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Wife dominated colon cancer (1 Viewer)

Wife was diagnosed with colon cancer - had her ascending colon removed - she was staged 3B at the age of 40. 6 months of chemo started about 6 weeks after her surgery. On March 17 she hit 4 years post op with no reoccurrence of cancer.

Helpful hints from the spouse of a colon cancer survivor. Love them, do not smother them. Be available but not invasive. Listen a lot, but don't be too inquisitive because the cancer patient already feels like they are in a fish bowl. Be heroic - do everything you can to make their day to day life easier - but don't expect praise for this - if anything expect criticism - because they in their mind don't want you taking over their life and the things they used to do. So it is appreciated, but it might feel like you are taking away some of the things they think they add value in.

Tell them and show them you love them - but give them space to be angry and resentful as well. Cancer sucks, it is okay to be angry and resentful.

Get a good oncologist - at such a young age check if it is Lynch Syndrome - which would impact the ability for you children to detect cancer earlier.

Mainly - know this can be beaten - and approach the battle positively even if at times you need to fake it.

 
James Daulton said:
Ugh, thoughts and prayers.

I got colon cancer when I was 21. Luckily for me, the tumor grew in and no nodes were positive. Since I was so young, my parents pushed my physicians to pursue a very aggressive follow up regiment of both chemo and radiation.

You wife is young and I don't know the protocol for her stage, but I would push to have as aggressive treatment as possible. Chemo and radiation do suck hard but for a year's worth of discomfort, it may be well worth it in the long run.

Good luck to your wife and if you have any specific questions about what's normal post-surgery, what kind of issues she can expect, or just any general questions, feel free to shoot me a pm.
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Thanks for the info. The Dr/surgeon said he wants to be as aggressive as possible with treatment. He mentioned chemo on the phone with my wife, but I'm not sure what other treatment, if any, was mentioned. We have an appt next week and I'll have more detail.

 
bigbottom said:
Let people help you. Tell them what you need them to do. You will not be inconveniencing them. People want to do something, but often don't know what to do. By telling them precisely what you need (food delivery, babysitting, picking up the kids at activities, arranging regular girls' nights out, etc.), you are giving them a gift. You are giving them purpose and the ability to contribute. More often than not, trying to soldier on by yourselves and do everything on your own without putting anyone else out or inconveniencing them is what will ultimately drive them away. And that won't be any good for anyone.

My two cents.

Will be keeping you both, and the two kiddos, in my thoughts and prayers.
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Thanks for the solid advice. I've thought of you and your son and the strength you displayed, and have used it as inspiration over the last couple of weeks - and will continue to.

 
Courtjester said:
So sorry to hear man. :(

I am no expert nor do I have personal experience with Colon Cancer but (going through what I am going through my dad's lung cancer which some day I may post about) maybe I can offer some advice. Should they go for an aggressive treatment of chemo/radiation, be proactive during the chemo--in other words be ready for any side effect--some meds cause severe constipation, while others case really bad diarrhea. Fill all meds they suggest--it is better to have it and not need it. I don't know your financial situation, but do not be too proud to take any grants or assistance that you qualify for. A lot of them start around 400-500% of the poverty level--so you can make some substantial money and still qualify. My dad's meds are $1,550 out of pocket every 3 weeks and then they do a Neulasta shot to build his white blood cells--this shot before insurance costs (are you sitting down?) $10k--my dad's out of pocket on it is 1k every 3 weeks. There are 3 companies helping him and my mom out to pay for these and we are covering the rest, but there are many out there to help. I am not sure if your job offers FMLA, but if you can access that or take a leave of absence, that's what I would shoot for. Like others have suggested, she is going to need you to wait on her hand and foot in the beginning. Your kids are so young, so they are not going to understand why mom is so tired, so any help you can get there will make your life easier. If you don't have a Netflix account, get one so movies with mom and the kids will be a way for them to spend time together and she can still rest. Diet is important. Protein seems to really help the body regenerate after chemo.. Turkey is a big help.

The good news just reading about this stage is it seems to have a very good prognosis. So just stay as positive as you can. If I can be of any other help, please feel free to PM me.
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Thanks for the info. We have netflix so we are good there! I'll be sure to look into financial assistance.

