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Is it worthwhile?

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

This is a question I really really need to ask. I've been very lucky, I've been NED for 6 years and now for the first time there seems to be something amiss. There are spots on my pancreas. If I didn't have a history of cancer someone woild have said "spot schmots, just forget about them. But post RCC there is a nervous hush and i feel as if I'm in the quiet centre of a hurricane.

My question is quite simply, if it is cancer, is it worth the pain and discomfort of the constant quest to catch the cancer where it pops up and then to die?

 

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

Catching the mets early mean there are treatment options to halt the growth before there are real problems.  There may be surgey options too.   A met caught early can be managed like a chronic disease.  Yes, you will die eventially, but the treatments can delay the progression of the disease so that you die of something else first. 

 

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi dhs1963

At present I think i have to adjust to a "New Normal". I just don't really feel courageous or optimistic. No doubt I will do what needs to be done. The delay of the progression, for now, seems such a hopeless quest.

Thank you for your response and I know in my head that you are right. For now my heart has a little catching up to do.

Jojo61's picture
Jojo61
Posts: 349
Joined: Oct 2013

Hi Minnie,

You seem to be really discouraged at the moment. Please don't give in to this. I have already learned to look at RCC as a chronic disease (as DH has mentioned). I am hoping of course that there are no mets, but if something pops up, I know that it can just be treated or removed, and then can continue on with my life. It isn't an automatic death sentence.....if you had diabetes, would you refrain from taking insulin?

If anything, it can give you a new view at looking at things...appreciate the sunny days more, savour the fun times, do a random act of kindness....that always warms the heart. Also....pamper yourself right now. Do something really decadent for yourself. You deserve it!

Take care and don't be afraid to reach out to this forum - there is a wonderful bunch of people here!

Jojo

 

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi Jojo61

I am rather discouraged at the moment and I was actually just looking for a soft place to fall, some cheering words, some encouragement. Thank you for giving me kind words and hope

Jan4you's picture
Jan4you
Posts: 177
Joined: Oct 2013

Sorry for all you are going through at this time. Seems to me to be an honest question. This is a process and for some of you who have answered her, you have either never needed to deal with this question because it just was never a consideration...OR.. if you have, you have processed it to the point you are survivors-mode, continuing the fight.

So for what it is worth, I honor where you are at, your honesty and fears. Sort out all these responses and decide for yourself what your next step needs to be.

However, I wonder if you have family/friends who support you? Do you have others in your life to process this with? Do you have a belief system to turn to?

I just got diagnosed, waiting surgery. But I have several chronic conditions that I battle every day eventually costing me my career. Now I consider "my job" to learn how to live WITH these conditions rather than without.

But... if I were facing continuing cancer and all its "surprises" more treatments etc. I too would ask the same question from time to time.. Can't the question be part of the process?

 

Warmly, Jan

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Dear Jan4you

Thank you so very much for your insightful response. I am I suppose at a sort of cross road. I've been so lucky so far and suddenly my luck has altered a little and I'm down.

OK that might make me a miserable failure and not the gung ho "Let's-conquer-Cancer-today" type but it was an honest expression of a profoundly felt emotion.

Today I'm a little better and there is more than enough love, care and faith around and within me to sustain me, but sometimes a little falter seems part of the process.

Thank you so very much for recognising that

With appreciation

MinnieK

I am alive
Posts: 211
Joined: Jul 2012

Minnie, you ask if treatment is worth the pain and discomfort. I have found both to be minimal - with the exception of a fractured L1 vertebrae which the docs took care of with a kyphoplasty. I am now, once again, pain free. Amazing. Drug side effects have been minimal. Life goes on much the same as it did before RCC treatment. True, now I have leg lymphedema to deal with, which the doc thinks might be due to a drug I'm on, or to radiation I've had, but I'm still motoring around.I do everything I want to do.  Recently returned from a trip to France where I walked around 16 hours a day! Some of these side effects are inconvenient, but that's life. I look around me andrealize that things could be worse - things that have absolutely nothing to do with RCC. We play the cards we're dealt. Thats the Life Force within all of us. I think you are in that first wave of shock when confronted with possible metastases. You immediately go to the darkest corner. But that will pass. Clouds will scatter. You'll feel the sunlight again. Hang in there. 

