Lots of Questions for you all

themis01
themis01 Member Posts: 167
edited March 2014 in Colorectal Cancer #1
Well, we have had two different onc. appts and here is what I am getting out of the two. My mom had level one colon cancer spread to the liver and abdomen cavity. Supposedly pretty rare to go that route. There are several places but know large tumors. The places are freckle sized and they called them "implants". She is starting on Chemo next week. The regime is Folox- 6 every 2 weeks and Avastin. Anyone with information on these drugs and success stories please let me know. Basically we kept hearing "treatable not cureable". I understand this concept and wonder if we are unrealistic to think she could one day be cancer - free. I have read several stories online about people being cancer free even at level 4 diagnosis. Also how long can something like this just continue on to be treated. I mean could she hypothetically have chemo every year if it comes back and still live a normal life and/or lifespan. She has a kick butt attitude and is extremely healthy in every other way. I just started getting abd vibes form the onc. like they just didn't want us to be too positive. Like maybe they thought we were in denial. The thing is I know 2 people that are cancer free for 5 years after level 4 ovarian cancer. Please any insight, stories, advice would be great. ALso the one onc. seemed to think liver surgery is pointless since the tumors will eventually come back. Any opinions on this?

Comments

  • mikew42
    mikew42 Member Posts: 114 Member
    #2
    I wish doctors would stop saying treatable but incurable. Stats say anywhere from 5-9% cure for stage 4. I am a stage 4 survivor. I had mets to the liver and went through 7 months of chemo which included Avastin. My tumor on the liver shrunk 50% to 1 cm and then had radiofrequency ablation last October. Since then, no sign of disease and CEA is less than 0.5. My onc is very pleased and is even talking about potential cure. So, it is cureable, even at stage 4. I know I have a long way to go,4 years 9 months to be exact. I think your mom's kick butt attitude will go along way. As far as not doing surgery because they will eventually come back, not true! My advice would be to go to a major cancer center or get a second opinion and get an onc who is willing to fight with you. Good luck and keep us posted. Mike
  • rejoyous
    rejoyous Member Posts: 259
    #3
    From my perspective, you don't sound as though you're in denial. You sound like you want to know the whole spectrum of possibilities, so you and your mother can bring that all-important positive energy with you on your journey. I am in favor of anything that helps keep you two strong and optimistic.

    This site is full of people with positive outcomes despite bleak statistics. Also, I keep recommending Lance Armstrong's book, It's Not About the Bike. He didn't have colon cancer but he sure looked the bleak statistics in the face and came out on top. Courage and hope are as important as the drugs.
  • kerry
    kerry Member Posts: 1,313 Member
    #4
    I agree with Mike. Run don't walk to the nearest major cancer center for treatment.

    Your mom's positive attitude is a big part of this battle against colon cancer. We will hold you and your mom in our thoughts and prayers.

    Kerry
  • themis01
    themis01 Member Posts: 167
    #5
    kerry said:

    I agree with Mike. Run don't walk to the nearest major cancer center for treatment.

    Your mom's positive attitude is a big part of this battle against colon cancer. We will hold you and your mom in our thoughts and prayers.

    Kerry

    The treatment was determined by an onc at Wahington Hospital Treatment Center in DC and University of Virginia Cancer Center. Both of these doctors agreed on the Folfox-6 + Avastin chemo. Both of these cancer centers are rated by US News and World Report in the top 50 Cancer Centers. I don't know maybe I just thought they would be more positive but maybe they just realistically can't be??? I guess another question am wondering is how long can people live continually getting treatment for this disease.
  • tkd3g
    tkd3g Member Posts: 767
    #6
    themis01 said:

    The treatment was determined by an onc at Wahington Hospital Treatment Center in DC and University of Virginia Cancer Center. Both of these doctors agreed on the Folfox-6 + Avastin chemo. Both of these cancer centers are rated by US News and World Report in the top 50 Cancer Centers. I don't know maybe I just thought they would be more positive but maybe they just realistically can't be??? I guess another question am wondering is how long can people live continually getting treatment for this disease.

    I don't know the answer to the life long chemo question. Perhaps others can help you with that.

    As for the doctors comments. My husband works in the medical field. He is not a physician, but works with them all day. They have to tell you what they tell you. God forbid they don't tell you something. THey are covering their ****. They read statistics and medical journals filled with "studies". Hey, doc, how about coming here and talking to the people? We are the ones going thru it.

    I was diagnosed with stage 3 rectal cancer 1 year ago this month. Chemoradiation, surgery, and chemo again. ( 8 months chemo total). I heard those words too. "Treatable"

    Forget that. Never Never Give Up.

    Mom sounds like me. Great attitude will take you a long way. Stay positive as much as possible.

    Check out Emily's juicing program. ( 2behealed) I don't know why everyone isn't juicing? It sure can't hurt you and potentially has wonderful effects.