 
Thoughts and prayers for your family. My wife is also a cancer survivor. Luckily it was thyroid cancer and was very treatable. She was in her early 30's as well. She tested positive for it in her lymph nodes as well but with treatment she has been cancer free for 4 years. Its scary as hell, but can be beat with good luck. Make sure she keeps positive as much as possible. Going through treatment is tough and the stronger you are the better it will be. Physically and mentally. Be a rock for her. That's the best thing you can do to help her.

#### cancer.

 
Mr. Know-It-All said:
Wife was diagnosed with colon cancer - had her ascending colon removed - she was staged 3B at the age of 40. 6 months of chemo started about 6 weeks after her surgery. On March 17 she hit 4 years post op with no reoccurrence of cancer.

Helpful hints from the spouse of a colon cancer survivor. Love them, do not smother them. Be available but not invasive. Listen a lot, but don't be too inquisitive because the cancer patient already feels like they are in a fish bowl. Be heroic - do everything you can to make their day to day life easier - but don't expect praise for this - if anything expect criticism - because they in their mind don't want you taking over their life and the things they used to do. So it is appreciated, but it might feel like you are taking away some of the things they think they add value in.

Tell them and show them you love them - but give them space to be angry and resentful as well. Cancer sucks, it is okay to be angry and resentful.

Get a good oncologist - at such a young age check if it is Lynch Syndrome - which would impact the ability for you children to detect cancer earlier.

Mainly - know this can be beaten - and approach the battle positively even if at times you need to fake it.
Click to expand...
Thanks for the advice. I have been a bit unsure of how to act, whether to continually ask how she is, whether to not ask at all, etc. I ask every few days, but have pretty much just had the attitude that we will just keep on living as normal as possible and get through whatever is thrown at us.

It's a bit surreal that it is all happening. It was especially weird to be in the hospital room for a several days without them bringing a baby in-and-out of the room. With 2 births in the last 27 months our last couple of hospital visits have been joyous occasions, but not this one!

 
Michael Brown said:
After my colonoscopy, doc said they're seeing more and more cases of younger people having these problems. Don't know if it's the processing or ingredients in the food over the last 20-30 years or what, but like Walkmen said, go get checked no matter how old you are. I had 2 polyps removed, which is apparently very young to have (35 here).

All the best to you and your family during this tough time Walk, you'll be in my thoughts.
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What were the signs that made you go to the doc at age 35? They still suggest a colonoscopy at age 50 right?

 
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TheWalkmen said:
Mr. Know-It-All said:
Wife was diagnosed with colon cancer - had her ascending colon removed - she was staged 3B at the age of 40. 6 months of chemo started about 6 weeks after her surgery. On March 17 she hit 4 years post op with no reoccurrence of cancer.

Helpful hints from the spouse of a colon cancer survivor. Love them, do not smother them. Be available but not invasive. Listen a lot, but don't be too inquisitive because the cancer patient already feels like they are in a fish bowl. Be heroic - do everything you can to make their day to day life easier - but don't expect praise for this - if anything expect criticism - because they in their mind don't want you taking over their life and the things they used to do. So it is appreciated, but it might feel like you are taking away some of the things they think they add value in.

Tell them and show them you love them - but give them space to be angry and resentful as well. Cancer sucks, it is okay to be angry and resentful.

Get a good oncologist - at such a young age check if it is Lynch Syndrome - which would impact the ability for you children to detect cancer earlier.

Mainly - know this can be beaten - and approach the battle positively even if at times you need to fake it.
Click to expand...
Thanks for the advice. I have been a bit unsure of how to act, whether to continually ask how she is, whether to not ask at all, etc. I ask every few days, but have pretty much just had the attitude that we will just keep on living as normal as possible and get through whatever is thrown at us.

It's a bit surreal that it is all happening. It was especially weird to be in the hospital room for a several days without them bringing a baby in-and-out of the room. With 2 births in the last 27 months our last couple of hospital visits have been joyous occasions, but not this one!
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I know with my wife it was best to show her I cared but don't overwhelm her with smothering. I cried privately when I first heard the news but I never let her see any other side of a positive, you got this baby! Attitude. Everyone is different though.

