New here--RCC metastasized to lungs

Cdmvirginia
Cdmvirginia Member Posts: 4
in Kidney Cancer #1

Greetings. My husband, age 58, was diagnosed last year with Kidney cancer--clear cell kind. His kidney was removed. At same time small nodules were seen on lungs. Later scans showed growth in the tumors in lungs. Biopsy confirmed cancerous. They cannot be removed. Good news--we are told that these tuomors are very slow growing and very small--largest is 10 millemeters. Others are 1-2 millimeters. Nothing in lymphnodes. He is otherwise in terrific condition.

We met with the oncologist who is supposedly a 'guru' in the kidney cancer field. We travelled to this hospital to see him. He suggested KTIs (drugs). But he said that my husband should go the 'watchful waiting' route for a few months first, and come back in three months for another scan to see how they are growing. Then if needed start the targeted therapy drug we could. He says he has seen tumors dissappear completey (outliers of course). He sounded so hopeful about new treatments on the horizon, including a immunotherapy that is much less toxic than IL-II and could have better results.

During this meeting i asked the oncologist about prognosis (we have two young kids, etc). He said that he didn't want to talk mortality yet. He said these are slow growing and that every cancer is different. He said--compare this to a diagnosis of heart disease. It's a chronic condition which requires management your whole life. I can't tell if he was blowing smoke or not!

Bottom line. The oncologist discussion made us feel ok--that we can manage to kick the can down the road for a long time possibly. But when we go online, the stats are SO dismal. I honestly don't know how i should feel or how i should/should not prepare myself. Is two-five years the best case scenario or are 10+ years possible? I guess we will learn more in May when we go back for the next scan.

In any event--my questions for this group are:

--Am I crazy to think that this can be managed by moving from one therapy to the next and hoping for new ones to crash the market, as the oncologist suggested? Is anyone doing this with success? Is longevity truly a possibility? 

--How do i keep abreast of new therapies on the horizon?

--SHould we consider IL-II at this stage, which sounds like a nightmare and a shot in the dark?

--How do I find out about clinical trials?

Sorry for long post. I am just not sure how to understand this disease and what it means for our future. Any thoughts are welcome.

 

Comments

  • Confused39
    Confused39 Member Posts: 14
    #2
    Not the same cancer, but my

    Not the same cancer, but my mom lived for many years -- good years -- with metastatic breast cancer. Everyone responds differently to treatment and many can live many years with metastatic cancer. Imagine if there are 10 good treatment options and he can manage to get a couple of years of most of them -- sometimes more. My mom went through several treatments while living with cancer through much of her body. Some were easier than others, but they were all tolerable. Keep the faith and don't let online stats scare you. 

    My mom would still be here and thriving if an injury hadn't forced her to stop treatment for several months.

    Sending you a big hug.

  • ImNotDeadYet
    ImNotDeadYet Member Posts: 244
    edited March 2018 #3
    I'm in a similar boat

    First, I'm so sorry your husband has to go through this. As for your questions, I can address the first one from my own experience and perspective.

    My lung mets appeared a few months after my neph. I just started Votrient (a TKI) about a week and half ago. Prior to starting, I had the mortality discussion with my oncologist. She gave me  prognoses, including with and without meds. But she was also hesitant to put a firm number on prognosis with meds, because she said that there are so many new things coming down in the near future. My hope is that the Votrient works (once I'm able to tolerate it better) for as long as possible. If it doesn't, there are other options to manage. I'm hopeful that the meds available now can help me manage this until something more curative is available. There are new things being tested all over the world. It is frustrating that many appear so promising but aren't available yet. Hopefully, we'll keep this managed long enough to try some of them. I have to believe that. The alternative would be to give up, cash in my retirement, and enjoy as much of the next year or two as I can. Instead, I opt for a longer term fight that might lead to a cure.

    I wish you and your husband all the best on this journey. We're all here for you along the way.

