Stage IV TNBC and the kids?

Haljo95
Haljo95 Member Posts: 5
edited March 2014 in Breast Cancer #1
My wife has been diagnosed with stage IV TN. She was originally diagnosed in May of 2006 with ductal carsonoma in her left breast. She had a bilateral with reconstructive surgery. Her cancer came back in Feb of this year in the super cavicular, medial steinym and bone just under the sternum. (Forgive my spelling) She has gone through 8 months of chemo and radiation. The tumors have shrank significantly and show no metabolic activity. She just started a new round of chemo last week as a precaution. She will have three more treatments then it will be about monitoring. Her pet scans have come back clear with no other involvement. My wife has been an RN for the past 12 years and specializes in women's health. She is very aware of her condition. She is my hero because of how well she approaches each and every day even when she feels miserable through her treatments. She spends no time on the internet doing research. She leaves that totally up to me and I have learned a lot both good and bad about her desease. I guess because she works in the medical field she understands it's about her quality of life that counts. She doesn't want to sit around worrying about things she can't control. She would rather live each day recognizing the beauty around her. I do the best I can to let that happen and remove as many barriers as I can. We have three kids. A daughter 19 a 14 year old son and a 9 year old daughter. We also have a 1 year old grandson. My wife never talks about her desease. I don't push her into conversation. I simply tell her if she wants to talk I'm there. I worry about the kids and what goes through their minds. They don't know their mom's cancer is incurable. How do I manage this with the kids? Should we even discuss her true prognosis with them? Is there anyone with advice on this?

Comments

  • roseann4
    roseann4 Member Posts: 992 Member
    You're quite a hero yourself.
    Thanks for all you do for your wife. It is important to enjoy each day and I believe that is often more difficult for the mate than the person going through it themselves. There is another site you might find helpful. It is breastcancer.org. It has seperate topics for different types of bc and different stages. You might find it comforting and informative.

    There is so much great research going on now and who knows what the future may bring. Where there is life, there is hop so in your wife's situation it sounds like there's lots of hope. Incurable today may be curable tomorrow.

    Roseann
  • Haljo95
    Haljo95 Member Posts: 5
    roseann4 said:

    You're quite a hero yourself.
    Thanks for all you do for your wife. It is important to enjoy each day and I believe that is often more difficult for the mate than the person going through it themselves. There is another site you might find helpful. It is breastcancer.org. It has seperate topics for different types of bc and different stages. You might find it comforting and informative.

    There is so much great research going on now and who knows what the future may bring. Where there is life, there is hop so in your wife's situation it sounds like there's lots of hope. Incurable today may be curable tomorrow.

    Roseann

    Thank you
    Thank you roseann4.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Haljo95 said:

    Thank you
    Thank you roseann4.

    Be honest with the kids
    I lost my mother to MS when I was 12. Throughout her illness, I was included every step of the way. I even remember writing a report in grammar school about MS. I knew a whole lot about the progression of the disease back then. I also knew from the getgo that she would probably die of this disease (this was 50 years ago) but we always had hope and I was loved and did not feel there were any secrets (of course, there had to be some).

    From my personal experience, my recommendation is to be honest with them, answer their questions as best you can. Also ask them if they have any questions. Back when my mom was ill, I don't think many people did counseling, but that is definitely an option I would also consider today. While I did see my mom in pain and watched her deteriorate, my memories are of her love for me, her humor, her faith, and her "living" while having that horrible disease. Don't underestimate the memories gleaned by children under difficult circumstances - they aren't all negative. Indeed not.

    My hopes and prayers go out to your family,

    Suzanne
  • Haljo95
    Haljo95 Member Posts: 5

    Be honest with the kids
    I lost my mother to MS when I was 12. Throughout her illness, I was included every step of the way. I even remember writing a report in grammar school about MS. I knew a whole lot about the progression of the disease back then. I also knew from the getgo that she would probably die of this disease (this was 50 years ago) but we always had hope and I was loved and did not feel there were any secrets (of course, there had to be some).

    From my personal experience, my recommendation is to be honest with them, answer their questions as best you can. Also ask them if they have any questions. Back when my mom was ill, I don't think many people did counseling, but that is definitely an option I would also consider today. While I did see my mom in pain and watched her deteriorate, my memories are of her love for me, her humor, her faith, and her "living" while having that horrible disease. Don't underestimate the memories gleaned by children under difficult circumstances - they aren't all negative. Indeed not.