 
Michael Brown said:
After my colonoscopy, doc said they're seeing more and more cases of younger people having these problems. Don't know if it's the processing or ingredients in the food over the last 20-30 years or what, but like Walkmen said, go get checked no matter how old you are. I had 2 polyps removed, which is apparently very young to have (35 here).

All the best to you and your family during this tough time Walk, you'll be in my thoughts.
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This is a major contributing factor. Sadly, most Americans are malnourished from processed foods, it creates sluggish bowels and allows toxins to fester for way longer than they need to in areas like the colon. Similarly, esophageal cancer is on the rise - and can likely be correlated to how many people suffer from GERD (acid reflux, hearturn etc.) as a result of inflammatory diet.

Best of luck to you and your wife Walkmen

 
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Swing 51 said:
Michael Brown said:
After my colonoscopy, doc said they're seeing more and more cases of younger people having these problems. Don't know if it's the processing or ingredients in the food over the last 20-30 years or what, but like Walkmen said, go get checked no matter how old you are. I had 2 polyps removed, which is apparently very young to have (35 here).

All the best to you and your family during this tough time Walk, you'll be in my thoughts.
Click to expand...
What were the signs that made you go to the doc at age 35? They still suggest a colonoscopy at age 50 right?
Click to expand...
Yep. But I was having stomach cramps/abdominal pains on and off (mostly on) for a few weeks. Set up an appt with my endocrinologist because sometimes my thyroid throws my digestive system outta whack a little bit, so I initially chalked it up to that. But when it stayed persistently painful but nothing really changed in terms of bowel habits after several weeks (meaning that the pooping was normal, so it likely wasn't the thyroid), I went to the doc who immediately sent me for a CT scan and then eventually the colonoscopy. He said he wishes they'd change the recommended age to 40, and even lower for people with a family history.

 
Without grossing everyone out, was she experiencing a small amount or a lot of blood? I sporadically have blood - a lot of it. Enough to make the water look dark, dark red, not even watered down.

I've had a colonoscopy and they didn't see anything - a year ago. But I'm wondering if this is unusual and if something could have been missed.

 
ChopMeat said:
Without grossing everyone out, was she experiencing a small amount or a lot of blood? I sporadically have blood - a lot of it. Enough to make the water look dark, dark red, not even watered down.

I've had a colonoscopy and they didn't see anything - a year ago. But I'm wondering if this is unusual and if something could have been missed.
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I'm not a Dr. but it's time to see one again GB. Tomorrow.
 
TheWalkmen said:
bigbottom said:
Let people help you. Tell them what you need them to do. You will not be inconveniencing them. People want to do something, but often don't know what to do. By telling them precisely what you need (food delivery, babysitting, picking up the kids at activities, arranging regular girls' nights out, etc.), you are giving them a gift. You are giving them purpose and the ability to contribute. More often than not, trying to soldier on by yourselves and do everything on your own without putting anyone else out or inconveniencing them is what will ultimately drive them away. And that won't be any good for anyone.

My two cents.

Will be keeping you both, and the two kiddos, in my thoughts and prayers.
Click to expand...
Thanks for the solid advice. I've thought of you and your son and the strength you displayed, and have used it as inspiration over the last couple of weeks - and will continue to.
Click to expand...
That's really nice of you to say. Hang in there.

 
ChopMeat said:
Without grossing everyone out, was she experiencing a small amount or a lot of blood? I sporadically have blood - a lot of it. Enough to make the water look dark, dark red, not even watered down.

I've had a colonoscopy and they didn't see anything - a year ago. But I'm wondering if this is unusual and if something could have been missed.
Click to expand...
Do it again. Now. Also, check your kidneys and liver if nothing else shows.

 
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Many thoughts and prayers your way. Both my dad and father-in-law were diagnosed stage 4 just 6 weeks apart from each other. Talk about surreal... Since they lived in different areas of the country the course of treatment was different. My dad passed away and my father-in-law is 4 years treatment free.

Here are my suggestions and observations that will apply to almost everybody that has a loved one going through cancer treatment..

