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Please help me to understand!

laurie83833's picture
laurie83833
Posts: 63
Joined: Oct 2009

Hello,

I am new to this board and my husband (and best friend ever) was diagnosed with colon cancer Sept 18, 2009 during a routine colonoscopy it was the last part of his complete physical. At that time a mass was found and they scheduled him for surgery (Right-Hemicoloectomy)Sept 28, 2009. Did not need a colostomy and the surgeon said that they feel the cancer was caught fairly early he said he checked his liver and did not feel there was any spreading. Tumor size 4.5 CM located in Asending colon. When I asked about staging the surgeon said Stage I and that he felt he removed all of the tumor and the 20 lympth nodes checked all came back clear. He said the tumor did go into the Fatty tissue but was contained there so the pathology report will be sumbitted to the onocological(Spelling??) for review to see if they feel Chemo may be suggested due to the tumor being in the fatty tissue. So then I specifically asked so you mean more like Stage II then and he said no more like a Stage IB but not Stage II (well I have not found anything on the internet that is a stage IB for colon cancer). And everything I read on the internet as far as staging to me since the tumor entered the Fatty Tissue then it would be considered Stage IIB. Anyrate I asked for copies of the pathological report to be sent to us for our review.

K but here is what I need help to understand or help in coping with.

Of course as you all know when you first here the "C" world your whole world as you know it falls apart. In a matter of a split micro-second. So I don't have to go into those feelings as you all know about those.

But what does this all mean?

I look at my husband now and its like all I see is Cancer, its like I think "oh no his skin has a faint yellow color to it it must have spread into his liver already, oh he coughed its into his lungs. I can't bear to see him in pain - I don't want him to suffer etc.. etc.. etc.. etc.. I CAN"T DO THIS!

I have known quite a few loved ones (sister and a brother-in-law) and friends in my lifetime with cancer some who past and some who survived so I am not new to cancer.

But I guess how can I get these thoughts out of my head and try and help us to get over this and have somewhat of a normal life. I feel our lives are on hold (no reason to even think of the future) we are in the process of purchasing a 2nd home in Hawaii a dream of both of ours since we can remember. Well should we cancel that dream now - we're just about ready to sign the papers? Its not really the money aspect as we are paying cash for most of it and the balance on loan is minimal less then 25K. but I mean should we call that part quits? We still talk like we are going to get it like nothing has changed just back in my head It feels different now even to plan anything for the future.

I guess if he has had the surgery and they feel they have removed all the cancer.. at this point and time unless we hear different is he now considered in remission? Should I think of it that way? What if the cancer returns (lets say localized in the colon) they said his was growing for quite a few years before they found it, why if another one grew in the colon (seems like if it does then immediatly it gets large and spreads all over to other organs bam that fast. What if it does not start again in the colon but speads somewhere else - is that quick also.. like see a spot on the liver one day and 8 weeks later its ready to call it quits?

1.-I do not understand how the whole percentage stats work, if it says 5 year survival 83% does that mean that 83% diagnosed this year with his same stage will live 5 years? What percent of this 83% accounts for reocurrance stats?

2.- Does like 50% of everyone diagnosed with colon cancer within 2-3 years have it re-ocurr?

3. - If they recommend Chemo and this only gives (from what I ahve read a 3-7% percent better chance of the cancer not re-ocurring then not having it all all) this small percent is it worth all the damage that Chemo does to the body?

Please help me to understand, I want us to feel like we can look forward to the future somewhat - I know live for the day etc.. we were doing so well for the first time in our life.. everything seemed like it finally came together - our realationship has alwasy been extremely wonderful (were like the local icons for a perfect relationship in our area), we both have the utilmate jobs (we both work from home for the same company) our finances were finally to the point where we could feel a sense of security. Kids all grown and starting there own familes.

Then BAM all gone in an instance out of the blue as soon as we heard the "C"word.

Please help me to understand the stats, how should we feel about the future if at all.. I want to be strong for my husband and try and give us a sense of normality back into our lives.

Sorry for rambling on...

