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Emotional time of year to begin with

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

So I am used to being strong and helping people do things when they are in a crisis. I have been protector, mechanic, care giver and counselor. Now i just Got a phone call that word is out I have cancer. All of the sudden I have people going to collect toys for my kids and someone is going to put a new alternator in my wifes car. They say my back pain / now sciatic pain is not related to the tumor in my left kidney, so I fear its mets. Monday i have another MRI to rule out tumor on nerve or in spine even though MD doubts it. All i know is i CANT put on my shoes and bend over to tie them. I am seeing Many stories of people whos back pain vaniished with kidney removal. Other Stories where it led to mets discovery . So as I freak out people are dropping off christmas decor and offering us gas cards etc. I am grateful but its all a mind Bomb. New dream house in country gonna make a small farm for the kids and then this.... Very Hallmark Movie

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Dear Flatlander,

It is very normal to be scared when we are told that we have Kidney Cancer. I sure was when I was told 9 and 1/2 years ago. And then to be told that you have to have surgery right out of the gate. Not fun. Most of us get thru this without any evidence of it speading. Back pain can be kidney cancer or a 1000 other things. I had the back pain and it stopped after the surgery. I have never heard of back pain being evidence of mets. Hopefully the follow up tests will connfirm that it has not spread and the surgery will take care of the rest.

Best wishes,

Icemantoo

garym's picture
garym
Posts: 1651
Joined: Nov 2009

flatlander,

The circumstances that bring each of us here vary greatly, but the theme, RCC, is always the same. From personal experience we understand the range of emotions you are going through and can assure you that this is normal and part of the process. You are welcome here for any reason, even if you just need a place to vent to an understanding ear. If you would be comfortable sharing a few details about your situation ie; tumor size, other possible symptoms you may have had, how it was discovered, expected type of procedure, etc. we may be able to provide some insight and experience to help ease you along the path, but its okay if you don't, we're here if you need us.

Good luck and God speed,

Gary

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Thanks for normalizing my emotional ups and downs. I had a visitor today from a brother I never met and learned my wifes car is an easy fix, likely just battery. I told wife I can handle it, she said no you can't! I guess it kind of hit me then that I could, but I'm too damn tired.to.fight her about it and go get a new one and put it in. I've been falling asleep and waking in puddles of swet, more than the.normal tired.father of three little ones.

Anyways this summer we sold our house in the city at great expense and moved to the.hills on a lake to start a life of raising more.of.our.own food.etc. when we.arrived my back hurt. As a slightly.fat firefighter who lifts fatter people in and out of ambulances daily I figured it was a disc or muscle problem. My doctor.said.probably.a.disc let.me.know if.you.want MRI.etc. I said.I'd try a.couple.weeks of anti inflamitory pills OTC. So two months of that.and Lots of rum and cokes to sleep better and it still hurt. Then my wife spotted.a.lump on my belly. She says.call MD. I did and ultrasound.proved it.was.harmless.lipoma. however as MD.ordered.test of belly too, they spotted problem on left kidney. Allergic .to cat scan.dye a MRI showed it tobe 3.7cm tumor in middle lobe.

First.guy said full nephrectomy on.Jan 12.... It was before.thanksgiving. next.guy last week said, partial and December 20 if I didn't.want.to.wait. he said.they.mostly.go.slow.and.could.probably wait. I said Yes.but.if.you r wrong and statistically.this.is.a.1% fast grower.I die.... We took the December.20 spot and.I hope to escape for.christmas eve.night.at.home.

At the same time I.am doing this a brother from my same department has a belly cancer gone mets to the.lungs. so when I came across study from med journal saying sciatica linked to rcc find on occasion I get worried. Thankfully I also found many people who's back issued went away with kidney

