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Colon Cancer

mary roberts
Posts: 9
Joined: Mar 2009

Hello: I have just had surgery on March 13 with a diagnosis of metastatic colon cancer. I find out more tomorrow about my future chemo treatments and some of the rest of the pathology report. I am nervous about the final diagnosis but hope that it is a treatable cancer. My husband and I had a visit a oncologist that did not give up much hope at first so have had a rough week feeling hopeless. I have heard good stories and hope to hear more. My main concern is if I should stay in Kansas City for my treatment or look into treatment at one of the Cancer of America Treatment Centers. If anyone can shed some light on this I would appreciate it.

Mary

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

HI Mary, welcome to our forum. I'm so sorry to hear you're ill but please, have HOPE! We have loads of people here who can share your story and share success!

Click on each picture and read other stories! I think you'll be surprised. Don't give up!

Diane

kmygil
Posts: 881
Joined: Feb 2007

Hi Mary,

First, I'm so sorry you are here to begin with. HOWEVER, this is a forum that is priceless. I know it saved my sanity:-) You will find many answers, comfort and reality checks here that you can't find anywhere else. Sometimes your family is too hard to talk to, and we all know that no matter how nice your doctor is, they are busy, busy, busy.

That being said, in your shoes I would find another doctor/medical team. There are a lot of Stage IV survivors here who can give you better advice than I can, but I think no matter what stage you are at, you need a positive medical team that is on your side! If you cannot find one in Kansas City, do check into on the the Cancer of America Treatment centers, or better yet, find a way to work with MD Anderson in Texas. They are at the forefront of this fight and are definitely on your side.

I can't offer much more than that, since my situation was not so advanced. You will probably be hearing from Stage IV survivors before the day is out. Meanwhile, know that you are in my prayers and I am sending positive energy your way!

Hugs,
Kirsten

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

My first comment would be: doctors are the absolute worst in communication skills
when they are the ones who should give us hope.....so many of us have encountered
this problem with many oncologists and have gone on to others who were hopeful and
offered several options for treatment.

So that is a big reason to have hope and also to find another oncologist.
Not sure about the Cancer Centers of America.....they advertise a lot, but
that means nothing.....and I think I came across some negative feedback from
some on other cancer websites. However, if you are close to any of the national
cancer institute or national institute of health centers; they are the best for
treatment, research, etc. There is one in Texas, Chicago, Georgetown near Wash D.C.
You might also call your local American Cancer Society chapter and see if they
can give you a list of respected oncologists in your area who specialize in colon
and rectal cancer treatment. Here in Cincinnati the ACS has a colon cancer task
force that works on several projects and when I wanted to find another oncologist
I did not hesitate to ask the two docs (who are gastroenterologists) on the task force and they gave me names.

Visit us often on the board; we can offer support, positive stories and suggestions.

Barbara

mary roberts
Posts: 9
Joined: Mar 2009

H Kristin:

Thanks for emailing me and giving me encouragement. My oncologist team is a good one and i want to have the faith in them. I had a bad reaction to the first chemo treatment and the next one is coming up so I hope it goes smoother.

I hope you are doing well. If you have time please email your story.

Take care,
Mary

Cheryl Z
Posts: 36
Joined: Mar 2009

Hi. My name is Cheryl and my husband Howie of 32 years was just diagnosed with colon/rectal cancer. He is scheduled for surgery on April 13th and to say I am scared is an understatement. When we got the news on Thursday it was like being punched in the stomach. We had no idea that we would get this devestating news.I feel like I am walking in a fog. If it was me that was diagnosed I would handle it much better. I never imagined he would get as sick as this. You see, five years ago I was diagnosed with pulmonary fibrosis and COPD. The life expectancy was 3-5 years. I am fighting this and have just passed the 5 year mark. Now every extra day that I live is a blessing. I would not have been able to do this without the support of my husband and children. Now I need to see my husband through this crisis the way he was there by my side. We have vowed to fight this together the way we always do but I am so scared. I want to grow old with him. Any words of wisdom or encouragement would be greatly appreciated at this time.
Thank you for listening.
Cheryl

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cheryl,

Are you, by chance, the Cheryl who posted a while back? I don't remember if that Cheryl was writing about herself or her husband- not sure if that was you or not. Many people were hoping to get in contact with that Cheryl again. Whether that was you or not, I'm glad you posted here!

