hi im a newbie so need help please

mariasmiler
mariasmiler Member Posts: 1
edited March 2014 in Colorectal Cancer #1
hi all im new at this so will give as much info as i can i was diagnosed with colon cancer nearly 3 yrs ago i have had rectum removed and lymph nodes. and a colostomy fitted, i have now been in remission for the best part of 2 yrs, what is worrying me and i am very worried is that every site i go on about bowel cancer say the servivol rate is only 5 yrs this is worrying me something terrible, i have also found out through getting all my hospital notes that i have 2 cysts on my liver and 2 on my lungs im booked in for an MRI scan this month and am very concerned about these cyst as i have been told they can turn cancerous can anyone tell me any different and put my mind at rest many thanks maria x

Comments

  • KKLoop
    KKLoop Member Posts: 73
    My first thought is, dont' worry until you know. My second thought is...it is what it is. If it is cancer...they can do something about it....if it is not, you have worried for nothing and again...they can do something about it. Take some deep breathes.....you will be okay. Enjoy your beating this thing!!!
  • neon356
    neon356 Member Posts: 137 Member
    Hi Maria,
    I don't know what sites you're referring to, but I've never seen one that says that the survival rate for colon cancer is only five years. You didn't say what stage your initial diagnosis was, I was diagnosed stage 3 with 9 of 15 nodes positive and I'm still on this planet after 12 years. I think that most of us that have had this dreaded disease worry that it may come back, I still do even after all this time, but the fact is that once it's under control, and you're cancer free for 5 years, you're considered 'cured'. I understand your concern over the cysts that have shown up, and I agree with Kkloop- try not to worry about it until you know. If the cancer has returned there's plenty that can be done about it. Enjoy life's precious moments, the future can't be controlled, and will take care of itself. Best of luck, and here's hoping that your tests come out negative.
    Carl
  • ron50
    ron50 Member Posts: 1,723 Member
    Hi Maria,
    I'm in agreement with Carl statistics are based on old info ,lets make some new stats I was stage 3 6of 13 lymphs involved and I'm over 7 yrs so between us we have nearly 20 yrs survival of late stage colon cancer . be vigilent but don't die of worry ,treat problems when and if they arise and just keep smelling the roses .good luck Ron.
  • nanuk
    nanuk Member Posts: 1,358 Member
    Maria: Word search "cyst" on this site..I got 536 hits, not all relevant, but see Summer39, KKloop, & Mandymum for a discussion of different types of cysts..
  • jana11
    jana11 Member Posts: 705
    Hey maria. Here's some basic medical info: the 5% survival rate is based on Dukes staging, it is a stage 4 survival rate BASED ON STUDIES DONE DURING THE EARLY 1990'S AND BEFORE. It doesn't relate to recent drugs and therapies.

    I am stage 4. I had a single lung met, which was resected. My oncologist, at MD Anderson, told me I have about a 30% chance of CURE with only surgery. The studies show that chemo doesn't really help, but I did it anyhow.

    See, the 5% is old news. DO NOT let it get you down!!!

    If your "cysts" aren't growing, they are NOT worrisome. Take a deep breath and TRY to relax. (easier said than done, but I do try.)

    Hope this helped. Hang in there. jana
  • Shandle
    Shandle Member Posts: 204
    jana11 said:

    Hey maria. Here's some basic medical info: the 5% survival rate is based on Dukes staging, it is a stage 4 survival rate BASED ON STUDIES DONE DURING THE EARLY 1990'S AND BEFORE. It doesn't relate to recent drugs and therapies.

    I am stage 4. I had a single lung met, which was resected. My oncologist, at MD Anderson, told me I have about a 30% chance of CURE with only surgery. The studies show that chemo doesn't really help, but I did it anyhow.

    See, the 5% is old news. DO NOT let it get you down!!!

    If your "cysts" aren't growing, they are NOT worrisome. Take a deep breath and TRY to relax. (easier said than done, but I do try.)

    Hope this helped. Hang in there. jana

    Jana, I loved your reply.. It also gives me hope as a stage 4. Bless you. Please stay in touch. ~ Wanda
  • HowardJ
    HowardJ Member Posts: 474
    Hi Maria,
    The survival rates for cancer are expressed as "5 year survival rate" and have a percent associated with this based on the stage of the cancer at time of diagnosis (e.g., 50% 5 yr survival rate). It's assumed that if a patient lives beyond 5 years they were probably "cured" of the original cancer. It's all based on population statitics. However, everyone is different and you can't predict how any one person will respond. Howard
  • steved
    steved Member Posts: 834 Member
    This does demonstrate how confusing so much of the information available is. I can simply reiterate what is written above. The rates that are commonly quoted are either '5 year survival rates' (the percentage of patients still alive five years after diagnosis) or '5 year remission rates' (the percentage still cancer free five years after diagnosis- after which a recurrence is very unlikely). They range from around 80-90% survival for stage 1 to around 5% for stage four. But as Jana pointed out they are generaly out dated and are based on averages (so include a fair number of elderly patients who die of other causes and all stage 4 are lumped together including those with minor spread and those with multiple mets). So the figures are very difficult to apply to individuals.
    Your own story sounds more postive. There are many causes of cysts on theliver and lung other than a spread of the cancer. You are best to get on a get the investigations done and try to remove teh unvcertainty that will be nagging away at you about these.
    Do keep asking questions and finding out more- information is very empowering in this illness but it needs to be accurate and understandable so be cautious of some websites you may find. Youa re very welcome here and I'm sure after your own experience you have a lot ot offer others on this site. So welcome and we look forward to hearing how your investigations go,
    Steve
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    steved said:

