recurrent met question

mikew42 · May 2004

Hello everyone, I have stage 4 cc with a small met to the liver. It can be surgically removed, but we are waiting to see how chemo effects it. Here's the question for you guys, once we get rid of this tumor i've seen that the 5 year survival rate goes up to 25-40%. Why is this number so low? Since I will get a PET scan every three months, we will find any recurrence when they are small. Why can't they just remove them as they pop up? I understand some recurrence might be unoperable, are most inoperable, or do recurrent colon cancer grow a lot faster than the original tumor? I've done much rsearch but haven't found much info on this and won't see my onc for two weeks.

Thanks to any response in andvance. You are all wonderful people, especially those don't need to be here but are here to help others through this.

carmen07 · May 2004

Hi Mike. I am new to the site. My husband is 50 and had two small met to liver. He just completed 8 rounds of oxiplatin/fudr. We just completed a Cat scan and Pet scan. One tumor can not be seen at all, and the other is barely visible.
We met with a surgion this past week on removal. Since his were on the right side they want to remove the right lobe. The surgeon feels in his case that this could be a cure. He would than have two treatments after surgery. We are meeting with our oncologist this week. I will ask that question for you. I asked about the reoccurence rate and was suprised that it was 45% to 50% with the surgery. My question I am not clear on is surgery the best solution to cure. Is the survival rate the same for surgery vs. non surgery. I believe the theory is to remove for cure.

carmen07 · May 2004

Hi Mike. I am new to the site. My husband is 50 and had two small met to liver. He just completed 8 rounds of oxiplatin/fudr. We just completed a Cat scan and Pet scan. One tumor can not be seen at all, and the other is barely visible.
We met with a surgion this past week on removal. Since his were on the right side they want to remove the right lobe. The surgeon feels in his case that this could be a cure. He would than have two treatments after surgery. We are meeting with our oncologist this week. I will ask that question for you. I asked about the reoccurence rate and was suprised that it was 45% to 50% with the surgery. My question I am not clear on is surgery the best solution to cure. Is the survival rate the same for surgery vs. non surgery. I believe the theory is to remove for cure.

StacyGleaso · May 2004

Hi Mike,

As far as the survival rate, I don't know what to say. Just don't lay any bets on any of it...everyone is different, and there truly are a lot of success stories. Plus, if you think about it, 25% of 4000 people is 1000 people. (of course, if you think of it like 1 in 4 people, that doesn't sound as impressive!) 1000 people is a lot, and that is the LOW end of the scale. I think the reason the tumors aren't removed immediately is that they can be in a location which doesn't allow a high success rate, or they can be very microscopic making them difficult to operate, or the type of the tumor and its reaction to chemo may need to be monitored prior to surgery.

I think the most important thing is early detection, and once that is established, continued monitoring is important.

Hope I helped,

Stacy

ron50 · May 2004

Hi Mike,I was stage 3 with 6 nodes involved,when i asked my surgeon about the prognosis he suggested it would probably met to liver. We discussed this in depth and in his experience only around 15 percent of mets were successfully operable due mainly to position ie inoperable or in oth lobes,the other problem is that the mets are often what they describe as salt and pepper that is one or two larger visible mets and hundreds of micro mets. That was back in 98 and fortunately I had no mets and remain ca free. The main change since then has been in the chemo used as it appears to clean up the micro mets so I guess now if it is operable you stand a good chance of beating it ,good luck Ron.

sallyjoy · May 2004

Mike, I am interested in your question as it directly applys to my hubby also... Stage 4 cc with 1 met to the liver. His met is about 1.8cm x 2.5 cm, but it is located in the caudate lobe apparently very close to the major vessels. The surgeon suggested chemo first so that he may be able to take less of the liver if the tumor shrinks. Right now, they'd have to take half. I worry about chemo (hubby just started folfox & avastin yesterday) but since it is systemic, I am hoping too that it has chances to kill off anything that may be "floating around out there"... and possibly take out less liver. After surgery, he'll have more chemo then. I was devastated when looking up prognosis for stge 4... surprisingly, not a single dr. involved has even so much as mentioned it to us and we have quite a lot of DR.s giving us hope and using the word cure, so that lifted my spirits greatly. To this day i have never given hubby prognosis stats... He does not really want to know although he does know it could be of fatal nature. I think stats would bring him down too much for his own good... so far he's been more upbeat that I could have ever imagined. I do know I have read online and told by my personal gastro. dr. that he has very good odds for a cure if there is only one met that is operable... so I hang onto that. Online I read the same stats of about 25-50% chance for cure.... To me that is wonderful - sure beats the odds of stage 4 in general, I think. Our surgeon at Hopkins said there is a likelihood of something like 70% chnace of recurrance in these types of cancer... maybe that is why the odds seem low to you ... my father in law also had cc - with resection only 10 yrs ago. was considered cured after 5 yrs, but it recurred 8 yrs later, but he's been on chemo only with 3 met sites - no operations and is holding his own now for over 2 years. In fact he is much healthier and active than he was 2 years ago. The bottom line is people do survive stage four and people do live with cancer. That's what's most important for me to know. Please ekeep in touch with me as I'd like to hear how you are doing. What chemo will you be on? God Bless and hang in there