I'm sorry to hear about your own struggles but now, as you said, it's your turn to support and walk beside your husband with his struggles. As you read many different postings here on this site, you'll discover that there are many of us who have been through a lot, but are doing pretty well. Several people are living several years since their diagnosis. My own story is that I'm a stage IV cancer patient who has been fighting and kicking cancer's butt for over a year and a half now. I'm to the point where I should be doing some maintenance/prevention treatment and am glad to say I can function as a normal person, busy wife, busy mom of three, etc.! It seemed very grim at the beginning, but I'm doing well! You didn't say what stage your husband is- not sure if you know or not. Since the surgery is already scheduled, I'm assuming they either know or highly suspect that his cancer hasn't spread beyond the colon. If that's the case, then your husband is very, very likely to fully recover and do very well! Even if it goes beyond that, there is so much in the works with new treatments coming out, that there is a LOT of hope!! DON'T listen to or believe the dreary online statistics. As you may have read on other posts, the advice about statistics is that in order to be a statistic, the patients had to have been diagnosed and treated at least 5 years ago. Five years ago, many of the newer treatments that are available to patients today were not available then! So... those statistics are NOT accurate for us anymore today! I guess statistics, by their very nature, will always be outdated, having always been based on the "5 year survival statistic".

So... long way of saying DON'T give up hope and be encouraged that there's LOTS that can be done today! If you're dealing with an oncologist who is negative and tells you there's no cure, etc.- FIND A DIFFERENT DOCTOR because that information is NOT TRUE!

Best wishes and God bless-
Lisa

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Cheryl,

I am so sorry for the struggles you've endured! And now your husband...wow, what your family has been through. We are here to help however we can. My first suggestion is to post this as a new thread so it doesn't get lost in this one. Everyone will want to 'meet' you.

I was diagnosed 8/07 and I'm stage IV. Things became easier to deal with once I started thinking of this thing as a chronic illness to be managed as such. It will give you a new perspective. Your husbands treatment plan will vary depending on his stage and individual situation. We will be here when you get that info and have questions. Please, please don't look up stats on the internet. They are of NO value and will just make you crazy.

It sounds like you have a wonderful relationship with your husband and that will help you both. Support each other right now and don't neglect your own needs. He needs you to be strong and you need to take care of YOU for that to happen.

Hugs,

Kimby

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Cheryl,

You and your husband have already had a lot to deal with, and this is just other hurdle. It must seem awfully heavy to you right now.

I pray that your husband will be better soon.

Please come to this site often and let us know how it's going. We'll be happy to give you all the encouraging words you need.

*hugs*
Gail

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Mary,

Welcome to our site. I'm sorry you have to be here, but this is a great place for comfort and information.

I pray that you will find a doctor who will be more positive.

*hugs*
Gail

Cheryl Z
Posts: 36
Joined: Mar 2009

Hi Everyone,
Thank you so much for the words of encouragement. First let me say that I do not know how to start A new thread (not very good with computers). Sorry if I posted in the wrong place. I am also not the Cheryl that posted here before.
We don't know yet what stage he is in. All we know is that his CEA level is elevated and that the bowel wall is thickened. The cat scan shows that the cancer is in the bottom part of the colon and top part of the rectum. He will go this Thursday for a Sigmoidoscopy and they will inject dye into the tumor. When they operate on the 13th we will find out if it has spread to the lymph nodes and just take it from there. We are really confident with the doctors that are treating him. We already saw the pictures of the colonoscopy that shows the tumor so there is no sense in putting this off for a second opinion. We just want to deal with this immediately and move on. We don't listen to statistics because when I was diagnosed with Pulmonary Fibrosis, the first thing I did was look it up on the computer. You are right. It did drive us nuts. Each web site was worse than the last as far as statistics went. We were so scared that I would die within 5 years and never get to do what we wanted to do. Then We just decided that we would spend whatever time we had left just living each day like it was our last. I mean really, who was to say that we wouldn't get hit by a bus or something anyway? So we just got on with our lives and took each new disease with a grain of salt. Since being told that I have this disease I have also been diagnosed with COPD, diabetes, sleep apnea, neurocardiogenic syncope, peripheral neuropathy, degenerative disc and degenerative joint disease. Three weeks age I ended up in the hospital due to having mini strokes. But we still survived. I think that is because we have a great outlook on things and refuse to give up even though I walk with a walker and am hooked up to oxygen 24/7. My husband and I have a terrific relationship. We are each others best friend. He was always there when I needed him and I will certainly be there for him for as long as he needs me. I keep telling him he can't go anywhere yet because I am not ready to give up on either one of us. Sorry for the long post but thanks to all for listening.
Hugs to all
Cheryl