    My hopes and prayers go out to your family,

    Suzanne

    Thank you
    Suzanne,

    I am sorry for your loss at such an early age but thank you so much for your story and advice. With my kids being so young it helps to have that insight. We have been honest with the kids for the most part. The only thing my kids don't realize is that mom will not be cured of cancer according to the doctors. I guess we have avoided that conversation with hope the doctors are wrong. Thank you again and God Bless you.

    Hal
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    roseann4 said:

    You're quite a hero yourself.
    Thanks for all you do for your wife. It is important to enjoy each day and I believe that is often more difficult for the mate than the person going through it themselves. There is another site you might find helpful. It is breastcancer.org. It has seperate topics for different types of bc and different stages. You might find it comforting and informative.

    There is so much great research going on now and who knows what the future may bring. Where there is life, there is hop so in your wife's situation it sounds like there's lots of hope. Incurable today may be curable tomorrow.

    Roseann

    Roseann hit the nail on the
    Roseann hit the nail on the head! What is incurable today may not be tomorrow! Also, breastcancer.org is an amazing site. They have separate threads for anything and everything related to breast cancer.


    Sending prayers and big hugs,


    Sue :)
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    My situation is not exactly
    My situation is not exactly same, but I'll share in the hope that it helps.

    I have a 14 yr old son, and my daughter is 9. I shared my diagnosis with them even before I had the full pathology (I have stage 3 IBC, also TN). My husband and I also shared the treatment plan, and the potential side effects. They even went to a chemo class so they would know about the side effects I would have to deal with. They both know that IBC is very aggressive, that my treatment options are limited, and that there is a high risk of recurrence. They also know that I am being aggressive right back.

    We have been very open and honest with them for a variety of reasons...they are both internet savvy and we don't want them getting all their info on this from the internet. They are both very bright, mature individuals and are able to handle the intellectual and emotional aspects of this nasty disease. (At one point my son told me to stop trying to protect him from my cancer...that it was mine and I couldn't protect him from it.) And we couldn't hide any of this even if we wanted to.

    As for discussing your wife's "true prognosis" here's my opinion...no one (not you, your wife, or the docs) know what the "true prognosis" really is. There are so many stories of people told they have six months or less and then those people go on to live for many many years. I do think you could use the word "chronic" when discussing this with your children, that it is something she (and the family) will always have to deal with, will always have to manage.

    It is also clear to me that you are a caring, supportive husband and father. Kudos to you! And as such, I'm sure that whatever you and your wife decide to do, that it will be the right thing for your family.

    Sending my thoughts and prayers,

    Linda
  • Rague
    Rague Member Posts: 3,653 Member
    The children need to know!
    Our sons are in their 30's so not small children at all but they have been told everything along my journey this last year plus.

    As far as younger children I can only tell you what Hubby went through. He lost his Mother to cervical cancer when he was 9 years old. He is an only child and 'late in life'. He was never told anything of what was happening and the last time he saw his Mom alive was when the ambulance took her from the house on Christmas Day 1964. He found out that his Mom died from his school teacher when he went to school the morning after she had passed when his teacher told him how sorry she was. (He found his Dad dead of a massive heart attack when he was 16.)

    For me, Christmas was always a joyous time growning up - obviously for him it wasn't. Every year has been hard - especially when the boys were little, they couldn't understand why Dad was an ogre then until I'd 'take it to him'. Early on they thought that I was just being nasty to him but finally realized that for everyone I had to get him out of the past and into the present. There is no year that problems aren't there but every year is a bit better. (We've been married 35 yrs)

    IF he had been told the truth, would Christmas still be a hard time for him - yes but would not have been the all consuming loss with no understanding - no (or at least probably not).

    There are some good books on how to talk to children. You might talk with the Navigators at the Cancer Care Center or your clergy (if you have any). Rather or not the best idea is to tell all the children at the same time - I don't know - perhaps talk with the older 2 first and then have them there when you talk to the younger. They do need to know before they hear 'through the grape vine'.

    Hope this made some sense - it's an issue that is very personal to me though not one I personally experienced - other than through Hubby.

    Susan
  • Haljo95
    Haljo95 Member Posts: 5
    Rague said:

    The children need to know!
    Our sons are in their 30's so not small children at all but they have been told everything along my journey this last year plus.