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Maybe not to you. Are you just a wuss or is there nothing to live for? This is the Kidney Cancer Survivors Network. All of us here will scratch, claw, bite and fight with all our ability to live. Us and are loved ones are too valuable to concede defeat. It may be time to speak to a pscyhologist or pscychiatrist. What is really bugging you? You are a grown woman. Life is not perfect or flawless. Would you really rather be dead than to be put on some medicine or spend a few weeks recovering from surgery? I hope you reconsider which side of the fence to be on. What is the big deal? Sorry for the kick in the a$$. You will notice that you asked a defeatist question to the wrong people.

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi I am Alive

Yes this is the answer I also needed. I have always found that people who have gone through something speak about it with an honesty that offers so much comfort.

I know I will be fine, whatever "Fine" may be. Thank you for responding to my question, it does put things into perspective

MinnieK

angec's picture
angec
Posts: 614
Joined: Mar 2012

Minnie, I have to snicker at the straight forward answers to your question. You see, we are here to listen to you, let you vent, send virtual hugs and then we hit the ground running!  Cancer can now be treated as a chronic disease.  It is  not an immediate death sentence as you see. You have been very fortunate to have done well for 8 years without meds (i presume).  You will also get through this new find.  Your cancer is very slow growing, that is good! What exactly did the report say as there can be things on the pancrease that are not necessarily mets.  But either way, there are so many new drugs in the works right now that can halt and at times cure this RCC.  There are some new findings using the immune system where they can completely destroy the cancer. I am very optimistic that the cure will come, very soon!  So, you ask if it is worth it for you to take meds or continue treating this rather than die? Ofcourse. Like others have said, if you have diabetes, or heart trouble or pain, you take something to control it, why would this be any different? The truth is, we don't know when we will die, anything can happen at any time. I have learned to take one day at a time and live it to the fullest. Enjoy life, look at the simple things, think positive.

I also think you are very down right now, who knows what you are dealing with beside possible new mets.  Life is tough and not fair, but worth every possible thing we can do to get the most out of it!  Be strong, find the good things in your life and count your blessings.  Read a good book, watch a comedy, take walks, exercise.  I promise you, things will get better.  So, yes, it is worth any pain or discomfort to catch the cancer if and when it pops up then to die.  :) Sending hugs and praying for you!  Take good care of yourself Minnie, you deserve it!  XXOO

 

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi Angec

The wonderful thing about all the responses is that no-one said, "Don't talk like that! " The advice and responses differed but at least people listened. I find in my family that being sad is not part of the cancer protocol.

I will deal with whatever comes my way to the best of my ability but sometimes my knees will weaken and then it is good to have somewhere to go to vent, blame or just be sad.

With gratitude

Minnie

angec's picture
angec
Posts: 614
Joined: Mar 2012

Minnie, I do understand fully!  You can vent all you want!  Cancer is no joke, and we cannot pretend it isn't sad or doesn't get us worried, depressed or feeling down at times. My mom has cancer and believe me, the whole family is very scared and down at times.  But we will not show that to mom, for the obvious reasons. We let her be sad for a short time, but after that, we do all we can to keep her busy, positive and try to make her laugh. Maybe your family is doing the same thing.  Mom  is doing fine right now.  The one met she has left is stable.  Worry never really leaves us, but we learn to live with it and don't let it consume us, it is not good for the immune system.   When your knees weaken and you feel all alone, come here and we will be right there laughing when you laugh and crying when you cry!  But we will always pick you up and get you on your way!  We are here for you, anytime! I am sending you a virtual hug!   It will be ok, Minnie! ;)

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Hey Minnek we call this place Cancer Survivors Network not Cancer Surrenders Network but hey cancer has a way of bringing us down at times so my advice would be for you is to get back on your feet brush of the dust and get back into the fight for your life

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

HiLimelife50

And that's what I'll do.

Thanks for listening

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

I have felt like you do .... I have asked myself the same question should my cancer come back. I dont like this 'new normal' I have bad days when I can see no way forward but worry and pain. But, in my heart I know it is worth it ... I hope you feel better soon. You have my very best wishes.

Gentle hugs to you. Michelle x

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi Miashelle1

At least I'm not alone!

Looking at your beautiful photo I find it almost unbelievable that you are not always strong and prepared!

