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Terminal

carol campbell
Posts: 1
Joined: Aug 2011

Have any of you been told by your Dr. that you are terminal and only have X amount of time left? I have and it is very hard to cope with.........tell me how you are dealing with your own situation please.

camul's picture
camul
Posts: 2067
Joined: Dec 2010

Being stage iv, grade 3. I pushed and was told Sept. 2010, that they were hoping for Christmas because of the aggressiveness of the cancer. It is throughout my bones, skin, I have a nodule on my lung, and now something with my liver (may or may not be cancer yet). It is now almost 9 months later and I am still here, walking, driving, and enjoying my good days! Not pain free, but none the less still living as well as I can.

Now he is shooting for Christmas 2011, I laughed and said I am shooting for at least July 2012, as I have a big wedding that I would like to attend in June in San Diego! He laughed and said then we do it your way!

Honestly, I keep making plans and setting goals. I am also not ready to leave my family. They are what is keeping me here, but I do hope and pray that I will be around long enough to turn this 'terminal illness' into a chronic one. If they can do it with aids they can do it with breast cancer.

Always remember that when they are looking at this, they are basing the outcome on statistics, and statistics don't show other underlying health issues that contribute to the outcome of the treatments. Can't say that this is not hard on my family and myself, but I have no plans to keep on thier timeline, too much to do!

Take care, and glad you found this board.

~Carol

SIROD's picture
SIROD
Posts: 2163
Joined: Jun 2010

Hi Carol,

I would shoot for July 2022 and then negotiate the date again.

Best to you Carol on this journey,

Doris

survivorbc09
Posts: 4378
Joined: Jun 2009

I have a girlfriend that is Stage IV with bone and liver mets after fighting bc. She is alive and doing great today, 15 years later! Her oncologist years ago told her she was terminal and to get her affairs in order. He was wrong! And, I know of many more that also are still enjoying their life after having that word thrown at them.

I am in no way lessening your condition, or, your doctors, or, what you were told. What I am truly trying to say is to not let that word overtake you. Keep fighting, keep praying, keep your spirit up. Surround yourself with positive good people. Enjoy your life every day, every moment of it. I know it is easy for me to say, but, I fear that you might go into a depression after being told this awful news. And, I am trying to let you know that there is always HOPE, or, I believe in that anyway.

There are several pink sisters on here that have fought the beast over and over, RE, Carkris, Marsha, Kari, Laurissa, Jeanne D, Debbie, Nancy, Camul and Kathi M. I always remember Kathi M as she was told she only had 6 months to live and many, many years later, she is traveling all over the world taking in life to the utmost and doing great!

I hope that in some way what I wrote will help you. I wish I knew how to actually deal with what you were told. All I know is that you should never give up! And, to let you know that I will be praying for you and here for you if you ever need me. This is a great support group of pink sisters that will surround you with love, hope, support, prayers and encouragement. Use us if you need to!

Praying for you Carol,

Jan

SIROD's picture
SIROD
Posts: 2163
Joined: Jun 2010

Dear Jan,

Every woman diagnose with Stage IV often knows when to end treatment. It isn't any good to go on fighting when the treatments work less and less. I am not saying one should give up after a few different treatments, I am saying that one should have a few months of quality time before the end.

I think it is hard for anyone who isn't stage IV to understand that it isn't the same when one is doing adjuvant treatment or treating a regional recurrences. When your first diagnose with stages ), 1, 2, 3 the aim is to hope for a cure. At this time there is no cure for stage IV, there is only treatment to buy more time. One can go on for years as I have, but I know that one day, I will hold my hand up and say enough. Many women who are stave IV can go live 30 or more years with this condition. It does depend on what kind and how fast your cancer is growing and what it responds too.

The truth is we are all terminal, we hope for the best, prepare for the worst and live each day to the hilt.
However fighting to the bitter end seems cruel to me. One should be able to enjoy life again via Hospice for many months instead of dragging themselves off for more drugs that will only a best buy them a few short and miserable months.

