What's one thing?

What is one thing you wish you would have known about colon cancer before you or your loved one was diagnosed?


I didn't realize someone could get diagnosed with stage IV colon cancer at 30 years old. You aren't "recommended" to get a colonoscopy until age 50!

Things that make you go "Hmmmmm.."

 

Janelle

«1

Comments

  • marbleotis
    marbleotis Member Posts: 720 Member
    Agreed

    I was 49, no direct symptoms, no family history.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    My husband, Steve, had

    My husband, Steve, had ulcerative colitis and I knew this was a risk factor for crc.  I didn't know it could move in and take over so quickly.  He went for regular scopes but it just wasn't caught until it was stage four.  

    I'm going for a colonoscopy in several weeks.  I'm 43 but have a family history. Had to push for it though.  After what I've been through and knowing what I know, there is no way I'm going to sit back and wait for 50.

    30 does seem young for crc.  At 30, it wasn't remotely on my radar screen.

  • teamzach
    teamzach Member Posts: 35

    Agreed

    I was 49, no direct symptoms, no family history.

    hmm....

    My husband's maternal grandpa was diagnosed with stage II just before he died at around 82 years old... and his uncle on his dads side was about 60. I am thinking maybe his was genetics? We never had genetic testing done, however the doctors mentioned something about polyposis. Have you ever heard of that? When he had his colonoscopy he had about 27 polyps that they could count.

  • teamzach
    teamzach Member Posts: 35
    Chelsea71 said:

    My husband, Steve, had

    My husband, Steve, had ulcerative colitis and I knew this was a risk factor for crc.  I didn't know it could move in and take over so quickly.  He went for regular scopes but it just wasn't caught until it was stage four.  

    I'm going for a colonoscopy in several weeks.  I'm 43 but have a family history. Had to push for it though.  After what I've been through and knowing what I know, there is no way I'm going to sit back and wait for 50.

    30 does seem young for crc.  At 30, it wasn't remotely on my radar screen.

    Good for you!

    Good for you!!! My husband didn't have any signs except the rectal bleeding. I have a brother who has ulcerative colitis so I honestly thought that was what my husband may have had. I told hiim to make an appointment and he did the next day. Although it took a couple of months before they FINALLY did the colonoscopy. I am thinking of having one done at 30. I mean, really... what 30 year old asks for a colonoscopy? But my grandmother had colon cancer at 40. I just say I am going to do it in memory of my husband and for my own health. 

    J

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    I wish

    I think I wish I had known that it could go undetected/symptomless for so long, ie. stage 3 or four. 

    If I had had symptoms I would have gone in sooner.

    If I had not feared the IV I wouild have had my colonoscopy at 50 and saved myslef maybe a stage or possibly two. 

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    I wish...

    I knew about this board when my brother was first diagnosed with CRC. He was only stage 2A back then (in 2011). Maybe I could have found better treatment for him and it wouldn't have advanced to his lungs and liver. I did the best I knew how at the time. We have no family history of CRC and he had no symptoms, other than slight bleeding which he thought was hemmoroids. I insisted that he and Dad go to a new doctor because their doctor never gave them a digital exams which is something that I worried about. My dad had had prostate cancer about 15 years ago. It was the new doctor who found the cancer. Anyway, now I come on here and ask questions and take what I learn to his doctor. 

    Lin

  • jen2012
    jen2012 Member Posts: 1,607 Member

    I wish...

    I knew about this board when my brother was first diagnosed with CRC. He was only stage 2A back then (in 2011). Maybe I could have found better treatment for him and it wouldn't have advanced to his lungs and liver. I did the best I knew how at the time. We have no family history of CRC and he had no symptoms, other than slight bleeding which he thought was hemmoroids. I insisted that he and Dad go to a new doctor because their doctor never gave them a digital exams which is something that I worried about. My dad had had prostate cancer about 15 years ago. It was the new doctor who found the cancer. Anyway, now I come on here and ask questions and take what I learn to his doctor. 