    Sorry for the rambling.

    Listen to the docs, but remember that your mom is an individual. She is not a statistic. There are plenty of people here that beat those odds.

    Bless you and mom.

    Barb
  • Kanort
    Kanort Member Posts: 1,272 Member
    #7
    Hi,

    I'm sorry to hear about your mom's recurrence. There are many stage 4 survivors. Help your mom stay focused on positive attitude. Also, the fact that her overall health is so good will be to her benefit.

    Keep us informed on her progress.

    Kay
  • Kanort
    Kanort Member Posts: 1,272 Member
    #8
    Hi,

    I'm sorry to hear about your mom's recurrence. There are many stage 4 survivors. Help your mom stay focused on positive attitude. Also, the fact that her overall health is so good will be to her benefit.

    Keep us informed on her progress.

    Kay
  • steved
    steved Member Posts: 834 Member
    #9
    Sorry to hear of your predicament but you have come tot hte right place for support and advise. There are a couple of us here who are both doctors and cancer survivors and I feel one thing we can add is to help peopple understand why docs say the things they do. There is a need to be honest and frank with patients- both for ethical as well as legal reasons. there is no use telling people they will beat an illness if the chances are small. This needs to be weighed up witht he need to istil hope in patients and is a difficult line to tread. Your docs are simply being honest with you- the stats for stage four with multiple nonresectabe mets (liver mets are more resectable if superficial on the liver, are single and have clear boundaries- multiple small, dee[ ones can't be reliably removed with surgery)aren't great but no stats will ever be 100%. This means there is always hope and there is no knowing if an individual willpart of the 95% or the 5%- this is in the lap of fate and all you can do is to do every thing you can to increase your chances to be int he survivor group. tat is to have the treatment to the best of your ability, stay positive, stay informed and fight.

    Either way- whether this beast does in the end win or you beat it- quality of life is key. Spend some time thnking about how your mom would want to spend her time if it is limited and do everything you can to help her achieve that. Try to not let the cancer and the treatmetns be her whole life as they can tend to take over things. Try to do 'normal'things that she has always enjoyed and bring her happiness.

    Soe of your questions are unfortunately unknowable just now. Yes peopel can go on and have years of chemo on various regimes with the aim of cure or extending life or improving quality of life. Yes people can beat stage four cancer- there are many here who can testify to that. It is difficult to compare it to other cancers eg ovarian as each behaves differently and has different prognoses. Never lose faith and hope and your desire to fight this thing but also never lose sight on the most important thing ansd that is to help your mother live her life to its fullest no matter how long it is. When quantity of life is threatened quality becomes all the more important.
    I hope this helpful and do keep asking questions- knowledge and understanding are incredibly empowering in this battle,
    Steve
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #10
    steved said:

    Sorry to hear of your predicament but you have come tot hte right place for support and advise. There are a couple of us here who are both doctors and cancer survivors and I feel one thing we can add is to help peopple understand why docs say the things they do. There is a need to be honest and frank with patients- both for ethical as well as legal reasons. there is no use telling people they will beat an illness if the chances are small. This needs to be weighed up witht he need to istil hope in patients and is a difficult line to tread. Your docs are simply being honest with you- the stats for stage four with multiple nonresectabe mets (liver mets are more resectable if superficial on the liver, are single and have clear boundaries- multiple small, dee[ ones can't be reliably removed with surgery)aren't great but no stats will ever be 100%. This means there is always hope and there is no knowing if an individual willpart of the 95% or the 5%- this is in the lap of fate and all you can do is to do every thing you can to increase your chances to be int he survivor group. tat is to have the treatment to the best of your ability, stay positive, stay informed and fight.

    Either way- whether this beast does in the end win or you beat it- quality of life is key. Spend some time thnking about how your mom would want to spend her time if it is limited and do everything you can to help her achieve that. Try to not let the cancer and the treatmetns be her whole life as they can tend to take over things. Try to do 'normal'things that she has always enjoyed and bring her happiness.

    Soe of your questions are unfortunately unknowable just now. Yes peopel can go on and have years of chemo on various regimes with the aim of cure or extending life or improving quality of life. Yes people can beat stage four cancer- there are many here who can testify to that. It is difficult to compare it to other cancers eg ovarian as each behaves differently and has different prognoses. Never lose faith and hope and your desire to fight this thing but also never lose sight on the most important thing ansd that is to help your mother live her life to its fullest no matter how long it is. When quantity of life is threatened quality becomes all the more important.
    I hope this helpful and do keep asking questions- knowledge and understanding are incredibly empowering in this battle,
    Steve