barbjc
Posts: 2
Joined: Jan 2012

HI, Flatlander. My HUsbnd was told her had RCC back in july of 2010. he also hd his left kidney taken out, Hoever it alsomest to his lung,liver,and spleen. The day before thanksgiving 2010 the dr gave him only 6-12 to live,he was 42 yrs old.we had goneto an oconolgilsit near us and said there was nothing he could do. So we had gotten a referall for a dr. Sosman in Nashville, Tn he said he doesn't go by the toe tag like other DRs. He told my HUdsband about this BIO treatment that has been around now for at least 7 yrs called Interleukin-2 . you will go trhough different tests to see if your body can handle the treatment. you would be in hosp for 5 days and out for 9 days back in for 5 more, that cyle goes 3 times. each day you will get a "bag" of meds thru iv, you maybe get sick out of boh ends, loss of appiete and maybe a skin rash and you may peel like a sun burn. it is a long shot, but my husnbands cancer went away. although he now has a new groeth on his lyph node on his lung and will be getting a pet scan. but it is past the year that the other dr said and hsband is doing well evefn with this new growth. I wish you lcuk in future and will pray for you and your family.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Oops

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Flatlander,

One of the facts that kept me from being more optomistic that you in fact did not have mets is you gave us no indication as to the size of your tumor. At 3.7 cm it is considered very small and the 5 and 10 year survival rates quoted are 90% or better, but more realistically close to 100%. There are 2 chances a tumor of that size has mets. Slim and none. Mine was 2.6cm on the CT and 4.2 cm after the surgery when they biopsied it. The size of a tumor on a ct scan is not exact as it is a 3 dimensional view. Get back to us after the surgery. It will not be fun, but it beats the alternative.

Best wishes,

Icemantoo

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

...besides, even if the doc says"partial" nephrectomy, he won't hesitate to remove the whole thing if he needs to. I like the early surgical date option.

love4life
Posts: 33
Joined: May 2010

Just out of curiosity - are you have a laproscopic surgery done to remove the partial kidney? My mom was diagnosed with kidney cancer 2 years ago and they did a radical nephrectomy and were able to do it laproscopically. If you are going with lap surgery you should be able to be home for Christmas Eve I would think. I've been through kidney cancer with my mom, testicular cancer with my husband, and a quadrupal bypass with my dad. I understand being nervous but believe me when I say if you are comfortable with your doctor it makes a huge difference. One last comment, you said you are strong and use to helping not being given help. Let those that can offer help to you help. You will be able to pay it forward again some day and it will give the people around you the chance to show you how much they care and appreciate you.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Very happy phone call from my surgeon that said what many had told me. My walking bent over with pain in my back, butt and leg all on the kidney cancer side was a whole other problem. One that can't kill me. I have a couple bulged discs pushing on a nerve. If not for that I may not have found tumor till it was way further along. CAN I GET AN AMEN Y'All!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

flatlander,

Congrats on the news about your back, I had suspicious spots on my spine at diagnosis that proved to be stenosis so I know how you feel.

Let the healing begin,

Gary

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

Amen!

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

MD wants to do full cut and old school partial as tumor is in middle of kidney. He says that way he can pack me full of ice and take his time. Other MD wanted full removal, laproscopicaly but couldn't do it soon enough for us. This one said Yes, it will mean more healing time, but it is worth trying to save.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

flatlander,

I just wanted to wish you well before your big day and add a little reassurance that you will be fine. The next couple weeks will be a bit rough, its the small price we pay for the cure. Let those you love and support carry you for a short time, you will be the strong one again very soon. You are in my thoughts and prayers.

God speed,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

More good luck wishes for tomorrow, this time from Europe! I had 8cm. tumour and right kidney out 2 weeks ago today, with a switch from lap. to open, and am now feeling pretty good.

You're right about being lucky. Similarly for me - saw my doc. for first time since op. and he said "We were very lucky." Because I was 69 and never unwell he had originally guessed the haematuria was from an infection but the cytology turned out clear. As he's just said, if a slight infection had been found we might have just treated that and been none the wiser about the tumour which would have progressed undetected for who knows how long. As it is it was found by good luck and with a bit more luck the future is not too bleak.

As garym has said, let your loved ones take care of you for a bit and in no time at all you will be the strong one again and enjoying your new dream home in the country.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Flatlander, we're all hoping that the op. went to plan and to hear some good news from you. Enjoy your Christmas, and I hope you're able to spend it in the midst of your family.