    Lin

    Lin..the best treatment and
    Lin..the best treatment and doctors may not have been able to stop the cancer from coming back. Try not to feel responsible for that. You seem to be a very helpful and involved sister. I am willing to bet you offer much more support than most on the board get from their siblings.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    I wish we knew that my

    I wish we knew that my husband was at risk for this cancer after radiation for testicular cancer ten yrs before.  Makes me angry that no doctor ever suggested an early colonoscopy or that we didn't research radiation risks.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    jen2012 said:

    I wish we knew that my

    I wish we knew that my husband was at risk for this cancer after radiation for testicular cancer ten yrs before.  Makes me angry that no doctor ever suggested an early colonoscopy or that we didn't research radiation risks.

    Thank you!

    Thank you Jen for this post.

    My husband has two young nephews who have both had testicular cancer. I think one had radiation the other chemo. I didn't know that there was a possiblitly that treatment for one cancer could lead to another and I don't think they do either. 

    I will advise them to be aware, though try not to scare them at the same time. 

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    jen2012 said:

    Lin..the best treatment and
    Lin..the best treatment and doctors may not have been able to stop the cancer from coming back. Try not to feel responsible for that. You seem to be a very helpful and involved sister. I am willing to bet you offer much more support than most on the board get from their siblings.

    Thanks Jen

    My brother had chemo 10 years before his CRC for NHL. It makes me wonder if the meds for the NHL could have caused his cancer. No one said anything about it back then, but it has been thrown around as a possibility recently. They also suggest his lifestyle choices (obesity, lack of exercise, not eating veggies) could have contributed to the disease. I just don't think they know for sure. I will pass on the information about the radiation for testiculat cancer and the connection to CRC. My friend's son had that a few years ago.

    Thanks again for your kind words. 

    Lin

  • Phil64
    Phil64 Member Posts: 838 Member
    jen2012 said:

    I wish we knew that my

    I wish we knew that my husband was at risk for this cancer after radiation for testicular cancer ten yrs before.  Makes me angry that no doctor ever suggested an early colonoscopy or that we didn't research radiation risks.

    testicular cancer and colon cancer

    I was first diagnosed with testicular cancer.  Even thought it was stage I testicular cancer the doctors strongly encouraged me to undergo radiation. So being a compliant patient I underwent 22 radiation treatments.  While undergoing the treatments I told my doctors about blood in the stool.  They told me it was probably hemroids, no big deal.  Well, after radiation was done I finally went to my family doctor.  He immediately sent me to a colonoscopy (I was 47). And unfortunately the colonoscopy and subsequent tests revealed that I was stage IV crc. 

    The other flub up that I experienced is that the chest x-ray taken as part of the testicular cancer follow-up was read as "all clear" when in fact there was a tumor in my lungs (from the colon cancer mets). The x-ray was later reviewed, after colonoscopy findings, and the tumor was determined to be "obscured" by a rib.

    It seemed like this was very rare to have testicular cancer and colon cancer.  What I learned (reading) is that testicular cancer is vary rare. And colon cancer when under 50 years old is also rare.

     

    What "I wish I knew" is that doctors aren't always right.  I should have probably NOT undergone radiation and instead should have undergone an immediate colonoscopy and various tests once we knew about the testicular cancer and the blood in stool symptom. The patient sometimes needs to be their own advocate!  And male instinct to ignore symptoms is BAD.  I wish I knew these two things...

     

     

  • Phil64
    Phil64 Member Posts: 838 Member
    on second thought

    I REALLY REALLY wish I knew...

     

    What causes colon cancer or cancer in general.

    And how to cure it!!!

     

    I think we ALL would want to know this.

    Maybe someday we (mankind) will know???

     

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Phil64 said:

    on second thought

    I REALLY REALLY wish I knew...

     

    What causes colon cancer or cancer in general.

    And how to cure it!!!