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Laurie, I can attempt to answer some of your concerns. None of us are doctors, tho.

I would agree with YOU that a tumor that has perforated the colon wall, grown through the muscle and into the fatty tissue doesn't sound like Stage I. From what I've read, tumors that perforate tend to show up again. Don't ignore this and have a Stage I become a Stage IV.

Almost 50% of Stage III patients are healed by SURGERY ALONE. Chemo increases disease free survival chance of Stage III by another 20%. I know these numbers because that is my Staging.

Vit. D3, Aspirin, Calcium, Exercise and NO RED MEAT/ health diet all increase survival rates w/ no recurrence. All of these have been proven in several studies. Do some research and I'll try to find that info in an old post for you.

Please try to not put off your dreams! Hubby sounds like he has a GREAT chance of beating this forever, if he follows his doctor's advice (which probably will include chemo and I just completed mine on Aug. 12th). Say hubby does GREAT and you wait 5 years to pursue your dreams because of fear.... what a waste of five years! Don't lose the time you have been given, five years or five days. :o) This is the NEW normal (as one of our very wise members likes to say)

Diane

laurie83833's picture
laurie83833
Posts: 63
Joined: Oct 2009

Thank you Diane,

I just also called a friend of mine who moved away to another state about 6 years ago but we still keep in touch. Her husband was diagnosed with bone cancer 2 years ago. So it helped me taking with her "how they handled the news etc." and she agrees with what you said to continue with your dreams and just take things day by day. She said that to me before I even read your post :)

And Thank you for the information on "Vit. D3, Aspirin, Calcium, Exercise and NO RED MEAT" I will also do some research on this.

Thank you so much - words of encouragment is so very welcomed...

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Hi Laurie! First of all, let me tell you that i can totally relate to how you feel. I am the one with cancer, but i have seen how my loved ones react around me at the various stages of this disease, and i'm convinced they have suffered more than me. Especially in the beginning when it was new. Believe me, many of those feelings will go away. The fear will probably remain in the back of your head, but you will get used to the fact that your husband has cancer, and one day, you won't see it when you look at him.

Do NOT cancel your plans! Buy that dream home! The number one rule when dealing with cancer is NEVER GIVE UP, NEVER GIVE IN!! Even if by some chance you end up having to deal with this for a long time, never give cancer more than you have to.

Also, don't listen to the statistics. They are scare tactics as far as i'm concerned. Every person is different, so survival statistics are inaccurate. Don't worry about the what-if's, they are likely to never come, and if they do, you deal with them then.

You will make yourself sick by panicking. I know you're scared, but chances are very good your husband will survive this, and never hear from it again. You're educating yourself, and that's the most powerful thing you can do right now for both you and your husband. You're reading about nutrition, which i believe is key, and this experience itself will make you wise.

I was diagnosed a stage IIIc when i was 38, two years ago, and i never for one moment thought i would die from this. I'm a stage IV now with recurrence, and i still know i'll survive it (mainly i know this because i'm not going the traditional route this time).

Feel free to PM me with questions about what i'm doing to cure myself. I feel better than i have since this whole adventure began, so i know i'm doing something right.

Many hugs,
Krista

Jimbob-'s picture
Jimbob-
Posts: 50
Joined: Jan 2008

Hello laurie....

Yes hearing the C word scares the Hell out of you. No better way to say it.

Your Hubbies story sounds similar to mine.

I was diagnosed with Colo Rectal Cancer in April 2005. I noticed rectal blood, had a colonoscopy and within 10 days had surgery.

Those ten days were the longest of my life. My wife and I went through a terrible time of just talking and loving through sleepless nights.

following the surgery the Surgeon told us very simolar to what your doc told you. In my case there was no performation of the bowel walls, so no fatty tissue involved. A Biopsy of the Gross sample was performed and it showed no lymphnodes were involved. That was the Key, The cancer was contained and had not spread to the Lymph nodes.

I was stage one, no chemo or radiation was needed. I guess you are at this moment waiting to see if Chemo or radis indicated.