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Hi buddy-
I just joined the club today and can relate to everything you've said in your posts. I too have kids, ages 8 and 11. I have a CT on my lungs on teh 27th and am very nervous. i really want everything to be contained in the kidney. I have an open surgery scheduled on 1/9. Very interested to see how things when with you as I'll be following in your shoes. I'm praying that all is good and that you are able to get home by the 25th.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It would be good to hear how things went. I hope 2012 is a happier year for the Flatlander Family. Best wishes,

T.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Sm4pack mine was about your size too. .3.7cm my lung scan and back scan were clear. You and I will be here for our Kids. No fear. Okay maybe a little fear but its a waste of time. God Bless

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

How lucky your Wife is a nurse, how lucky you are a fighter, how lucky you are to have such brothers. I bet everyone is as proud of you as you are of them!!

Now you can really enjoy that dream home in the country and treasure it all the more. Let us know if the back pains disappear now. With a little more luck you're through your ordeal and into clear water.

Can't wait to tell your story to a firefighter friend of mine (in Scotland) - he'll be proud of you too but I don't think he'll be altogether surprised about your brothers since I think you're the same breed of men everywhere.

Have a great 2012.

rae_rae's picture
rae_rae
Posts: 279
Joined: Oct 2010

You are indeed a lucky and very blessed man. Thanks for sharing your story. Happy to hear you are through the surgery and doing well.
Rae

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I've not seen pictures of wounds on this site before, which makes it all the more interesting. I'm guessing that just as no two cases of RCC are the same, so incisions will vary greatly from patient to patient. Can other contributors say whether their incisions resemble flatlander's? Obviously lap. wounds are pretty different from this, but do they occur in similar places on the body or do they vary widely from patient to patient? I've got both (due to a switch from lap. to open, during my op.) and the 3 little lap. incisions are a long way apart - one close beside my navel, one just at the top of my hip bone and the third about midway between the two but a few inches lower down. My open incision looks very much like flatlander's but perhaps a little further round to the front and a little less far round my back, but more horizontal. What really strikes me is that his lesion was mid-lobe and mine at the bottom of the kidney but my incision looks to be higher on my torso than his does. I suppose the fact is we all have slightly different internal layouts and part of the skill of the surgeon is to find the best route to navigate to where (S)he needs to go. (This reminds me - I should have included the fair sex in my comment above about the character of firefighters - my apologies for that oversight.)

flatlander, love4life had it right when she said:

"it will give the people around you the chance to show you how much they care and appreciate you." Well they sure took the chance you gave them and you must be a pretty special guy that your brothers and sisters turned out for you in the way they did.

rae_rae's picture
rae_rae
Posts: 279
Joined: Oct 2010

TW
My incision is in front, running up my left side up under my sternum sort of like a hook. Maybe I will post a picture later. My tumor was on the top wedged between spleen and pancreas which made it difficult to remove (hence the nicked spleen and pancreas), and I assume the incision location is different than most.
Rae

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

Thank you for starting this thread Flatlander (and GaryM for your encouragement!) Sm4Pack - good luck with your surgery on Jan 9th. I just recently joined the club too and have a 3cm mass on lower right kidney and scheduled for open partial nephrectomy just after you on January 12th. I was offered the procedure mid-December but the surgeon suggested I enjoy the holidays and shcedule it for early January and I am very thankful I did. My son is 3 now and this was his most exciting Christmas yet - couldn't imagine missing that. I will be thinking of you and your kids on January 9th and hoping all goes well for both of us!

rae_rae's picture
rae_rae
Posts: 279
Joined: Oct 2010

Welcome lawmanmike,

Though we are sorry for the reason you are joining our group, you will find a lot of support, encouragement, information and humor at this site.

Rae

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Back in ER waiting 45 ;minutes after surgeon said come back in.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Back in ER waiting 45 ;minutes after surgeon said come back in.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Do let us know the outcome as soon as you have a spare moment.

You've got a great team to help you (although I was a bit concerned about how you came to be released as you were - it sounds as though a mistake was made and I imagine some investigation is going on about that).

You got off your pain meds very fast. You're a very physical, strong guy and if you want to stay that way please don't push yourself in the next few weeks of recovery - it's still very early. You can do no better than read and heed the expert advice foxhd (and garym) give us all on this subject.

