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First follow-up results

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Had my first follow-up ct scan since my rcc kidney surgery last June.

Haven't spoken to the dr yet, but I got the radiologist's report. No sign of any more rcc. Now have a "new normal" for my kidney, which we'll use as baseline from now on. Do have a kidney stone in left kidney, so that will be something to look forward to.

Lesion on liver that we've been watching for several years, suddenly doubled in size over the past 6 months: 4 mm to 9 mm. So, that will be my next priority. Guess I better go set up shop in the liver cancer forum.

This should be fun.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I'm very glad your kidney CT looks good. I'm going to keep hoping that whatever on your liver is just something pesky and stupid. If it IS something more, your terrific attitude will serve you well!

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

Jamie,

I echo Minnesota Girl's sentiments and you've already been monitoring your liver lesion so you're well geared up to take whatever action is indicated. The liver cancer forum is a gloomier place than this so if you do join their numbers your intelligent analysis and positive attitude will be well received there and will give that community a lift for which I'm sure many will be grateful. Best wishes on all fronts .

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

The liver forum is very doom and gloom. And most of the members are care-givers, not patients. That changes the environment a lot.

Urologist did call to confirm that kidney cancer is gone. Yay!

Primary care doc called to say I now need an MRI of the liver, and there's still a chance it could be nothing -- cyst or something similar.

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

We'll pray it's benign or readily treatable. If so, then now that you're clear of kidney cancer you could soon be into clear water.

Keep us posted and don't quit this forum - your contributions are too valuable.

foxhd's picture
foxhd
Posts: 2022
Joined: Oct 2011

Hey Jamie, you've been through alot. Don't let this minor change be more than that. Lets hope it is a cyst. Been told I have one too. Nothing gonna break our stride. If this forum lacks anything, it is that we can't reach out and hold someones hand physically. However, mine is here.
fox. Fly.

rae_rae's picture
rae_rae
Posts: 270
Joined: Oct 2010

Praying that its just a fur ball ;)
Thinking about you and Merry Christmas

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

... I think I will just continue to hang out here. Still waiting for MRI scheduler to call.

hey, rae_rae, I forgot about your fur ball! : ) yes! I hope mine's a fur ball, too! It would stand to reason: I've always had a very close relationship with my cat.

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

Jamie,

I am glad that you decided to continue to hang out here, your posts are always among the most thoughtful and knowledgeable on the board. Ordinarily I wouldn't wish a fur ball on my worst enemy, but I too will pray for one for you.

Merry Christmas,

Gary

foxhd's picture
foxhd
Posts: 2022
Joined: Oct 2011

HA,HA, HA, that is funny.

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Scheduler called: MRI will be Wednesday. I'll keep you posted. Here's hoping it looks like orange and white tabby cat fur. Or black and white, she sheds more than he does. : )

Aaaack! Aaaack! (That's me coughing it up.)

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

We've got a bunch of very well-informed and bright people on this thread already. So, can anyone point me to any material indicating which scans, screening etc are best for which purposes? Sonograms, MRI, CT are all useful but what are their particular strengths?

I was so intrigued by the fur ball banter that I Googled "rae_rae fur ball" and immediately got to the "Recurrence" thread started by Rae back in July. In that discussion, Jamie mentioned a support site in the UK - Jamie could you be so kind as to post the url?

Finally, something struck me that I'd like to explore. RCC is pretty much of a mystery in aetiological terms. Does anyone know of any authoritative (or even any speculative) epidemiology work in this field? What prompted this thought is my having noticed the large number of participants in KC threads who live in Michigan. Could those who do please confirm whether they've spent most of their recent years in that part of the world. Cancer is all too common but only about 3% are KC cases. I wonder if cancers are commoner in Michigan and KC in particular. This is probably idle and pointless rumination but who knows - since it's so mysterious any straws in the wind could prove informative.

rae_rae's picture
rae_rae
Posts: 270
Joined: Oct 2010

Wishing you multi-colored furball result for your MRI! watch where you cough that thing up.
Texas-wedge: I am, as you probably already gathered, in Michigan. My father also had kidney cancer. We were both born and raised here. I work at a golf resort...maybe we should also query golfers?