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cheryl,

I was glad to hear back from you. I'm so sorry for all you have been through. If you are someone who would appreciate prayer, I would like to offer that. It sounds like you have a fairly upbeat attitude in spite of it all, and that's very important.
Plese let me know if I can keep you and your husband in prayer, as I would like to.
Take care and let us know how it continues to go.

Blessings,
Lisa

Cheryl Z
Posts: 36
Joined: Mar 2009

Hi Mary,
First, please let me apologize for posting my story on your thread.
As far as moving to a new place for treatment, the only advice I can give is that I would move only if I did not have total confidence in my treatment where I was. I have many medical issues and have fired many doctors for that same reason. I did not feel comfortable with the treatment that was offered to me. I feel that this is my body and my life and I need to be in control of what is best for me at the time. Many of my doctors were not experts in the different issues I had going on at the same time and they were doing more harm than good to me. You need to take control of your own situation and be comfortable with it. I hope you have a speedy receovery from your surgery and wish you all the best with your treatments.
Cheryl

mary roberts
Posts: 9
Joined: Mar 2009

Hi Cheryl:

Thanks for sending me an email. Things have gotten a little easier since I did change my oncologist that has a more positive attitude towards beating my cancer. I start my chemo treatments starting on Tuesday. I do feel that I will receive the best care that is available here in Kansas City. If this changes I may pursue other avenues. It sounds like your diagnosis was somewhat similar. My diagnosis was stage IV colon cancer of the cecum which had spread to my ovaries. Luckily the surgeons did a total hysterectomy and removed the appendix and two lymph nodes. The surgeon also removed 4 inches of my colon and re-sectioned my colon.

Good luck on your future treatments and yes I do agree to think of this as a chronic disease that I plan on living with. I have a wonderful family and many supportive friends who also know how to have fun.

Take care and Happy Easter,
MARY

dmdwins
Posts: 453
Joined: Aug 2008

Hi Mary,

My name is Dawn. Your story is very similar to mine. I too was diagnosed with Stage IV colon cancer with metastasis to the ovaries(not many of us out there-only about 5% go to the ovaries vs.liver or lung)in Oct.07. When I had my initial colon resection only one of my ovaries was removed because the ovaries actually looked normal at surgery but came back positive for metastaitc cancer at pathology a week later. I wanted to have the other one out also but the onc felt it was more important to have chemo. I was NED after chemo but convinced onc to have other one out also 11/08 and that was positive also.

I just want you to know I can identify with you. I remember at diagnosis feeling that there was very little information out there about metastatic colon cancer to the ovary and that much of the information did not pertain to my situation. I also want to share with you that my oncologist had a similar patient to us and she is 10 YEARS out and doing great!!!

I'm in your corner and willing to chat anytime.

Dawn

mary roberts
Posts: 9
Joined: Mar 2009

Hi Dawn:

This email has made my day. I had a bad reaction from my first chemo last week which then I ended up in the hospital with chest pain from nausea/vomiting. The heart team ran me through extensive testing which set me back again in my digestive track because I was already so ill from the chemo. I am still not doing too well today and the oncologist is changing some of my treatment for the next treatment.

I have had trouble finding someone like you. I am so sorry to hear that they did not perform a total hysterectory on you in the first place. My Gyn-Oncologist surgeon was the saint that found the origin of the cancer in my cecum of the colon. She saved my life.

Please email me back more about you and let me know how you are doing?

