Is it worthwhile?

MinnieK
MinnieK Member Posts: 16
in Kidney Cancer #1

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?

 

«1

Comments

  • dhs1963
    dhs1963 Member Posts: 513
    #2
    Your premise is wrong

    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
    MinnieK Member Posts: 16
    #3
    dhs1963 said:

    Your premise is wrong

    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. 

     

    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
    Jojo61 Member Posts: 1,309 Member
    #4
    MinnieK said:

    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.

    Hi Minnie

    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

     

  • I am alive
    I am alive Member Posts: 315
    #5
    Minnie, you ask if treatment

    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
    foxhd Member Posts: 3,181 Member
    #6
    I am alive said:

    Minnie, you ask if treatment

    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. 

    My question is quite simply, if it is cancer, is it worth the pa

    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.

  • angec
    angec Member Posts: 924 Member
    #7
    Minnie, I have to snicker at

    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

     

  • Limelife50
    Limelife50 Member Posts: 476
    #8
    OMG

    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

  • Miashelle1
    Miashelle1 Member Posts: 44
    #9
    Minnie....

    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

  • srbelle1
    srbelle1 Member Posts: 123
    #10
    excuse my bluntness but is it

    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

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #11
    MinnieK said:

    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.

    Sorry for all you are going

    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

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #12
    srbelle1 said:

    excuse my bluntness but is it

    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

    And what if it's not RCC in the pancreas?

    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
    srbelle1 Member Posts: 123
    #13
    donna_lee said:

    And what if it's not RCC in the pancreas?

    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

    Oh. Wow, Donna! what an awful

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

  • angec
    angec Member Posts: 924 Member
    #14
    donna_lee said:

    And what if it's not RCC in the pancreas?

    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

    Donna, sorry to hear about

    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. 

  • MinnieK
    MinnieK Member Posts: 16
    #15
    Jojo61 said:

    Hi Minnie

    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

     

    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

  • MinnieK
    MinnieK Member Posts: 16
    #16
    Jan4you said:

    Sorry for all you are going

    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

    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

  • MinnieK
    MinnieK Member Posts: 16
    #17
    I am alive said:

    Minnie, you ask if treatment

    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. 

    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

  • foxhd
    foxhd Member Posts: 3,181 Member
    #18
    angec said:

    Donna, sorry to hear about

    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. 

    Well?

    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
    MinnieK Member Posts: 16
    #19
    angec said:

    Minnie, I have to snicker at

    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

     

    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

  • MinnieK
    MinnieK Member Posts: 16
    #20
    Limelife50 said:

    OMG

    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

    HiLimelife50

    And that's what I'll do.

    Thanks for listening

  • MinnieK
    MinnieK Member Posts: 16
    #21
    Miashelle1 said:

    Minnie....

    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

    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

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