     

    I think we ALL would want to know this.

    Maybe someday we (mankind) will know???

     

     

    Just maybe

    Maybe someday we (mankind) will know???

    Maybe, Phil, Maybe. 

    I'm sorry to hear your story and agree that our gut feelings, our instincts are strong and should NOT be ignored. So what if the result of a colonoscopy had been clear, more joy I say and not a loss for having done it. 

    I KNEW I had colon cancer, I felt it in my gut, but I talked myself out of going to the Dorctor's until I was forced to go ie, a trip to the emergency room. 

    I believe your instincts are God given, a gift for us to grasp with both hands. 

    Good luck on Thursday.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Phil64 said:

    testicular cancer and colon cancer

    I was first diagnosed with testicular cancer.  Even thought it was stage I testicular cancer the doctors strongly encouraged me to undergo radiation. So being a compliant patient I underwent 22 radiation treatments.  While undergoing the treatments I told my doctors about blood in the stool.  They told me it was probably hemroids, no big deal.  Well, after radiation was done I finally went to my family doctor.  He immediately sent me to a colonoscopy (I was 47). And unfortunately the colonoscopy and subsequent tests revealed that I was stage IV crc. 

    The other flub up that I experienced is that the chest x-ray taken as part of the testicular cancer follow-up was read as "all clear" when in fact there was a tumor in my lungs (from the colon cancer mets). The x-ray was later reviewed, after colonoscopy findings, and the tumor was determined to be "obscured" by a rib.

    It seemed like this was very rare to have testicular cancer and colon cancer.  What I learned (reading) is that testicular cancer is vary rare. And colon cancer when under 50 years old is also rare.

     

    What "I wish I knew" is that doctors aren't always right.  I should have probably NOT undergone radiation and instead should have undergone an immediate colonoscopy and various tests once we knew about the testicular cancer and the blood in stool symptom. The patient sometimes needs to be their own advocate!  And male instinct to ignore symptoms is BAD.  I wish I knew these two things...

     

     

    Hey Phil - my husband too was

    Hey Phil - my husband too was stage 1 and I wish we thought about whether he should have done radiation.  There's no going back though.   It was kind of strange because when he was diagnosed with CRC, we asked about whether there may be a link to the previous radiation - the onc and surgeon said they didn't think so.  However, we met with a radio onc and posed the question to him and he said absolutely...without any hesitation....that he thought this was from the radiation.  My friend is a urologist and she agreed.   Also, my mom knows the nurse that worked for the radio onc that treated my husband for the tc back in 1999 and when my mom told her about the CRC, she was not surprised, but thought it came on earlier than what they would expect.   Expect??  How come no one told us??  Frustrating.  He was 46 at diagnosis of stage 4, and only had symptoms for a month or two.  Narrow stools basically was the only symptom and then he did have some bleeding right before the colonoscopy.  His doctor did the stool test the month before diagnosis and didnt find any blood in the stool. 

    Lin & Sue - thank you for spreading the word to others with TC.  That means a lot!

    Phil - I did some research last year.  Here is one article I had saved about the subject:

    http://www.cancer.org/Cancer/CancerCauses/OtherCarcinogens/MedicalTreatments/second-cancers-caused-by-cancer-treatment

    Testicular cancer

    The most common cancer seen in testicular cancer survivors is a second testicular cancer. Overall, 2% to 5% of men who have had cancer in 1 testicle will eventually have it in the other testicle. The second cancer is not from treating the first cancer with radiation or chemotherapy. In fact, those treated with surgery alone still have an increased risk of a second testicular cancer. Also, the chance of getting a second testicular cancer is actually lower in men who were treated with chemotherapy. The rest of this section is about second cancers other than testicular cancer.

    Patients treated for testicular cancer have less than one-half the risk of second cancers than those treated for Hodgkin disease. Compared with most people (the general population), testicular cancer survivors are up to twice as likely to develop a new cancer outside the testicle. The chance of a second cancer goes up over time and also depends on which treatments were used.

