Colostomy And Cea Markers

In February, 2005, I was diagnosed with rectal cancer.  I underwent five week of continuous chemo (5-FU) along with 28 radiation treatments.  On June 3, 2005, I had APR surgery (my sigmoid colon, rectum and anus were removed and I have a permanent colostomy).  Pathology found no evidence of cancer cells in 27 lymph nodes or in my blood, so I was considered cancer free.  I took Xeloda (2000 mg/day) for 6 months from August of 2005 to January 2006. 

I have been going in for follow-ups on a 6-8 month basis.  In August of 2006, my CEA marker was 3.4.  In November 2006, it had fallen to 3.1.  Yesterday, (March 22) it had risen to 3.3 and the surgeon wants me to have a PET scan since "something" has been showing up in CAT scans I have had over the past year (Yesterday was the first I had heard of this development).

 Anyone reading this who has had cancer knows that the paranoia of it returning will probably always be a part of my thought patterns.

Is this minor rise in my CEA cause for great concern?  Has anyone else had this experience?

Also, I will be glad to discuss my colostomy with anyone who thinks they may have to have one. 

Billy Haake, Charlotte, NC  

 

Only a persistently rising CEA would be of concern.  A CEA in the normal range particularly.  Other tissues produce CEA as well, particularly in smokers so unlike PSA you don't expect it to go away entirely.  I would not disagree with a PET scan for followup however.  You ARE NOT considered CURED after therapy.  Being cancer free at that point is good but we do know over time people will recur.  Hence, the emphasis on 5 year cure rate etc..  I don't think you have much to worry about.  However, if there IS something growing, it is better to catch it early.

 

Thank you for your quick response.  Two things I learned from my cancer experience:  (1) I need to stay pro-active and not depend on  the medical community to solve all my problems without my input and (2) I need to stay vigilent. 

On 3/24/2007 Witchdoctor wrote:

Only a persistently rising CEA would be of concern.  A CEA in the normal range particularly.  Other tissues produce CEA as well, particularly in smokers so unlike PSA you don't expect it to go away entirely.  I would not disagree with a PET scan for followup however.  You ARE NOT considered CURED after therapy.  Being cancer free at that point is good but we do know over time people will recur.  Hence, the emphasis on 5 year cure rate etc..  I don't think you have much to worry about.  However, if there IS something growing, it is better to catch it early.

 

Hi Billy,

My husband is 27 yrs. old and on 02/21/07 he was diagnosed with rectal cancer. They say it is soo close to the anus that he will have to have a permanent colostomy. Please Billy help me understand what your recovery was like and how life was after your surgery and colostomy???

Thank You.

Eva

We just heard about the CEA marker; my husband has not had the test.  he HAs had 12 readiation treatments and is taking 3000mg xeloda on days of RT.  We aked the oncologist about the CEA test but he still hasn't ordered on.  I was wondering when your first test was done?  It seems to me that this test should have been done when the tumor was found.  Isn't this number important after treatment??    He is also have colostomy, tumor too far into muscle to save rectum.  

Billy, I would like to know also.  I posted previously before reading this one.  my hub has had 12 RT and taking 3000mg xeloda on RT days.  His tumor close to anus and into rectal muscle so we are told it can't be saved.  He is also taking herbs and supplements.  He acutally said to his oncologit last week that he in considering NOT having the surgery.  Boy did the doc flip - you are just committing suicide!!!    The philosophy is if you can cut it out then cut it out.  a colostomy is not difficult to deal with.  my dad had a urostomy when he was 79.  He didn't handle it well at first being that he's an impatient man.  He lived another 5 yrs.  

 

On 3/29/2007 Eve&sergio wrote:

Hi Billy,

My husband is 27 yrs. old and on 02/21/07 he was diagnosed with rectal cancer. They say it is soo close to the anus that he will have to have a permanent colostomy. Please Billy help me understand what your recovery was like and how life was after your surgery and colostomy???

Thank You.

Eva

Eva:

After being diagnosed with rectal cancer, I have had many people - doctors, interns, medical students, nurses, et. al - use flashlights, probes and other uncomfortable devices to look into every hole in my body.  And now I seem to have lost any modesty I may have had before, so I'm going to be very graphic.  I'm not trying to be lurid or provocative, but to let you know what you and your husband may be facing.

My tumor was less than 3 inches from my anus and the surgeons all agreed it was too low to save my rectum and anus (they want a minimum of 5 inches, but would prefer 6 or more inches from the anus to save the rectum).  The reason for this is that the doctors need a safe margin of area to cut out around the tumor.  I have a friend who is a fellow rectal cancer survivor whose surgeon tried to save his anus and now he is rectally incontinent and has to wear Depends all the time because his sphincter muscle will not work properly.  I personally would rather have the bag.

Before the surgery, I took chemo and radiation and that helped shrink the tumor.

The surgery itself lasts about 5 hours.  My advice: shop around for a top-of-the-line colorectal surgeon: e.g. there are several websites that rate individual doctors like "Good Doctors.com" and "Bad Doctors.com". Sometimes, these websites deal with only those doctors in your state. Take a note pad (both of you) and ask lots and lots of questions and concerns.

After surgery, I stayed in intensive care for about 7 days.  During that time, pathology examined lymph nodes and my blood to see if the cancer cells had spread.  In my case, I won the lottery since the only evidence of cancer that was found was confined to the tumor itself.  I will be forever grateful for medicine and science.