1. Nobody will advocate for your care more that you will-

Both had complications in the hospitals that could have been avoided- the doctors don't communicate and the nurses just follow orders.

2. You will feel like your Oncologist is God. He holds the answers, but don't be afraid to question him/her and get a second opinion from a different practice, not the same doctor in the same practice. Coursed of treamtents and surgery vary drastically.

3. Use an Oncologist that specializes in Colon Cancer and not a general oncologist.

4. Do research on clinical trials on your own- be prepared for anything.

95% of healthplans cover screening at 50 without any cost, copya, or deductible if they are preventative screens. If you have a family history the screen will be covered earlier without cost. Mine was at 37 and my wife at 35. You may have to do some arm twisting but both Blue Cross and United Healthcare covered these.

 
Our Gang said:
Many thoughts and prayers your way. Both my dad and father-in-law were diagnosed stage 4 just 6 weeks apart from each other. Talk about surreal... Since they lived in different areas of the country the course of treatment was different. My dad passed away and my father-in-law is 4 years treatment free.

Here are my suggestions and observations that will apply to almost everybody that has a loved one going through cancer treatment..

1. Nobody will advocate for your care more that you will-

Both had complications in the hospitals that could have been avoided- the doctors don't communicate and the nurses just follow orders.

2. You will feel like your Oncologist is God. He holds the answers, but don't be afraid to question him/her and get a second opinion from a different practice, not the same doctor in the same practice. Coursed of treamtents and surgery vary drastically.

3. Use an Oncologist that specializes in Colon Cancer and not a general oncologist.

4. Do research on clinical trials on your own- be prepared for anything.

95% of healthplans cover screening at 50 without any cost, copya, or deductible if they are preventative screens. If you have a family history the screen will be covered earlier without cost. Mine was at 37 and my wife at 35. You may have to do some arm twisting but both Blue Cross and United Healthcare covered these.
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Thanks for all of the info. :thumbup:

 
ChopMeat said:
Without grossing everyone out, was she experiencing a small amount or a lot of blood? I sporadically have blood - a lot of it. Enough to make the water look dark, dark red, not even watered down.

I've had a colonoscopy and they didn't see anything - a year ago. But I'm wondering if this is unusual and if something could have been missed.
Click to expand...
I wasn't clear about it in the OP, but the Dr. said the bleeding was not caused by the tumor, that is was just dumb luck that something else caused the bleeding and the tumor was found. He also commented the general practitioner needs to be thanked; the Dr. thought 9 out of 10 GP's wouldn't have recommended a colonoscopy based on the symptoms my wife had. But yeah, you should probably get back to the Dr.

 
Although the situation sucks it is great that you've caught it early. T&P for your family -- she'll beat this.

 
Prayers going out to your wife Walkman.

Had a friend who just went through an aggressive chemotherapy and radiation treatment. Said the amount it takes out of you is unimaginable. Don't be afraid to call on friends to help during these times so you yourself don't get overwhelmed.

Please keep us updated when possible.

 
One other thing I remembered last night -

when my wife was going through the chemo it was brutal. She'd be fine day of - start getting sick the next few days, stay sick for several days and just as she was feeling better it would be time for the next round. During that time she said she would never go through it again, she'd rather die. She has neuropathy to this day from the high doses of chemo - especially in her feet and hands...and right after her last treatment she complained that she would never go through it again.

But - the further she gets away from it, she has changed her tune and would do it all again just for the extra time she has got to spend with the kids.

The point of this is be prepared for fatalistic views and it not being worth it. Persevere - help her persevere - because it IS worth it.

Now from a spouse perspective - it is easy to google stuff and see survival rates based on staging...but when you look at them it is also easy to focus on the mortality rate as opposed to the survival rate. Don't dwell there. Just focus on getting her better and leave all the statistics alone. It is beatable and will continue to get better as medicine continues to advance. Wish I had a time machine for you because the near term will suck - but it will get better and she will beat this.

IM me if you have questions or start thinking no one understands, I'll listen and help with whatever experiences I can share if it helps you.

