New to the group - Stage IV

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

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 Avoid internet statistics - they have nothing to do with you and are frequently outdated.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

hopefulone said:

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

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

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.

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

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

dash4 said:

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

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

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 said:

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

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