New here, husband has stage 4 kidney cancer

Jeffris1
Jeffris1 Member Posts: 41

My husband was having a racing heart and went to ER. He had a x-ray on his chest and they found a mass on his 5th rib. Had a biopsy done and came back kidney active.  Went to have a CT and showed a 5 x 6 cm mass connected to his kidney.  We are only beginning this journey.  5-25-18. Any advice or recommendations welcome.

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Comments

  • JerzyGrrl
    JerzyGrrl Member Posts: 760
    Wow

     Wow. You sure got hit with a ton of bricks. Glad you found the forums, although it's the place nobody wants to have to be. 

    No doubt your husband will get referrals to a specialist (or specialists) who is familiar with renal cell carcinoma. Nowadays, kidney cancer is  getting closer to becoming more of a chronic disease (used to be, we were all pretty much goners). New treatments for various kinds of stage 4 RCC are being developed all the time. There are people on this forum who've been stage 4 for quite a while. The doctors will have information about treatment options, plus a second opinion is often helpful. 

    It's good that he has you for support. As you're going through this together, I hope you also find that you have family, friends, and care team members who will support you as well. 

    Keep us posted - 

  • rhominator
    rhominator Member Posts: 233
    Sorry

    Hi there,

    I'm so sorry you fell into this club. But you found a great place for support. I was in a similar situation about 4 1/2 years ago with a stage 4 diagnosis. I can attest that I'm still going strong since the diagnosis. BTW: you can click on my profile picture/name for more information.

    As another member on this forum (FoxHD) is fond of saying: "We're living with cancer, not dying from it." 

    As far as good advise goes, I can only relay that I would have had a pretty tough time if wasn't for the support of my wife. She was a warrior when it came to dealing with hospital and insurance bureaucracy. I hope you can provide the same support for your husband.

    With God's help, good doctors and my wife, I'm doing fine. I hope you two can do the same.

  • Jeffris1
    Jeffris1 Member Posts: 41

    Sorry

    Hi there,

    I'm so sorry you fell into this club. But you found a great place for support. I was in a similar situation about 4 1/2 years ago with a stage 4 diagnosis. I can attest that I'm still going strong since the diagnosis. BTW: you can click on my profile picture/name for more information.

    As another member on this forum (FoxHD) is fond of saying: "We're living with cancer, not dying from it." 

    As far as good advise goes, I can only relay that I would have had a pretty tough time if wasn't for the support of my wife. She was a warrior when it came to dealing with hospital and insurance bureaucracy. I hope you can provide the same support for your husband.

    With God's help, good doctors and my wife, I'm doing fine. I hope you two can do the same.

    This is good news, if you are

    This is good news, if you are still going strong.

    My husband does not show any symptoms, is active, and has no other health issues.  All vitals are good.  Only reason we found it, was his heart started racing when he had a bad cold.  He says, "His check engine light went on".  So hopefully we have a fighting chance.  The CT scan said that all lympnodes and organs look good.  I assume he will have his one kidney removed and from there I don't know.

  • rhominator
    rhominator Member Posts: 233
    Jeffris1 said:

    This is good news, if you are

    This is good news, if you are still going strong.

    My husband does not show any symptoms, is active, and has no other health issues.  All vitals are good.  Only reason we found it, was his heart started racing when he had a bad cold.  He says, "His check engine light went on".  So hopefully we have a fighting chance.  The CT scan said that all lympnodes and organs look good.  I assume he will have his one kidney removed and from there I don't know.

    Check Engine Light

    I love the "check engine light" metaphor! Nice.

    I know both the news and the unknown can be overwhelming. But be mindful when you google for kidney cancer info. There's lots of stale information out there.  There have been and continue to be many advanced in RCC drugs and treatments. Wait for news from your oncologist.

    Upon diagnosis, what my oncologist had to say and what "google" said were far apart.  My oncologist was right. :)

    You guys might be able to reset that "check engine light" and carry on with a normal life.

     

  • Jeffris1
    Jeffris1 Member Posts: 41

    Check Engine Light

    I love the "check engine light" metaphor! Nice.

    I know both the news and the unknown can be overwhelming. But be mindful when you google for kidney cancer info. There's lots of stale information out there.  There have been and continue to be many advanced in RCC drugs and treatments. Wait for news from your oncologist.

    Upon diagnosis, what my oncologist had to say and what "google" said were far apart.  My oncologist was right. :)

    You guys might be able to reset that "check engine light" and carry on with a normal life.

     

    Talked to the urologist today

    Talked to the urologist today, said the kidney has to be removed with the mass.  We have a tuesday appt with the oncologist, who we will work with following the kidney removal on the rest.  That is all we know at this point.  I appreciate your insight.