    Gary

  • Cdmvirginia
    Cdmvirginia Member Posts: 4
    #4
    ImNotDeadYet said:

    I'm in a similar boat

    First, I'm so sorry your husband has to go through this. As for your questions, I can address the first one from my own experience and perspective.

    My lung mets appeared a few months after my neph. I just started Votrient (a TKI) about a week and half ago. Prior to starting, I had the mortality discussion with my oncologist. She gave me  prognoses, including with and without meds. But she was also hesitant to put a firm number on prognosis with meds, because she said that there are so many new things coming down in the near future. My hope is that the Votrient works (once I'm able to tolerate it better) for as long as possible. If it doesn't, there are other options to manage. I'm hopeful that the meds available now can help me manage this until something more curative is available. There are new things being tested all over the world. It is frustrating that many appear so promising but aren't available yet. Hopefully, we'll keep this managed long enough to try some of them. I have to believe that. The alternative would be to give up, cash in my retirement, and enjoy as much of the next year or two as I can. Instead, I opt for a longer term fight that might lead to a cure.

    I wish you and your husband all the best on this journey. We're all here for you along the way.

    Gary

    Gary thanks for sharing.

    Gary thanks for sharing. Sorry you are going through this. Let me know how you do on the Votrient. I think our Oncologist suggested Optivo (sp?) so we shall see how that is tolerated by my husband when the time comes to start that.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited March 2018 #5
    Cdmvirginia said:

    Gary thanks for sharing.

    Gary thanks for sharing. Sorry you are going through this. Let me know how you do on the Votrient. I think our Oncologist suggested Optivo (sp?) so we shall see how that is tolerated by my husband when the time comes to start that.

    So Sorry Cdm

    Its very tough dealing with this rollercoaster 

    You sound like you have a great guy on your side... I hope and pray things go well for you

    can I ask what your original pathology said If you dont mind

    Annie

  • Bellafelice
    Bellafelice Member Posts: 57 Member
    edited March 2018 #6
    I know exactly how you feel

    My hubby initially had kidney cancer in 2008, and his nephrectomy was done that year. We had yearly CTs done, and in 2015 there were 2 mets in the scan that the radiologist failed to report. In 2016 our (now former) family dr. felt there was a "zero" probability of the kidney cancer reoccurring, so he just ordered a sonogram (useless for RCC). Then last year in 2017 hubby had totally unrelated infection in prostate, and a ct scan was ordered and showed the 2 mets had travelled to his spine. We were fortunate enought to get radiation (SBRT) to the 2 spinal mets, and then he was prescribed Votrient. He was a good responder to both the radiaion and the Votrient. The two mets have shrunk considerably, and if you didnt know he had kidney cancer you would never suspect it. He works from 7 am to 4:30 daily and is normal in all ways. His side effects from the Votrient wore off after about 6 months. 
    I also asked a few RCC specialists about his "prognosis" and one said "I never say anything about that-some people who were doing terrible, are still around years later,and the opposite also true." I worried myself sick about him dying soon, and finally got myself so upset over time, I stopped worrying. I think I couldnt take the worrying any more.

    I strongly recommend that you also get on the Smart Patients Board that has a kidney cancer group-that group has a number of member who have been around 10 and more years since they were diagnosed and had all kinds of mets.

    Please write again anytime and I am more than glad to reply to your private emails as well. I can actually say unless someone has been through this cancer situation, they cannot fathom the fear we have. It will get better.