Sally Jo

StacyGleaso · May 2004

sallyjoy said:
Mike, I am interested in your question as it directly applys to my hubby also... Stage 4 cc with 1 met to the liver. His met is about 1.8cm x 2.5 cm, but it is located in the caudate lobe apparently very close to the major vessels. The surgeon suggested chemo first so that he may be able to take less of the liver if the tumor shrinks. Right now, they'd have to take half. I worry about chemo (hubby just started folfox & avastin yesterday) but since it is systemic, I am hoping too that it has chances to kill off anything that may be "floating around out there"... and possibly take out less liver. After surgery, he'll have more chemo then. I was devastated when looking up prognosis for stge 4... surprisingly, not a single dr. involved has even so much as mentioned it to us and we have quite a lot of DR.s giving us hope and using the word cure, so that lifted my spirits greatly. To this day i have never given hubby prognosis stats... He does not really want to know although he does know it could be of fatal nature. I think stats would bring him down too much for his own good... so far he's been more upbeat that I could have ever imagined. I do know I have read online and told by my personal gastro. dr. that he has very good odds for a cure if there is only one met that is operable... so I hang onto that. Online I read the same stats of about 25-50% chance for cure.... To me that is wonderful - sure beats the odds of stage 4 in general, I think. Our surgeon at Hopkins said there is a likelihood of something like 70% chnace of recurrance in these types of cancer... maybe that is why the odds seem low to you ... my father in law also had cc - with resection only 10 yrs ago. was considered cured after 5 yrs, but it recurred 8 yrs later, but he's been on chemo only with 3 met sites - no operations and is holding his own now for over 2 years. In fact he is much healthier and active than he was 2 years ago. The bottom line is people do survive stage four and people do live with cancer. That's what's most important for me to know. Please ekeep in touch with me as I'd like to hear how you are doing. What chemo will you be on? God Bless and hang in there
Sally Jo

Sally Jo,

You might want to contact Galliano through this site. I recently "met" her and her husband. He just had his liver surgery on April 23rd, and his too was located near a major vein (portal vein). And that whole "statistics thing" needs to be only numbers, and nothing more. They are not people. Your hubby's docs are right to speak of cure and positive outcomes, than to tell of the bad side of things. Tell him to stay strong.

I was stage 4, diagnosed 3 yrs ago when I was 33. The doc removed 40% of my liver during my 10 hr surgery. Today, I am fine. Sure something could happen to change that, but the following could also happen:

(1) I could get run over by a bus

(2) I could get struck by lightening

(3) I could win the lottery (but I guess buying tickets would really increase my odds of that!)

(4) We could all live happily ever after, taking each day as it comes, and making it through each of life's challenges the best way we could.

Personally, I'm voting to pursue #4!

Stay strong,

Stacy

carmen07 · May 2004

StacyGleaso said:
Sally Jo,

You might want to contact Galliano through this site. I recently "met" her and her husband. He just had his liver surgery on April 23rd, and his too was located near a major vein (portal vein). And that whole "statistics thing" needs to be only numbers, and nothing more. They are not people. Your hubby's docs are right to speak of cure and positive outcomes, than to tell of the bad side of things. Tell him to stay strong.

I was stage 4, diagnosed 3 yrs ago when I was 33. The doc removed 40% of my liver during my 10 hr surgery. Today, I am fine. Sure something could happen to change that, but the following could also happen:

(1) I could get run over by a bus

(2) I could get struck by lightening

(3) I could win the lottery (but I guess buying tickets would really increase my odds of that!)

(4) We could all live happily ever after, taking each day as it comes, and making it through each of life's challenges the best way we could.

Personally, I'm voting to pursue #4!

