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What's one thing?

teamzach's picture
teamzach
Posts: 35
Joined: Jan 2014

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

marbleotis's picture
marbleotis
Posts: 498
Joined: Mar 2012

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

teamzach's picture
teamzach
Posts: 35
Joined: Jan 2014

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.

Chelsea71
Posts: 1170
Joined: Sep 2012

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's picture
teamzach
Posts: 35
Joined: Jan 2014

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's picture
Trubrit
Posts: 1517
Joined: Jan 2013

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
Posts: 662
Joined: Aug 2013

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
Posts: 1208
Joined: Aug 2012

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.

UncleBuddy
Posts: 662
Joined: Aug 2013

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

jen2012
Posts: 1208
Joined: Aug 2012

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's picture
Trubrit
Posts: 1517
Joined: Jan 2013

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. 

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

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...

 

 

jen2012
Posts: 1208
Joined: Aug 2012

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
Posts: 1208
Joined: Aug 2012

Janelle - sorry for going off topic on your post!

teamzach's picture
teamzach
Posts: 35
Joined: Jan 2014

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

UncleBuddy
Posts: 662
Joined: Aug 2013

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

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

I find this information very interesting.  I wonder if there is a link between radiation and other cancers???  I remember the radiologist saying that there may be secondary cancers showing up years (10 to 20 years) later. But I really wonder.

 

In my case I was diagnosed with stage 1 testicular cancer on 10/31/2011.  Then a short six months later I was disagnosed with stage IV crc on 4/23/2012.  Is it possible that the tumor could have started and grown and spread in a six month time-frame???

Fast forward in my case...

On Per a 10/21/2013 MRI I had a clear liver.  Then a short three months later, per a 1/24/2014 MRI I have a new tumor in my liver. 

So who's to say???

I just WISH I skipped the radiation for the Testicular cancer.  Not saying that it was causative of the crc but I really don't know.

Love and Light to you all!

 

 

 

 

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

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's picture
Trubrit
Posts: 1517
Joined: Jan 2013

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.

teamzach's picture
teamzach
Posts: 35
Joined: Jan 2014

Me too Phil... ME TOO.

Janelle

janderson1964's picture
janderson1964
Posts: 1679
Joined: Oct 2011

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.

Lovekitties's picture
Lovekitties
Posts: 2961
Joined: Jan 2010

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's picture
LivinginNH
Posts: 1313
Joined: Apr 2010

 

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's picture
teamzach
Posts: 35
Joined: Jan 2014

I wish there was a big giant cancer detecting machine that could test everyone yearly!... PET scans for all! Sigh.

I loved reading all the posts. Thank you all for making me feel so welcome!

Janelle

annalexandria's picture
annalexandria
Posts: 2268
Joined: Oct 2011

there is a lot of good info here!

annalexandria's picture
annalexandria
Posts: 2268
Joined: Oct 2011

that the symptoms of colon cancer aren't always obvious.  I had absolutely none of the typical digestive problems, but I did have severe anemia.  That was the clue that I was bleeding internally, and no one picked up on it.  I should have been scoped to check things out, but never was...and I was sick for 6 months before I finally landed in the ER, and got a dx from my emergency surgery.

I was too "young" at 43 for anyone to think about colon cancer.

And yes, PETs!  If I had gotten one of those when I first had gotten sick, what a difference it would have made.  I had a CT scan but it didn't pick up the cancer.  I think that's actually common for colon cancer.  The insurance companies really drag their feet about them, though, in my experience...too expensive.

Trubrit's picture
Trubrit
Posts: 1517
Joined: Jan 2013

Yeah, my insurance company wouldn't pick up on my PET scan. Still paying it off. 

Chelsea71
Posts: 1170
Joined: Sep 2012

I wish I would have joined CSN sooner.  The support would have been great but also I would have known to have had Steve take Cimetidine after his hipec surgery.  Might have made a difference.  

ron50's picture
ron50
Posts: 1298
Joined: Nov 2001

  The winning lotto numbers. I never knew how much it costs to have cancer. After fifteen hard years of survival I never realised how many body parts and bodily functions can stop working or not work properly and still leave a person functional. I might write a  weight loss book bout body bits you can live without!   Ron.

Phil64's picture
Phil64
Posts: 480
Joined: Apr 2012

Thank you for the laugh this morning.  See the cartoon on my blog (http://pscamihorn.me).  Your comments seem to synch up with the cartoon too. lol

Laughter is such a wonderful thing.

 

:-)

 

 

Nana b's picture
Nana b
Posts: 2975
Joined: May 2009

I had a colonoscopy at age 45 and cancer at age 50.   they missed my tumor which was right out of the small intestine and in the ascending colon. ONC thinks the gasterologist didn't go all the the way through to where they meet and missed it.  

 

Wish I had know that the bloating was a sign of cancer I mentioned it to my PCP and he just tossed aside at he time. But later got the colonoscopy, and you know the rest of the story. Stage IV cancer. The new PCP said it was gas, and to do sit ups.  Over two months.   It may never have gotten to my liver if she would have done a colonoscopy like I asked. I was in pain and I could feel a ball on my side. 

 

 

Rule if thumb is if cancer runs in your family have a colonoscopy 10 years prior to the age you or someone was diagnosed. My daughters have to go at age 40.  

 

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