     

  • Cdmvirginia
    Cdmvirginia Member Posts: 4
    #7
    Bellafelice said:

    I know exactly how you feel

    My hubby initially had kidney cancer in 2008, and his nephrectomy was done that year. We had yearly CTs done, and in 2015 there were 2 mets in the scan that the radiologist failed to report. In 2016 our (now former) family dr. felt there was a "zero" probability of the kidney cancer reoccurring, so he just ordered a sonogram (useless for RCC). Then last year in 2017 hubby had totally unrelated infection in prostate, and a ct scan was ordered and showed the 2 mets had travelled to his spine. We were fortunate enought to get radiation (SBRT) to the 2 spinal mets, and then he was prescribed Votrient. He was a good responder to both the radiaion and the Votrient. The two mets have shrunk considerably, and if you didnt know he had kidney cancer you would never suspect it. He works from 7 am to 4:30 daily and is normal in all ways. His side effects from the Votrient wore off after about 6 months. 
    I also asked a few RCC specialists about his "prognosis" and one said "I never say anything about that-some people who were doing terrible, are still around years later,and the opposite also true." I worried myself sick about him dying soon, and finally got myself so upset over time, I stopped worrying. I think I couldnt take the worrying any more.

    I strongly recommend that you also get on the Smart Patients Board that has a kidney cancer group-that group has a number of member who have been around 10 and more years since they were diagnosed and had all kinds of mets.

    Please write again anytime and I am more than glad to reply to your private emails as well. I can actually say unless someone has been through this cancer situation, they cannot fathom the fear we have. It will get better.

     

    Bellafelice, thank you for

    Bellafelice, thank you for your compassionate response. Some days i worry non stop and then others I don't think about it or I feel really positive. Good to know this group exists; i think it will help me a lot.

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    #8
    Cdmvirginia said:

    Bellafelice, thank you for

    Bellafelice, thank you for your compassionate response. Some days i worry non stop and then others I don't think about it or I feel really positive. Good to know this group exists; i think it will help me a lot.

    similar feelings

    I am just like you said, some days I worry non stop and then other days I am positive (although mixed with tinges of worry throughout the day).

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    #9
    The very first thing I

    The very first thing I learned on this journey is NOT to read online articles giving percentages of mortality. Many I read said I have an 8% chance of surviving 5 years out. Then I noticed most of the articles are 8-10-15 years old!! There have been amazing strides just in the past few years. So I threw away all that old info and I am here, also at Smart Patients, and a couple of Facebook groups. 

    I had myself dead and buried quickly by googling and reading things. It was depressing. So I said, NO MORE. I choose to live life one day at a time, and none of us know how long we have anyway. I've done a lot better since doing it this way. Be vigilant, though, and in close contact with your doctors.

    All the best and we are always here for you. I am fairly new to this group and I'm so thankful for everyone here. They are truly wonderful people.

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    #10
    JoeyZ said:

    The very first thing I

    The very first thing I learned on this journey is NOT to read online articles giving percentages of mortality. Many I read said I have an 8% chance of surviving 5 years out. Then I noticed most of the articles are 8-10-15 years old!! There have been amazing strides just in the past few years. So I threw away all that old info and I am here, also at Smart Patients, and a couple of Facebook groups. 

    I had myself dead and buried quickly by googling and reading things. It was depressing. So I said, NO MORE. I choose to live life one day at a time, and none of us know how long we have anyway. I've done a lot better since doing it this way. Be vigilant, though, and in close contact with your doctors.

    All the best and we are always here for you. I am fairly new to this group and I'm so thankful for everyone here. They are truly wonderful people.

    JoeyZ, you are so right!

    Hi, JoeyZ:

    You are so right about reading articles on the Internet.  Boy are they depressing...and that's an understatement!  Those articles really screwed me up for a long time.  They were making me so mentally sick with constant worry, fear and anxiety.

  • Allochka
    Allochka Member Posts: 1,074 Member
    #11
    Hello,

    Hello,

    sorry to hear about your husband! Joey is right, statistics online is outdated.  Many treatments have appeared recently and more will come.

    Here you will find several members who are Stage 4 but lead productive lives for years. Some are Stage 4 but with no evidence of disease at the moment. And I've heard statement that metastatic kidney cancer in many cases can be managed as chronic disease these times.

    Smart Patients is the best place to learn about latest treatments and trials.

    And please do not google!

     

    Hugs!

    Alla

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