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Needing Hope

megs102
Posts: 4
Joined: Oct 2013

Hi,

I'm brand new to this as a discussion board member. For years I've been involved as a volunteer and I guess never thought I would be typing this. 10 days ago our lives were turned upside down. My Dad was having some stomach problems so decided to have a colonoscopy. They found a tumor and when they did the CT scan found tumors on his liver. He had surgery yesterday to remove the tumor from his colon and it was successful. They did confirm that there are rumors on his liver. They want to do chemo to try and shrink them before they approach surgery there. 

 

I wasn't there when the dr came out to talk to my Mom and sister. They tend to get emotionally worked up and I'm so conflicted now. They said the dr said after my Mom was pushing that he said 2 years max if he responds well to chemo and that surgery for the liver isn't an option. When the dr talked to my Dad today he  sounded so much more optimistic and said it was a long hard road but he can fight this and they will approach surgery for his liver after the chemo. My Dad is incredibly healthy otherwise. He's had asthma since he was a child. He's 63, travels all over the world for business, and is fit and active. 

I have to think there is hope and there are people out there who have survived this. My Dad, my family, and my fiancé are my everything. My baby sister is getting married in 9 months and I'm getting married in 14 months. All I want is for my Dad to be there. My sister asked if I am moving my wedding up but I have to think there is hope and we're not giving up living!! Please help me with this hope! Tell me your positive experiences. 

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

It seems odd that the onc told your dad what he did. Usually they give chemo to shrink the tumors and a lot of the timesurgery an do surgery. You may way want to talk to to the onc by yourself to confirm what he told your dad. Welcome to the board. Jeff

megs102
Posts: 4
Joined: Oct 2013

Maybe I worded it wrong. They said they would do chemo to shrink the rumors in his liver and then try and do surgery to remove the liver tumors. Is that possible? Sorry I'm emotionally exhausted and am probably not making much sense. Thanks for your response. 

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm sorry you have to be here,but I had colon cancer in 2008[stage 3],in 2012 it came back and spread to my liver[stage 4].I did chemo,and the tumor shrank from about 8 cm. to about .3 cm. and I was given a 70% chance for 5 years,after surgery.This year I had a tumor in my spine,but it was non cancerous.I get a ct scan every 3 months,and so far I am NED.Everyone is different.I have a neighbor who has brain cancer,and was given 3 to 6 months to live.That was 17 years ago,he is still alive and still doing chemo.The liver can be sectioned,and will grow back.Tell your dad to stay strong and fight like crazy.No one has an experation date,and I don't plan on going anytime soon.Good luck.

megs102
Posts: 4
Joined: Oct 2013

Wow you've been through a lot and must be an incredibly strong fighter. My Dad keeps saying from before we knew he's ready to fight hard and refuses to let cancer beat him. I'm hoping that attitude will take him far. I know he needs to recover But I just want this chemo started and to start attacking this cancer. I feel so helpless at the moment.

annalexandria's picture
annalexandria
Posts: 2270
Joined: Oct 2011

Please continue to have plenty of hope for your dad.  If he responds well to chemo, as many do, and becomes a candidate for surgery, he could definitely achieve remission, or even a cure.  Surgery in particular is the one sure way to cure in the world of cancer, and it sounds like your dad has a shot at that.

So breath deeply, and prepare yourself to go on this journey with your dad.  It won't be easy, but it can be done.  And if we can help in any way, we will certainly do so!  There is a lot of wisdom and experience here, and we'll share it with you.

Tell your dad we're rooting for him!

Ann Alexandria (aka AA)

SilentRenegade
Posts: 46
Joined: Sep 2013

Hi Megs,

A month ago I was given the same horrible news that my dad had colorectal cancer, stage IV with small mets to liver and lungs. He has recently started chemo and is doing great so far. I feel that once something is started - whatever treatment it may be - it seems to help with the emotional turmoil. Just keep hope and remember that it's not a death sentence anymore! Stay positive and know we're thinking of your dad as well! 

-Megan

thxmiker's picture
thxmiker
Posts: 1231
Joined: Oct 2010

Welcome to the forum!  We are sorry to hear your father's experience.  We are sending our thoughts and prayers for you to help him find a more positive Doctor!

 

I was told by one well known hospital last October, that I should get my affairs in line, and not to expect to be around a long time.  It was pretty shocking!   I went to a muuch more positive doctor at USC (HJ Lenz).  The first thing he told me was, "You are going to live a long long time.  Now, let's talk about your treatment."  It was a very positive way to talk about an ugly disease.  We keep traveling back to get his opinion.

