New and depressed

Pattymayo
Pattymayo Member Posts: 12
in Kidney Cancer #1

I am new to the board. Have been reading everyone's story and response. Unfortunately I am here because of my 42 year old son. He just had a radical nephrectomy on the 15th. Still in pain and recovery. I have read a lot on the new treatments but only a few people are helped by them and kidney cancer is still one of those cancers that isn't as treatable as others. I guess cancer just sucks. I was wondering on the survivors in your group are they the 25-40% who survive and we don't hear from the other 60-75% who don't, for the obvious reason.  He had a fairly large tumor stage 3...our world has turned upside down. Thanks for the stories and hoping all on the board a long, happy life.

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Comments

  • Mmoses25
    Mmoses25 Member Posts: 322 Member
    edited April 2021 #2
    Sorry

    Sorry you had to join the group. Im stage 3 grade 3 I've had it for a year now still cancer free your son is young which helps try not to read internet which is mostly outdated this is a great group of people if you need to vent this is the place to do it I wish the best for you and your son I know it's hard at first but you have to be strong for your son if you have any question just ask

  • Biner
    Biner Member Posts: 137 Member
    edited April 2021 #3
    Hi Pattymayo,im 42 yers old

    Hi Pattymayo,im 42 yers old and 3 stage too,also 3 grade wich agressive.My story only 1 year off cancer.You right now life turn upside down,i wich your son long life.

  • Pattymayo
    Pattymayo Member Posts: 12
    edited April 2021 #4
    Mmoses25 said:

    Sorry

    Sorry you had to join the group. Im stage 3 grade 3 I've had it for a year now still cancer free your son is young which helps try not to read internet which is mostly outdated this is a great group of people if you need to vent this is the place to do it I wish the best for you and your son I know it's hard at first but you have to be strong for your son if you have any question just ask

    Thank you

    Thank you for your support. Do you have a medical oncologist you follow up with or your urology surgeon? I would trade places with him in a heartbeat. I am glad you are doing good.

     

  • Pattymayo
    Pattymayo Member Posts: 12
    edited April 2021 #5
    Biner said:

    Hi Pattymayo,im 42 yers old

    Hi Pattymayo,im 42 yers old and 3 stage too,also 3 grade wich agressive.My story only 1 year off cancer.You right now life turn upside down,i wich your son long life.

    Thanks

    Thanks Biner...I  hope you are ok. Have read the mistakes they have made with you. I asked on another message directed at you about your hospital and surgeon. Did you have an oncologist urology surgeon and a good hospital?

  • Mmoses25
    Mmoses25 Member Posts: 322 Member
    edited April 2021 #6
    Pattymayo said:

    Thank you

    Thank you for your support. Do you have a medical oncologist you follow up with or your urology surgeon? I would trade places with him in a heartbeat. I am glad you are doing good.

     

    oncologist

    I go to md Anderson cancer center there wonderful 

  • Pattymayo
    Pattymayo Member Posts: 12
    edited April 2021 #7
    Biner said:

    Hi Pattymayo,im 42 yers old

    Hi Pattymayo,im 42 yers old and 3 stage too,also 3 grade wich agressive.My story only 1 year off cancer.You right now life turn upside down,i wich your son long life.

    Young age

    Biner...that depresses me more

     Your oncologist said the younger the age the more chance of cancer returning? Did he give you a reason? Do younger people have more unfavorable outcomes?

  • Biner
    Biner Member Posts: 137 Member
    edited April 2021 #8
    Pattymayo said:

    Thanks

    Thanks Biner...I  hope you are ok. Have read the mistakes they have made with you. I asked on another message directed at you about your hospital and surgeon. Did you have an oncologist urology surgeon and a good hospital?

    i answered you another post

    i answered you another post

  • Biner
    Biner Member Posts: 137 Member
    edited April 2021 #9
    Pattymayo said:

    Young age

    Biner...that depresses me more

     Your oncologist said the younger the age the more chance of cancer returning? Did he give you a reason? Do younger people have more unfavorable outcomes?

    No,he said because you have

    No,he said because you have more years ahead more chances see cancer again,young age usually better prognosis.If diagnose at 70 chances die from heart attack bigger than die from cancer.But if you 30-40 too yearly for systemic failuire,but nobody know real nature cancer,some people live long after surgery some die few years.Accept reality the past belive in future

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited April 2021 #10
    Hello

    Im really sorry to hear that your son has RCC.  Im a mom too and I know how difficult it is to see our kids suffer in any way.