One has to know when to draw the line, enough is enough.

Best,

Doris

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

There seens to be a great deal of "shoulds" here. In the real world there are no "shoulds". We all do what we need to based on personal decisions,choices and situations in life. Support for each person's decision whether or not it is what we would decide for ourselves is very important for everyone on this journery or just in life in general. What is enough for one person may not be enough for another .

Carol, my heart goes out to you. I am not terminal, I am not in your situation and can only imagine what you might be going through based on a stage 3 cancer diagnosis. All I can suggest, is be present to what you are feeling, shock, sadness, despair and let it move through you so you can find the strength to live out your life in the way that is best for you.

much love to you.

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Hi Carol,

I was not given a time frame I was simply told that I was a stage 4 with less than 30 % chance of surviving. I had just finished battling stage 2 cancer and was only 6 months out of treatment. I decided I was not going out without a fight and told my doctor that. He said okay then lets get started. I had 18 more chemo sessions and 10 more weeks of rads. Took me to the point of exhaustion and despair at times but I kept going, that was 13 years ago and I am still here and do have quality of life! It did come back a third time in 07, surgery and more chemo took care of it...so far so good! I wish you all the best!!!

Hugs,

RE

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Carol,
When I was in high school I had a friend that had a degenerative muscle disease. Her parents were told she would likely die around 5 or 6, that doctor died a short time later. Her next doctor told her just after puberty, he also died. The third doctor didn't give a prediction. She lived to be 32 years old. About 10 years longer than most people with her disease.

Doctors can only go with what they are familiar with. Like everyone else has said, they are dealing with numbers. You could easily be the exception!

Cindy

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

I didn't want to ask the question but really wanted to hear the answer, so I asked for my prognosis. I was told 2-3 years with chemo. Again, that was the statistic. I am not a statistic nor do I have an expiration date. I am like Carol and plan to live everyday the best I can. And, right now that's very good. So, don't listen to stats and listen instead to your heart. Enjoy everyday and let's break all these statistics together!! Welcome, too, to a great group of very caring pink sisters!!

epark's picture
epark
Posts: 338
Joined: Aug 2011

you can overcome anything...when I found out i had BC I was devasted until a co worker took me outside and told me about her mother who was diagnosed with stage 4..she treated and went into remission and a couple years later it came back to her bones...this was almost 30 yrs ago...i spoke with her mom just last weekend when i was having a "bad chemo day" she told me to fight like you never fought, stay postive and believe in the power of prayers and God...she did and now she will be celebrating her 78 birthday...she is the reason I know I will win this fight.....

praying and sending you postive vibes
Eva

SIROD's picture
SIROD
Posts: 2163
Joined: Jun 2010

Dear Eva,

Thirty years ago, I doubt they were doing bone biopsies for bone metastasis. I had a cousin who died of breast cancer that spread to her bones, then liver who died of the disease back in 1981. She did not have a biopsy proven diagnose. Your friend's mom might have looked like it was in her bones but it probably wasn't.

Nevertheless, there have been a few women 1% who do live on and there is no explanation why they live. Even Rita Arditti who lived 30 years with her metastasis did eventually succumb to stage IV breast cancer.

Positive attitudes does help, they make you feel better and they help all those around you. However, malignant cells don't care if your happy, sad, mad, or jumping for joy, they go on to do their own fatal thing. I do believe it can help in giving a person the will to keep on and etc. I say this, because I've known many stage IV women who were very, very positive, almost a Pollyanna and died. Did they die because they suddenly were not positive enough or did they die because the disease overwhelmed their system. I believe it was the latter.

I'm an atheist so I won't get into the power of prayer and etc. Again, the disease once it progress to a certain point, overwhelms major organs, the power of prayers, believing or not believing, the cancer goes on and does it thing. I do have a problem with those who died, there prayers weren't good or strong enough or is it just plain physiology. Again, I believe it was the latter.

Just another viewpoint.