Thank you for your gentle and caring response. Sometimes soft words can heal pain better than pills.

In gratitude

Minnie

srbelle1
Posts: 123
Joined: Jul 2013

excuse my bluntness but is it worthwhile???? 6 years without disease and now some spots is NOT death sentence from the research I have done and that is limited. I do not have kidney cancer; my husband does and yes, for him, it is worthwhile. 

For his wife, sons and granddaughter, it is worthwhile. For his sisters, brother, nephews, nieces and his friends, yes, it is worthwhile!

i will get off my soapbox now but your question really took me off guard this morning.

hoping you were only in shock, Sarah

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I've got you beat by a year.  I'm at 7 years 6 months since DX, but who's counting.  Since mine had already invaded the liver, my regular tests have always been of chest, abdomen, and pelvis.  I have an assortment of cysts in both the pancreas and what remains of my liver.  They are stable.  I have an hemangioma in the liver that was confirmed upon a subsequent US.

Have you had regular CT's for comparison?  Have you had the lab tests to show blood chemicals that would indicate cancer? Have you had a PET to confirm cancer?

I'll give you an example of someone who had a right to opt for medically assissted suicide (legal in Oregon) this past week.  My bro-in-law. He was dx'd the first week October with Anaplastic Thyroid Cancer. Survival rate -0-, anticipated death within 3-5 months.  He had to be intubated, a breathing stoma installed, lost the ability to speak, eat-drink-swallow, and the tumor doubled in size within 5 1/2 weeks.  When Dx'd, he signed a POLST, elected to not have any life sustaining treatments in the event of a heart attack or stroke, made his choices with his wife, had hospice care until there was nothing more that could be done, and came home to die.

What I'm saying, is don't emotionally or physically give up at this point in your life.

Donna

srbelle1
Posts: 123
Joined: Jul 2013

Oh. Wow, Donna! what an awful cancer for your brother-in-law and surgiving at 0....my sympathies to your family. Sarah

angec's picture
angec
Posts: 614
Joined: Mar 2012

Donna, sorry to hear about your BIL. That is awful! Too many people have cancer!  I am glad your cysts remain stable! What is this test you are referring to with the blood?

<<Have you had the lab tests to show blood chemicals that would indicate cancer>>>   I have never heard of any!

Be well, Donna. 

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

I just kinda wonder. MinnieK, is life worth it to you? Have you made a decision? You implied that you have. I hope you accept what ever is going on, challenge it and do well.

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi foxhd

i have made some good and some less good choices in my life. The choice to join this forum was indeed a good one. Sometimes you just need to ask difficult questions and then you ask experts. This site is a space filled with experts who have taken the time to share their particular wisdom with me and I am very very grateful.

Today I'm OK, if slightly embarrassed by my negativity. But then I comfort myself, it's part of the whole living thing! i have stuff to do and a family to organise.

And, as i was reminded, nobody has said it IS a met! i might have freckles-on-the-Pancreas and THEN i'll be sorry for having been so miserable!

Thank you for taking the time to talk with me.

In gratitude

Minnie 

 

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi Donna

What can I say, you've gotten me beat not only by years but by diagnosis as well. But I'm not suicidal, I'm just down for a few counts. I am so aware that there are people so much worse off than I am. Does that however exclude me from the right to be sad, to be a little less courageous than I should be?

I will get up I will fight I will be brave and strong and true but I will also be sad.

Minnie

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi Sarah

Why is this question so strange? i really don't understand that. I simply asked people who have been there who are there and who are fighting if they believe it is worthwhile. And I've been blessed with honest responses varying from "Pull yourself together you whining Whimp" to "I have also felt this way" and "Here's some advice for when you feel this way" On that particular day I felt particularly sad and I believe that i'm entitled to some sadness, some regret at the loss of my perceived wellness.

And the WORST part is, nobody has yet said that I DO have mets! So maybe this self-pity-party was for no cause at all!!! 

So yes I was in shock and yes I will carry on and yes I will have sad and despondend days, because I am human.

With love

Minnie

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

Those of us in this group are fighting...fighting for our lives.  We want to be cancer free.  Some have made it, others have not.