Stay strong,

Stacy

Stacy
I agree with you on cure. Our doctors use the word cure also. They told us that only a small percentage of patients can have surgery of the liver. It depends on where they are located and very important if cancer has spread to other parts of the body. That is why they treated my husband first. We never had his lesions biopsy. We went with the chemo. Since one lesion has dissapeared and the other very tiny the surgeon told us that it had to be cancer or it would not have responded to the chemo. His lesions were .8mm and 1.0. Both in the right area. They can not remove around the lesion since one is deep. I am nervous about him having the entire right lobe removed. I read that you had 40%. How long did it take you to recover from surgery.
We have already met with the surgeon and had a cat and pet scan. We meet with the onclogist this week. The surgeon wants him to have another colonscopy since his first one they were never able to see his entire colon. He was completly blocked. He had the tumor removed in october 03. I was surprised when he told me that the cat scans and pet will not always show the tumors in the colon. He was going to discuss with our doctor in same group. Feels it is important to have colonscopy. Did you have colonscopy before your surgery. They are looking to operate in 4 weeks.

carmen07 · May 2004

sallyjoy said:
Mike, I am interested in your question as it directly applys to my hubby also... Stage 4 cc with 1 met to the liver. His met is about 1.8cm x 2.5 cm, but it is located in the caudate lobe apparently very close to the major vessels. The surgeon suggested chemo first so that he may be able to take less of the liver if the tumor shrinks. Right now, they'd have to take half. I worry about chemo (hubby just started folfox & avastin yesterday) but since it is systemic, I am hoping too that it has chances to kill off anything that may be "floating around out there"... and possibly take out less liver. After surgery, he'll have more chemo then. I was devastated when looking up prognosis for stge 4... surprisingly, not a single dr. involved has even so much as mentioned it to us and we have quite a lot of DR.s giving us hope and using the word cure, so that lifted my spirits greatly. To this day i have never given hubby prognosis stats... He does not really want to know although he does know it could be of fatal nature. I think stats would bring him down too much for his own good... so far he's been more upbeat that I could have ever imagined. I do know I have read online and told by my personal gastro. dr. that he has very good odds for a cure if there is only one met that is operable... so I hang onto that. Online I read the same stats of about 25-50% chance for cure.... To me that is wonderful - sure beats the odds of stage 4 in general, I think. Our surgeon at Hopkins said there is a likelihood of something like 70% chnace of recurrance in these types of cancer... maybe that is why the odds seem low to you ... my father in law also had cc - with resection only 10 yrs ago. was considered cured after 5 yrs, but it recurred 8 yrs later, but he's been on chemo only with 3 met sites - no operations and is holding his own now for over 2 years. In fact he is much healthier and active than he was 2 years ago. The bottom line is people do survive stage four and people do live with cancer. That's what's most important for me to know. Please ekeep in touch with me as I'd like to hear how you are doing. What chemo will you be on? God Bless and hang in there
Sally Jo

Sally
I see that your husband just started his first rounds of chemo. I hope you had a good experience. I was really nervous the first few times. My husband is the same way as far as his diagnose. He is really upbeat. I feel having a positive attitude is really important and feeling comfortable with your doctors. I have read a lot of scary results also on the internet. Your doctors at Hopkins gave a higher stat than our surgeon at Yale. He told us a reoccurrence of 45 to 50%. We are waiting on a date for surgery of his liver but we meet with our oncologist this week. Our onclogist told my husband that this is the best route for cure. I really like that word. Best of luck to you and your husband. Remember - Failure is not an option!!

StacyGleaso · May 2004

carmen07 said:
Stacy
I agree with you on cure. Our doctors use the word cure also. They told us that only a small percentage of patients can have surgery of the liver. It depends on where they are located and very important if cancer has spread to other parts of the body. That is why they treated my husband first. We never had his lesions biopsy. We went with the chemo. Since one lesion has dissapeared and the other very tiny the surgeon told us that it had to be cancer or it would not have responded to the chemo. His lesions were .8mm and 1.0. Both in the right area. They can not remove around the lesion since one is deep. I am nervous about him having the entire right lobe removed. I read that you had 40%. How long did it take you to recover from surgery.
We have already met with the surgeon and had a cat and pet scan. We meet with the onclogist this week. The surgeon wants him to have another colonscopy since his first one they were never able to see his entire colon. He was completly blocked. He had the tumor removed in october 03. I was surprised when he told me that the cat scans and pet will not always show the tumors in the colon. He was going to discuss with our doctor in same group. Feels it is important to have colonscopy. Did you have colonscopy before your surgery. They are looking to operate in 4 weeks.

Hi Carmen,

The part of the liver being affected was discovered during the surgery. I was supposed to be in the hospital for 8 to 10 days, and was out in 6 days. They wanted me to be off work for 4 to 5 months, I went back after 3 months. I cannot explain how I bounced back so well...granted, I was 33 when I had my surgery, which may have played a large role!

