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New to the group - Stage IV

christeleb's picture
christeleb
Posts: 60
Joined: Apr 2007

Hi, my name is Christele. I was just diagnosed 2 weeks ago with colon cancer with mets on liver. I had no symptoms, nothing. It was found by accident. I'm 36 and I have a 9 months old baby. I feel like I have better things to do in life than dealing with cancer, but i now have to face it...
I'm having surgery on tuesday May 8th to remove the tumor on colon and maybe they'll do resection on liver as the same time.
I'm looking for people that have gone through this as I'm really scared of the future and everything that's going to happen to me.
Thank you so much!
Christele

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

Hello Christele and I'm so sorry we have to meet in these circumstances. I am a bit older than you (48) but I am a single mother of two school age children and can remember only too well the sheer terror I felt on diagnosis. I had a tumour the size of a small football removed from my colon in February and, although I was very scared of the operation, it wasn't nearly as bad as I had feared. In fact I had virtually no pain at all (I woke up after surgery with an epidural, which stayed in place for four days). Four days after the operation I was eating again, and within a couple of weeks my digestive system was more or less back to normal. Perhaps it helps being younger than the average colon cancer patient.

I was Stage III but there are plenty of long-term Stage IV survivors on this board, who have had successful liver resections, or have even cured themselves using alternative methods (look up Scouty's web page).

I have now embarked on chemo, and am actually writing this with a pump attached. So far it hasn't been nearly as horrendous as I had anticipated ...

Good luck!

Catherine

mjay2
Posts: 7
Joined: Apr 2007

Hi Christele~ So sorry for your news. I don't think there is ever a good time to deal with cancer. But I can't think of a better reason to fight that beast than your 9 mos old baby.

For whatever reason, you now have cancer. The best advice I can give is take the time to be mad, don't stuff the fear-- tell people--- and most of all, look for the bright sides of life. A positive attitude will get you through anything. Of this I know. It isn't always easy, but it does make it better.

MJay2

Betsydoglover's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

Hi Christele -

Welcome, but so sorry you have to be here. I am a Stage IV survivor, coming up on my 2year anniversary in another 3 weeks - 20 months NED (no evidence of disease) and 17 months off chemo. You can do it to - just take it one step at a time, and surgery is the first step.

Check out my web page - http://www.acscsn.org/webpages/view?object_id=csn:rel:feworks7451522945001144017381 - as well as the web pages of others - there are many. Avoid internet statistics - they have nothing to do with you and are frequently outdated.

SO, concentrate right now on your surgery and then realize that once you have taken that huge step, there is time to plan the next steps. Colon surgery is not so bad (not fun, but not so bad) - don't know about liver surgery, though I am pretty sure it isn't fun, because my liver issue was so questionable - though in the end biopsied as a true issue - that no one even considered liver surgery at the same time as my colon surgery.

Good luck, take care, and keep us posted. I'll be thinking of you.

Betsy

christeleb's picture
christeleb
Posts: 60
Joined: Apr 2007

Thank you all for getting back to me.

This support group is amazing. I will keep you posted after my surgery.

Christele

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Christele, bummer that you had to find us but you sure came to the right place. I have a 5,8,& 19 yr old so I understand the shear freak out part of being diagnosed. There are many stage Iv colon cancer survivors here that have beat the beast and many of us are still fighting a good fight and winning. I won't say it will be easy but I will tell you this journey can be positive. You will get through Surgery and then go on to fight. We will be here for you. Thinking of you on Tue.
Limey

hopefulone
Posts: 1048
Joined: Jan 2007

Hi and welcome. As others have said, sorry it's under these circumstances . My husband is also stage IV with multiple liver mets. He's had the colon resection already(which was done laproscopically and stayed a total of 5 days in hospital. He recovered well from the surgery and in that regard we were very fortunate, it was much better than we expected ) He's now undergoing systemic chemo and not a candidate for liver resection at this time , although his liver mets are showing signs of shrinking and hopefully there will be other options available to us so I can't tell you about the liver resection part, but I'm hoping some day I'll be posting that experience.

This is a great support group. You'll find much encouragement here and don't be afraid to post questions, vent or whatever! Stay away from statistics, they are old and outdated and are pretty much an individual thing. Ask your doctors lots of questions, write things down and don't be afraid to get second, and third opinions if necessary. We are leading a fairly "normal" life (as normal as can be under these circumstances) and take it one day at a time. That seems to be the best way for us to deal with this . Get thru your surgery, then you will know the treatment plan and options. I know your scared . We all were and are at one time or another . God Bless. You'll be in our prayers.

Diane

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Hi Christel,

As others have said, sorry you have to be here, glad you found us. I truely wish that I had found this site at my diagnoses rather than after I had already finished chemo and was so depressed I could barely function.

Here are some things I wish I would have known from the beginning.

Learn as much as you can about what cancer is and what options for treatment exist (both conventional and unconventional). There are some great suggestions for books on this board alone. Two that stick to my mind are Beating Cancer with Nutrition by Patrick Quillin and Spontaneous Healing by Andrew Weil.

