cancer free?

I had a total colectomy in April, there were two types of cancers in my colon. Luckily they determined they were both stage 1, however it is familial-thanks Mom! I spoke to my doctor this week and after getting the results of a PET scan, they have decided that since it was stage 1 and the entire colon is gone, no chemo and no radiation. I'm not sure I agree with that, it was TWO types of cancer, I am told that is unusual. My life is kind of crazy to me right now, I don't have a bag...thank God for the j-pouch! But I can't seem to get the bowel movements under control and I feel like I still have more pain than there should be. I'm hoping to be back to work soon, but I am still weak and tire easily, however finances are saying I need to work. My husband has been great through all of this but now that they say "cancer free" it seems like everyone thinks things should be normal and all hunky-dorey again. I can't seem to get past past being scared that they missed something and the constant "going" is making me nuts! Is this normal, even though they tell me I'm fine to be so worried still, I can't sleep very well....some of that is going to the bathroom 3-6 times a night but not all of it. Is anyone else going through this or had been? If so please help! I feel like I'm losing my mind sometimes.

When you are told you are cancer free, you should feel so happy as thousands would like to be in your position, like my wife who has being fighting cancer for 7 yrs and she is stage1V ,  but every day she trys to live her life the best she can, she has a permanent wet ostomy (stool and urine) also she has an abcess inside that they dont want to operate and it drains each day, on top of all this she has chronic nuropathy with the chemo. also has blood clots in right leg and left leg her main artery she has 50% blocked,.. at moment she is in hospital because they found a clot near her heart.  Talking to her she is just so happy to be alive.

All I  can say in your situation is be happy, hug your husband, live life to full... also make sure you get regular check ups...

 Happy that you are cancer free and pray it will be like that for rest of your life......

hi Candidars,

I understand why you feel so uneasy about being told you are 'cancer free' that you can't get comfortable.  When you have 2 kinds of cancer and your doc tells you that is unusual, then says you don't need any more treatment, that is enough to make anyone uneasy.  Just do the best you can; if you are a religious person, pray at night when you can't sleep.  It is not easy to try to return to work when you feel like you spend most of your life in the bathroom.  Maybe if you speak with your doc, he will help you to get some more disability time so you can get some pay but stay home for a bit longer.  My husband has a sphincter muscle that doesn't work so he has had to use diapers 24/ 7 since his surgery for rectal cancer 1/02.  He has horrible diarrhea; thank heaven his is an unusual case.  Most people do recover to the point where they can live their lives with a few adjustments.  Often it is just a question of training your colon to do things a bit differently.  I am sure this will be true for you as well.  I will keep you in my prayers.  Let us hear from from time to time so we know you're getting better.  Don't let it get you down; it will get better/

Joan L

Candidars,

Did you get a CEA test in addition to the PET Scan?  That might provide so additional comfort.  Also, since they removed your colon, it isn't surprising that you will have BM issues for a while plus the surgery pain could take a while to go away as well. 

Unfortunately sometimes the only thing you can do is wait and keep testing every 3 or 6 months.

Jack

Joan.....Just wondering why didn't your husband have a colostomy? I know it is one's own choice.... BUT my husband has had a permanet colostomy because the cancer was in his spintcher muscle and IS doing very well with it. I want you to know that it is NOT as bad as what it sounds like. Ted had his colostomy done on monday and came home friday, because it was done LAPROSCOPITALLY by a wonderful specalist. His recovery was fast and almost pain free. My prayers are with you and your husband....

                                                 Sheila

 

I belive you HAVE A RIGHT  TO BE CONCERNED.....I have always been told....I have always heard.....STANDARD OF CARE AFTER SURGERY .....NO MATTER... IS 6 MONTHS OF CHEMO. Please get another opinon. God Bless.....

                                   Sheila

Hi Sheila,

My husband would not even consider a colostomy; in fact, even now, with all the trouble he continues to have, he says he would not change his mind.  He is an older gentleman and, like many men of his generation, he has certain built-in prejudices.  During the several months of his temporary colostomy, he would have nothing to do with it, would not even touch or look at it.  I did all the care, cleansing and changing of the wafers, bags, etc that was required.

I begged him to reconsider but he was adamant and now we are both hostages to his incompetent sphincter and lack of bowel control.

