First follow-up results

Jamie1.3cm said:

UK kidney cancer site
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/

UK support network
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.

Texas_wedge said:

MRI & MICHIGAN
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.

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

Jamie1.3cm said:

yep, it's a fur ball
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. : )

Fur ball
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.

Jamie1.3cm said:

yep, it's a fur ball
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. : )

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

KatfromFlorida said:

Furballs!!!!!!
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

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

Awesome News
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

braswelm said:

RCC and golf
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

I only Lick Golf Balls......
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 **** 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!

ripper said:

I only Lick Golf Balls......
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 **** 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!

The Golf Mentality
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.
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Husband's Diary:

A four putt; who the hell four putts ?

garym said:

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

Epidemiology
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.