 
Mr. Know-It-All said:
One other thing I remembered last night -

when my wife was going through the chemo it was brutal. She'd be fine day of - start getting sick the next few days, stay sick for several days and just as she was feeling better it would be time for the next round. During that time she said she would never go through it again, she'd rather die. She has neuropathy to this day from the high doses of chemo - especially in her feet and hands...and right after her last treatment she complained that she would never go through it again.

But - the further she gets away from it, she has changed her tune and would do it all again just for the extra time she has got to spend with the kids.

The point of this is be prepared for fatalistic views and it not being worth it. Persevere - help her persevere - because it IS worth it.

Now from a spouse perspective - it is easy to google stuff and see survival rates based on staging...but when you look at them it is also easy to focus on the mortality rate as opposed to the survival rate. Don't dwell there. Just focus on getting her better and leave all the statistics alone. It is beatable and will continue to get better as medicine continues to advance. Wish I had a time machine for you because the near term will suck - but it will get better and she will beat this.

IM me if you have questions or start thinking no one understands, I'll listen and help with whatever experiences I can share if it helps you.
Click to expand...
Thanks! That does not sound like fun. We have not met with the oncologist yet, but the Dr who handled the surgery made it sound like she would have a light form of chemo. I guess she won't lose her hair or anything like that... do you know anything about the different levels of chemo?

 
TheWalkmen said:
Mr. Know-It-All said:
One other thing I remembered last night -

when my wife was going through the chemo it was brutal. She'd be fine day of - start getting sick the next few days, stay sick for several days and just as she was feeling better it would be time for the next round. During that time she said she would never go through it again, she'd rather die. She has neuropathy to this day from the high doses of chemo - especially in her feet and hands...and right after her last treatment she complained that she would never go through it again.

But - the further she gets away from it, she has changed her tune and would do it all again just for the extra time she has got to spend with the kids.

The point of this is be prepared for fatalistic views and it not being worth it. Persevere - help her persevere - because it IS worth it.

Now from a spouse perspective - it is easy to google stuff and see survival rates based on staging...but when you look at them it is also easy to focus on the mortality rate as opposed to the survival rate. Don't dwell there. Just focus on getting her better and leave all the statistics alone. It is beatable and will continue to get better as medicine continues to advance. Wish I had a time machine for you because the near term will suck - but it will get better and she will beat this.

IM me if you have questions or start thinking no one understands, I'll listen and help with whatever experiences I can share if it helps you.
Click to expand...
Thanks! That does not sound like fun. We have not met with the oncologist yet, but the Dr who handled the surgery made it sound like she would have a light form of chemo. I guess she won't lose her hair or anything like that... do you know anything about the different levels of chemo?
Click to expand...
Yes. That is good news - but even if they say no hair loss - expect some thinning. In my wife's case it was not even really noticeable for a long time - toward the end she was a little self conscious about it - but a "normal" person would not have been able to tell. My wife was pretty vain going into it so she was more worried about the hair loss than the actual cancer (not really, but you know what I mean). If your wife is worried about it, then it is a problem. Ask the oncologist or the people administering chemo for suggestions.

 
TheWalkmen said:
ChopMeat said:
Without grossing everyone out, was she experiencing a small amount or a lot of blood? I sporadically have blood - a lot of it. Enough to make the water look dark, dark red, not even watered down.

I've had a colonoscopy and they didn't see anything - a year ago. But I'm wondering if this is unusual and if something could have been missed.
Click to expand...
I wasn't clear about it in the OP, but the Dr. said the bleeding was not caused by the tumor, that is was just dumb luck that something else caused the bleeding and the tumor was found. He also commented the general practitioner needs to be thanked; the Dr. thought 9 out of 10 GP's wouldn't have recommended a colonoscopy based on the symptoms my wife had. But yeah, you should probably get back to the Dr.
Click to expand...
I would definitely thank that GP. Those kinds of doctors are worth their weight in gold.

 
bigbottom said:
Let people help you. Tell them what you need them to do. You will not be inconveniencing them. People want to do something, but often don't know what to do. By telling them precisely what you need (food delivery, babysitting, picking up the kids at activities, arranging regular girls' nights out, etc.), you are giving them a gift. You are giving them purpose and the ability to contribute. More often than not, trying to soldier on by yourselves and do everything on your own without putting anyone else out or inconveniencing them is what will ultimately drive them away. And that won't be any good for anyone.

