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New here, husband has stage 4 kidney cancer

Jeffris1
Posts: 37
Joined: May 2018

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.

JerzyGrrl's picture
JerzyGrrl
Posts: 757
Joined: Jun 2016

 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's picture
rhominator
Posts: 230
Joined: Nov 2015

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
Posts: 37
Joined: May 2018

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's picture
rhominator
Posts: 230
Joined: Nov 2015

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
Posts: 37
Joined: May 2018

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's picture
JoeyZ
Posts: 186
Joined: Mar 2018

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!!

Jeffris1
Posts: 37
Joined: May 2018

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.

lken37's picture
lken37
Posts: 12
Joined: Nov 2017

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.

Manufred's picture
Manufred
Posts: 209
Joined: May 2017

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
Posts: 37
Joined: May 2018

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.

Manufred's picture
Manufred
Posts: 209
Joined: May 2017

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

Jeffris1
Posts: 37
Joined: May 2018

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. 

 

Bellafelice
Posts: 56
Joined: Sep 2008

Dear Jeffries1-Here is so help for you. 

1. Go to the online site Smart Patients-join the kidney cancer support group. Massive amount of information about new drugs for RCC-beyond helpful in all ways.

2.Make absolutely certain to consult an RCC SPECIALIST-not just an oncologist. It makes a huge difference when you see a specialit in kidney cancer as many oncologists have very limited knowledge of RCC as it is a much rarer form of cancer. The Smart Patients members can advise you where to go in your state.

3. There are indeed many people who have lived 10 years and more  after being diagnosed. My hubby had his kidney removed 10 years ago-at age 54. Some mets discovered and treated last year-so far he is doing very well-he had SBRT (Radiation) to spinal mets and has been on Votrient and responding well. Dont even go into thinking of this as Stage IV end of life. Many people are seeing it as a treatable chronic disease.

Please fee free to write back anytime, and I am more than glad to talk at length with you.

Most sincerely-Marilyn 

Jeffris1
Posts: 37
Joined: May 2018

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's picture
APny
Posts: 1877
Joined: Mar 2014

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's picture
icemantoo
Posts: 3147
Joined: Jan 2010

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

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

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's picture
JerzyGrrl
Posts: 757
Joined: Jun 2016

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
Posts: 37
Joined: May 2018

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
Posts: 11
Joined: Aug 2017

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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~

Jeffris1
Posts: 37
Joined: May 2018

Anybody know how to get help with the cost?

JerzyGrrl's picture
JerzyGrrl
Posts: 757
Joined: Jun 2016

Your question about cost and your concern about bankruptcy remind me of a close family member who had heart surgery 25 years ago. I had promised them that I'd go down to the hospital's patient financial office to ask a list of questions while they were having surgery. I dutifully wandered around, found the right office, talked to someone, and was introduced to the department manager / VP. "How long ago was their surgery?" "Oh, they just got taken in about 30 minutes ago."

Imagine my surprise that I was escorted out of their offices, provided with a cup of coffee, shown where the cafeteria and the chapel were, then handed off to the family liaison in the surgical waiting area. "One thing at a time. Wait until we all know what sort of follow-up there'll be. For now, this is where they'll call you post-op with info." 

We didn't go bankrupt, although it wasn't RCC surgery. He may end up participating in a trial (or not) and you won't know what you need to track down until you know what you have to track down. There's assistance, there's payment plans, there's different things that are covered in different medical centers, and drug companies do sometimes discount drugs or make them available for free. 

 So anyway... No sense standing in line for an E-ticket ride yet when the park doesn't open for another month. Keep us posted - !

saintmont
Posts: 63
Joined: Feb 2013

Hi, I was told when I had my RCC I had less than 20% chance to make it 5 years its now 6 1\2, I was stage 4. There are new treatments out there and new ones coming. I have just had my last RCC removed from my neck so I am in remission. So keep going

Regards saintmont 

Manufred's picture
Manufred
Posts: 209
Joined: May 2017

When I was diagnosed with mRCC (which is by definition Stage 4 inoperable) I was also told 2 years but probably not five.  Obviously the standard response, with no consideration of your individual physiology or condition.

That was three years ago, and I have been in complete remission for the last 18 months.  Regardless of what happens next, I reckon I'll see five years, unforeseen events excluded.

No one ever knows.  Shame however that finances come into these things. You should not have to buy life.

Stay positive, you never know how things will turn out.

Jeffris1
Posts: 37
Joined: May 2018

LLooks like 25,000 so far out of pocket.

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