Help! Is there hope out there?

Buzzard said:

To be quite honest..........
The first thing I would do is to go back and plant a boot in the radiologists **** and then proceed to let his superior know how he operates. Then know that Yes people do get over this...and while I was letting them know what was told I would be getting out of there as fast as possible.....Now first of all breathe.......we have all been in somewhat your shoes and there are a ton of us still here answering questions and still alive way past our "due dates".....You should know that there is only one person that knows when we're outta here and it sure isn't that goofball radiologist.....and let him know that Buzzard said that....Now take it one step at a time and you will get there soon enough. Most of all be diligent, but patient...Its a long journey.........but its doable...and you will find a ton more people to be in here for you soon enough. These people in here are marvelous ........Buzzard

You tell them Buzzard!
Ditto

Sundanceh said:

Agreed
Hi Marianne

Buzzard said it good!

Many Stage IV's are still alive 5-11 years out of diagnosis and still going strong. It's unfortunate that the doctor had to say something like that - there are some real clods out there, and Buzzard was right, time to be finding a new doctor...

Radiation is the start and undoubtedly chemo and a surgery will follow - but for now, just gather information and ask questions on this board and we'll try and help answer those questions based on our own personal experiences.

I'm over 5+ years going after Cancer and still fighting strong (I'm 48) and know your husband will fight strong the same as me. He's a young man at 44 and has youth on his side, which will be a plus in his journey. The hardest part is the mental part.

Remember this saying: "The Mind Has to Be RIGHT - TO FIGHT!

That's one of my mottos and the battle begins in the mind and is won or lost there. Both of you stay strong for each other - it's not an easy or quick road to take - you have to be prepared for the ups and downs, but many of us have done the things you are doing and you can too.

Take care
-Craig

How much time?
The amount of time he has left is as much up to you and he as it is to the doctors. I'm well into my 2nd year battling extremely advanced stage 4 with mets to liver and lungs. Your radiologist is right! If you go with the flow and let the doctors make all your decisions for you, they will keep you alive on average .5 - 2 years. You and he need to learn as much about his specific disease as possible as early as possible. Get multiple opinions. Make sure the 2nd and 3rd opinions are from doctors better than the one that gave the first opinion. There is a standard procedure most Drs follow. It's like a road map, if they follow those procedures they can't get themselves into any trouble and in turn can predict your outcome. You should develop a strategy based on standard procedure and new technology. In the past 2 years I have had multiple effective procedures that I introduced to my doctors. My original prognosis was 2-3 months with all my doctors telling me to settle my affairs, find a beach, and enjoy the drugs they were going to give me for as long as I could.
Had I followed conventional treatment I would have been dead 18 months ago. Instead, I decided to do some research and maybe help myself out.
1st thing is to know your disease. Exactly where and how many mets does he have. Currently 90% of colon cancer patients die from liver failure. Getting and keeping the liver cancer free should be your strategy. But I know bone mets are extremely painful, so those should be addressed quickly. You mentioned radiation. Here is where you need to make your first move. There are at least three or four treatments I would try if they are available to you. RFA, cyberknife, and embolization may be more effective than the conventional course of radiation and have significantly less impact on the body. It's possible any of these three could be used in conjunction with conventional radiation to minimize the effects of radiation. ****Remember this! Getting and keeping the body healthy after a procedure is going to be key to overall survival and well being. The first step in doing this is minimizing the magnitude of the procedure they are doing to you.****
Keep in mind, your husband has had cancer for a few years now and was living quite well. He can live many more years quite well with cancer. All you really have to do is keep the cancer from the places that are going to kill him or cause him tremendous pain. Once the leg issue is resolved then settle on a long term strategy. If his liver is clean, you should be in for semi smooth sailing. Maybe 6-9 months of chemo, then perhaps some RFA or surgery on any remaining mets, the 6 more months of chemo. Then all should be well.

Muzzy said:

still here
First i would like to welcome you to your new family, Buzzard is the strait shooting uncle, sundance very smart brother and you will get to know the others.
I was told last year, by a not well informed nurse that it did not look very good for me. In hidesight i should have buzzard put a butt up her !/!. I'm still here and was told on Wednesday that i have no sign of cancer, There is hope and you got to beleive there is. The people on this site have help me so much more then they know. Please ask us questions post your concerns. we are all here to help each other out. i leave you with the warmist of hugs.

jeff
just happy to be here!!

hope
There is always hope. Don't ever give up hope. find a dr who will talk to you give, you all the options ,inform yourself about the disease and then fight. I too have stageIV colon cancer with mets to my liver. Some days are good some days not so good. But I try to stay positive and coming here to talk to these people helps.I'm adding your husband to my prayers.