  • JoeyZ
    JoeyZ Member Posts: 210
    All of us here have been

    All of us here have been right where you are!  Today marks 10 weeks since my radical right nephrectomy.  If you look at my profile, I had a huge tumor and a very difficult and long surgery out of state. But I have done ok. All the best to you guys and ask anything you need or want to. I used to be embarassed to ask, but not now. 

    Our new normal is doctors, scans and pills!!

  • Manufred
    Manufred Member Posts: 241
    Living with cancer.

    As others have already said, you may have to get used to living with cancer.  It's not all that bad, at least for some of us.

    If he is fit as you say, recovery from nephrectomy should not be too difficult.  Metastasis may show up if it is already Stage 4.  If so, you will have to deal with that - do your homework and talk to your doctors.  Lots of new drugs are becoming available.

    And best wishes.

    Fred

  • Jeffris1
    Jeffris1 Member Posts: 41
    Manufred said:

    Living with cancer.

    As others have already said, you may have to get used to living with cancer.  It's not all that bad, at least for some of us.

    If he is fit as you say, recovery from nephrectomy should not be too difficult.  Metastasis may show up if it is already Stage 4.  If so, you will have to deal with that - do your homework and talk to your doctors.  Lots of new drugs are becoming available.

    And best wishes.

    Fred

    I appreciate your input. I'm

    I appreciate your input. I'm really interested in the Ipilimumab and Nivolumab.  What type of side effects are there?  We know he has a 3 cm mass on his 5th rib and a 4 mm mass on his 8th rib.  So after the removal of the kidney he will be needing to address these.  That is all they are seeing at this time, nothing on any other organ or lymphnodes.

  • Jeffris1
    Jeffris1 Member Posts: 41
    JoeyZ said:

    All of us here have been

    All of us here have been right where you are!  Today marks 10 weeks since my radical right nephrectomy.  If you look at my profile, I had a huge tumor and a very difficult and long surgery out of state. But I have done ok. All the best to you guys and ask anything you need or want to. I used to be embarassed to ask, but not now. 

    Our new normal is doctors, scans and pills!!

    My husband does not know that

    My husband does not know that I have joined this group, but I feel that the more info I can get the better off we will be.  Surgery is scheduled for June 6 to remove the kidney and mass.

  • Jeffris1
    Jeffris1 Member Posts: 41
    Surgery is set for June 6th

    Surgery is set for June 6th to remove the kidney with the mass.  Dr said that is should be cut and dry, excuse the pun.  He will do lapascopic with an additional larger slice where he can reach in and remove the whole thing at once.  We will be talking to the oncologyst on this coming Tuesday, and see what he has to say.

  • APny
    APny Member Posts: 1,995 Member
    edited May 2018 #12
    So sorry you have to be here.

    So sorry you have to be here. We have a lot of people on this forum who are living with stage 4 kidney cancer. They're a wealth of information and support. I also suggest you join Smartpatients. Even more stage 4 people there and between the two forums you should get a lot of valuable info. All the best to both of you!

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Lucky racing heart

    Glad to see you made it to the ER before things got worse. 5 or 6 cm is not that big, but the 5th rib stuff must be addressed. Mine was 4.2 cm almost 16 years ago.

     

     

    icemantoo

  • Manufred
    Manufred Member Posts: 241
    Jeffris1 said:

    I appreciate your input. I'm

    I appreciate your input. I'm really interested in the Ipilimumab and Nivolumab.  What type of side effects are there?  We know he has a 3 cm mass on his 5th rib and a 4 mm mass on his 8th rib.  So after the removal of the kidney he will be needing to address these.  That is all they are seeing at this time, nothing on any other organ or lymphnodes.

    Immunotherapy

    I am one of the successes (at least so far) coming out of the Ipi/Nivo trial  (Checkmate 214).  Check it out. 

    My side effects were marginal; I lost my thyroid gland so I take daily thyroxine, and I have a skin rash that comes and goes and repsonds well to betamethasone steroidal cream.  Others can have more severe SE's.  My full story is on my profile.  I never had bone mets though.

    Fred

  • lken37
    lken37 Member Posts: 12
    Jeffris1 said:

    My husband does not know that

    My husband does not know that I have joined this group, but I feel that the more info I can get the better off we will be.  Surgery is scheduled for June 6 to remove the kidney and mass.

    You are in with a great group

    You are in with a great group of folks, who are more than willing to share information, prayers and comfort.  It has been 6 months since I had my right nephrectomy and have had no problems.  My Dr. keeps regular checks on me with blood tests and has taken me off of some of the medications I was on to aid my remaining kidney to do it's job.  Next month I will go in for a ct scan or MRI, (can't remember which), just to make sure there is no recurrance.  I felt it was kind of divine intervention that my Dr even found my cancer because I had no symptoms of any kind and he just ran an extra test at my yearly physical, an ultra sound.

