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Dark Places

sandy23
Posts: 143
Joined: Jan 2017

I am sorry to be such a burden with my constant worries and fears but I don't know where else to turn.  My mind keeps going to those dark places.

My husband's first appointment with the surgeon will be on Thursday.  I am so terrified that he is going to find something that the urologist missed.  Also, someone just said to me that it is a very real possiblilty that he won't be around to spend another Christmas with us.  That really has sent me over the edge.

I'm not sure how to fill out the About section but his story is that they found a 6cm mass on his right kidney.  He has had chest x-rays, CT scans with and without contrast and blood and urine tests.  The urologist says there doesn't appear to be any signs of it spreading.

Bay Area Guy's picture
Bay Area Guy
Posts: 514
Joined: Jun 2016

The person who said he may not spend another Christmas with you is probably not very conversant with treatments for cancer and kidney cancer specifically.  There are plenty of examples of people on this board that have had masses larger than 6cm and are leading normal lives.  Is there a chance the surgeon will find something the urologist missed?  Of course there's a chance.  But just remember that before the urologist read the CT scan (or, in some cases an ultrasound or MRI) a licensed and trained radiologist read it as well.  That would mean two different trained professionals missed something.  While it can happen, I don't think it's likely.

Far more likely is that the surgery will take care of your husband's problem.  He'll have monitoring scans every six to twelve months for a while, but there's nothing in what you've written that would indicate that he's at serious risk for anything more.

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Sandy,

Reread the responses to your2 previous posts  At this point there is no reason that the outcome will not be good.

 

Icemantoo

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

You are going to drive yourself crazy if you listen to people that don't know and continue to read things on the internet. Instead, listen to the people that do know, your husband's physicians and those of us here that have some experience with this. That helped me a lot when I realized that was the best approach. Also, as a professor in medical imaging I can tell you that the chances of something being missed on multiple scans is almost nonexistent. Now, could there be cells there that it isn't picking up? Sure, but that's why there will be a follow up protocol with scans. However, for now, remember that 6cm is still fairly small in the world of RCC and that the chances of surgery being the only treatment needed are still quite high. 

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

Sandy, do you have calm sensible people in your life (or even just one person)? Definitely hang out with them and here for reasonable info as well as the folks suggested by our responses. I'm not sure what the clueless-about-RCC person thought to accomplish by telling you nonsense that can only reasonably be expected to freak you out. Folks like that - you don't need to hang out with.  

Be good to yourself.  Is there any chance that you can get a massage? Soak in a hot tub / jacuzzi? Go for a brisk walk? Sit outside and stare at birds or clouds? Sing, play, or listen to calm music? Take a nap? Have a good meal? Hug a pet or your hubby? Whatever is healthy and calming for you would be a great way to look after YOU. 

Truly, your husband's treatment with surgery is most likely to be the treatment that he'll need. 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

My eldest child, a son, was a breach birth and was born two weeks late, after 22 hours labour, by emergency ceasarean section. Mum and child healthy. They still are touch wood. My wife, at 5' 1.5" is of slight build. When I got home, I made all the phone calls that needed to be made. A person I phoned said "A few years back, they'd both be dead by now." I suppose they were right, but I thought then, 'What an evil thing to say!'

I'm sorry, I feel the same about your someone: What an evil ignorant thing to say. I am angry. It doesnt take long to think before you speak!

Quite possibly you're in the darkest period of this experience. You've got nothing but natural fears, worries and imaginings and this someone....

Look, you could walk out the door or be hit by a bus or (lacking public transport) nibbled to death by a Caribou or....

There was a guy who lost control of his car on a US highway. He span out of control and the car smashed into a telephone pole. Steam everywhere, the car looked like a concertina wrapped around the post. Eventually the guy hears a police siren and climbs out of his wreck of a car. This is a true story, so I imagine the guy picking up his fedora and lighting a cigarette as he approached the cop, doubtless scratching his head and surveying the damage.

"Are you OK buddy?" he says

"I'm great." the guy replies, "Not a bruise! Not a scratch! I dont believe it! It's a mira..." At which point the weakened pole fell on his head and killed him stone dead.

True story. Anything can happen, but its unlikely.

You'll see the surgeon. Its a serious condition, but 6cm is not so big. 1/2 the size of mine. S/He will tell you many things, probably too many. If you dont understand say so. S/he will have seen very many in your position. They will want to help.

Why dont you and hubby write down a list of questions to ask the surgeon? (Probably the best idea I've had in years!) Why not start with what the evil idiot told you? And then ask why I think they are an evil idiot.

 I suggest you write down everthing you want to know. Then cut it back to less than 20. Ask anything. They will understand that you're scared, no human wouldnt be.

Good luck. Its not easy emotionally and I always felt it was even harder for the spouse. Its just another day. Its just another thing. You can do it :-|

And then the day after you can worry about something else :-)

Let us know how you get on.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I agree with everyone else here....stay away from thoughtless people who say the first thing that comes to mind, rather than being supportive. And now take a deep breath. Try not to worry so much. I know you are new in to this, we have been there. And the best advice we can give you is to not let worry overtake you.

Cancer takes enough from you. Don't let it take away your sanity as well. Hang in there!

Hugs

Jojo

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

You can say anything here.

I also have a mass on my right kidney which is being removed on Monday 6th of February.

I am expecting everything to go well and eventually to die of old age and NOT cancer.

But of course I have background uncertainty and anxiety.  Maybe I always will.

I haven't descended into dark places.  I don't know why not.  Maybe later that will happen.

This kind of experience sends us on an internal journey, probably different for everyone.