During my journey, I had trouble learning because I would get stuck on statistics and break down. Please, try to ignore statistics. There are some great sayings on this board and I'm sorry I don't remember who started them, but I live by them. Odds are for Vegas and Expiration Dates are for Dairy. No doctor can say with certainty how long you have to live or what chance this will take your life (or won't). Each individual is different and there is NO reason why you can't be part of the percentage (no matter how small) that wins. There are many long term Stage IV survivors here.

Sadly, you are going to find (more-or-less) that your story is pretty common here.

I was diagnosed the day after I turned 27 with stage III and had a 15 month old to take care of. I endured six months (12 treatments) of chemo.

It was a hard journey, but one that I am better for going through. I found my family, my friends, God, and a healthier lifestyle.

Please come back to update, vent, ask questions, anything. This is a wonderful place to find support and caring.

Take Care,

Tricia

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Christele, Welcome to the group....we have been dubbed the semi-colons, and you'll be a card carrying member after your surgery. I am nearly 3 years out, stage III, No Evidence of Disease. I was diagnosed on my baseline colonscopy (age 53); no symptoms. You are really "lucky" to have it diagnosed before you went on to deveop symptoms. (I was 35 when I had my first baby; and because you have better things to do with your life, you will face this down.) The surgery is not so bad, particularly with an epidural. Pay attention to pain control and listen when they say get up and walk! The next steps will be determined after surgery, so an oncologist you can talk with is imperative.
You will soon hear, I'm sure, from Stacy, one of our 5 year+ survivors of stage IV, with her own little ones who gave her courage. You will get through this, one step at a time, and this site is a great spot for support every step of the way. Judy

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Hi Christele,

As the others have said, we hate you "have" to be here but you will not regret meeting this wonderful community called the semi-colons!!!

I am a stage IV survivor (mets to my liver and left lung). I am currently 2 1/2 years post chemo and NED (no evidence of disease) and feel just fine.

READ, READ, READ!!!!!! "Beating Cancer with Nutrition" by Patrick Quillan will give you some ideas on how to compliment what the medical docs do. Attack the ******* cells from all angles is my recommendation to you. You can check out my personal web page here is you want to learn more.

Stay in touch and ask as many questions as you need to. You now have experts at your disposal who are more then willing to help.

Lisa P.

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Christele -

Welcome to our family. So sorry it's under these circumstances, but just know that you're not doing this alone. There are so many people here who have faced the dragon just like you, and CUT ITS HEAD OFF! Keep a good attitude. Remember what John Wayne said, "Courage is being scared to death but saddeling-up anyway"

- SpongeBob

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I think we need to make that our new motto...."No symptoms-no nothing"...

I was 'only' stage III, but then I topped it off with breast cancer 6 months after resection surgery...sigh...

I am 2 years clean on the rectal, 1 year on the breast...NED is SUCH a handsome fellow!!! (No Evidence of Disease).

Welcome to the family! You will find so much comfort and support here! Where else can you talk freely about the 'socially unacceptable' cancer????

Hugs, Kathi

dash4
Posts: 304
Joined: Dec 2005

Hi, My husband is Stage IV since 10/04. He started with chemo and then a liver resection and ablation and colon resection all during the same surgery. Here is a great website to tell you all about your liver and more than you even knew there was to know about it!! The address is http://www.livercancercenter.upmc.com Hope it helps youwith any liver questions. Good luck to you-you will be in my prayers.
Dash

jams67's picture
jams67
Posts: 927
Joined: May 2006

My friend Wallis Marsh is part of this group!
The advise he gave me was to take enough time after diagnosis to make sure you have a top notch surgeon. I was ready to rush into it being stage iv, but he said to make sure you have a liver surgeon who has had lots of experience with livers. So I'm just going to pass that info on to you.
Christele,
I hate that you are here, but since you have to deal with this demon, I'm glad you have found this wonderful site.
Jo Ann

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

Hi Christele,I am very sorry for your news, but as you have already read here there are so many stage IV survivors, and that is where you have to put your thoughts,that you are going to be one of them,you will get all the strengh you need from God if you just ask him, and of course from your 9 month old baby,I can tell you that right now you are going through the worst part which is right after dx. Things will get better, and try to visualize your self a year from now enjoying a cancer free life. Big hug for you

christeleb's picture
christeleb
Posts: 60
Joined: Apr 2007

Dear all,

I'm amazed. I logged in this morning and seeing all these responses made me feel so happy.
Thank you, thank you, thank you!!!
It feels great (especially after breaking down last night as I feel like I'm mourning my "old" life....)
Anyway, you guys are great.
Christele

minniemoose's picture
minniemoose
Posts: 10
Joined: May 2005

Hi chris...I was stage three pushing stage four colorectal cancer....I had surgery three years ago after 20 radiation treatment...after surgery 6 months of chemo...I now have a colostomy...which I do not muchlike but the alternative was not so good.....I am 65 years old...second bout of cancer (had breast 11 years ago).....am still working and enjoying life...we have a sailboat that is great....you will get thru this...you are young and healthy....
Your future will be just as good as you thought it was going to be... and you have a family that love you...I hope all goes well for you and I am sure you will be fine...it is scary when it comes on you so suddenly...but it is amazing how your body and senses kick in and you will get thru it fine....
Don't be scared...you are going to be fine....every morning you look in the morror and say...."get lost cancer you are not wanted here"

My very best to you....God Bless

ahamilton2
Posts: 32
Joined: Dec 2006

Dear Christele: I'm sooo sorry about your diagnosis, but I'm glad you came here. There are awesome survivors here who'll encourage you.

