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Newly diagnosed - WTF!

JimInPDX
Posts: 11
Joined: Mar 2011

I'm newly diagnosed with colorectal cancer stage IV. I'm 46 years old. I have one met on my liver. I am definitely scared. I have started to read "What Helped Me Get Through" by Julie Silver. Can anyone recommend other resources to help transition my fear to courage, hope, and peace? I'm getting a PET scan on Tuesday for additional confirmation of the met(s) and could really use some positive news that liver surgery remains viable.

I would LOVE to hear from survivors.

Jim

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

first i would like you welcome you here im just a caregiver but there will be people here soon to help you hugs tina

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I think the biggest thing you are going to find is that the biggest resource you have is JIM. That's the guy who's going to get you through this.

I was 43 when officially dx'd and am now 49, but steaming towards that magic number 5-0. I'm a Stage IV as well. I made it through the liver, but have been fighting the lungs now. With a solitary met in your liver, surgical resection would certainly be the goal to shoot from - to cut the cancer out physically, or ablate it with RFA, (radio frequence ablation). Plus, there are many options, there, but don't want to overwhelm you just yet.

You've stopped at a good destination by being here on the board - many stories of hope and survival here. All the folks here have direct experience with the disease as we are the front line people who do the work and we've had the experience and have walked down the roads that you are about to head down now.

You can read people's profiles by clicking on their avatar (pic with their name) and it will bring up a history of what each person has gone through and what has helped.

I go by "sundanceh" and you can just type in Sundance into the search field of the colorectal board and it will bring up posts that I've opened and talked about. My stuff might be a little too much for you just starting out, but might be of benefit to you down the road. I tackle the tough sujects of this disease, and I don't "sugar coat" the hard issus that we all face, especially as a Stage IV.

But remember, we can certainly "extend" our lives through treatments and surgeries and as long as we can do that, there is HOPE. I've seen many miracle stories happen here - one day I would like to be one as well.

Read the board, as this will help you immensely.

I'll cut you loose for now - nice to meet you and sorry for your Dx, but if you have to have it, then this board is the best place for you to be. You'll learn alot and will be a better advocate for yourself when it comes to discussing issues with your onc.

I wish you the best of luck and we'll be talking again I'm sure:)

-Craig

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Welcome to the board , feel sorry for your dx but you can beat the monster with the help of Doctors , God ,and attitude!
Hope to see you often!

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I was 43 when I was diagnosed with Cancer in the colon. I was told it was a slow growth adenoma cancer. It turned out I have Signet Ring Cell Cancer far more serious and far more metastasizing. The Cancer spread and 2 1/2 years later I have 4 tumors and another couple of hospital stays, FolFox Chemo just ended.

The first time I learned I had cancer. I held the brave face and cried by myself. We did not tell family or friends and we laid low for 6 months and after went on with life as usual. That was a mistake.

My second round with cancer we told close friends and family. I told my employees, that I was going to be moving slow for a while and that my time at work was going to be limited. I have had friends come out and tell me their family experiences with cancer. I have had clients tell me their family stories with cancer. I have a network of people whom call me at least once a week to say Hi for five minutes and cheer me on through the difficulties with Chemo. I do not feel sorry for myself like I did the first time. I am and will fight this out.

My recommendation is to find out as much as you can about your particular cancer. Many here can give you help to find resources for information. Then when you speak with your doctors you will be informed. (Studies done before 2005 have little relevance any more, and studies before 2007 maybe 50% relevance. That is how much cancer research has done the last few years. Older studies have worse statistical outcomes and can be depressing.)

This board has been terrific on finding out what the neuropathy and reactions to the various meds. Is this normal for most etc.... How to deal with the side effects of nausea diarrhea, etc.... Port or no port? (If you need chemo get a port!)

I think one of things to remember is that being sick from Chemo is a short time (6 months) out of one's life.

Best Always, mike

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

This month. I think for the first few weeks I was in shock, I know that I was confused and good info is almost impossible to find. The doctors at this early stage seem non-committal.

I will promise you this: it will settle down, there will be a plan, and you will begin to feel you have some control.