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

You're in Michigan, Rae and on that thread ("Recurrence") so were aedney and lkhof9, likewise iceman, garym (and I've only been looking about me here since end of last month).

I can take a leg pull though - golf! But, wait a minute, there's garym, foxhd, you work at a golf resort, I live on a golf resort ......

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

“Our understanding of how kidney cancer develops had already markedly improved through identification of three new mutated cancer genes, each of which makes a small contribution to the disease” said Professor Mike Stratton, Director of the Sanger Institute and co-Head of the Cancer Genome Project. “Now, our discovery of PBRM1 mutations in one in three kidney cancers is a major advance. We think we may have an almost complete understanding of the set of abnormal genes that drive this cancer and our understanding of the disease has been transformed by the realisation that most of these genes are involved in providing the structure that encases DNA in the cell and that regulates its function. This insight will provide us with many new therapeutic directions for this cancer.”

This is from a report published in the world's top science journal, Nature, in Jan. 2011 of a study carried out by researchers from the Wellcome Trust Sanger Institute (UK), the National Cancer Centre of Singapore, and Van Andel Research Institute (VARI) of Grand Rapids, Michigan.

Michigan again! I notice that in March "I, Rick Snyder, Governor of Michigan, do hereby proclaim March 2011 as Kidney Cancer Awareness Month and March 10, 2011 as World Kidney Day in Michigan." I wonder how many Michiganders were aware of that!

foxhd's picture
foxhd
Posts: 2022
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My back yard is a golf course....If any one needs golf balls , let me know.

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

If you are familiar with my story then you know that seven people close to me died from RCC prior to my own dx. None of these people were blood relatives, one was my father in-law whom I played golf with every Saturday for over 20 years. I have wondered about, but not researched, any connection to RCC especially in West Michigan where I have spent my whole life. I am aware of the study in Grand Rapids (20 miles north of me), but again have not paid it much attention. Now I'm wondering if I can't see the forest for the trees, I don't believe in coincidence. I'm also wondering about the chemicals used on golf courses, especially from forty years ago or so. I should have been more careful about licking my balls while golfing, no pun intended.

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

Since his backyard is a golf course, we need to know if a fox licks his balls. Then there's Mike - got a new golf bag for Christmas - he's a golfer (but maybe not a Michigander?). Then there's Rae who works on a golf course but your explanation (of licking your balls) wouldn't apply to her - she'd be too young to be in that ancient golfing practice!

I do wonder about Michigan though - petrochemicals etc. - do you think there might be anything in the idea?

braswelm's picture
braswelm
Posts: 41
Joined: Oct 2011

Hey Texas_wedge, I live in Alabama, much warmer than Michigan, but have been playing for almost 25 years. Probably no connection. And I never lick my balls.
My GP doc told me he used to rarely see kidney cancer, but I was his 5th patient with it this year. I wonder about OTC drugs.....
By the way, where in the UK do you live? My maternal GGGG Grandfather came over from Ireland, but the ancestral home seems to be Stirling, Scotland. My mother's maiden name was Sterling (the American spelling)
It's on my bucket list to visit Stirling Castle and go over to St. Andrews too.
Mike

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

Hi Mike. Alabama would be a bit warm for me! I'm a Londoner (last few generations were all London but my ancestry is entirely Welsh and Irish if names are anything to go by). We live in N.E. Scotland. Since you're a golfer, all I need say is that we're just north of Carnoustie (where I usually play three times a week) and St. Andrews and not too far away from Gleneagles and Loch Lomond, but a little south of where Donald Trump is about to open "the best golf course in the world". We're also an hour and a half's drive from Stirling Castle which is very dramatically situated and very much worth seeing.