I did have a colonoscopy prior to surgery. My original tumor was about 2.5 inches. The liver is one of those organs which can regenerate. So, taking part of it isn't totally tragic, as the remaining side will compensate for the loss and pick up the slack to get the job done. My gallbladder was also taken out...apparently it is located in such a position that made it hard to get to the liver to get the resection done.

I am feeling great today, and only have this wonderful scar to remind me of what I went through. You know the phrase, "What doesn't kill us only makes us stronger"?...well, I'm feeling like Hercules (except for being a "girl" version!).

Don't forget to take care of yourself as well...it's easy to let your health get "back-burnered" while caregiving for someone else...

All the best,

Stacy

sallyjoy · May 2004

carmen07 said:
Sally
I see that your husband just started his first rounds of chemo. I hope you had a good experience. I was really nervous the first few times. My husband is the same way as far as his diagnose. He is really upbeat. I feel having a positive attitude is really important and feeling comfortable with your doctors. I have read a lot of scary results also on the internet. Your doctors at Hopkins gave a higher stat than our surgeon at Yale. He told us a reoccurrence of 45 to 50%. We are waiting on a date for surgery of his liver but we meet with our oncologist this week. Our onclogist told my husband that this is the best route for cure. I really like that word. Best of luck to you and your husband. Remember - Failure is not an option!!

Carmen,Thanks for your encouragement! It does sometime get us both down. esterday, hubby was not feeling too well... No energy, but wanting to do things as he's really tired of laying around. Makes me feel guilty when I am at work (like now) cause I know he's home all alone. I really like the word CURE too! I am amazed at the people here... I wish I had found this site sooner. The first month was really hell, not knowing what to expect and not understanding. The people here are just so great. I try to fill my husband in on the site and the people and read him their stories. Sometimes he listens... sometimes he doesn't really want to think about it... but at least one of us is paying attention

How did it go with you on chemo? Did it get worse as time went on? This 1st round didn't seem too bad, besides the fatigue... some people tell me awful things like... it'll just get worse as he goes on... or my wife was so sick.. I think chemo killed her... I don't know what to say to things like that.. Do they want to freak me out or what?! Please keep in touch. I'd like to hear about your progress.... email me here or at mentzers@pa.net. that goes for anyone one else who cares to share there thoughts with me

Good luck to you and everyone else here. God Bless us Every One!
Sally Jo

sallyjoy · May 2004

StacyGleaso said:
Sally Jo,

You might want to contact Galliano through this site. I recently "met" her and her husband. He just had his liver surgery on April 23rd, and his too was located near a major vein (portal vein). And that whole "statistics thing" needs to be only numbers, and nothing more. They are not people. Your hubby's docs are right to speak of cure and positive outcomes, than to tell of the bad side of things. Tell him to stay strong.

I was stage 4, diagnosed 3 yrs ago when I was 33. The doc removed 40% of my liver during my 10 hr surgery. Today, I am fine. Sure something could happen to change that, but the following could also happen:

(1) I could get run over by a bus

(2) I could get struck by lightening

(3) I could win the lottery (but I guess buying tickets would really increase my odds of that!)

(4) We could all live happily ever after, taking each day as it comes, and making it through each of life's challenges the best way we could.

Personally, I'm voting to pursue #4!

Stay strong,

Stacy

Thanks Stacy! I'll have to look them up! You are so right when it come to stats. It was the first thing I looked for when I heard the Big C word, before we even knew what stage.. and of course after staging I just fell to pieces, but I do much better now. As long as someone out there has survived, hubby has an equal chance too!
I read online that they can remove up to 75% of your liver and still be OK. Apparently, the liver regenerates and is the only organ to do that. Most mets go to the liver 1st, so I just figure God knew what he was doing when he made that organ

Glad to hear things went well with your surgery! How long was recovery? Do you have any advice about how to make it easier on hubby when the time comes? Was getting up and down, stairs, etc.. a problem for you? Thanks for any info