    As far as younger children I can only tell you what Hubby went through. He lost his Mother to cervical cancer when he was 9 years old. He is an only child and 'late in life'. He was never told anything of what was happening and the last time he saw his Mom alive was when the ambulance took her from the house on Christmas Day 1964. He found out that his Mom died from his school teacher when he went to school the morning after she had passed when his teacher told him how sorry she was. (He found his Dad dead of a massive heart attack when he was 16.)

    For me, Christmas was always a joyous time growning up - obviously for him it wasn't. Every year has been hard - especially when the boys were little, they couldn't understand why Dad was an ogre then until I'd 'take it to him'. Early on they thought that I was just being nasty to him but finally realized that for everyone I had to get him out of the past and into the present. There is no year that problems aren't there but every year is a bit better. (We've been married 35 yrs)

    IF he had been told the truth, would Christmas still be a hard time for him - yes but would not have been the all consuming loss with no understanding - no (or at least probably not).

    There are some good books on how to talk to children. You might talk with the Navigators at the Cancer Care Center or your clergy (if you have any). Rather or not the best idea is to tell all the children at the same time - I don't know - perhaps talk with the older 2 first and then have them there when you talk to the younger. They do need to know before they hear 'through the grape vine'.

    Hope this made some sense - it's an issue that is very personal to me though not one I personally experienced - other than through Hubby.

    Susan

    Thank You
    Thank you Linda and Susan. You both have confirmed what I was already feeling. I plan to discuss this with my wife and then with the oldest two kids first. Jodie has been doing well and is ready to start back to work. With things moving in a good direction and her starting back to work the timing might be good to discuss with the kids. Linda, you are so right about the "true prognosis". Thank you for reminding me.

    Best wishes to all.

    Hal
  • DebbyM
    DebbyM Member Posts: 3,289 Member

    Be honest with the kids
    I lost my mother to MS when I was 12. Throughout her illness, I was included every step of the way. I even remember writing a report in grammar school about MS. I knew a whole lot about the progression of the disease back then. I also knew from the getgo that she would probably die of this disease (this was 50 years ago) but we always had hope and I was loved and did not feel there were any secrets (of course, there had to be some).

    From my personal experience, my recommendation is to be honest with them, answer their questions as best you can. Also ask them if they have any questions. Back when my mom was ill, I don't think many people did counseling, but that is definitely an option I would also consider today. While I did see my mom in pain and watched her deteriorate, my memories are of her love for me, her humor, her faith, and her "living" while having that horrible disease. Don't underestimate the memories gleaned by children under difficult circumstances - they aren't all negative. Indeed not.

    My hopes and prayers go out to your family,

    Suzanne

    I have to agree with
    I have to agree with Suzanne. Be honest and up front with your children. They should know and have a right to know about their Mother's health. Your wife might find strength in them that no one would ever even realize.


    Prayers for your family,

    Debby
  • jnl
    jnl Member Posts: 3,869 Member

    My situation is not exactly
    My situation is not exactly same, but I'll share in the hope that it helps.

    I have a 14 yr old son, and my daughter is 9. I shared my diagnosis with them even before I had the full pathology (I have stage 3 IBC, also TN). My husband and I also shared the treatment plan, and the potential side effects. They even went to a chemo class so they would know about the side effects I would have to deal with. They both know that IBC is very aggressive, that my treatment options are limited, and that there is a high risk of recurrence. They also know that I am being aggressive right back.

    We have been very open and honest with them for a variety of reasons...they are both internet savvy and we don't want them getting all their info on this from the internet. They are both very bright, mature individuals and are able to handle the intellectual and emotional aspects of this nasty disease. (At one point my son told me to stop trying to protect him from my cancer...that it was mine and I couldn't protect him from it.) And we couldn't hide any of this even if we wanted to.

    As for discussing your wife's "true prognosis" here's my opinion...no one (not you, your wife, or the docs) know what the "true prognosis" really is. There are so many stories of people told they have six months or less and then those people go on to live for many many years. I do think you could use the word "chronic" when discussing this with your children, that it is something she (and the family) will always have to deal with, will always have to manage.

    It is also clear to me that you are a caring, supportive husband and father. Kudos to you! And as such, I'm sure that whatever you and your wife decide to do, that it will be the right thing for your family.