    I have seen multiple doctors/specialists/oncologists and surgeons in the past 2 years. Every single one of them I put the question of cure to. Every one of them told me that my cancer was treatable. They all referred to the "getting thru 5 years without mets" being "almost" considered curable. So, I agree with Steve that they all are adhering to ethical procedures.
    In fact my present GP...a wonderfull lady doctor..told me "off the record" that very few bowel cancer patients are ever told of the possibility of total cure. Many in the stage 1 category are told there is a high probability of a total cure because the cancer was confined insude the bowel. As we go on to stage 2 where the cancer has invaded or gone outside the bowel wall the doctors seem to shy away from the "total cure outlook" until many years have passed...more than 5-7.
    My lady doctor told me that because it is our own cells gone haywire and our bodies continually make new cells there is no guarantee that these new cells will all be normal. Doctors never give us a straight answer for the reasons Steve has put forward...and will be unlikely to until cancer has a real cure. In the meantime we all hope that medical advances will find that cure..and while we wait we have chemo/radiation and alternative medicines to keep the onslaught of these haywire cells at bay!
    The comfort we have is knowing that we have dear friends here in all stages of the disease that ARE winning the battle!
    Tell your mum to keep KICKING BUTT!!!!!!
    luv kanga n Jen
  • jana11
    jana11 Member Posts: 705
    #11
    steved said:

    Sorry to hear of your predicament but you have come tot hte right place for support and advise. There are a couple of us here who are both doctors and cancer survivors and I feel one thing we can add is to help peopple understand why docs say the things they do. There is a need to be honest and frank with patients- both for ethical as well as legal reasons. there is no use telling people they will beat an illness if the chances are small. This needs to be weighed up witht he need to istil hope in patients and is a difficult line to tread. Your docs are simply being honest with you- the stats for stage four with multiple nonresectabe mets (liver mets are more resectable if superficial on the liver, are single and have clear boundaries- multiple small, dee[ ones can't be reliably removed with surgery)aren't great but no stats will ever be 100%. This means there is always hope and there is no knowing if an individual willpart of the 95% or the 5%- this is in the lap of fate and all you can do is to do every thing you can to increase your chances to be int he survivor group. tat is to have the treatment to the best of your ability, stay positive, stay informed and fight.

    Either way- whether this beast does in the end win or you beat it- quality of life is key. Spend some time thnking about how your mom would want to spend her time if it is limited and do everything you can to help her achieve that. Try to not let the cancer and the treatmetns be her whole life as they can tend to take over things. Try to do 'normal'things that she has always enjoyed and bring her happiness.

    Soe of your questions are unfortunately unknowable just now. Yes peopel can go on and have years of chemo on various regimes with the aim of cure or extending life or improving quality of life. Yes people can beat stage four cancer- there are many here who can testify to that. It is difficult to compare it to other cancers eg ovarian as each behaves differently and has different prognoses. Never lose faith and hope and your desire to fight this thing but also never lose sight on the most important thing ansd that is to help your mother live her life to its fullest no matter how long it is. When quantity of life is threatened quality becomes all the more important.
    I hope this helpful and do keep asking questions- knowledge and understanding are incredibly empowering in this battle,
    Steve

    Hi, I too am so sorry for your mothers situation. Like Steve, I am a doctor and cancer survivor. I am 34 years old with stage 4 rectal cancer.

    I have a 30% chance of being cured after my lung met was removed, per my onc. at MD Anderson. The studies are dated and don't apply to individuals.
    I live my life as though I am 100% cured. Each person is either 100% or 0% cured. My MDA oncologist told my husband to stop worring about statistics - he's a very smart man.
    KEEP THE POSITIVE ATTITUDE UP!!!!!!!! New meds are being developed all the time. And colon cancer is a big one for research funding. Lance Armstrong is the perfect example - read the book. He had VERY small chances of cure, yet there he is. Fight and live. And yes, keep quality of life maximized.

    Take care, jana
  • themis01
    themis01 Member Posts: 167
    #12
    jana11 said:

    Hi, I too am so sorry for your mothers situation. Like Steve, I am a doctor and cancer survivor. I am 34 years old with stage 4 rectal cancer.

    I have a 30% chance of being cured after my lung met was removed, per my onc. at MD Anderson. The studies are dated and don't apply to individuals.
    I live my life as though I am 100% cured. Each person is either 100% or 0% cured. My MDA oncologist told my husband to stop worring about statistics - he's a very smart man.
    KEEP THE POSITIVE ATTITUDE UP!!!!!!!! New meds are being developed all the time. And colon cancer is a big one for research funding. Lance Armstrong is the perfect example - read the book. He had VERY small chances of cure, yet there he is. Fight and live. And yes, keep quality of life maximized.

    Take care, jana

    Thanks for all of the advice and comments concerning my MOM. She will start chemo next week and we will be praying, wishing, and hoping for good results. Right now we will help her fight, fight, fight and hope that she keeps up a good quality of living while doing so. she is absolutely determined to see her grandkids grow-up so right now I am going to believe she will.
    Will update you all soon.

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