Best,

Doris

roseann4
Posts: 994
Joined: Sep 2009

If not, he has no knowledge of how long you or he/she will be alive. I suggest you get a different doctor. Good doctors know that anything is possible. Do not believe him/her! Our immune systems can be affected by negative input by someone in authority. Live each day to the fullest and pray for healing. New treatment are being developed all the time. Hugs and hope can do wonders for our healing. Find a doctor who has a more hopeful attitude. There is no such thing as false hope. Blessing to you.

Roseann

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

Well, I lost my brother and dad to cancer and each doctor was so different. I still remember the impact on them both. My brother had pancreatic cancer and his doctor gave him 6 months. He actually passed EXACTLY 6 months to the very day.

My dad's doctor would not give any time frame ( I asked because I was his caregiver ) and his response was profound. He said, "I am not God and could never tell you that." I thought that was a wonderful thing to say and I had no experience with this subject before my brother , who went first.

My dad lasted much longer, taking into consideration, of course, they had different cancers. My dad was lung. I believe it helped him not to know. How can you fight hard when in your mind, you have a deadline?

God bless you and fight hard because no doctor is God, right?

HUGS & LOVE,
Wanda

SIROD's picture
SIROD
Posts: 2163
Joined: Jun 2010

Hi Wanda,

Pancreatic cancer once it metastasize, does often have a short time frame. However, if you read Randy Pausch "The last lecture" you will see that sometimes the will to live does have some play in it. However, there isn't a lot of options with that cance. I still don't believe that an oncologist can predict how many months if the person is still in treatment, we are all so chemically different and our response is as varied also.

A lot of time with Hospice they will say 2 to 4 months. Often a person has a few extra months because the body recovers from the toxic treatments it has been infused with and somehow squeezes in some extra time.

I have often thought that if a person did not have a time frame, they might live longer because they didn't know they were suppose to die.

Best to you,

Doris

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

predictions are just predictions, you dont have an expiration date stamped on you. I am not stage 4 and I do things to prepare everyday. Just had a family picture done for example. Having cancer makes you aware of the reality. keep fighting. Hugs we are here for you.

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

There is a commercial on tv where the doctor tells the pink sister that she doesn't have an expiration tag on her, and, that is so true. I choose to not go along too much with stats, as, they are just that.

Lots of hugs for you,

Lex

SIROD's picture
SIROD
Posts: 2163
Joined: Jun 2010

Hi Carol,

There are different ways to tell a patient they have a terminal disease. It needs to be said in order that the person knows what he/she are deal with as for hopes and expectations. I am stage IV, I know there is no cure and that the disease is likely to be terminal. My oncologist touched upon it after my lung biopsy.

No doctor, oncologist, radiologist or whoever should be able to give a time slot for your demise. One exception, when they say "I can offer you no more treatments, all have failed, the trials didn't work and etc.". Usually the person chooses Hospice and they can more or less predict the amount of time a person has left. They might say, if ask "perhaps, 2, 4 or 6 months". It's only a guess given their experience on others in the same situation.

However, when you are in treatment, no one can predict what will work for you. All our chemistries are different, what doesn't work for one person might work for you.

I hope this helps. We are all terminal, life ends with death and the date is not one anyone can predict.

Best to you in this journey,

Doris

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

No human can tell you how much time you have left on this planet. I'm so sorry that this was told to you, but so many gals here keep fighting on and have lived wonderful lives way past what was thought possible.

I hope that you are able to process this and determine that no one can predict what will happen to you.

Please keep checking in with us--we will always be here to listen.

Hugs, Renee

gami43
Posts: 281
Joined: Jul 2011

Carol - I am not stage IV; but since my dx I'ved
lived a different life; I discover new joys in
living that had gone unnoticed before; one day at
a time. My tumor was an aggressive, grade 3. I know
it can recur; but as my onc said at the end of my
chemo, when I asked for a prognosis "it's in the
Lords hands now". Wow, I realized the truth of my
journey was my belief that indeed God is in control
and only He knows what my future will be.
I am praying for you and sending you strength,love
and a big hug. The Kindred sisters on this board
are knowledgable, warm, caring strong fighters and
this board is open 24/7 for all of us. God bless
you.