I am sorry to welcome you here, but it is full of great people.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

most all that you will hear from will be survivors.......Now, I know that that sounded kinda smart, but we deal with this through sharing, comfort, love for each other, and the uncanny ability to work through adversity and come out the other side or keep trucking along with remission or as some say chronic disease....Its not an instant death sentence, its not something that you just throw the towel in and say I quit either. Its a fight and normally one that will last predominantly for a year of head spinning tests, blood draws, tests, surgery, chemo treatments, etc etc etc..it will go fast, and in order to absorb all of this as it goes, you must do two things.
1) First deep breath and let out slowly and now your ready for a crash course in cancer nomenclature and verbage......
2) Secondly, if you stay with us we will assure you that your learned knowledge you will gather in here will be the best time spent in this journey in making you knowledgable about whats going on with you. Knowledge is how we battle this disease and keep our sanity. We are basically knowledgable enough to decide what we want as far as treatment etc...and the more you learn the better you can circumvent the system to keep you best interests ongoing...The more you know, the better you will feel...
You have lost control of things and knowledge will return that loss back to you, it will double for you to use as a tool to assure that you get the right treatment protocol and that you also don't get chitted around...You will find that this place will give you all the opinions that are updated daily, the newest of the new procedures available, and everything down to the wire on expectations of whatever they tell you you need to do for treatment and care......
I hate for you to have to be here, but you have certainly done yourself a large favor in the emotional and physical aspects of what you will go through and the ability to have 3000 plus friends that care about you as a family member, because we are...we talk about anything from poop to peanut butter...We try to accommodate this thread to cancer related issues and we have other threads for caregivers, religion and spirituality, all other types of cancers etc...
If you have a question..simply ask....and welcome to the semi colon club.......buzz

taraHK
Posts: 1961
Joined: Aug 2003

Welcome -- and I am so sorry you have cause to be here.

There are many great books out there -- but I hope that you also find this board a good source of information and support -- I certainly have. I was diagnosed 8 years ago, at age 44.

I was originally diagnosed as Stage III (rectal). I have had some relapses and additional treatment -- but still alive and thriving.

Good luck with your upcoming scan -- I hope for the best possible news.

It is normal to feel fear -- but I hope that, with time, you also feel hope.

I embrace the "chronic disease" disease model -- there are plenty of folk on this board with Stage III and IV diagnoses who are 'living with cancer' - and living well. I'm having treatment now -- but still working, going to the gym, travelling when I can, etc etc.

Tara

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Glad to meet you....sorry it has to be here. I too am stage IV.... I think we all go thru that initial shock..fear of dying..OMG..I was a basket case..Could not quit crying and asking "why me"... This board literally gave me the strength and knowledge to become the survivor I am today... It's been almost 2 years since my DX. After chemo and Cyberknife I have knocked out 4 livers tumors and 15+ lung tumors..... I get a break once in a while and it goes away...but I know I will be fighting this fight for LIFE....Literally. Don't despair..... this board can help arm you with the fighting tools you will need to be a survivor..... welcome! Take care.

Jennie

AnneCan
Posts: 3692
Joined: Oct 2009

I am really sorry you need to be here, but this is a fantastic group - we will support you, provide useful information, laugh with you, etc. I find, along with my family + medical team, this is an excellent support. If you haven't read the Lance Armstrong Book, "It's not about the bike", I found that a very inspirational read. You will find, also on this board, there are long time survivors who are very inspirational. Some post frequently, others not so much. There is also a "long term survivors" board here at CSN; I like to visit there even though I am not a long term survivor (I was diagnosed ~ 2 years ago), because these people are very inspirational. Although I have not had liver surgery, there are many here who have had it successfully done. I want to wish you good results with your scan on Tuesday.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

It's certainly beatable. My best advice (being a 7 year living with cancer person) is to not read too many statistics about being stage IV. As far as they go, 99% of them are outdated (my statistic is spot on of course) and discouraging. I've had more than 60% of my liver removed and it's been fine for well over 5 years. There are many options available to you.

I think the absolute BEST thing you can do is get a very good oncologist and medical team. That makes all of the difference in the world. If you start out right you save yourself a lot of problems later on. Sometimes the wrong approach makes all the difference.
-phil

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

and phil you are right.it is best to start out on the right foot.i was dx stage4 in feb 2011 and i got a new team.best of luck to you....Godbless...johnnybegood

molly1029's picture
molly1029
Posts: 9
Joined: Mar 2011

Jim I am also a caregiver as my mother has stage 4 colon cancer with mets to the lung. Sending hugs your way.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I was diagnosed Stage IV last February. Mets to a few places. They've got them under control at the moment, no visible tumors. Feeling good, loving life, still on chemo and Avastin. It's a rough road to walk down, but, we're doing it. We're still here.
As others have said, ask any questions, we've probably got answers and will share our experiences with you.
Take care,
Winter Marie

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