    I would encourage you to not go crazy reading stuff online, especially anything older than 3 to 5 years.  My opinion.  

    Right now I see you are concerned with statistics.  I think you should completely let that go.  Its not helpful.  The thing is you dont know where an individual will be in the given range.  Noone knows unless there is advanced disease affecting a persons health and quality of life.  And even then they dont know.  Its a guess.  My husband was told 6 months back in 2012, and hes still going strong.  He was Stage 4 at diagnosis.

    I think the best thing you can do for your son is to listen to him, and be helpful in what he requests.  Be as strong as you can be when you are together. 

  • Pattymayo
    Pattymayo Member Posts: 12
    edited April 2021 #11
    a_oaklee said:

    Hello

    Im really sorry to hear that your son has RCC.  Im a mom too and I know how difficult it is to see our kids suffer in any way.

    I would encourage you to not go crazy reading stuff online, especially anything older than 3 to 5 years.  My opinion.  

    Right now I see you are concerned with statistics.  I think you should completely let that go.  Its not helpful.  The thing is you dont know where an individual will be in the given range.  Noone knows unless there is advanced disease affecting a persons health and quality of life.  And even then they dont know.  Its a guess.  My husband was told 6 months back in 2012, and hes still going strong.  He was Stage 4 at diagnosis.

    I think the best thing you can do for your son is to listen to him, and be helpful in what he requests.  Be as strong as you can be when you are together. 

    a_oaklee

    Thank you.

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    edited April 2021 #12
    Sorry that you and your son are going through this

    I would have to agree with others about not trusting statistics and Dr. Google. There is so much more in treatment and research now. I also had a large tumor and nephrectomy in 2016 and I'm doing well. All the best towards your son.

  • tgpath1
    tgpath1 Member Posts: 97 Member
    edited April 2021 #13
    I am 50 and just had a

    I am 50 and just had a radical nephrectomy for stage 3 cancer.   My cancer was confined to the kidney so the radical nephrectomy removed the cancer and I will just need scans to watch for recurrence.  I am being treated at Dana Farber in Boston.  I have read nothing online (because every doctor says not to...outdated and tends to give worst case).  I am surprised by what you're saying because my doctor has indicated a chance of recurrence at 30% but that even then, it's highly treatable.   We did not get into what types of treatment (other than chemo and raditation are not used on kidney cancer)...the doctor did not want to overwhelm me with options unless I have a recurrence.   I have been told that there is no reason to expect that I won't live a very long life.  Being on the younger side was not a negative...they actually said that lends for a better recovery.   It's a tough recovery but your son is young and should bounce back well...I wish you both well and I pray he remains cancer free. 

  • Pattymayo
    Pattymayo Member Posts: 12
    edited April 2021 #14
    Deanie0916 said:

    Sorry that you and your son are going through this

    I would have to agree with others about not trusting statistics and Dr. Google. There is so much more in treatment and research now. I also had a large tumor and nephrectomy in 2016 and I'm doing well. All the best towards your son.

    Deanie0916

    Thank you.

  • Pattymayo
    Pattymayo Member Posts: 12
    edited April 2021 #15
    tgpath1 said:

    I am 50 and just had a

    I am 50 and just had a radical nephrectomy for stage 3 cancer.   My cancer was confined to the kidney so the radical nephrectomy removed the cancer and I will just need scans to watch for recurrence.  I am being treated at Dana Farber in Boston.  I have read nothing online (because every doctor says not to...outdated and tends to give worst case).  I am surprised by what you're saying because my doctor has indicated a chance of recurrence at 30% but that even then, it's highly treatable.   We did not get into what types of treatment (other than chemo and raditation are not used on kidney cancer)...the doctor did not want to overwhelm me with options unless I have a recurrence.   I have been told that there is no reason to expect that I won't live a very long life.  Being on the younger side was not a negative...they actually said that lends for a better recovery.   It's a tough recovery but your son is young and should bounce back well...I wish you both well and I pray he remains cancer free. 