Deb

dianetavegia said:

Marianne
I'm so sorry to hear about your husband. May I pray for him, you and he kids?

You've gotten some wonderful advice already from people who know a lot more than I do. )

I assume the bone tumor was colon cancer that had spread?

Wishing him many, many more years with you and your family.

God Bless,
Diane

Sloan
Hi there,
I also got a second opinion from Sloan Kittering...I saw Dr.Neil Segal...They were so nice and organized there it was wonderful to see a place function to percision...The doctor was great..He went over all the info I brang from my oncologist here and asked me a ton of questions...He came to the same diagnoses asmy doc did here..So I was very pleased because he said I might as well do it here rather than travel back and fourth which is 90 mins. one way....I think you will ike Sloan...Take a notebook with you and write down EVERYTHING because I know you both feel like your a deer caught in headlights right now..Arm yourself with info like I tell everyone knowledge is power....Good luck and keep coming here for info...We are all living proof remember that.......JULIE

Listen to these folks
Marianne,
In comparison to others here I am a newbie, and I would tell you to listen to these seasoned vets. They know way more than the radioloist about living and beating this thing.

One thing you should know, you are the caregiver for your husband and everyone here has great admiration for our caregivers. We are all very proud of you for not listening to the Radiologist!

Many of the people who post here are participating in ground breaking procedures and tests, they are very proactive in their own care, this is where you need to be to also, but it is a proscess to get from the beginning to where you can be very proactive. You first have to get over the shock and overwhelming feelings after being told you and your family must deal with cancer. Please don't take too long here 'cause there is big work to do. Next, when the overwhelming feelings, fears, anxiety etc set in come back here and post these issues, we have all had them, there are caring people with open hearts here. You have done the right thing by getting an appointment with Slone-Kettering. Even when things seem slow, remember that you and your husband are in charge and you can keep moving forward.

Best wishes,
Jan

KATE58 said:

GO BACK AND KICK THAT
GO BACK AND KICK THAT RADIOLOGIST IN THE BUTT:1ST,HE'S A RADIOLOGIST NOT ON ONCOLOGIST OR AN INTERNIST,:2ND I AM IV STAGE METASTATIC AND I WAS GIVEN ONLY 3 MONTHS TO LIVE,AND THAT WAS 4 1/2 YEARS AGO AND MY ONCOLOGIST DID NOT EVEN TELL ME THAT UNTIL LAST YEAR! :3RD SOME DOCTORS ARE A...HOLES!!!!! NO ONE BUT GOD KNOWS HOW LONG SOMEONE WILL LIVE,A DOCTOR CAN ONLY TAKE A GUESS.I HOPE YOU TOLD YOUR ONCOLOGIST WHAT THAT GUY SAID TO YOU.A GI DOC SAID SOMETHINGS TO ME AFTER MY COLONOSCOPY AND WHEN I TOLD MY SURGEON,HE WAS LIVID! I'M SURE THAT GI DOC HEARD FROM HIM.
GOOD LUCK TO YOUR HUSBAND, THERE IS ALWAYS HOPE!
GOD BLESS
KATE
HOPE SHOULD BE THE LAST THING STANDING.

You should forget what that
You should forget what that radiologist said. He is a uninformed jerk. I sooooo agree with what Kate and the others said.
There is ALWAYS HOPE. We just have to keep up the good fight.
GOD BLESS your family,
Cyndi

Yes, there is hope!
Marianne,

I'm sure this is quite a shocking and sudden turn of events for you and your family. So it is very natural to be scared and worried and to wonder if there is any hope. However, as so many of the dear people here have already stated, there IS hope. Keep searching, keep getting opinions, and NEVER give up.

I'll be praying for you and your husband.

*hugs*
Gail

HOPE
I often wonder why these "medical" personnel give statistics. One cc survivor that I will never forget, had a doctor say, noone can give a timeline, everyone responds differently. There are many many stage IV survivors out there that have beaten the "odds". The statistics are old, don't pay attention to them. There are so many advances and yes, you must be your own advocate. Keep fighting and don't stop looking for answers. Sounds like you are going to a top notch institution. I hear Dr. Lebow there is the one to see for mets to the liver and peritoneum. All of my prayers to you and your family.

ALWAYS HOPE!
Yes, there is always hope and rotten doctors insensitive doctors. Don't listen to them. Get as many opinions until you find one that is on your team and wants to fight too!!! It's a tough battle but can be won. God bless you on your new journey.
Jill