Thanks, Mary

dmdwins
Posts: 453
Joined: Aug 2008

Mary,

So sorry to hear that you had a bad reaction to your chemo. What regimen are you on? I did Folfox and Avastin combo for 6 months(12 treatments)and was supposed to do 6 months of Avastin alone but ended up with a pulmonary embolus and had to stop. I have not had any chemo since 5/08.

I had my second surgery 11/08 to take out the other ovary.Even thought it was positive for metastasis(microscopic only) they felt it was probably there originally and not a new met. My oncologist and an oncologist at Mayo both agreed since there was no other evidence of disease and my pelvic washings were negative to not do additional chemo at this time.

I am actually doing very well. I see a naturopath nutritionist and have changed my diet and using supplement. Really the only side effect I still have is fatigue. That may not be chemo related but running like crazy with the kids. HAHA

I will have my next Pet/ct at the end of May and am anxious to see the results. Keep you fingers crossed.

Keep me updated on how you are doing and lets keep chating.

Smiles,
Dawn

mary roberts
Posts: 9
Joined: Mar 2009

Hi Dawn:

It sounds as though you are doing quite well now and I am so happy to have someone like you to correspond with. If you would ever consider talking to me on the phone I would really appreciate it. I am not sure if anyone post their personal phone numbers on this website. Do you know if it is safe to add this to the post?

My chemo therapy includes quite a bit. I am receiving 5FU which I know of a woman who used this and beat her colon cancer 10 years ago. This time I am also supposed to start receiving Avastin. I have the treatment every other week and I also bring home the 5FU cartridge so that it runs in me over 48 hours. The first time I received my treatment the drugs that I took were not sufficient for the nausea/vomitting. The doctor has prescribed something different and hope that it will go smoother.

Take care and kiss the kids. My children are 33, 30, and 24 and so I sure miss the days when they were little ones but I know how exhausting it can be just raising them also.

God Bless you and I will say a prayer for you and the future PET scan.

Mary

dmdwins
Posts: 453
Joined: Aug 2008

Mary,
I believe you can send me a private message. I have not done this before but there is a recent post called "What is pm me" or something -that gives instructions on how to send a private message. You can try that and see if it gets to me. I would be happy to call you and chat. I believe from what you have told me your chemo is the same as what I had except I had oxaliplatin also with 5fu (pump for 48 hours also) lecovorin(the combo is called folfox)and Avastin.

I am doing well and you will be too someday. The chemo is tough-but worth it.

Hope to hear from you soon

Dawn

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Just a little word of warning... I wouldn't advise posting phone numbers on any public board. Although we all kinda, sorta, know each other... these are only the people who post messages. There could be lots more who just come through and read. Once a phone number is posted, there's no telling who has it.

Your best bet is to sent a Private Message (PM) and then you can share personal information like phone numbers or email addresses.

To send a PM, look up at the top of the screen for the word "Home". Click on that and it will take you to the Home page. In the middle of that screen is a section for Private Messages. Click on "Inbox". Once you are in your Private Message inbox, you can create a new PM... just remember you have to address it to the person's CSN Name. So Mary, if you are going to send a PM to Dawn, you would address it to dmdwins and Dawn, if you are going to send one to Mary, then you would address it to mary roberts.

When you receive a PM, at the top of any page you might be on will be a big announcement "You have 1 Personal Message". You can click on that announcement and it will take you directly to your inbox... or you can do the above to get to the inbox.

If you have any questions... just ask :)

Huggggggs,

Cheryl

dmdwins
Posts: 453
Joined: Aug 2008

Cheryl,
Thanks for the tutorial for PM messaging. I had recently seen that you could do that but really wasn't sure how. Now I know!!

DAwn

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

You are welcome :)

Enjoy!

Hugggggs,

Cheryl

mary roberts
Posts: 9
Joined: Mar 2009

Hi Dawn:

I did find out that my chemo treatments are the same as what you had received. I just have a few questions that I would like to ask you personally. My phone number is 816-444-4578. I feel safe enough doing this.

You sound like you have been successful after your treatment. I hope to hear back from you.

Thanks for keeping in touch.

Mary

mary roberts
Posts: 9
Joined: Mar 2009

Hi Dawn:

I did find out that my chemo treatments are the same as what you had received. I just have a few questions that I would like to ask you personally. My phone number is 816-444-4578. I feel safe enough doing this.