I know I have thought that it is not worth it at times....when I am feeling down.  It happens.  When it happens what do I do?  I find something nice to do for myself.  Maybe I eat some bacon...(mmm....bacon).  Or go for a drive.  Or play a game with my daughter.

I do not know where you are in life.  I am still young (49.975), and while I have medical issues (msRCC; Cornary Artery Disease), mentally I am at 100% (or 99.97%).  I am paid for my brain, and that is as good as ever.

And I have to live, because my wife, as much as I lover her, will not teach my Daughter physics.  That is my job.  And to do that, it is worth it.  For me.

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

During my darkest days I never entertained the thought that fighting this disease might not be worthwhile .

We all get down and disgusted at times . After all , cancer is a nasty business .  Living , as a whole , is not a nasty business unless we choose to make it that way . Every day is a gift and I plan to live as many of them as I can no matter how hard the fight might get .

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I think that's what we all want to see and hear.  That you haven't given up on yourself.  We have all been down at times, some a bit lower than others.  And I admit, I've been there, too.

If you go back to read your first post, most of us interpreted it as you were willing to shrug and consider quitting, without even knowing if the cysts found in the pancreas were cancerous.

Re the tests given: A CBC and CMP will tell the Dr. if the pancreas is functioning within normal ranges.  And the same tests, given over a period of months will tell if the changes are something to be concerned abou.

My M-I-L is confronting the same issue; but at age 97, has chosen not to have confirmation tests, which would mean an all day trip up and back to a regional med center.  So her Dr. is working off symptoms, a CT done in June and labs and check-up every 2-3 months. Right now her treating PC says 95%, it's cancer.  But she doesn't want anything-surgery, drugs, or radiation.  And at 97, who can fault her.

What you need is a big dose of HOPE, a family who will roll with what you are experiencing, and some of us old grouches on this board who have sent you a wake up call.  We'll stay with you and nip you on the heels as you chase after forever.

All best wishes.

Donna

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I have a cat, who adopted our office and truck shop over 12 years ago.  I've been his prime caregiver and we've been thru turning him into it,  various infections and meds, lacerated corneas and torn ears from defending his turf, radiation of the thyroid for Hyperthyroidism, and too many ticks and fleas to count.  I think his ultimate insult was last week when I found an engorged tick on the edge of his anus.  He knew it was there, and wouldn't get off my lap until I checked every part of him.

So your day could be worse.

Smile

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi Donna

My cat who's about 99 in human years is suffering from out of control diabetes! She's really really old but still loves a cuddle,

her food and her spot in the sun. When I'm really really sorry for myself i look at her and it gives me a quick pick-me-up!

 

Thanks for your kind words. Today I'm better. The sun is shining, the summer is with us and, as Robert Frost says, "But I have promises to keep,/And miles to go before I sleep"!

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi dhs1963

Thank you for reminding me. My husband is a great father, a good cook but his interpersonal relationship skills suck! That of itself is a very good reason to fight!

I'm 59 and I have been very lucky. i was just lulled into a false sense of security, I had thought i was going to be cancer free forever. Now I'm slightly challenged and

after a pause, I'm OK.

Thank you for your well-considered words

Minnie

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

Just enjoy today.  Do something fun.

We can die a little each day waiting for bad news or we can live!

a_oaklee
Posts: 137
Joined: Nov 2013

Minnie.  I have a question for you.  I am curious.  My question is:

If you were "face to face" with a cancer patient or their spouse, would you ask the same question?  The same words?

I am not being sarcastic, I would really like to know your answer.  Perhaps if you ponder the appropriateness, you will understand why the question "hit a nerve" with some people here. 

You have every right to ask that question, but I have to tell you that since I read it, it haunts me.  I never, ever, ever gave any consideration to whether or not our quest for NED was worthwhile.  My husband and I just don't think along those lines.  We've never considered doing nothing, or giving up. 

You believe your question is about you.  But you asked us to search our hearts and souls for the value of life, the companionship of our loved one....  It truly hurt me when you said my husband who has Stage 4 RCC is just going to die anyway.  I really didn't want to think about that possibility. 

I think you must be unaware of how life can still be worthwhile living at a Stage 4 diagnosis.  It is certainly different, and difficult and yes, we wish we could go back in time.  BUT, life is still good because of the love of family, and all the other things that bring joy to a person. 