With the exception of the fatty tissue, your Husbands event sounds a lot like mine. This coming April I will have been five years since the surgery.

In my case the tumor had invaded the rectum and it had to be removed. SoI am not the proud owner of a permanent Colostomy.

In my heart of hearts I feel that your Hubby will beat this thing. With your permission i will put Him and you on my prayer list.

Jimbob

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

oops!

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Oops Again!

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Wow! It is clear from your note that you are going through a whole lot right now! No wonder. New diagnosis, trying to become informed, figuring out the staging, and trying to plan the future! It is too overwhelming!

First of all... try not to take on so much all at once. Work through this initial diagnosis and staging process until you've got a good first line treatment plan. If that means "adjuvant" or "preventative" chemo, go for it. Do make sure that they have taken a good look at the liver. No show in the lymph nodes is really good. Have they taken a CT of the liver just to be sure?

It sounds like a very early stage (1 or 2) so don't go borrowing a whole bunch of trouble! No what if's!! You will drive yourself crazy and foreclose on too many life-filled opportunities if you let the fear of "possibilities" paralyze you. You will find many, many, stage 1 and 2 folks who have this cleared up right away and never look back.

I don't think you want to put your life on hold. You have every bit a possibility of a future together After Diagnosis as you had Before Cancer. You can and will have a mostly normal life! You should continue to expect this.

On Stats...

Statistics are used to summarize trends in large populations and are not helpful or applicable when used to predict individual outcomes. (Even so... the statistics in your husbands favor are very good. ) I wouldn't waste much time trying to figure them out. If you can recover your "head-space" from the whole statistics, "odds", and "chances" mindset you can begin to focus on what is important, which is working with intention towards a complete elimination of cancer, or full cure.

I don't think "understanding the stats" will help you embrace the future and noramlize your life. You do want to understand and accept the diagnosis and the disease and engage in a comprehensive program of healing and recovery. Take your time with this. As it settles in you may find that it is not as bad as you are imagining, especially if the staging turns out to be 1 or 2. Even stage 3 or 4 CC and there is good hope for long-term survival and even cure.

Many people with cancer speak of living for the moment, the day! Yes, well... Most of us need to live with some sense of hope for the future too. We have dreams, make plans, work for tomorrow, and look forward to seeing the fruit born in the future of that which we have imagined today. You have all of these dreams. Don't let them go!

You should feel good about the future. It is natural for our "future horizon" to shrink a little after a serious diagnosis. We simply lose the future in a fog of uncertainty and fear. But for you two!! It will expand again for you as you settle into a good treatment plan and begin to realize that you will survive this.

Buy the house!

Rob; in Vancouver

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

Laurie - I am in the same boat, my husband was diagnosed with Colon Cancer in April of 2009, stage 3C. the reason for that staging is because it was in lymph nodes. Chemo started in june. We had a cruise planned for the end of August, ready to cancel and his oncologist, we would be going on the cruise. They would work his chemo around our trip. We are very happy we didn't give up our vacation, we needed it by then. I felt the same way you do, when he was first diagnosed, I was afraid to leave his side, even going to work scared me. I have gotten past that part, he did make me go back to work, 2 weeks after his surgery, I only work 5 min. away from home, walking time, so I drive. He is at home a disability because of herniated discs in his back. I was ready then, because I felt I was smothering him and he probably needed some space. I take him to all his chemo treatments and stay with him and make sure he takes his other meds. I have learned to give him space when he needs it. It is not an easy road, but we do make plans for the future - we have already scheduled our next cruise in May of 2010! Enjoy the moments as they come. This is a great site to come to for help and support. Take care and God Bless. Margaret

qwe
Posts: 125
Joined: Jan 2009

Laurie I was told on Dec 17TH 2008 I had rectal cancer and in Jan & Feb 2009 I had radiations and chemo then March 26TH I had surgery and the DR took out my anise and
rectum and sewed me up and now I have a colostomy my tumor was a soft tissue tumor at
the very end of the rectum so the Dr could not save the rectum I was a stage 2.I wish
you and your hubby all the luck in the world and my prayers are with you and your hubby.

