Got bad news today.

AnneCan said:

pscott
I am really sorry you received this news. Getting a second opinion is a good idea, + also try to take things one day/one treatment at a time (often easier said than done, I know).

CherylHutch said:

Welcome to the Semi-Colon Club!
Hi PScott! First, I'd like to welcome you here... you will find out shortly that there is no more of an informative group than this one you have stumbled upon. Who knows better what it's like to go through cancer and all the complications, treatments, side affects and success stories than other folk who have, or are going through, the same things you are facing? Doctors are extremely intelligent, having spent their earlier years learning everything they could get their hands on about their chosen field... but many of them fall short on the bedside manner/talking to a patient as a human being where all of this is new to them. Not all doctors, but a big chunk of them have not spent as much time on their bedside manner as they have on their schooling and clinical practice. But that's ok... you WANT doctors whose priority is to take on the challenge and make you better. For bedside manner, support, hand holding and reassurance that it is possible to come out successful... you hang out here. There are some amazing success stories from every day folk who were told to put their affairs in order... and are still here years later defying all the odds and statistics that you will find out on the internet.

For starters, you will hear this over and over again... by the time information is proven, studied, signed off by all the committees and experts that have to sign it off and then make it to the internet on information sites, statistic sites, medical sites, into medical journals, etc... 5-8 years have passed. So when you are reading a new breakthrough finding... it's not really new at all... it's at least 5 years, if not more, older.... it's just new to the public, internet, etc. Also, there are still the snake oil salesman, quacks, "experts" with no expertise, etc. publishing stuff on the internet because the internet is not owned or controlled by anyone.... so any one of us could publish whatever we wanted to. I could do up a very official looking website, with lots of letters after my name and posting a new cure for colon cancer... 10 animal crackers a day, but not just any animal, 5 giraffes, 2 bears and 3 monkeys. There will be those of you who will see right through this and label me a big quack, out to make money on someone else's vulnerability. And there will be those who are leary about the animal cracker cure, but figure it can't hurt, so they will give it a try. And there will be those who fall for it hook, line and sinker, having all their friends collect all the giraffe, bear and monkey animal crackers... and if, along with their other treatments, they find their tumours have shrunk, they will swear it was the animal crackers that did the trick.

Soooo, internet reader beware! You really don't know what is legit out there on the internet and what is done by a very clever quack. You also don't know what is new information and what is 5 or more years old. A good example of this is just this past week we had a topic/discussion about the dangers of caramel colouring in dark sodas (coke, rootbeer, pepsi, etc). It has been on the mainstream News this week, as if this is something they have just found out... but in fact, they have been discussing the harm of caramel food colouring in foods for years. The first I heard/read about it was back in the late 90s... although it could have been known even earlier than that.

Ok... so, where does that leave you? Well, first you can acknowledge that the news you have recently heard is scary... on so many levels. Scary because it's you they are talking about, scary because the unknown is always scary, scary because you have young children that of course you want to be around until they are grown, self-supporting, possibly married and have children of their own. Wrap all of this up in one big basket and is it any wonder you are scared, terrified, numb, shaken up and just when you think you have it under control, you think "What if..." and the tears start flowing again. Well, I have news for you... what you are going through and feeling is TOTALLY NORMAL!! If you weren't scared or terrified or feeling the panic after being told what your oncologist told you, then your mind would only be putting it off and you would feel exactly as you are feeling now... but down the road. And it might have hit you when there was no reason for it, so you'd then think you were losing your mind. So acknowledge that you have had a huge scare and your reaction to it is TOTALLY NORMAL, nothing to be ashamed of and absolutely no reason for you to try to explain your reactions to anyone else.

But now is the time to say... ok, now what? What am I going to do that will be in my best interests? Because, my friend, right now it IS all about you and once you have a plan of action in place, then it will benefit you and your kids. I promise

For sure... get a second opinion. It's not that you are going to get two opposite opinions, but if anything... you need the assurance that Onc #1 and Onc #2 both have your best interests at work here. If both say the liver is inoperable... then so be it. Right now, at the end of Feb 2011, it's inoperable... which means you need a different treatment (other than surgery) to either get you to a place where they can operate, or maybe a chemo/drug treatment will shrink everything down so it is now manageable.

Quite often, once a cancer has spread (hence staging it as a Stage IV) the medical term for Stage IV is "incurable" and/or "advanced cancer". Scary words, right?? No one wants to be told they are incurable, or that they have advanced cancer... because the imagination goes crazy and you think of both as a "death sentence". But it's not... those are medical terms and how you treat advanced cancer or incurable cancer is different than if it was a Stage 1, isolated to one spot. It would be a HUGE mistake if, as a Stage IV, your onc treated you as a Stage I.