    This does demonstrate how confusing so much of the information available is. I can simply reiterate what is written above. The rates that are commonly quoted are either '5 year survival rates' (the percentage of patients still alive five years after diagnosis) or '5 year remission rates' (the percentage still cancer free five years after diagnosis- after which a recurrence is very unlikely). They range from around 80-90% survival for stage 1 to around 5% for stage four. But as Jana pointed out they are generaly out dated and are based on averages (so include a fair number of elderly patients who die of other causes and all stage 4 are lumped together including those with minor spread and those with multiple mets). So the figures are very difficult to apply to individuals.
    Your own story sounds more postive. There are many causes of cysts on theliver and lung other than a spread of the cancer. You are best to get on a get the investigations done and try to remove teh unvcertainty that will be nagging away at you about these.
    Do keep asking questions and finding out more- information is very empowering in this illness but it needs to be accurate and understandable so be cautious of some websites you may find. Youa re very welcome here and I'm sure after your own experience you have a lot ot offer others on this site. So welcome and we look forward to hearing how your investigations go,
    Steve

    Hiya Maria..ditto to all of the above...but here's an extra thought.
    My friend here in oz was dx'd rectal cancer, had surgery with a colostomy. He did NO chemo mainly because back then when he was dx'd chemo was still in relative infancy so far as whether it was necessary for his staging.
    That was 18 YEARS AGO!!!
    He is astounded that he is still with us today, leads a normal life and even admits he is still somewhat afraid.
    18 years NED Maria!!What an incredible achievement...and.....he is not the only one that has beaten the statistics!!
    Your fear of the cysts being cancerous is understandable Maria. Jen and I send our best wishes for a good report.
    Hang in there!!!
    luv, kanga n Jen
  • madu
    madu Member Posts: 53
    Hey Maria,

    Just wanted to let you know that I was diagnosed with stage IV rectal sigmoid cancer with a met to the liver 8/98 at age 31. I have been in remission since 1/99 and have no evidence of disease at 6 years 8 months. There's a fabulous article by Stephen J. Gould - The Median is not the Method -he was diagnosed with a rare cancer that gave him about 8 months to live - he lived over 20 and died from a totally different cancer. He was a statistian - Harvard I believe- and he found that the survival curves are right skewed - in other words there are many (stage IV) who die early but there is a long long tail of others who live on - they don't look past 5 years so they don't know how many of us there are. I figured I had 20-25% chance to make it 5 years - recently told my onc this and he said, "oh Heidi it was much worse than that but I couldn't tell you that (and I never asked)" yet here I am - I figured if I had a 1 in 4 or 5 chance then there was just no reason I couldn't be that 1. And there's no reason you can't be also.

    Take care and keep us posted.

    Heidi
  • jgomez
    jgomez Member Posts: 25
    Hello Maria,
    I was detected 4 years ago with colon cancer stage three with 4 possitive lymph nodes. My doctor said that I was suspected to live for 3 months. I just want to tell you that I am still here and I expect to see my great grand children.

    Have faith
  • mariesr
    mariesr Member Posts: 1
    ron50 said:

    Hi Maria,
    I'm in agreement with Carl statistics are based on old info ,lets make some new stats I was stage 3 6of 13 lymphs involved and I'm over 7 yrs so between us we have nearly 20 yrs survival of late stage colon cancer . be vigilent but don't die of worry ,treat problems when and if they arise and just keep smelling the roses .good luck Ron.

    Hi Ron,
    What was your original diagnosis? I am new here as well. I am a 54 year old women, back in Sept of 2003 I was diagnosed with colon cancer stage 3, with 9 out of 12 lymphnodes were effected. It had penitrated the wall. I recieved 8 months of cemo theraphy. The doctors believes that the Colon Cancer was in remission from the surgery. On Dec 2003 I was diagnosed with a blood clot in my lung, which was treated with success. Six months later I was diagnosed with Thyroid Cancer, which at this time is in remission along with the Colon Cancer. Through the whole time there were two small lymphnodes on one of my lungs. Now they think it may be cancer that spread from the colon. I was wondering if anyone out there knows anything about the colon spreading to the lungs and surviving? Any information would be greatly appriciated. Many thanks, Mariesr