clier
Posts: 29
Joined: Feb 2009

Laurie, the news is brutal for everyone who gets it. I was diagnosed w/ Stage IV last March, with 8 tumors in the liver. I have no idea of I'll make it 5 more years, but I'm hoping so, and living like I will. Chemo is a bit rough, and it gets cumulatively harder, at least it did in my case. The advice you're getting here about statistics being about big groups is so true - my doc said "I know the stats, but I have no way of placing you on that statistical curve". In other words, he can't predict for us. I traveled quite a bit during the first 4 months of my 6 month chemo regime (Florida, DC, Europe, upstate NY). The last 2 months were tough. I'm a month out now & it's still a bit hard, and I just got another diagnosis that there are probably 2 more tumors that have cropped up.

Look, long story short, give yourself a break. You'll panic for a bit, and then you'll get your head together. Friends help, discussion boards help, docs & nurses help, faith helps.

If your man is Stage II, you've got a great shot.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Laurie.

A cancer diagnosis is always an unpleasant surprise. It can really mess with your mind in so many ways. I'm coming up on 2 years (Nov. 23) since my surgery. I was diagnosed Stage 1 and didn't have chemo or radiation.

Even a diagnosis at an early stage is devastating at first, but do know that it will get better. There will always be moments when I get scared or worried, but I'm so much stronger than I was in the beginning. You WILL feel normal again, I promise.

*hugs*
Gail

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Some wonderful people here Laurie! I just read their posts and thought, WOW what an incredible bunch of men and women. Who truly do understand and who really care. Yeah, we do :)

The Cancer Shock is something we all experience. Especially when it comes out of the blue, and it does have the potential for changing everything. My first grandchild was born 4 days before my diagnosis. Talk about a huge swing from this cloud of total grandma bliss to gut wrenching Cancer Shock. It was a very very long time before I could hold him without crying. It was like watching my future die right before my very eyes. What helped more than anything was a routine, day in, day out and just the passage of time. You totally need to start with the belief that YOU WILL GET THROUGH THIS- NO MATTER WHAT, YOU WILL GET THROUGH THIS!!

Yes, sign the Hawaii dream home papers.

I would treat the surgeon's comments as his own and coming from a SURGEON. Colorectal?

Next, my tumor, also just barely in the fat layer and no doubt from MY surgeon that it was indeed 3B (I also had lymph node involvement hence the stage 3). My surgeon also did not visually notice any spread to other organs. HOWEVER- it was my oncologist who ordered the PET scan and it was those results that staged the cancer. Lesson learned= wait until all the pros give their pieces to the puzzle.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Dear Laurie,

I am so glad you found us. My husband also has cancer, he was diagnosed at age 51 in January 2009. It was the shock of our lives as he was a very healthy man and his colonscopy was routine as well. He was stage at IIIc after surgery.

I know these first few weeks are absolutely crazy. It does settle down. You make a plan, find hope, get your support system in place and forge ahead.

In regard to the Hawaii house, by all means go for it! We live on Oahu and I can tell you the beauty and splendor of our beautiful island lifts are souls every single day. We find healing in the ocean, in the daily walks, even just driving to work. It was 11 years ago that Dick and I said "Why wait until retirement to live our dream, let's do it now." We have been in Hawaii for 10 years and we have loved every minute. Hope to hear you have bought the house and are making good use of it.

Aloha,
Kathleen

laurie83833's picture
laurie83833
Posts: 63
Joined: Oct 2009

EVERYONE thank you soooo much, you have all helped more then you know. K. so we are going to finalize the Hawaii house, plus we are going to get our Halloween costumes for the annual Halloween parties we go to. I have already promised myself I will wake up in the morning and greet my hunny with a postive smile and a bubbly attitude that will start out our day! I've been trying to do that anyways but now I can do it and really feel it! ~Thank you!

Hugs to each and every one of you!
Laurie

P.S. Bob (and whoever else would like to) yes by all means add my hunny Denny to your prayer list!

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