    The risk of a solid tumor cancer starts going up within 5 years and doubles after 10 years in those men who were treated with radiation alone. This risk remains high for more than 35 years after treatment. The most common cancers seen after abdominal radiation for testicular cancer are cancers of the bladder, colon, pancreas, and stomach. Radiation to the abdomen also increases the risk of cancers of the rectum, kidney, and prostate. If the radiation field includes the chest (or the part called the mediastinum), the risks of lung cancer and thyroid cancer are increased. (The mediastinum is the middle part of the chest, which contains the heart and its vessels, the trachea, the esophagus, the thymus, and some lymph nodes.) Radiation treatments also increase the risk of melanoma skin cancer and connective tissue cancer (sarcoma). The risks are generally greater with higher radiation doses or if the patient got both chemotherapy and radiation.

    In recent years, radiation therapy for testicular cancer has changed. Lower doses of radiation are used, and preventive treatment to the mediastinum has been stopped. Long-term follow-up studies are needed to see if these changes have lowered the cancer risks.

    Chemotherapy is linked with an 80% increased risk of solid tumor cancers -- slightly less than what is seen after radiation. The risk of leukemia after treatment for testicular cancer is also increased. Most cases are linked to the chemotherapy drugs cisplatin and etoposide (VP-16, Etopophos®, or Vepesid®). Higher doses of these drugs have a higher risk of leukemia. Leukemia is normally a rare cancer, so even though the risk of leukemia after testicular cancer is higher than average, very few patients develop leukemia from their treatment.

    Follow-up care

    Because the most common cancer seen is a second testicular cancer, survivors should perform regular testicular self-exams. They should see a doctor at least once a year or sooner if any problems develop.

    All patients should be encouraged to avoid tobacco smoke.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    jen2012 said:

    Hey Phil - my husband too was

    Hey Phil - my husband too was stage 1 and I wish we thought about whether he should have done radiation.  There's no going back though.   It was kind of strange because when he was diagnosed with CRC, we asked about whether there may be a link to the previous radiation - the onc and surgeon said they didn't think so.  However, we met with a radio onc and posed the question to him and he said absolutely...without any hesitation....that he thought this was from the radiation.  My friend is a urologist and she agreed.   Also, my mom knows the nurse that worked for the radio onc that treated my husband for the tc back in 1999 and when my mom told her about the CRC, she was not surprised, but thought it came on earlier than what they would expect.   Expect??  How come no one told us??  Frustrating.  He was 46 at diagnosis of stage 4, and only had symptoms for a month or two.  Narrow stools basically was the only symptom and then he did have some bleeding right before the colonoscopy.  His doctor did the stool test the month before diagnosis and didnt find any blood in the stool. 

    Lin & Sue - thank you for spreading the word to others with TC.  That means a lot!

    Phil - I did some research last year.  Here is one article I had saved about the subject:

    http://www.cancer.org/Cancer/CancerCauses/OtherCarcinogens/MedicalTreatments/second-cancers-caused-by-cancer-treatment

    Testicular cancer

    The most common cancer seen in testicular cancer survivors is a second testicular cancer. Overall, 2% to 5% of men who have had cancer in 1 testicle will eventually have it in the other testicle. The second cancer is not from treating the first cancer with radiation or chemotherapy. In fact, those treated with surgery alone still have an increased risk of a second testicular cancer. Also, the chance of getting a second testicular cancer is actually lower in men who were treated with chemotherapy. The rest of this section is about second cancers other than testicular cancer.

    Patients treated for testicular cancer have less than one-half the risk of second cancers than those treated for Hodgkin disease. Compared with most people (the general population), testicular cancer survivors are up to twice as likely to develop a new cancer outside the testicle. The chance of a second cancer goes up over time and also depends on which treatments were used.