Teresa

VickiSam's picture
VickiSam
Posts: 8271
Joined: Aug 2009

consider getting a 2nd, 3rd opinion. We are "WARRIORS", and do not have expiration dates, and are not stats.

I am not in your position, so I can only offer you my hope, friendship and prayers -- My heart goes out to you and your family.

Never give in, or Never give up! Fight like a girl, put those heels on -- and kick some asssss.

Gentle hugs ..

Strength, Courage and Hope.

Vicki Sam

CAchick's picture
CAchick
Posts: 277
Joined: May 2011

Hi Carol,
Physicians are only making educated guesses about these time frames. There are so many other factors...age, condition before diagnosis, physiology of the body...those are just a few. I can understand your wanting to know the probable prognosis, but none of those predictions are certain. Please try to focus on taking the best care of yourself that you can---you are worth it!
Prayers and hugs,
Sybil

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1654
Joined: Jan 2011

Hi - A lot of good words have been said already.

I never liked the idea of anyone telling someone how long they have to live. It's just not right. (My #1 thing is to be at peace with myself and to learn to forgive others.) Once dx it adds a sense of insecurity and fear, no matter what stage. But like most people said, we are all terminal. It's just sweeter not knowing you have an illness, therefore not really thinking about death. But the fact is, we are all mortal. However, we can choose to try and be grateful for the life we were given (when I think of my situation, I also think of children dying from cancer). Although I am 33, I feel lucky.

Remember no one really knows when or how. Yes, how...it can be something else and not necessarily cancer.

It is difficult and very challenging to cope with this. But let's bamper ourselves for once, love ourselves and try to be happy.

My prayers are with you. And hoping you are mentally OK.

laurissa's picture
laurissa
Posts: 773
Joined: Sep 2009

3 years. Who's he to say that? I don't take it seriously, it's in Gods hands. I could die from something else. Heart attack, etc. I do worry about leaving my girls way too soon. I do think I need to be back on antidepressants, I quit a couple months ago. Xanax helps which I still take. Alot has gone on the past month. Too much to deal with. Trying to get disability, help with bills, etc.

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

I just wanted to add that you all are so strong and such personal inspirations to me. I use the "ostrich method"-burying my head in the sand-sometimes when i get to thinking and worrying too much. All of you sharing your experiences and viewpoints with such grace and optimism and hope. You are all heroes and i SO love you all.
*xoxo*
Heather

debi.18's picture
debi.18
Posts: 849
Joined: Jun 2011

My sister in law was diagnosed over 5 year with stage 4 breast cancer and was given 6 months...fast forward to today, she is happy,healthy and still dancing with NED.

I know doctor's are doing what they believe is best when they tell someone how much time they left, but as said many times before, it's in God's hands.

Hugs, Prayers and positive thoughts,
Debi

disneyfan2008
Posts: 5382
Joined: Oct 2010

so so sorry to hear you are going through this! I have not dealt with this but from reading posts NO ONE KNOWS for sure...

I WISH YOU the best and my only advice for anything which truely helped me is using journal!

Denise

natly15's picture
natly15
Posts: 1934
Joined: Sep 2009

Such wonderful input by so many pink sisters. No one but God knows for sure. All we ever have is right now, so I try to live and enjoy every moment one day at a time. I could get hit by a baseball at a game and that could be the last game I ever see. My mom always said "When it's your time,It's your time" and no doctor, friend, nurse, or cancer expert has the ability to tell anyone when their time is up. Live on and enjoy each daY with hope and faith and no matter how you feel try to find humor in life and laugh at least once every day. Hugs to you dear Warrior.

pinkflutterby's picture
pinkflutterby
Posts: 615
Joined: Jun 2009

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