I am so impressed by my husbands strength and courage and his willingness to fight. 

I know you don't feel well and are scared.  I do hope that you remain healthy.  Its normal to feel sad and I do hope that if it is prolonged, or you feel like giving up, that you reach out for help from your family, friends, doctor.  Keep reading here.  There are some wonderful people participating to help others.

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Dear a-oaklee

To answer your first question, yes i did. My dear dear friend who recently passed away from colon cancer. When she was diagnosed, I made her a promise I would walk the walk with her and one day as we sat musing about her disease, and it's, by then, inevitable conclusion, i asked her in those words exactly, was/is it worthwhile. She was quiet for a very long time and then she said that if it had not been for her children, she would have given up long ago. That was her story.

Perhaps you are right, perhaps it was an inappropriate question. i never meant to cause pain or give offence

However you advise me to reach out and stay connected to this forum. Yet you consider my question "inappropriate". Please let me know how and where there is connectedness and perhaps solicitude if a heart felt question causes pain and anquish and is understood as death tiding for a much loved husband.  

a_oaklee
Posts: 137
Joined: Nov 2013

Thankyou for responding and answering my question to you.  I'm very sorry for the loss of your dear friend.  I'm glad for your friend that she felt her struggle was worth it for her family.

 

I did not say your question was inappropriate.  I wanted YOU to think of it's possible appropriateness in light of some of the responses that you received.  I was honestly trying to get you to see things from my perspective as a Stage 4 patient/caregiver.  And that is what you were asking.   I absolutely do not think that you were trying to be offensive and I know you are not responsible for any sadness that I might have felt.  Just because I might not be comfortable looking at the dark side, doesn't mean it shouldn't be talked about. 

The thread you started has gotten quite a bit of attention.  Thats a good thing, and I would call that "connectedness".  I recognize your "heartfelt" sincere question, and if I ever feel badly reading something here, it's because of my own personal painful war against cancer.  It's not your responsibility.

Keep reading. Keep writing.  Best Wishes.

cran1's picture
cran1
Posts: 126
Joined: Mar 2013

When I feel sorry for myself I go to the kids with cancer section.......

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi there cran1

And that is exactly what I did yesterday! Sometimes it does one good to realise there are some people who'se problems make your own seem trite.

Djinnie's picture
Djinnie
Posts: 751
Joined: Apr 2013

Hi Minnie, 

Don't be too hard on yourself, we all know what it is like when you first receive a cancer diagnosis. It is akin to being whacked across the back of the head with a metal club. Who thinks straight at that point, we all go into shock. After being clear for six years you started to feel a sense of confidence in your immune system. The possibility of a reoccurrence would send you reeling,leaving you temporarily depressed and deflated. I know that  from my own experience after having a reoccurrence after ten years. I thought that at the ten year mark that I had it licked:(

You know that no matter what it takes you will fight it, when it comes down to it the survival instinct is innate to all of us. We all get down from time to time, it's allowed! I hope your tests prove you have nothing to worry about:)

All the best

 

Djinnie x

MinnieK's picture
MinnieK
Posts: 16
Joined: Nov 2013

Hi Djinnie

Thank you for your kind and understanding words. In restrospect I believe not only was I in shock, I was soooo angry as well.

Perhaps I should have paused before I wrote my question because it may well have appeared extremely tactless. I needed some sort of affirmation that my feelings were OK that everybody had felt like that at some time or other. However my phrasing appeared to imply that not only was I ready to give up but that I felt that everybody's fight was futile. But as they say, hindsight is 20/20 and I received some very good advice despite my hasty question.

I'm much more positive now and grateful that there is so much that can be done.

In Gratitude

Minnie

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I know we've all had a situation in which we fired from the hip (mouth) and asked questions later. Not to say it's always OK, and I've had to apologize to my husband more than once, but I'm reminded of the old saying, "Lord give me patience, and I want it right now."

With cancer, we want answers and solutions, no frustrations, no anxiety, etc.

Minnie, you and I are of an age where we can be called tough, old broads.  Let's show them how tough we can be.

Gool luck in your pursuit of answers, and have a Happy Thanksgiving.

Donna

cran1's picture
cran1
Posts: 126
Joined: Mar 2013

Hang in there M. Also no one can tell you how you should feel either. Happy Thanksgiving.

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