Of course, it wasn't completely his fault.  The surgeon never warned us that this might be the result , and I was not familiar with online support boards to do any research until after the fact, so we were naive enough to believe him.  The surgeon said he would pretty much have things like they were prior to surgery.  I can't blame my husband for wanting that.  However, when it became clear that it wasn't going to be that way, he wouldn't consider returning to the colostomy.  I suppose it is partly my fault for not making him deal with the ileostomy himself; he might have learned it wasn't thar bad.  But it was so distasteful to him and he was so depressed, I thought I was helping.

So we live with it.  He has now also been through Whipple surgery, chemo and radiation for pancreatic cancer.  Amazingly, he appears to be one of the fortunate few to have beaten the pc only to discover he now has bilateral, inoperable pulmonary mets from colon cancer which he had after the rectal cancer.  (I wonder what he did in a prior life to deserve this?)

Thanks for your kind words.  I'm glad your husband is doing well.

Joan L 

 

On 6/20/2009 Joan l wrote:

Hi Sheila,

My husband would not even consider a colostomy; in fact, even now, with all the trouble he continues to have, he says he would not change his mind.  He is an older gentleman and, like many men of his generation, he has certain built-in prejudices.  During the several months of his temporary colostomy, he would have nothing to do with it, would not even touch or look at it.  I did all the care, cleansing and changing of the wafers, bags, etc that was required.

I begged him to reconsider but he was adamant and now we are both hostages to his incompetent sphincter and lack of bowel control.

Of course, it wasn't completely his fault.  The surgeon never warned us that this might be the result , and I was not familiar with online support boards to do any research until after the fact, so we were naive enough to believe him.  The surgeon said he would pretty much have things like they were prior to surgery.  I can't blame my husband for wanting that.  However, when it became clear that it wasn't going to be that way, he wouldn't consider returning to the colostomy.  I suppose it is partly my fault for not making him deal with the ileostomy himself; he might have learned it wasn't thar bad.  But it was so distasteful to him and he was so depressed, I thought I was helping.

So we live with it.  He has now also been through Whipple surgery, chemo and radiation for pancreatic cancer.  Amazingly, he appears to be one of the fortunate few to have beaten the pc only to discover he now has bilateral, inoperable pulmonary mets from colon cancer which he had after the rectal cancer.  (I wonder what he did in a prior life to deserve this?)

Thanks for your kind words.  I'm glad your husband is doing well.

Joan L 

Joan - nothing either of you did in a previous life resulted in this.  One thing that I have found with cancer is that is doesn't care who you are or what you do, Cancer just comes in and tries to take you.  It's up to you and your DH as to what you can do to fight against it.  You can fight and enjoy each others company and continue to be positive and that is a good thing.  I wish you much luck with your husbands fight, he is lucky to have you with him!!

Hi, I know someone replied to your post here saying you should just be grateful they are telling you you're cancer free because of all the people that are battling cancer who would love to hear that....I see what that person's saying but at the same time you have the right (and obligation) to ask any and all questions if this seems odd to you.  My Dad is stage 4 colon cancer (54 years old) and he just had scans come back completely clear, yet we continue with his chemo to keep it that way.  We've been told that with his being stage 4 he needs to continue treatments to keep the cancer at bay.  Keep in mind that the cancer itself is a different type of cancer when it's reached stage 4 level.  I think more than likey you are indeed cancer free.  I think you will probably find another oncologist who will back your original oncologist up on this but if you have doubt...get another opinion.  Your mindset is so crucial to dealing with cancer, no matter what the stage is so if getting another opinion will give you complete confidence in this process and give you peace of mind...get another opinion.  Oncolgoists, like everyone else in the world, can be questioned.  Remember that they work for YOU.  As for your frequent bowel movements keep your doctors up to date and make sure they know how things are going in case they can do something to help you adjust to all of this.  I think over time you'll find your body will start to adjust again but always keep your doctors informed.  I hope you have the best of luck going forward and I'm thrilled you found out about your cancer at the early stages.  Keep your chin up!  

First of all, congratulations. It's wonderful news that they seem to have caught it in time. But you should definitely get a second opinion. A google search will bring up articles stating that people who get follow up chemo after stage 1 resections have a lower rate of recurrence than those who don't. If a second opinion doesn't work, get a third. Find out who the most aggressive doctors are and go to them.