The putative RCC connection with golf makes a nice joke to keep the tone of the thread light and fun but I really do wonder if Michigan might have an over-representation of KC cases. I'm intrigued by your GP's remark and also your comment about over the counter meds. I suspect the apparent increase in incidence is simply an artefact of better detection - probably due to all the new technology available (scans, etc). That said, you may have a good point about the availability of painkillers over the counter. Ibuprofen seems to be bad in respect of kidney disease (other than our situation of kidney cancer) since it is not a good drug for anyone with high blood pressure.

T.

ripper's picture
ripper
Posts: 28
Joined: Oct 2011

The funny thing with reading all of the golfing/rcc theory is that - Here is my story

I was on the 18th hole early May 2011 (surgery June 2011), up by 1 (Boss vs. a couple of young "Up and Commer's) anyway, I swing from my ass and launch my drive into the darn driving range and behind a tree. Trying to save face, I again do the Happy Gilmore and as luck would have it drop it about 5 ft from the pin. However, the next 3 weeks, my lower left side of my back was absolutelty killing. So, after nearly Overdosing on Tylenol and trying supplement it with vodka to ease my sleeping, I wound up in the ER for my CT.

-Doc "Good news, Bladder, liver, intestines, stomach, gall bladder, RIGHT kidney are all fine, however there is a mass on your left kidney that would explain the pain that you have in your back.....)

-Me "I knew that I shouldn't have swung so hard being 1 up going into 18"

True Story!

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

Thanks ripper. Before I forward it to a couple of my golfing buddies I felt I ought to return the smile with another bit of humour:

Wife’s Diary:

Tonight, I thought my husband was acting weird. We had made plans to meet at a nice restaurant for dinner. I was shopping with my friends all day long, so I thought he was upset at the fact that I was a bit late, but he made no comment on it. Conversation wasn't flowing, so I suggested that we go somewhere quiet so we could talk. He agreed, but he didn't say much.

I asked him what was wrong; He said, 'Nothing.' I asked him if it was my fault that he was upset He said he wasn't upset, that it had nothing to do with me, and not to worry about it. On the way home, I told him that I loved him. He smiled slightly, and kept driving.

I can't explain his behavior I don't know why he didn't say, 'I love you, too.' When we got home, I felt as if I had lost him completely, as if he wanted nothing to do with me anymore. He just sat there quietly, and watched TV. He continued to seem distant and absent. Finally, with silence all around us, I decided to go to bed. About 15 minutes later, he came to bed. But I still felt that he was distracted, and his thoughts were somewhere else. He fell asleep; I cried. I don't know what to do. I'm almost sure that his thoughts are with someone else. My life is a disaster.

Husband's Diary:

A four putt; who the hell four putts ?

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

Thanks ripper. Before I forward it to a couple of my golfing buddies I felt I ought to return the smile with another bit of humour:

Wife’s Diary:

Tonight, I thought my husband was acting weird. We had made plans to meet at a nice restaurant for dinner. I was shopping with my friends all day long, so I thought he was upset at the fact that I was a bit late, but he made no comment on it. Conversation wasn't flowing, so I suggested that we go somewhere quiet so we could talk. He agreed, but he didn't say much.

I asked him what was wrong; He said, 'Nothing.' I asked him if it was my fault that he was upset He said he wasn't upset, that it had nothing to do with me, and not to worry about it. On the way home, I told him that I loved him. He smiled slightly, and kept driving.

I can't explain his behavior I don't know why he didn't say, 'I love you, too.' When we got home, I felt as if I had lost him completely, as if he wanted nothing to do with me anymore. He just sat there quietly, and watched TV. He continued to seem distant and absent. Finally, with silence all around us, I decided to go to bed. About 15 minutes later, he came to bed. But I still felt that he was distracted, and his thoughts were somewhere else. He fell asleep; I cried. I don't know what to do. I'm almost sure that his thoughts are with someone else. My life is a disaster.