    The risk of a solid tumor cancer starts going up within 5 years and doubles after 10 years in those men who were treated with radiation alone. This risk remains high for more than 35 years after treatment. The most common cancers seen after abdominal radiation for testicular cancer are cancers of the bladder, colon, pancreas, and stomach. Radiation to the abdomen also increases the risk of cancers of the rectum, kidney, and prostate. If the radiation field includes the chest (or the part called the mediastinum), the risks of lung cancer and thyroid cancer are increased. (The mediastinum is the middle part of the chest, which contains the heart and its vessels, the trachea, the esophagus, the thymus, and some lymph nodes.) Radiation treatments also increase the risk of melanoma skin cancer and connective tissue cancer (sarcoma). The risks are generally greater with higher radiation doses or if the patient got both chemotherapy and radiation.

    In recent years, radiation therapy for testicular cancer has changed. Lower doses of radiation are used, and preventive treatment to the mediastinum has been stopped. Long-term follow-up studies are needed to see if these changes have lowered the cancer risks.

    Chemotherapy is linked with an 80% increased risk of solid tumor cancers -- slightly less than what is seen after radiation. The risk of leukemia after treatment for testicular cancer is also increased. Most cases are linked to the chemotherapy drugs cisplatin and etoposide (VP-16, Etopophos®, or Vepesid®). Higher doses of these drugs have a higher risk of leukemia. Leukemia is normally a rare cancer, so even though the risk of leukemia after testicular cancer is higher than average, very few patients develop leukemia from their treatment.

    Follow-up care

    Because the most common cancer seen is a second testicular cancer, survivors should perform regular testicular self-exams. They should see a doctor at least once a year or sooner if any problems develop.

    All patients should be encouraged to avoid tobacco smoke.

    Janelle - sorry for going off

    Janelle - sorry for going off topic on your post!

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    I was not nearly as young as

    I was not nearly as young as Zach. But because I was 41 still under 50 I was misdiagnosed repeatedly until I insisted on a colonoscopy.

    To answer your question I wish I had known that narrow stools were a symptom of colon cancer. I had been experiencing that symptom at least a year before I started experiencing pain which led me to the doctor. Had I known that narrow stools was a symptom I would have gone to the doctor earlier and maybe have caught it before it had spread to my liver.

    I really admire you for contributing here after your loss.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    jen2012 said:

    Hey Phil - my husband too was

    Hey Phil - my husband too was stage 1 and I wish we thought about whether he should have done radiation.  There's no going back though.   It was kind of strange because when he was diagnosed with CRC, we asked about whether there may be a link to the previous radiation - the onc and surgeon said they didn't think so.  However, we met with a radio onc and posed the question to him and he said absolutely...without any hesitation....that he thought this was from the radiation.  My friend is a urologist and she agreed.   Also, my mom knows the nurse that worked for the radio onc that treated my husband for the tc back in 1999 and when my mom told her about the CRC, she was not surprised, but thought it came on earlier than what they would expect.   Expect??  How come no one told us??  Frustrating.  He was 46 at diagnosis of stage 4, and only had symptoms for a month or two.  Narrow stools basically was the only symptom and then he did have some bleeding right before the colonoscopy.  His doctor did the stool test the month before diagnosis and didnt find any blood in the stool. 

    Lin & Sue - thank you for spreading the word to others with TC.  That means a lot!

    Phil - I did some research last year.  Here is one article I had saved about the subject:

    http://www.cancer.org/Cancer/CancerCauses/OtherCarcinogens/MedicalTreatments/second-cancers-caused-by-cancer-treatment

    Testicular cancer

    The most common cancer seen in testicular cancer survivors is a second testicular cancer. Overall, 2% to 5% of men who have had cancer in 1 testicle will eventually have it in the other testicle. The second cancer is not from treating the first cancer with radiation or chemotherapy. In fact, those treated with surgery alone still have an increased risk of a second testicular cancer. Also, the chance of getting a second testicular cancer is actually lower in men who were treated with chemotherapy. The rest of this section is about second cancers other than testicular cancer.