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

Thanks Texas_wedge! I'm not entirely sure why the side entry instead of abdomen but the surgeon did clearly say we want to avoid going through the abdomen. There are several reasons he recommended an open procedure vs. laparoscopic... I think opinions do differ on this from what I've read, but the open procedure is still the "Gold" standard for a partial nephrectomy. My doctor said some docs might try a laparoscopic approach but there are greater risks associated with it such as bleeding from the kidney. With an open procedure he said they can put the kidney on ice during the procedure which is beneficial (though I don't really know why) and will allow him the best access to look at the kidney and make sure he gets all of the mass out with good margins and will allow him to visually inspect the area around the mass. The location of my tumor apparently is good (lower part of kidney) so they can cut a pie-shape chunk of the kidney, remove the entire mass and close it up without coming near the adrenal gland. We did discuss all the option available to me and he did say this is the best procedure for me and I trust him so that is what I will do. It will carry a longer recovery period but he thinks it is the best choice for me given my age (41) with fewer risks of complication. I hope it is the right decision!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Brother law man Mike, I'm sure you've made the right decision. You've been given a cogent and persuasive explanation of why it's to be open (and it's probably a matter of ease of access and minimal tissue damage that indicates the side access - if you find out I'd be glad to know). Beyond that, you've decided to trust your man and that's crucial in giving you the positive attitude that so greatly helps in every way. I was not wanting to call into question the advice you had received, but was just being academically curious.

My primary objective was to further buttress your positive attitude. In that cause, may i give you a cheering comparison?

Like you, my lesion was low on the right kidney. My consultant is one of the world's top laparoscopic surgeons and he had hoped to carry out my op. laparoscopically but knew it would be tricky. I was confident that I was in the best of hands and also had the backup of being in the hospital that pioneered lap. surgery in the UK and is leading the way in robotic surgery in the whole of Europe. So that was as good as could be hoped for and my Wife and I acknowledged that there might be a need to switch to open surgery if the practicability of completing laparoscopically proved to be insuperably difficult. In the event, they had to switch, with copious bleeding, and the op. took around four hours longer than had been anticipated, involving a fourth incision about ten inches long.

On 5th Dec. I had a radical nephrectomy, you're having partial. My adrenal gland was left untouched, as were all my lymph nodes but you are going to have those benefits plus having both kidneys still in play. Your tumour is 3cm. so its cubic size is 3 x 3 x 3 = 27 cc. Mine was 8 x 8 x 8 = 512 cc i.e. 19 times the size of yours. You're 41, I'm 69. I had the benefit of being very fit and strong and healthy (apart from the little RCC problem) and maybe you're not a physical wreck. Thus, overall, compared with me you've got everything going for you!

So how's it going for me? I'm just after 4 weeks post-op and feeling fine. I'm off all medications, eating well, look much as I did, except for the scars (fading fast and giving no trouble) and a slight residual swelling. I'm walking a fair amount and busting to get back to my golf, rowing and weightlifting and hope eventually to get back into shape to run the London Marathon again. I'm giving a lot of (free) help to a friend with complex easement, wayleave and prescription issues in a squabble with the adjacent landowner (his Brother), helping another golfing buddy and his Wife and their neighbours in a long-running planning permission battle. I'm trying to finish a comprehensive legal analysis of a seminal golf damages case (in Scotland) decided in November but am having to spend many hours each day on issues with my Mother-in-law and a cousin of my Wife's, both of whom are much more seriously ill and close to death than most of us here.

Garym has good grounds for encouraging you to believe that you can be up and running (metaphorically!) in less than three months. I reckon my cognitive functioning was back to near normal by a couple of weeks post-op, at most. As long as you don't overdo it physically in the next few weeks, you should have no real work problems. (I must admit that's easy for me to say because I'm no longer practising law, being based at home and now in computer software.) Gary was also shrewd in observing that "court-room drama will never be as important as it used to be."