Husband's Diary:

A four putt; who the hell four putts ?

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

Four guys have been going to the same deer camp for many years. Two
days before the group is to leave, Ron's wife puts her foot down and
tells him he isn't going.

Ron's friends are very upset that he can't go, but what can they do.

Two days later the three get to the camping site only to find Ron
sitting there with a tent set up, firewood gathered, and dinner
cooking on the fire.

"Damn man, how long you been here, and how did you talk your wife
into letting you go?"

"Well, I've been here since yesterday. Yesterday evening, I was
sitting in my chair and my wife came up behind me and put her hands
over my eyes and said, 'Guess who?'" I pulled her hands off, and
she was wearing a brand new nightie. She took my hand and pulled me
to our bedroom. The room had candles and rose petals all over. On
the bed she had handcuffs, and ropes! She told me to tie and cuff
her to the bed, and I did.

And then she said, "Do whatever you want."

"So, here I am..."

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I don't believe in overwhelming "coincidences" either. I believe in patterns, and patterns have meaning. We do seem to have a lot of RCC patients in both Michigan and Texas. That said, I also believe that medical issues usually have more than one cause; thus, it can be challenging to track down.

Had my MRI this afternoon. Ugh. Not as easy as a CT scan. Longer. Lots of long breath holding. Boring.

PLEASE let it be a fur ball!

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

Jamie
Praying for you and good news.

Scott

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Here's the URL for the UK kidney cancer site someone asked for. I learned a lot from this site, especially about the different meds. Since the UKers tend to have more advanced cancers, probably due to less frequent use of ct scans (which can also be a good thing), they have more medicinal therapy info, more info on metastasized cancers, and lots of info on navigating the NHS.

I went to school at Cambridge, and I'm back and forth quite a bit. Another good thing about the UK site--you can see who may live nearby.

They keep a pretty tight entrance, so be prepared to be screened to be sure youre not selling something and are actually a patient.

http://www.kidneycancersupportnetwork.co.uk/forum/

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

Jamie, 'twas I, so thanks for the link. Ironically I came here from there, having been a little disappointed at the volume of postings on the UK site. Your general remarks about its focus and strengths are appreciated, particularly since, apart from more than a passing interest in KC, I am casting about for info. that might help a much-loved cousin who's battling valiantly against liver cancer in London. He's dealing with mets after narrowly surviving a massive heart attack not many weeks ago. His options are now pretty limited. I've been reading a bit about Nexavar which seems like a recent addition to the weaponry against both kc and lc. He started a course of chemo today and we haven't been in touch since yesterday so I don't know what he's on. We're praying he might qualify for one of two trials on new drugs.

I had my first quick check-in with my GP today. All looking good and I should be able to get off morphine in the next week. On arriving home I found a letter from my Consultant who had just got the results of micro. analysis which confirmed my tumour was malignant. He stated conservatively that it has the appearance of having been completely removed. Of course we won't really know the score until I've had follow-up scans and blood tests but at least the news so far is not bad.

Thanks again,

T.

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

or some other non-cancerous thingy. So, no worries about the liver. They only thing that showed up on the MRI of any significance was bacterial pneumonia. I thought I just had a bad cold. I've been on antiobiotics for 2 days now, and I already feel better.

I'm sooooo glad I don't have to join the liver cancer club! I'm perfectly happy here with the kidney people. : )

micatex's picture
micatex
Posts: 10
Joined: Dec 2011

Really Really Really happy that you got good news. I am also glad you are stayin in this thread, it would have been a great loss to many if you left.

Mica

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

Jamie, we're all delighted that you're going to stay on this thread but it's even better news that you won't need to join the liver cancer community. (I have a cousin who may not make it with lc - the next few days will be critical and he was very weak yesterday. It's a more dismal prospect than rcc.) It sounds like you'll be here for a long while and that's great for us because your contributions here are always interesting.