 

Bottom Line, find a more positive set of Doctors.  I used HJ Lenz at USC, and A Lowey at UCSD.  We live 500 miles away from them, but, what is your father's health worth?  (They both will help you find financing and travel arrangements if one asks.)

 

Best Always,  mike

Sooker55
Posts: 15
Joined: Aug 2013

I completely agree with Mike. i am 700 miles away but my consultation with Lenz was worth it, and saved me from what would have been over treatment as recommended by oncologist at UCSF. Based on suspicious lymph nodes coupled with cancerous polyp, UCSF wanted to treat me as if I was stage III. Turns out I am stage Tis, Comfirmd by PET and re-excision surgery. i am now on frequent monitoring schedule, but following minor excision surgery, I am NED and on close monitoring. I am so grateful to Mike for sending me to Lenz.

Happyhar
Posts: 49
Joined: Apr 2010

There are so many on here who are full and running over with hope. Join in! It ain't fun and the reality is all don't make it. BUT---many, many do! there is a multitude of care, support, love and HOPE, right here. Best wishes and may God Bless you and yours.

UncleBuddy
Posts: 664
Joined: Aug 2013

Stay positive. When my brother was diagnosed with the original rectal cancer, he was stage 2a. He had surgery, radiation, chemo and was NED for a little while (< a year). Just recently he was diagnosed as Stage 4. It spread to his lungs and liver. I was so nervous when the doctor told me, I thought she said that it is rare for stage 2 to spread. My brother who is intellectually disable heard what she said and told me I got it all wrong. She said stage 2a can definitely spread. Once they open you up, it's always possible for it to happen. So maybe your family was so nervous and they heard it wrong. I have learned to bring a notebook and write my questions before I get there. If I were you, I would call and talk to the doctors myself. I had asked my brother's doctor, if he chose not to do chemo, how long did she think he had. She told me it depends, but without doing anything, he may have 18 months. If he had chemo, the survival rate for rectal cancer is low although it is getting longer, but she told me she has several patients well past the 5 year survial rate and they are NED. She told me it's hard to say, but take it one day at a time. Everyone is different. My brother refuses to eat healthy and exercise, but she told him that it does help. I was also todl that sugar is bad for cancer. If I'm not mistaken, it kind of feeds the cancer. There are many people on here dealing with this for a long time and have so much more knowledge than I do, so they can tell you more. I am a caregiver and it is very hard to stand on the sidelines and watch your loved one become sick. We feel helpless. I try to enjoy the time I have with my brother and I am there to ask questions, offer support, and help with all the health insurance stuff he is dealing with. I think if you spreak with the doctor yourself and get information first hand, you will feel better. Make sure you write down the questions you want to ask and keep a pen handy to write down the information. Good luck and God bless.

PS Take care of yourself. You r dad needs you to be healthy so that you can be there for him and your mom. :)

Trubrit's picture
Trubrit
Posts: 1519
Joined: Jan 2013

There are more than several stage 4 members here on this forum who have been living for many years.  Sure, the Doctor's can give your dad a ball park figure but there are so many variations. You said that your dad is fit and healthy, well there is one positive, as that can make a huge difference. You said that your dad is being positive, and that is another thing that can make a huge difference.

No getting past the fact that he has a bit of a journey ahead of him, but with a healthy outlook both physically and mentally, he will work his way through. 

My advice is to take it one step at a time. Don't think what 'might' happen somewhere down the road. When push comes to shove that 'might' could happen to any of us at any time. 

I hope your dad and the rest of the family are completely happy and confident in his Doctor's. If not, there are plenty out there. He needs one that will fight with him all the way and not just look at him as a passing patient who may or may not make it.  I was so very blessed. All of my Doctors, GP, GI, surgeon, Oncologist and Radiation Oncologist were and are always positive. Sure, we know the stats, but it doesn't mean you have to be one of them. 

You will find that as the days progress, and dad starts his treatments, your level of anxiety will lessen. When he starts treatment it means that he is doing something and you no longer feel helpless against this disease. 

This is a fantastic forum for information, love and support. I hope you continue posting here so that we can get onboard and do what we can to help him (and you) through this journey. 

megs102
Posts: 4
Joined: Oct 2013

Thank you so much to everybody who gave me feedback/support/suggestions, etc. I can tell you these boards will be a constant source of support for me and I'm grateful for every reply.