God Bless and keep in touch!
Sally Jo mentzers@pa.net

carmen07 · May 2004

sallyjoy said:
Carmen,Thanks for your encouragement! It does sometime get us both down. esterday, hubby was not feeling too well... No energy, but wanting to do things as he's really tired of laying around. Makes me feel guilty when I am at work (like now) cause I know he's home all alone. I really like the word CURE too! I am amazed at the people here... I wish I had found this site sooner. The first month was really hell, not knowing what to expect and not understanding. The people here are just so great. I try to fill my husband in on the site and the people and read him their stories. Sometimes he listens... sometimes he doesn't really want to think about it... but at least one of us is paying attention How did it go with you on chemo? Did it get worse as time went on? This 1st round didn't seem too bad, besides the fatigue... some people tell me awful things like... it'll just get worse as he goes on... or my wife was so sick.. I think chemo killed her... I don't know what to say to things like that.. Do they want to freak me out or what?! Please keep in touch. I'd like to hear about your progress.... email me here or at mentzers@pa.net. that goes for anyone one else who cares to share there thoughts with me Good luck to you and everyone else here. God Bless us Every One!
Sally Jo

Sally
Tried to email you back, and it failed. Say they can't find your name. My husband did fantastic on Chemo. He took one day a week offof work. Thursday is his day to go for Chemo. He comes home with a pump and nurse comes on Sat. He took anti nausea meds in the begginning. Did not take them at all after a while. His regime with Chemo is one week on and one week off. His blood counts remained excellant. He is taking Oxiplatin/fudr. After 8 treatments the lession that is 8.mm is gone and the 1.0 is barely visible. He had a pet scan also.
Over time he became more tired and the side effects became more stronger and longer lasting from the oxiplatin. He is very sensitive to cold.
After a week the side effects go away. He is very tired during treatment and also both of us feel that the tiredness is stress. I am so tired some nights. Well hope I can write you soon, and go in the chat room. I am so happy to have found this site. I have been looking for so long on the internet. Finally found one. Its been really helpful. Hope I can help someone out also.

jana11 · June 2004

sallyjoy said:
Mike, I am interested in your question as it directly applys to my hubby also... Stage 4 cc with 1 met to the liver. His met is about 1.8cm x 2.5 cm, but it is located in the caudate lobe apparently very close to the major vessels. The surgeon suggested chemo first so that he may be able to take less of the liver if the tumor shrinks. Right now, they'd have to take half. I worry about chemo (hubby just started folfox & avastin yesterday) but since it is systemic, I am hoping too that it has chances to kill off anything that may be "floating around out there"... and possibly take out less liver. After surgery, he'll have more chemo then. I was devastated when looking up prognosis for stge 4... surprisingly, not a single dr. involved has even so much as mentioned it to us and we have quite a lot of DR.s giving us hope and using the word cure, so that lifted my spirits greatly. To this day i have never given hubby prognosis stats... He does not really want to know although he does know it could be of fatal nature. I think stats would bring him down too much for his own good... so far he's been more upbeat that I could have ever imagined. I do know I have read online and told by my personal gastro. dr. that he has very good odds for a cure if there is only one met that is operable... so I hang onto that. Online I read the same stats of about 25-50% chance for cure.... To me that is wonderful - sure beats the odds of stage 4 in general, I think. Our surgeon at Hopkins said there is a likelihood of something like 70% chnace of recurrance in these types of cancer... maybe that is why the odds seem low to you ... my father in law also had cc - with resection only 10 yrs ago. was considered cured after 5 yrs, but it recurred 8 yrs later, but he's been on chemo only with 3 met sites - no operations and is holding his own now for over 2 years. In fact he is much healthier and active than he was 2 years ago. The bottom line is people do survive stage four and people do live with cancer. That's what's most important for me to know. Please ekeep in touch with me as I'd like to hear how you are doing. What chemo will you be on? God Bless and hang in there
Sally Jo

Hi. I am a stage 4 ca patient - 1 met to lung. I am also a young person - 34yrs old, and a doctor. With that being said... I want to tell you my take on cure rates and statistics. Both myself (in time) and my providers believe the stats don't mean a thing. They look at a large overview and can't take into account the particular circumstances of individual patients. A cure rate of 20% feels low - unless you are one of the 20 in 100 that is 100% cured! Don't get crazy with the numbers - because they really don't matter.

Enjoy all moments and keep your head up. When you feel down, no matter how strong you think you are, ask for help.

My husband is also a doctor. I think he has more trouble than I do. He is also strong. Together we are doing great, considering what is on our plate.

Appreciate everything good, and be kind to others. Make all moments count. Don't waste negative energy. If the stats make you feel good and strong, then read them. If they don't then pick a great doctor you have faith in to worry about the stats.

Research all information, to avoid any mistakes. Be an informed patient. But memorizing trends and cure rates don't matter. Believe in your cure, 100%.

THis is what I try to do. It is not easy. I am also a typical woman who likes to vent negative energy, but I am trying to stop.

Best of luck to you and don't loose the faith.
jana

recurrent met question

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