I am not very far along.  Others here have travelled long distances.

I wish I could say what I want to say...

You will be ok.

Steve.

 

sandy23
Posts: 143
Joined: Jan 2017

Thank you for all of your support.  It really does mean the world.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I notice that you are writing to people of the SURVIVORS group. I would comment that most of us would still go back and trade places with your husband. Scarey? yes. Get over it and take charge. Without exception get a surgeon associated with a renal cancer facility. Not your local acute care hospital. This is the biggest mistake either of you can make in your life. Nearly all of us survivors have switched our doctors and facilities. Few uroligists will refer to another facility even if indicated. When they refer, it is after surgery when problems persist. So you will be going some place else anyway. Make sure you do that first. A few more weeks before surgery isn't that important. It probably took a couple years for his tumor to grow to it's current size.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I was sent from my PCP to a urologist who looked at my scans and said "This is too big a job for me." and referred me to a teaching hospital in Baltimore. I've always been grateful for that mans professional self-awareness.

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

If you worry about when you will die, you will simply fail to live.  That was the biggest lesson I learned.  At this point, you have a timeline of how long until surgery.  If it is a few weeks, this is a great time to take a vacation.

After surgery, he will be cancer free (most probably), but will be in pain and slowed for a while.  

In the majority of cases, though, by six weeks out he will be at normal activitity, and at months out, he will be good as new except for a scar.

This is a bump, not a cliff.

What I will recommend for you is to get help with anxiety.  Go to your doctor -- there are meds that can help.  We have all been there with the anxiety.

jason.2835
Posts: 337
Joined: Nov 2014

Whoever made the Christmas remark.. was it Trump's press secretary Sean Spicer?  That's an alternative fact.  In fact, it's not even a fact at all.  I would punch them in the face if they told my wife that.  Anyhoo... Kidney cancer IS dangerous once it has spread... but there are MANY example on this board of people who have been around more years, sometimes DECADES since they were diagnosed with Stage IV kidney cancer.  But thats the worst case scenario.  In many cases, the tumor is removed, he is monitored every 6 months or a year, and while you never really "100% mentally recover" you do move on and live your life.  The chances of recurrence are generally small with tumors less than 7 cm that are confined to the kidney.  Rather than punching them in face, I would arm yourself with facts, confront that person and tell them that making that kind of statement to someone who is themselves or watching a family member go through treatment is extremely insensitive and, frankly, ignorant.

- Jay.   

mrou50
Posts: 389
Joined: Mar 2013

I will not say don't worry because that is like saying I hope it never rains again and expecting it to never rain.  It isn't going to happen, it will rain again and you will continue to worry.  Yes your doctor may find something else in your husband surgery mine did, what they thought was tumor turned out to be two, but they took care of it and got me back on my feet. As for an acquantice who claims your husband may not be there at Christmas, what a crock, unless your husband chokes on a turky leg at Thanksgiving you can expect him to be by your side at Christmas.  I have been living with this disease for several years, and mine is stage IV metastatic, try not to worry about the what might happen and focus on the good things that will be happening, and as for people making comments they know nothing about call them out on it, politely, but still call them out inform them of the reality of cancer that is not the instant death sentence it was 50 years ago.  Stay positive and try to relax and enjoy every day with your husband and family.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Whoever said they know the future of your husband (or anyone else for that matter), is seriously got an inflated ego problem. They don't know. Nobody knows.

My first tumor was bigger than your husband's and that was 4 1/2 years ago. 2 years ago they found another and took it out. Currently I have no known disease and I'm pretty darn healthy.

Worrying doesn't do you or anybody any good. I know it's hard not to do it, but you've got to try and let it go. Talk to yourself. Find healthy ways to deal with your anxieties. Find a good friend that listens without giving advice.

Do take action. Find the best specialists you can find. The best are people plugged into the RCC research community. You want a surgeon that is preferably a urologic oncologist. This is a urologist that has extra training in kidney masses and surgery for kidney masses. You want an RCC oncologist for followups and to make sure there's no other disease. This disease is not so common, and most regularly urologists and oncologists don't know it that well.

For example, the RCC oncologists and surgeons I've beeing seeing see 10-20 patients a week with RCC, whereas a regular oncologist might see that many in a year or even only 1-2 a year depending on where they are. A regular urologist does all kinds of urology related surgeries, whereas a urologic oncologist is a specialist on evaluating and removing masses, in particular kidney tumors using laparascopic/robotic or partical nephrectomies (removing only the damaged part of the kidney), whereas most regular urologists know how to remove a kidney but they'll always remove the whole kidney usually by means of an open surgery.

If you need help finding better specialists in your area, post here and you'll get help.

If you need help with anxiety, let us know. We can make suggestions in this area too.

Things are probably going to go better than you expect. So take a deep breath, take a walk, do something constructive to take your mind off this.

Best wishes,

Todd

Deanie0916
Posts: 415
Joined: Nov 2016

Hi you are in my prayers, I pray you are granted some peace and hope. Please don't listen to that person...listen to your doctors and the people here who have been through this! I know it is so hard not to worry. I will add my story, I had my left kidney removed on August 30th last year with a huge tumor about 20 cm and I am doing well. Hope you are encouraged...sending love and hugs to you.

APny's picture
APny
Posts: 1998
Joined: Mar 2014

That was a terrible thing to say and I'm with Footstomper. A pole can fall on any one of us before next Christmas, including to the thoughtless fool who made that comment to you. None of us come with a guranatee or an expiration date. Wishing you and your husband the very best. The anticipation is the worst part. Once he's over the surgery you'll both feel a lot more positive. Keeping you in my thoughts xo

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