to do CT scans but I doubt they will contradict another doctor at another location of the same provider), then making the touch decisions about treatment and moving forward with that decision.  The anxiety from the regular blood tests and CT scans to detect any trace of cancer is unpleasant, but you feel like a ton of worry is off your chest (and your family's) when they come back "okay", giving you a 3-6 month reprieve until the next tests.  Then, you may have clean scans and blood tests for 3 years, at which point your oncologist and surgeon may spread out the regular tests to one year (keeping blood tests at every few months to continue using that as an early indicator of recurrence).  At the 3 year mark, the chances of recurrence is supposed to drop the most (like 85%), from years 3-5 it becomes 15%, and after year five to ten it becomes even less..  I think reaching year 3 with no evidence of disease is a blessing.  Would feel even better once you hit year 5 with NED.  But even after year 5, you're still not totally out of the woods, but your chances of survival improve dramatically.  I personally feel like it'd take reaching year 10 with NED before I would feel truly "cured".  What I'm saying is there will be intervals of anxiety in between your everyday living and enjoying of life.  During some blood tests, you may find CEA bounces up and down, and with each bounce up it may bring increased anxiety.  Some hospitals view CEA below 2.5 or 3 as "normal" and others view anything below 5 as normal.  Some things other the cancer returning, such as exposure to cigarette smoke, infection and inflammation somewhere else in your body, and other things can cause CEA to rise.  The oncologists usually look for a trend before they become concerned, at which point if the rise crosses a certain threshold value, they may order scans earlier than your regularly scheduled date.

I won't sugar coat things.  I can be very emotionally and mentally draining on loved ones caring for someone with cancer, especially if you have to juggle your day job, kids/pets, other responsibilities.  Also, you experience anxiety as well.  There will be ups and downs. 

Here is some advice, for what it's worth:

1. Get second opinions if possible (if needed get 3rd opinions) on sugery and chemo options, to determine what's the best course of action.

2. Don't be afraid to ask questions and educate yourself, but avoid over doing "ask Dr. Google" and creating more worry and anxiety than you should deal with on a day to day basis.  Be mindful of your own health, so that you can remain able bodied to help your loved one as needed.

3. The patient and family should have the right to understand and feel free to ask as many questions as they need to understand things and to make informed decisions.  Don't let any doctor give you have assed answers, but also be cognizant that you're working together - it's a partnership of sorts, so you want to maintain the relationship, so being persistent and insistent on quality answers and supporting documentation in a tactful manner counts.  If you have good reason to doubt the doctor is the right choice (you want to give them a real chance and pick substantive reasons if you do wish to terminate the relationship), it may be worth the effort to meet with other doctors and find one you believe is engaged and experienced to the level that you think they should be.

4. Help your loved one by buying dry mouth mouthwash like Biotene that's easier on their mouth during this sensitive time.  Lotion for their dry hands and feet also help.  Taking them on walks after surgery and during chemo period is important also.  Continuing to eat well is also important.  During chemo, you may be asked to lay off of concentrated anti-oxidants like you find in homemade smoothies made of fruits and veggies or supplements.  They may work against the chemo meds.  After chemo is over, start consuming more anti-oxidants.

 

5. Family spending quality time with your loved one is important.. kids, grand kids, siblings, etc.  You get a greater appreciation for the gift of life and how fleeting it can be during this time.  Try to live life and look at the positives with your loved one, with joy and appreciation and a new found zest for life.  attitude can play a part in getting and staying healthy in mind and body.

 

6. Take care of yourself and don't try to take on everything yourself.  Share responsibilities with other family, taking shifts in the care of your loved one.  You need to stay healthy.  Anxiety, worry, sadness, overwork can wear you down and that helps nobody.  You may end up creating physical problems for yourself.

 

Having other family and friends to help out is a blessing not everyone is fortunate enough to have.. same with understanding workplaces that give you some flexibility to take off early or work from home as needed.  Having good doctors and the patient responding well to treatment is also a blessing.

 

The patient continuing to look after their health, what foods they consume and etc is also important, even after they feel they are "in the clear".

 

Hope this helps.  If you have anything else you wish to know or ask, feel free.

 

 

 

 

 

A well constructed post. Informative for everyone, regardless of 'time served'.  Thanks findthe.....!

Tru

I am sorry you find youself here, searching for help for your brother and family. 

37 is so young. Far too young to be dealing with the horror of CRC. But, its a done deal now, and moving forward is what comes next. 

I think findthe...... has been quite succinct in their post, but I will add a couple of things that helped me on my trip - and what a trip -

A notebook. A big notebook.  I wrote down everything that was happening to me, no matter how small or big, or how unrelated I thought it might be to Cancer or treatment. I took that book with me to every appointment, and I went though everything with my Oncologist.  I listed problems from the top of my head to my toes, and then the emotional side as well.  I know that on the first visit, my Onc popped his head around the door and wished me luck, and I called him back. He learned very quickly that I would need some time with him at each visit. 

Depending on the treatment, other advice will be forthcoming from all here.  Treatment effects us each individually, but there are some givens.  Take the hair loss thing, I did lose my hair (see my lovely picture) but others didn't.   Neuropathy, cold sensitivity, mouth sores, these are a few givens if a patient is on Oxaliplatin.  

But, lets not jump ahead too far. Thats another bit of advice. It can be terribly overwhelming if you look too far ahead. Take every day as it comes, and every step of treatment as it comes along. 

I personally didn't take suppliments, others take many. It is a personal choice, made after careful study and deciding what is best for you (in this case, your brother's decision). 

What Chemo cocktail will he be on? That will help us give you more targeted advice. 

Everyone needs to be positive. Once treatment starts, the shock of diagnosis actually lessens. Doing something about the Cancer is a huge step for the mind. 

Good luck to your brother and to you and all those who love him. 

Visit often. We're here to help. 

Tru

Welcome to the forum Jenn! Cancer is non discriminating. It hits anyone at any age. With the improvement of cancer drugs and treatments. It is curable. Your brother is blessed to have such a loving sister by his side. 

I assume your brother hasn't had the suregery yet. Having the tumor still in his colon, eat soft food. No raw veggies and fruits which has high potential for blockage. That was what my surgeon adviced me before my surgery. 

I agree there should be a Like button here like on FB. It's a form of acknowledgment/agree after reading a post.