I will definitely talk to the dr. I want to meet his oncologist too but the surgeon said to wait until he's oit of the hospital to see him-why I don't know. My Dad really likes the surgeon and thinks he's very positive. 

I've said from the beginning I will enjoy every moment and my new mantra is a day at a time. I know what could happen but I refuse to live with the mindset that the worst will happen. People have made comments about being together for the holidays or moving up my wedding because it might be the "last one" or he might not be here. I refuse to live thinking that way. I want to be together bc were family. He hasn't even started chemo yet so we have no idea what he can and hopefully will beat. 

i think some people think that iis naive but I want to be the strongest most positive person I can be for my Dad so he can fight harder! I'm struggling with other people'a negative outlooks the most. As long as I have hope I know we can get through this. Thank you all for your posiitive comments and hope! I definitely will continue to post and come here for support.  so glad I found this board and you guys!

-Megan

lp1964's picture
lp1964
Posts: 862
Joined: Jun 2013

Some people say: don't maintain unrealistic hope. While you have to be prepared for the worst, because you may have to change plans or don't want to leave a mess behind. I'd rather live in false hope and die knowing that I did everything than giving in to negative, guilty, bitter feelings and waste even an hour on that. Sometimes in hard situation like this you may have to clean out your closet, because if you have stuff, relationships and people who don't fully support you, they gotta go. you can't keep those around while fighting this disease. 

Laz

fatbob2010's picture
fatbob2010
Posts: 397
Joined: May 2012

We have every opportunity to go into a gloomy place.  Neither you or your father should live this lable.  I would like to mimic what others have said and encourage you to stay positive.  Always trying to surround yourself with positive non-histrionic people.  

There are a number of Stage Four types who have been around for years and hope for years more.  This could well be your father's case as well.

In my case I did ask my daughter to move her wedding up by a year.  Since her original chosen date was pretty fair out.

Hope and caring streaming your way.

Art

P.S.  Even though this may be counter intuitive. However, you will gain great benefit if you take care of yourself first.

 

 

herdizziness's picture
herdizziness
Posts: 3440
Joined: Apr 2010

I was diagnosed many years ago, given 4 to 6 months with chemo, numerous tumors in numerous parts of my body, CEA count over 2000.  Told of course no surgery ever, got my liver, colon and ureter resection in December that year.  It isn't an easy road but certainly a livable road. I graduated from 2 year college during chemo and am in 4 year college now.  I had two more surgeries this year another liver resection and colon resection, but so it goes.  Still have tumors in my lungs (have had tumors since I was diagnosed, and more showed up in my liver last month, but keep getting along, one day at a time.  Still enjoying life immensely, my grandchildren, my children my animals.  Life is good.

And yes they like to wait until chemo shrinks it before surgery.

wishing your Dad the best 

Winter Marie

LindaK.
Posts: 323
Joined: Apr 2013

There is much hope for your father's treatment, you all MUST have that mindset.  Don't be gloom and doom, plan your lives as if he will be around for a long time.  It's a scary world, but manageable.  Some doctors say things without really thinking and maybe that's all your mother heard - the worst case scenario.  We had a bad experience in the ER when my husband first went to the hospital - after 11 hours of waiting and waiting, he came in and said "There's a mass, it's probably cancer, you can go home now and wait 4 days for a colonoscopy"  After we heard "cancer" we all shut down.  We reported that doctor to everyone from the hospital, the oncology center, etc.  We did see him the next night when I took him back because he had a complete obstruction by then.  Boy, was his attitude different, too bad we had to go through all we did those first few days.  Things did get brighter for us and they will for you too.  My husband is now past chemo and his first scans were clear.  We are making plans for the future and you should too.  Talk to the doctors yourself or with your mother and sister, you will have many questions and this is not new for them, they are there to answer your questions.  Good luck

Linda

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

They told me the same thing, that was almost 9 years ago:) 

janderson1964's picture
janderson1964
Posts: 1680
Joined: Oct 2011

I was diagnosed stage IV 8 years ago thi month and am still going strong.

mikew42
Posts: 113
Joined: Mar 2004

Hello,

I was diagnosed Stage 4 in February 2004 with 3 mets to the liver and told by the first oncologist that I had 1 1/2 to 2 years to live (I was 41 at the time). Went to a different onc who was more positive. Did chemo and RFA and there was no evidence of disease (NED) until December 2010 when they found a couple smaller tumors on the liver. Had liver surgery in January 2011 and once agian am NED for almost 2 years now. CEA last week was <0.5. I know I am a very lucky person to be here today, but it does happen. Take care. Mike

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