  • Jeffris1
    Jeffris1 Member Posts: 41
    edited May 2018 #16
    Manufred said:

    Living with cancer.

    As others have already said, you may have to get used to living with cancer.  It's not all that bad, at least for some of us.

    If he is fit as you say, recovery from nephrectomy should not be too difficult.  Metastasis may show up if it is already Stage 4.  If so, you will have to deal with that - do your homework and talk to your doctors.  Lots of new drugs are becoming available.

    And best wishes.

    Fred

    We talked to the doctor about immunotherapy (Ipi/Nivo)

    We talked with the doctor about the immunotherapy (Ipi/Nivo), and he said that it looked like a good match for what he has.  He said it is terminal, but he could live for quite some time.  It is Stage 4 with proabably T2.  That is all we know so far. I also asked about the kidney cancer vaccine, but with him getting his kidney out next week there isn't enough time to look into that.  It is very new.  But I have to try to get him to think positive.  After the doctor said it is terminal he crashed.  The doctor said 2 years min, but who knows.  After talking to you all, I see that he could have many more. 

     

  • Retcenturion
    Retcenturion Member Posts: 240
    edited May 2018 #17
    You have your plan

    Sorry to hear the news of your husband. The surgery was bad but not as bad as I had thought about it. There are a lot of member's who have recently had the surgery and a lot of information. I can advise as the patient, but more important was my wife. It's harder on the caretakers in my opinion. Between now and post surgery friends and family will offer some kind of help, take them up on it. You can use the help post op. Sending positive thoughts to you and your husband.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760

    Golly, being given a time frame of "two years minimum" is a tad cruel, being told "terminal" is worse than when first hearing "ca----" the first time (The physician didn't even get the whole word out before my brain had pushed in the clutch, shifted into neutral, and my thought processes careened downhill out of control for a bit).

    BTW -- Those figures are for people who've been treated in the past, probably not with the exact treatment(s) he's going to get. Cancer treatment is always improving. Also, it totally depends on what kind of RCC your hubby has (and even then, there are variations).

    I have a red plastic spatula (AKA "flipper" or "pancake turner") that I keep handy for those times I need to scrape myself off the ceiling. Also, two freshly sharpened #2 pencils so I'll always do well on my tests. You might make up a "Survival" kit with those sorts of things in there for him and add other things as you come across them (And get an extra spatula for yourself -- you'll probably need it at some point).

    All the best -- keep us posted.

  • Jeffris1
    Jeffris1 Member Posts: 41
    JerzyGrrl said:

    Golly, being given a time frame of "two years minimum" is a tad cruel, being told "terminal" is worse than when first hearing "ca----" the first time (The physician didn't even get the whole word out before my brain had pushed in the clutch, shifted into neutral, and my thought processes careened downhill out of control for a bit).

    BTW -- Those figures are for people who've been treated in the past, probably not with the exact treatment(s) he's going to get. Cancer treatment is always improving. Also, it totally depends on what kind of RCC your hubby has (and even then, there are variations).

    I have a red plastic spatula (AKA "flipper" or "pancake turner") that I keep handy for those times I need to scrape myself off the ceiling. Also, two freshly sharpened #2 pencils so I'll always do well on my tests. You might make up a "Survival" kit with those sorts of things in there for him and add other things as you come across them (And get an extra spatula for yourself -- you'll probably need it at some point).

    All the best -- keep us posted.

    Funny JerzyGrrl, you should be a writer

    I got a kick out of the way you write, you should be a novelist.  You have great humor. And yes, I think it was cruel too. I have picked myself up and we are readying ourselves for the operation.

  • shepp
    shepp Member Posts: 11
    edited June 2018 #20
    One thing you might ask about...

    You might ask the doc about cabometyx, either in combo therapy or monotherapy; it shows particularly good results against bone mets. I'm stage 4 with multiple bone mets and cabo alone (no surgery) has kept me in pretty good shape for going on 10 months, with tumor shrinkage and necrosis and no additional metasteses. I'm off on a month-long trip to Europe next month, so don't give up.

    Best wishes.

  • hardo718
    hardo718 Member Posts: 853
    Checking in

    Welcome Jeffris1.  Sorry you find yourself here.  As I'm trying, once again, to catch up because my crazy life has been so busy, I'm angered by the fact the doc spoke of your husband being "terminal".  Aren't we all??  For God sakes, people need to think & rethink about what they're saying BEFORE they let it roll.  No doubt, this doctor has not walked a mile in your shoes.  

    Never lose hope.  Life is to be celebrated, no matter how long and this roller coaster you & your husband find yourselves on now is a startling reminder of that.  Hoping & praying you can focus on the positives, and although it can be hard to recognize, if it hadn't been for that racing heart, who knows how long it would have been before that growing beast within would have been found. 

    Prayers for both of you,

    Donna~