    Sending my thoughts and prayers,

    Linda

    I think your children should
    I think your children should know. Children are remarkable and may understand so much better how their Mom is doing by knowing the truth. No one is promised tomorrow, no one. We all just live for and in the day, whether we have bc or not.

    I am praying for your wife and your family,



    Leeza
  • Kylez
    Kylez Member Posts: 3,761 Member
    Haljo95 said:

    Thank You
    Thank you Linda and Susan. You both have confirmed what I was already feeling. I plan to discuss this with my wife and then with the oldest two kids first. Jodie has been doing well and is ready to start back to work. With things moving in a good direction and her starting back to work the timing might be good to discuss with the kids. Linda, you are so right about the "true prognosis". Thank you for reminding me.

    Best wishes to all.

    Hal

    Best wishes and prayers for
    Best wishes and prayers for your family!
  • cahjah75
    cahjah75 Member Posts: 2,631
    Halijo
    you are a very compassionate husband and father. Letting your wife know you are there if she wants to talk is all you need to do. Hopefully, she will find the inner strength to talk with your children about her condition. I will keep all of you in my thoughts and prayers.
    {{hugs}} Char
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Rague said:

    The children need to know!
    Our sons are in their 30's so not small children at all but they have been told everything along my journey this last year plus.

    As far as younger children I can only tell you what Hubby went through. He lost his Mother to cervical cancer when he was 9 years old. He is an only child and 'late in life'. He was never told anything of what was happening and the last time he saw his Mom alive was when the ambulance took her from the house on Christmas Day 1964. He found out that his Mom died from his school teacher when he went to school the morning after she had passed when his teacher told him how sorry she was. (He found his Dad dead of a massive heart attack when he was 16.)

    For me, Christmas was always a joyous time growning up - obviously for him it wasn't. Every year has been hard - especially when the boys were little, they couldn't understand why Dad was an ogre then until I'd 'take it to him'. Early on they thought that I was just being nasty to him but finally realized that for everyone I had to get him out of the past and into the present. There is no year that problems aren't there but every year is a bit better. (We've been married 35 yrs)

    IF he had been told the truth, would Christmas still be a hard time for him - yes but would not have been the all consuming loss with no understanding - no (or at least probably not).

    There are some good books on how to talk to children. You might talk with the Navigators at the Cancer Care Center or your clergy (if you have any). Rather or not the best idea is to tell all the children at the same time - I don't know - perhaps talk with the older 2 first and then have them there when you talk to the younger. They do need to know before they hear 'through the grape vine'.

    Hope this made some sense - it's an issue that is very personal to me though not one I personally experienced - other than through Hubby.

    Susan

    Yes, please be honest with
    Yes, please be honest with your children. Like Susan said, there are even good books out there to help your children to understand. I am sure that once you tell them, they will probably do their own research. They might even get mad, but, they aren't mad at anyone, just mad at cancer. Remember that.

    Hugs and prayers,

    Diane
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Haljo95 said:

    Thank You
    Thank you Linda and Susan. You both have confirmed what I was already feeling. I plan to discuss this with my wife and then with the oldest two kids first. Jodie has been doing well and is ready to start back to work. With things moving in a good direction and her starting back to work the timing might be good to discuss with the kids. Linda, you are so right about the "true prognosis". Thank you for reminding me.

    Best wishes to all.

    Hal

    Just checking in to see how
    Just checking in to see how you and the family are doing...

    Linda
  • susie09
    susie09 Member Posts: 2,930

    Be honest with the kids
    I lost my mother to MS when I was 12. Throughout her illness, I was included every step of the way. I even remember writing a report in grammar school about MS. I knew a whole lot about the progression of the disease back then. I also knew from the getgo that she would probably die of this disease (this was 50 years ago) but we always had hope and I was loved and did not feel there were any secrets (of course, there had to be some).

    From my personal experience, my recommendation is to be honest with them, answer their questions as best you can. Also ask them if they have any questions. Back when my mom was ill, I don't think many people did counseling, but that is definitely an option I would also consider today. While I did see my mom in pain and watched her deteriorate, my memories are of her love for me, her humor, her faith, and her "living" while having that horrible disease. Don't underestimate the memories gleaned by children under difficult circumstances - they aren't all negative. Indeed not.

    My hopes and prayers go out to your family,

    Suzanne

    Sending prayers for your
    Sending prayers for your family!