My two cents.

Will be keeping you both, and the two kiddos, in my thoughts and prayers.
Click to expand...
This. My friend had a brain tumor and it was amazing to see people who loved him come together to do whatever it took. People signed up on Caring Bridge to drive him to treatments (an hour a way), cook meals, feed the dogs, whatever. People will want to help. Let them. Obviously take as much of of her plate as you can. Thoughts and prayers to you and your family for a great outcome with your wife.

 
Update: a port goes in today for chemo, and chemo starts tomorrow. She will get infusions through the port every other week for 6 months and also take 2 chemo pills a day for 7 days each time she has chemo treatment. Per the oncologist, the stage is 3B. I mentioned 3A earlier, but that was incorrect. Still very beatable. He also thinks there's some microsattelite instability in the tumor, so for now they think it is hereditary, which means our children will be getting colonoscopy's starting around age 20!

Speaking of children, my wife's ability to reproduce may be gone after chemo. We are not freezing eggs, but we're considering a pill called lupron that is supposed to protect the eggs. That's been one of the hardest parts for my wife so far; she wanted at least one more child, but that is pretty up in the air for now. Anyone have experience with lupron?

For the most part we have remained positive, we have been overwhelmed with support from family, friends, and my wife's former co-workers. She left Panera in September to be a stay at home mom. but they have raised money for us and have been tremendous with help in other ways as well!

 
bigbottom said:
Let people help you. Tell them what you need them to do. You will not be inconveniencing them. People want to do something, but often don't know what to do. By telling them precisely what you need (food delivery, babysitting, picking up the kids at activities, arranging regular girls' nights out, etc.), you are giving them a gift. You are giving them purpose and the ability to contribute. More often than not, trying to soldier on by yourselves and do everything on your own without putting anyone else out or inconveniencing them is what will ultimately drive them away. And that won't be any good for anyone.

My two cents.

Will be keeping you both, and the two kiddos, in my thoughts and prayers.
Click to expand...
Great advice here. We had a family tragedy last fall and things were chaotic for 5-6 weeks. We had many good friends who all wanted to help..the problem is that 4-5 people would bring over meals the same day and the food would go bad before we could eat it. After a week my wife talked to all the people who were helping out and gave them 1-2 days windows to bring meals so they were spaced out accordingly. Had other share the dog watching..one in the morning and one later in the day on a schedule as we were gone most of the time. As BB states everybody wants to help and unless instructed many people are doing the same thing. Take advantage of the help offered..just let them know what you need.

 
Positive thoughts my friend, have nothing but positive thoughts. She will beat this and your lives will ultimately be even more special because of it.

 
Thoughts and prayers.

Not to hijack, but my wife has advanced liver disease and we have a liver transplant evaluation at the Hospital of the University of Pennsylvania on Monday. I'm getting a little more apprehensive each day as the day approaches. The advice given to the OP is helpful to me as well. Thanks to all.

 
TheWalkmen said:
Update: a port goes in today for chemo, and chemo starts tomorrow. She will get infusions through the port every other week for 6 months and also take 2 chemo pills a day for 7 days each time she has chemo treatment. Per the oncologist, the stage is 3B. I mentioned 3A earlier, but that was incorrect. Still very beatable. He also thinks there's some microsattelite instability in the tumor, so for now they think it is hereditary, which means our children will be getting colonoscopy's starting around age 20!

Speaking of children, my wife's ability to reproduce may be gone after chemo. We are not freezing eggs, but we're considering a pill called lupron that is supposed to protect the eggs. That's been one of the hardest parts for my wife so far; she wanted at least one more child, but that is pretty up in the air for now. Anyone have experience with lupron?

For the most part we have remained positive, we have been overwhelmed with support from family, friends, and my wife's former co-workers. She left Panera in September to be a stay at home mom. but they have raised money for us and have been tremendous with help in other ways as well!
Click to expand...
Thanks for the update and for sharing the news about the kindnesses of others. So nice to hear. TPW to her as she begins this battle; it sounds very positive.

 
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