It sounds like your Onc is going to start you on a pretty standard treatment of chemo to try and shrink or get rid of the mets. A lesion or tumour are really one and the same things. Cancer cells that have gotten together to form a mass/tumour/nodule/spot that shows up on an image. You will be a pro with the terminology in a very short time... so don't worry. Anything that confuses you... just ask

Any words of hope? There's LOTS of hope! You have a long road ahead of you with a variety of different kinds of chemo that can be tried. Don't worry about the horror stories you hear or imagine about chemo. Sure, no one would PICK going on chemo for the fun of it... and yes, there are a heap of various side affects that each of the chemos can have. But everyone is individual and no two people seem to react the same way. So although you will be given a list of potential side affects, it does not mean you are guaranteed of getting them. And if you do get some, everyone gets them to different degrees. You will read lots of stories here where people continue working while on chemo. You will also read about how tired chemo can make you. So arm yourself with all the possibilities and have back up plans should you need help. Having the two young girls who are young and need their mom, but are also old enough to know Mom might not be feeling well some days, you will probably want a close girlfriend, relative or someone the girls are comfortable with to be around to help out on some days. This is not to say you are going to be on your sick bed... but hey, we all know when we aren't feeling well, or are just too tired to do anything... it sure would be nice to have the help around

Ok...enough babble! I am a babbler from way back. You just make yourself comfy here and know you have landed in the middle of a group of friends who you will get to know us all over time... and we are here to help you decipher any confusing words your doctors may tell you. And take a notebook with you to appts. so you can write down what is said... because I guarantee you will forget most of it by the time you get home

Cheryl

thxmiker said:

Get a second opinion
Get a second opinion! Sooner better then later.

We interviewed 6 Oncologists before we made a choice. Even the second time, We interviewed 3 additional Oncologists. Some were so old school and not into the current information that I would not be around had we chose one of them. One told us surgery and Chemo was not even necessary!

Find out the Exact Cancer that they have. Read what is the standard treatment. Anything before 2007, weigh in less. Things have changed that much!

Ask about the options, surgery, Chemo before and after surgery, Radiation, etc....

Our thoughts and prayers are with you!
Besy Always, mike

taraHK said:

10 and 12
My sons were 10 and 12 when I was diagnosed -- over 8 years ago. They are now 18 and 20 - yea!! Got to see them both graduate from high school, and so much more. I have had 4 recurrences since my original diagnosis/treatment. Three treated with surgery + chemo. Latest not operable (bone mets) and being treated by chemo alone. It's discouraging to have recurrences -- and I will almost certainly never be "cured". But it's VERY encouraging to still be alive! And, I've been very fortunate in my ability to tolerate chemo. I've been able to continue what I consider to be a good quality of life. (Planning a trip to Puerto Rico currently -- yes, while on chemo! -- got squeeze stuff in between treatment!). Will I have to cancel? Maybe -- but fun to plan!

You've received lots of great advice here already. Good luck to you as you make decisions and carry on the fight

love,
Tara

JoyceSteele said:

There is hope
Pam, Hi... so sorry to read about what has happened but as others have said do not give up hope, get a second or even third opinion and believe. My story.. was in exact same place as you in Nov. 2009. Short time to live, end stage IV colon w/mets to liver, my liver about 70% tumors, inoperable.

Colon - only 1 tumor, not large, had not spread any place else, even to lymph nodes or had not gone thru colon wall, no surgery, started Folfox with Avastin, early Dec. 2009.

Some side affects, neuropathy, fatigue was horrible towards the end, loss of appetite. Tolerable all of it.

Finished folfox May 2010.. went on Avastin only, once every 3 weeks.. tumors shrinking and disappearing. Talked with oncologist about going to see a surgeon, he felt best place for me was Mayo Clinic in J'Ville (I live in Orlando)... went a month ago, surgeon hopeful but would not commit to surgery until MRI, CAT scan, Pet Scan, etc.. saw him 2 wks ago, he is doing the surgery. WITH one exception. I have 1 tumor left in left lobe, that is the one he will resect first. In about 2 mos, if all goes well, he will resect the right lobe where there are 4 smaller tumors left. ALL the other tumors are gone/dead!!

I had a colonscopy Thurs. and GREAT news the tumor there is gone. I was at Mayo all day yesterday for pre-op and my surgery will be Mon. 3/7. AND the good news is it appears he will do it with cameras, not an open surgery.. I am still smiling.

When all is said and done, Mayo says emphatically I will be cured. However they remind me that in 50-60% of these, the cancer reoccurs. I hope it does not, but at least I hopefully have bought more time with my 4 kids, 5 grandchildren, that is what matters most to me, too. And by the time it does reoccur IF it does, I hope there will be even more treatments.

PLEASE PLEASE do not give up hope. And try to think that you are going to fight this, survive it and be here with your children. I know it's the hardest thing to think right now. You have come to the best and only place for the best experience, best support and "family" there is. I could not have done what I have if it weren't for the people here. I don't post a whole lot, but I read almost all the posts all the time and they are what have inspired me.

Please let me know if you ever want me to call you, I would be happy to. Except the week of March 7, lol. With hugs and love, Joyce

Erinb said:

See if you can find SCOUTY
See if you can find SCOUTY and read her personal story. It is very encouraging. My husband was able to have a resection but they weren't able to get it all. The good news-the pathology reports showed all of the small tumors that they could remove showed complete nuecrosis (dead cancer tissue). He is still in treatment, but doing well.

You may have an excellent response to chemo. Try to stay positive.
Erin