Is the MRI scan that bad? I'm shuddering because I found my one and only CT scan so far to be a far worse experience than my open radical nephrectomy op. (apart from the first 2 days of recovery which were hell!).

Happy New Year and many, many more.

T.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Great way to start the new year, Jaimie. I'm very happy for you.
Mike

KatfromFlorida's picture
KatfromFlorida
Posts: 66
Joined: Aug 2011

Dear Jamie:

So glad your results were JUST AWESOME!!! When they did my bone scan before my surgery they told me I had sinus issues , won't it be amazing when they come up with a pill that will cure us all forever? Furball is a great cat name too!!! LOL...
Happy New year sweetie and prayers for you everyday....

My Best
Kat

foxhd's picture
foxhd
Posts: 2022
Joined: Oct 2011

That is still funny to me! Happy for you Jamie!

micatex's picture
micatex
Posts: 10
Joined: Dec 2011

Hate to burst your bubble. I live in Melbourne Victoria Australia.
Mica

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

Yeah, Mica RCC is so sneaky it gets everywhere!

Maybe Michigan has no special connection with RCC (and NED none with Mr. Kelly!) At least we can be sure they have a lot of nice golfers in Michigan. I gather you have growling frogs and I believe a golf club has been set up recently over there, called the Royal Melbourne?

Cheers mate,

T.

rae_rae's picture
rae_rae
Posts: 270
Joined: Oct 2010

I am soon happy to hear that it is just a furball! But look, you coughed it right up into your lungs! Hope you feel better soon. Here's to a Happy, cancer and furball free 2012.
Rae

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

Jamie-

Just read the news--I am so happy for you. I'm glad you are going to remain on this discussion board. Love reading your comments.

Scott

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

Puddy Tat... That's great news!!!

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

So good that the Puddy Tat just had a furball and that she's decided not to join the hc threads but instead to hang out with others of the same kidney! Re speculation about Michigan, Jamie said: "We do seem to have a lot of RCC patients in both Michigan and Texas. That said, I also believe that medical issues usually have more than one cause; thus, it can be challenging to track down."

What does seem to be known about this sneaky form(s) of cancer is it's on the increase. Partly the incidence stats are attributable to the increased detection of asymptomatic occurrence by ultrasound, MRI, PET and CT scans in the developed countries that can afford these diagnostic technologies. However, in the US and the UK studies show that there is a genuine increase, not fully accounted for by increased detection rates.

In the less developed parts of the world, the increase is directly traceable to smoking and in the more 'developed' it's probably ascribable to obesity. These are two of the major risk factors for kc. Another is high blood pressure. Interestingly, it's known that blood pressure is affected appreciably by air temperature. In the UK, BP is higher in the colder Scotland and north of England than in the south of England. This may be confounded by considerations of social deprivation - obesity stats are worse where (comparative) poverty leads to poorer diet and smoking is more prevalent where educational standards are lower. However, the UK's esteemed Medical Research Council has established that BP is higher in winter than in summer, particularly in older folks.

When I moved my car this afternoon, we were at -4C and likely to go quite a bit lower. I'm guessing it can get quite cool in Michigan also (even if not in Texas and Melbourne!) --> higher blood pressure --> more cases of kidney cancer. This is mere speculation but wild guesses sometimes hit on clues in complex issues.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi Jamie,

I haven't posted here in forever as 2011 just seemed to be one catastrophe after another for us. I had my RCC in July and we spoke a few times on this board. I go tomorrow (Monday 16th) and Wednesday for my 6 month tests. I'm hoping I get good results like you. I too have something on my liver, but was told it was nothing to worry about. Now I'm wondering if I should ask for further tests. Anyway, I just wanted you to know I'm overjoyed for you and your test results. I just teared up for you, thinking, now maybe you can worry a bit less. Hugs to you and blessings for further clear scans in your future.

Lisa

earnric's picture
earnric
Posts: 34
Joined: Jan 2012

Man ... just read thru. So so so glad to hear you are ok!

:)

Rick

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