I was diagnosed with StageIV colorectal when I was 42, which was two years ago. I had a total of 18 (!) tumors: 5 in the lungs, 1 colorectal and 12 liver. Now I'm NED! No evidence of disease.

First, you need to gather as much info. as you can on your disease. I know you have a newborn, so you're awfully busy. Perhaps you can get someone else to gather info for you & help you make decisions. IGNORE grim statistics. Chart you own course.

The website & FREE book that helped me the most was www.blochcancer.org. This guy BEAT terminal lung cancer & his book gives you all the information you need to take control. I highly recommend it.

My best advice is to get to a MAJOR cancer center near you for a second opinion BEFORE you undergo any surgery or treatment. It saved my life. Which state do you live in??

I got chemo before all my surgeries, and chemo afterwards, because I got second and third opinions from major medical centers.

Again, I'm sorry for your news but I do know how you feel. My StageIV was only discovered after I got my gallbladder removed, so it came as quite a shock to me too.

Best of luck! Stay strong & keep in touch.
Aileen

CathyE1962
Posts: 2
Joined: May 2007

Dear Christele & others,

I'm so sorry for the diagnosis for each of you yet celebrating the recovery of those of you who've reached it.

I am here not as one having been diagnosed with rectal cancer but as the sister. She was diagnosed last week when a colonoscopy revealed a tumor of the rectum. It is large enough that it prevented the surgeon from being able to reach the colon. An appt. yesterday with the oncologist revealed 4 small spots in her lungs but with a clean abdomen and pelvic area, which we're thankful for. There is some lymph involvement around the site of the rectal tumor. More than likely she is stage 4, at best stage 3. She's scheduled for a port insertion on Monday, a PET on Tuesday and then 4 days of constant chemo, followed by 5 weeks of radiation, then another 4 days of constant chemo, then surgery and perhaps another round of the chemo/radiation. She's 53 and a single parent of 3 children, ages 13, 11, and 9.

She is actually dealing with this diagnosis much better than I. While she focuses on the positive I'm focusing on the negative and I know this has got to stop. I will be one of her major caregivers but thankfully there is a lot of family and church/friend support. The advice for ignoring the statistics has been most helpful to me as those numbers are what have had me focusing negatively. Thank you so much for the advice and sharing here.

I wish each of you a long, healthy, and happy life.

Cathy

ahamilton2
Posts: 32
Joined: Dec 2006

Dear Cathy: I'm so sorry to hear about your sister's diagnosis! But I know that she's lucky to have a sister who's so involved in her care. Support means the world!

I'm a Stage IV rectal cancer survivor. I was diagnosed in 5/05 and I was only 42. I had one rectal tumor, 12 liver tumors and five lung tumors. Total of 18 tumors. I'm now showing no evidence of disease.

I sought 2nd and 3rd opinions, which I know saved my life. As evil as cancer is, it can be beat!

When I was first diagnosed, I found this website that gave me great information and hope: http://www.blochcancer.org/
The website & foundation was started by a guy who BEAT terminal cancer! The website is full of important information and they offer a FREE book to ANY cancer patient. Check it out! I got my cancer education from this source.

If you ever want someone to listen, just email me. God bless you & your sister.
Aileen

cindyfug
Posts: 2
Joined: Feb 2007

Christele - God bless and best of luck on Tuesday. There will be many angels who have been through the same thing praying for you. I am also a Stage IV survivor - never had any major surgery as it was considered inoperable. I surprised them all and I am now in remission (about a year). There are so many special people out there who are here to encourage and give you hope.

1Carly
Posts: 4
Joined: Apr 2007

Hi, you found the cancer early it seems. I encourage you to go through the operation and the processes after the surgery. I am praying for you. Do not be afraid. Speak words of affirmation to yourself during this time. Be positive.

conna
Posts: 1
Joined: Jun 2007

Hi Christele,
I am also new to the group and my boyfriend of 13 years had colon cancer with liver mets and in 13 of his lymph nodes. I just wanted to help you through this if I can. Tom (my boyfriend) and I went to the onc back in 2002 and he told us basically there was nothing he could do. We could not accept that answer so we got a second opinion. The new onc sent us to a surgeon at University of Chicago and he took out 3 feet of his colon and removed 3 lesions in the liver. Also did some chemo for a few months. He is doing wonderful. No evidence of anything since 2002. Please don't give up hope. One thing we have learned is you have to trust your onc doctor. If you don't, then get a second opinion. It saved Tom's life. Good luck to you,I will keep you in my prayers. If there's any other questions I can help you with, I am here.

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