    Patients treated for testicular cancer have less than one-half the risk of second cancers than those treated for Hodgkin disease. Compared with most people (the general population), testicular cancer survivors are up to twice as likely to develop a new cancer outside the testicle. The chance of a second cancer goes up over time and also depends on which treatments were used.

    The risk of a solid tumor cancer starts going up within 5 years and doubles after 10 years in those men who were treated with radiation alone. This risk remains high for more than 35 years after treatment. The most common cancers seen after abdominal radiation for testicular cancer are cancers of the bladder, colon, pancreas, and stomach. Radiation to the abdomen also increases the risk of cancers of the rectum, kidney, and prostate. If the radiation field includes the chest (or the part called the mediastinum), the risks of lung cancer and thyroid cancer are increased. (The mediastinum is the middle part of the chest, which contains the heart and its vessels, the trachea, the esophagus, the thymus, and some lymph nodes.) Radiation treatments also increase the risk of melanoma skin cancer and connective tissue cancer (sarcoma). The risks are generally greater with higher radiation doses or if the patient got both chemotherapy and radiation.

    In recent years, radiation therapy for testicular cancer has changed. Lower doses of radiation are used, and preventive treatment to the mediastinum has been stopped. Long-term follow-up studies are needed to see if these changes have lowered the cancer risks.

    Chemotherapy is linked with an 80% increased risk of solid tumor cancers -- slightly less than what is seen after radiation. The risk of leukemia after treatment for testicular cancer is also increased. Most cases are linked to the chemotherapy drugs cisplatin and etoposide (VP-16, Etopophos®, or Vepesid®). Higher doses of these drugs have a higher risk of leukemia. Leukemia is normally a rare cancer, so even though the risk of leukemia after testicular cancer is higher than average, very few patients develop leukemia from their treatment.

    Follow-up care

    Because the most common cancer seen is a second testicular cancer, survivors should perform regular testicular self-exams. They should see a doctor at least once a year or sooner if any problems develop.

    All patients should be encouraged to avoid tobacco smoke.

    Jen

    I told my friend and she had no idea, either. He had testiculat cancer (testicular seminoma) several years ago. Her son just got married (I believe he's 25 now) last year and is hoping to raise a family. Not sure what the odds are with that, but I hope he succeeds. I also have another friend whose brother has prostate cancer (I spoke to her about this this morning). They treated it with radiation. She said she is going to make sure that he speaks with his doctor and gets more frequent colonoscopies. Thank you for telling me. Spreading the word is the best defense.

    Lin

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Thank you Janelle

    Thank you for coming here and offering support and info to others.  Zach would be so proud.

    My wish pertains to my sister's case.  I wish I had known that she was experiencing symptoms (uterine cancer) sooner and could have gotten her to a doctor long before she initially went.

    It seems that education of the public about symptoms of all cancers and early diagnostic testing could save many lives.

    Marie who loves kitties

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
     
    My wish would have been

     

    My wish would have been that Rick's new doctor would not have jokenly told him six months before his diagnosis, "Oh, you're lucky, you don't have to get a colonoscopy for at least 8 years!"  Grrrr....   However, due to his diagnosis, I decided to get a colonoscopy at 45 yrs old, and guess what - they found two pre-cancerous polyps!  Rick's oncologist told me that I would definitely have developed cancer before I turned 50, and so I probably would have been blind sided by a Stave IV diagnosis myself.  So, my darling Rick saved my life....but sadly, lost his own.    :'(

    All my best,

    Cyn  

  • teamzach
    teamzach Member Posts: 35
    jen2012 said:

    Janelle - sorry for going off

    Janelle - sorry for going off topic on your post!

    Very helpful info!

    You did not go off at all! This is ALL very helpful info and just found out my Uncle has testicular cancer so I will be SURE to forward this on to my cousin! I love that this site is about raising awareness!!! :)

    Janelle