I reckon you've got it made and you'll know that all here will be pulling for you too.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Just in case anyone is wondering, if you assume the above tumors to be spherical instead of cubic in shape, the calculation is a bit more difficult but the result is the same, roughly 19 times larger by volume. I found this to be interesting, having never thought about it this way before. Leave it barristers to fretter out the details.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Gary - I must confess I should have expressed myself better - I should have acknowledged that for the sake of simplicity I had cancelled out pi/6. I was simplifying it down to the way of comparing the volumes of 2 spheres. The volumes I gave for the tumours were actually the volumes for cubes with sides of the dimension of the diameters of the tumours i was comparing. So the actual volumes are roughly half what I said - when you multiply them by pi/2 - about 14 and 268. As you rightly stated, the comparison was correct at roughly 19 times.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

T,

It was just the engineer in me that wondered if the relationship changed because the volumes were so different and I was a bit surprised that it did not. BTW, mine was 5.0 so yours was roughly 4 times larger, quite a change in perspective. Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Gary - wasn't looking for a 'Mine's bigger than yours' competition but your arithmetic is, indded correct! ;-)

garym's picture
garym
Posts: 1651
Joined: Nov 2009

In this case I'm happy to state that yours was bigger than mine, LOL

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

Thanks Texas_Wedge - glad you are doing well too! By the end of the three-month recovery I will probably be looking forward to some court room drama!

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

It is definitely helpful and encouraging to hear from people who have gone through the same thing!

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

The snow is coming down, the visiting nurse just left.
After measuring the urine coming out of my chest.

Soon we'll pick up the meat from the pigs we grew.
Then drop the Bacon and ham with a smoke house crew.

They lost their daughter a firefighter like me.
As she died of her cancer I CANT complain about pee

Now the world is on loan to me and my bag of pee
So when the big C has got you down, look at the sky and try not to frown

How life is decided we will never know
Until its over enjoy the show.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Keep 'em up, flatlander - the chin and the poetry. The last couple of lines make another great mantra, capturing the spirit of these threads.

lawmanmike's picture
lawmanmike
Posts: 29
Joined: Jan 2012

Glad to see your spirits up and you're doing better! Hang in there!

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Went to visit MD couple days ago and he couldnt take my foley out yet. Been draining into two bags and a foley since Dec 20. I have "rare" complications. Yesterday the top Drain on my side stopped and the lower Drain slowed some. Curious if anyone else had trouble with Kidney healing post partial nephrectomy?

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Got a fever yesterday and called my MD. He said come to ED ASAP. They said I could stay overnight or go home with Cipro. 101 fever, malaise and kidney pain. Ultrasound, IV, labs and Cipro and Im back home today. I think fever broke about an hour ago.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Are there ever any quiet times in your life? It seems to be all action all the time. It's a good thing you're a big strong guy with lots of loving family and friends to look out for you. Hope you're back on an even keel soon and able to thoroughly enjoy all your life has on offer for you.

Sm4pack's picture
Sm4pack
Posts: 40
Joined: Dec 2011

Flatlander
I've been following your story. I appreciate your positive attitude. Keep on your doctors to fix this! You deserve it! Sending prayers your way.

Scott

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Fever broke last night and I slept and sweat heavily most of the night. Today my head is clear and the fever is gone. The urine in my side drain is still pineapple juice, so full of bacteria but my foley is clear. So hopefully in a couple days both will be clear again and I can get these bags off of me. :-) Trust me with 3 kids and a young wife Ive got enough drama without complications from surgery. Im ready to get back to the firehouse where its someone else who has the problems...lol

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

You have such a great attitude toward all this.

Keep it up. I wish you success on your journey.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

Perspective is huge at this poiint. I just spent three days in hospital with infection and a new drain stuck into me. This morning puss coming out of another spot on scar. Doc says probably old, means meds are working, but must go to check at 4p. So I can say boohoo I just Got home last night. Or. Rejoice for i saw my Kids and sister and wwife and this morning just incase something like this happened a local brother firefighter i dont even know plowed the snow from my driveway. As I have learned from other survivors its a long jog so you must pace yourself.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

flatlander,

Man, you sure have had a much rougher go of it than most of us, but you have kept a death grip on a positive attitude through it all. I suspect that serves you well as a firefighter, people in your service area don't know how lucky they are.

Inspiring,

Gary

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

Way to keep the spirit Flatlander!! Believe me, we're proud of you and behind you all the way. You're a tough son of a gun. After your body finishes with all of this, everything else will be boring. Sort of like when astronauts come back from the moon. Your family is drawing from your strength.

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