    Tgpath1...I have read about

    Tgpath1...I have read about you. It gives me hope. I am coming from a place where cancer has taken my mother, brother and sister and siblings before 60. I am hoping thr advances with cancer go as quick as the covid-19 vaccine. I have looked at the smart patients side and it scares me. Thanks for the uplift. I will try to focus my mind on the positive but sometimes reality sets in and I think of everything. Will continue to be inspired by you.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited April 2021 #16
    From my perspective there

    From my perspective there have been incredible advancements in RCC treatment and survival just since my husband got diagnosed in 2012.  I remember being at the hospital in 2012 and all these doctors were telling us how lucky he was to have RCC now versus just a few years earlier with there wasn't any treatment.  It did feel odd to constantly be told how lucky he was.  I understand it now. 

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #17
    Can't quote statistics...

    that are often out-of-date before they reach major news.  After 15 years, I've read and heard most of the problems.  I participated in a Cancer Support Group for many of those years, and I think the most worried were the parent(s) or spouse.  Of course you have a right to be anxious a bit/a lot; but to be depressed over something YOU cannot control does no one any good, and especially your son.

    He needs you to be in his corner in his fight, not causing him more worry.  Let his Doctors deal with his health issues; don't try to second guess them; or tell your son what to do or what treatment to go with.

    If you need treatment for your depression, see a doctor for it; or get counseling. That will make everyone feel better as your son tries to get on iwth his life.

    Take it from someone who's been there.

    Air hugs,

    donna_lee

  • Tempest1
    Tempest1 Member Posts: 2 Member
    edited April 2021 #18
    Pout Study

    Suggest you review Pout Study, relative to Kindney cancer.  I have stage 3 UTUC with Lynch syndrome.  A lot depends on type & aggressivenss.  Am currently on chemo and am expecting a 25 point improvement in survivability after a radical nephrectomy of the left kidney.  Thus current prodicted survival, disease free/metatstis free for next 3-5 years in 70% range. Hang in there. 

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited April 2021 #19
    Tg path1. Re radiation to treat RCC

    Hi.  You are right that radiation is not used to treat RCC at the primary site in the kidney.    It is however a very successful treatment of RCC mets in other locations.  My husband had radiation to various bone sites and it killed the cancer cells in those locations.  Ive read its successfully used for lung mets and brain mets too.

    Im just putting this information out there so you know.  We live in a small town and the doctors here did not tell us about other treatments because they werent available here.  Shame on them.  But I learned about radiation for RCC on Smart patients.  So we looked into it and traveled to a major medical center.   

  • tgpath1
    tgpath1 Member Posts: 97 Member
    edited April 2021 #20
    a_oaklee said:

    Tg path1. Re radiation to treat RCC

    Hi.  You are right that radiation is not used to treat RCC at the primary site in the kidney.    It is however a very successful treatment of RCC mets in other locations.  My husband had radiation to various bone sites and it killed the cancer cells in those locations.  Ive read its successfully used for lung mets and brain mets too.

    Im just putting this information out there so you know.  We live in a small town and the doctors here did not tell us about other treatments because they werent available here.  Shame on them.  But I learned about radiation for RCC on Smart patients.  So we looked into it and traveled to a major medical center.   

    Thank you for the info!  I

    Thank you for the info!  I had no other mets so I'm sure that's why the doctor told me what he did...in my case, if I needed treatment, it would not be chemo or radiation.  

  • Anniemevo
    Anniemevo Member Posts: 2
    #21
    a_oaklee said:

    Hello

    Im really sorry to hear that your son has RCC.  Im a mom too and I know how difficult it is to see our kids suffer in any way.

    I would encourage you to not go crazy reading stuff online, especially anything older than 3 to 5 years.  My opinion.  

    Right now I see you are concerned with statistics.  I think you should completely let that go.  Its not helpful.  The thing is you dont know where an individual will be in the given range.  Noone knows unless there is advanced disease affecting a persons health and quality of life.  And even then they dont know.  Its a guess.  My husband was told 6 months back in 2012, and hes still going strong.  He was Stage 4 at diagnosis.

    I think the best thing you can do for your son is to listen to him, and be helpful in what he requests.  Be as strong as you can be when you are together. 

    My dad was given months

    My dad was given months rather than years last week, amazing to hear your husband is still here when he was only given 6months, that is what I am praying for , just more time. He is 78 kidney is cancerous plus specs in lymph and lungs, hoping pazopanib will do its Job. He is a fit 78 year old who cycles and golf's, he isn't coping with feeling so rough says he would prefer not to be here than this carry on, only been on pazopanob 5 days so hope there is a turning point where he starts to feel.better soon

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