What does the colostomy look like?  On my lower left abdomen, I have what is called a stoma.  Think of a golf ball cut in half, painted bright red and attached to your stomach.  It has little feeling and is not uncomfortable.  It is the end of my transverse colon curled back on itself.  Stool passes through it and at this time, I have no control whenever it will pass so I wear a system ("The Bag").  I use a two-part system made by Convatec.  It consists of a "wafer" that uses a high-tech adhesive that adheres over my stoma.  A bag, 8-10 inches long, is attached over a hole in the wafer.  The system lasts about 4-7 days before needing replacement.  I get about 4-5 days use before I have to change.  Again, the product is extremely high-tech and well made.  If properly installed (and it is rather easy to do once you get the hang of it), there is no leakage and (blessedly) no odor.  I clean my bag about 3-4 times daily.  Some folks do not have to clean as often, some more often.  The biggest annoyance is the gas:  I'm forever going in the bathroom and "de-gassing" the bag.  Be courteous and use an air freshener afterward.

For about 2 months after the surgery, I lost a lot of control over my bladder and would wet the bed from time to time.  This eventually healed.

My biggest mistake was overeating too soon and gaining too much weight.  My abdominal walls were not sufficiently healed and now I have a peristomal hernia that will need repair.  Take my advice and watch your weight and do not lift heavy objects for at least a year.  An APR is major, major surgery.

After I heal from the hernia repair, I will be able to "irrigate".  That is, I can flush my colon with water once a day and not have to wear a bag, just a large bandage.  This is not possible for those people who have an ileostomy, however.

Before the surgery, I had to sign a waiver and consent form that explained the negative side effects that could occur with the operation.  One of them was "erectile dysfunction" and the form said something to the effect that about 50% of patients undergoing the treatment would have some sort of erectile dysfunction, possibly permanent.  Well, it happened to me and happened to all of the men I contacted in my colostomy support group.  Apparently, there are nerves that control erections very close to the area where the surgery is done and it is easy for even the best of surgeons to damage a few of them.

Please do not let this scare you off from the surgery. 

As a young couple, I'm sure your sex life is very important to you (Hell, it's important to me and I'm in my 60's!). and I think you should know about this possibility.  However, you may be fortunate and not have this side effect.  If you do have it, don't despair.  First of all, give the healing process 12-18 months to take place (I know, I know - that's an eternity). After that (or possibly before), there are a number of options open to you: Work closely with your urologist.  Viagra, Cialis and Levitra are the first lines of help.  Next, there are injections and pellets ("Muse") that can be used.  Vacuum pumps work very well and it's important to buy a very good one.  The ones sold over the counter in drug stores are not effective.  Ask your urologist about the prescription pumps available such as the Osbon brand.  A last resort is an implant,  But from what I've read, the implant is a very good and satifying alternative for many men.

I'm sorry I took so much space to describe the negative sexual side effects that can occur.  To those of you who are inside the candy store enjoying all the treats whenever you want, it may not seem important to you.  But if you're the little kid who is locked outside and can only look in the window, it becomes enormously important.

I guess I will always be a little paranoid about the cancer returning.  So, I want to stay eternally vigilant and above all, stay proactive in my healing and prevention.

The colostomy saved my life.  I think of the bag as an artificial rectum and the clamp that holds it shut as an artificial sphincter muscle.  I'm very active and have started dancing lessons recently (I'm going to master the "West Coast Swing").  Life is very good and it feels good to wake up every day.

Join an ostomy support group and attend the meetings.  We have one here in Charlotte that meets once every other month.  The fellowship and the education is priceless.  Join and participate in online groups, too.  There are a lot of us out here.

The very best of luck to both of you.  Let me hear from you.  We all can share advice and comfort and hope.

And you can share this e-mail with anyone you wish.  (As I said, I have no modesty left!).

Yours in healing,

Billy Haake

Charlotte, NC

 

 

On 3/29/2007 Gailee wrote:

We just heard about the CEA marker; my husband has not had the test.  he HAs had 12 readiation treatments and is taking 3000mg xeloda on days of RT.  We aked the oncologist about the CEA test but he still hasn't ordered on.  I was wondering when your first test was done?  It seems to me that this test should have been done when the tumor was found.  Isn't this number important after treatment??    He is also have colostomy, tumor too far into muscle to save rectum.  

I had my surgery in June of 2005 and the first I heard about the CEA markers was in the Spring of 2006 during a check-up with my hematology oncologist at Duke.  I guess they took a CEA reading when I was first diagnosed, but I have not requested a copy of the report at this time.  Your response has inspired me to find out.  Thanks for the input.  I've posted a message detailing my experience with the colostomy.  Let me hear from you.  The best of luck.

 

On 3/29/2007 Gailee wrote:

Billy, I would like to know also.  I posted previously before reading this one.  my hub has had 12 RT and taking 3000mg xeloda on RT days.  His tumor close to anus and into rectal muscle so we are told it can't be saved.  He is also taking herbs and supplements.  He acutally said to his oncologit last week that he in considering NOT having the surgery.  Boy did the doc flip - you are just committing suicide!!!    The philosophy is if you can cut it out then cut it out.  a colostomy is not difficult to deal with.  my dad had a urostomy when he was 79.  He didn't handle it well at first being that he's an impatient man.  He lived another 5 yrs.  

I have posted a detailed message about my colostomy operation and the aftermath.  And I agree with your husband's doctor, but it's his life and he should be allowed to do as he wishes.  As I said in my recent post, the colostomy hasn't been that bad.  It saved my life and I can live a rather full life with it.

Thank you very much Billy. You seem like a very strong person and you have great way of bringing things into light. Thank you.

 

Eva