You sound like you have been successful after your treatment. I hope to hear back from you.

Thanks for keeping in touch.

Mary

jenben59
Posts: 144
Joined: Jan 2009

This is a great place to get your questions answered and wonderful support. I'm sorry to hear about your diagnosis, but there are people here with stage 4 that have been around a long time and are very knowledgeable. My opinion on Cancer Treatment Center is very negative. When I first found out I had cancer I remember seeing the commercials on TV, so I got online to find out what they were all about. In a nutshell, I had a brain tumor 4 years ago and had excellent insurance. When I could not work I paid it through COBRA until it ran out. Needless to say, no company would insure me after a brain tumor so I was eligible for Medicare. I have that and a Medigap policy. When I contacted Cancer Treatment Center and was getting information the first thing they asked me about was insurance. When I told her I have Medicare and a Medigap policy, she kind of "blew me off" and basically was not very interested in having me as a patient. I was mad. I was upset enough about finding out I had cancer, I didn't need the attitude. Their commercials on TV paint a pretty picture, but I don't trust them. I go to MD Anderson caner center and they accept all insurance, work with you on everything, (social workers, insurance claims, massage therapy, wigs, support groups for everything, and more) The doctors/oncologists do not "blow off" anything you have a question about and if you have pain or complain about side effects or symptoms they check it out and will run tests. If you are near or can get to MD Anderson I strongly suggest you check it out. You will find great people there, from the office staff to the aide and nurses that take care of you. I wish you well. If I can help with anything, please let me know.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Wow... I don't think I had ever heard that part of your story before. I'm soooo sorry to hear you had to experience that kind of attitude! Since we get all the American television networks up here, I have seen the ads for the Cancer Treatment Centers and I was wondering what they were all about (our facilities run on a slightly different concept, although from what I gather, there are similarities with having the resources all handled by a cancer treatment facility). The ads certainly do make them sound like very caring, peaceful places. What I couldn't figure out from the ads were if these were places you went and were treated by doctors/surgeons/etc. or if they were places you actually went to stay at, sort of like a hospital.

I wonder why the gal sort of "blew you out of the water" when she found out what kind of insurance you had? I take it these facilities are private for-profit businesses and not related to a hospital?

Well, I"m certainly glad you did end up with a centre that you are happy with! I've heard of a few people on the boards here refer to MD Anderson. Is this a single facility, or a facility that has branches in other states? I'm thinking that it must have branches in other states... either that, or you all live in the same state :) :)

Huggggs,

Cheryl

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

These stories are why I want the US to have a robust health care reform, I have great care and coverage, I think all of us should too, COBRA is a joke, if you have a spare thousand a month to pay after loosing your job, it works but who does have that kind of resources.

I;ve been silent awhile, I always like to read your posts Cheryl, 11 treatments down and two to go, and I can't say that enough.

Mike

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

WOW... only 2 more to go??? The light at the end of the tunnel is so close now you can almost touch it!! I know it probably seems a lot longer for you, but it seriously feels like just a couple of months ago and you were about to start the chemo journey. You had questions that we all have when about to begin and then once you started, I remember comparing notes, so to speak. And all the discussions on Health Care Reform, the pros and cons... and the misinformation. Oooh, those conversations could get quite heated... a topic that shouldn't really be that heated because surely everyone agrees on what the end result should be... but there's lots of discussion and suggestions on how to get there. I found some of the opinions fascinating and others kind of scary. It definitely opened my eyes!

Now, here we are, how many months later and you only have two more treatments to go!! How amazingly wonderful is that??? It's too bad you didn't live closer, or I didn't live further south... we could have one heck of a celebration dinner!

But it's countdown time now, so make a big to-do about these last two treatments... and try not to get too upset when it's all over :) :)

Huggggggs,

Cheryl

mary roberts
Posts: 9
Joined: Mar 2009

Hi Jenben:

Thanks for the encouragement. I do not feel that I need to go MD Anderson at this point with my treatment. We also have KU Medical center close by that would be another option.

I hope that your insurance situation is helpful in your search for better care. I also found out that stage IV is pretty much an in for disability which I plan to pursue since I have lost my job over this disease.

Take care and hope to hear from you soon.
Mary

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