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I Just Found Out That I Have Kidney Cancer..I'm Scared Of Having A Painful Death!

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Subject: I just found out that I have kidney cancer..I'm scared of having a painful death!
Date: 07/23/2008
Hello, I am a 47 yr old white man who is disabled from the Army and living alone. On june the 5th,2008 I decided to buy a new Harley Davidson and ended up having a wreck a few hours after leaving the shop. I've had 23 motorcycles since i was 18 and this was my first real accident. After going to the hospital because I knew I had a broken collar bone I was released hearing them tell me that I suffered no other injuries. Well, After coming home and getting weaker by the day I went to my local VA hospital where I found out that i had a ruptured spleen and a lacerated liver. I was sent out to another hospital where i needed surgery & a blood transfusion from the hemoraging inside and that is when the surgeons that were going to remove my spleen told me that I had a 5" tumor on my right kidney(renal cell carcinoma=cancer) and that they needed to save my spleen because I would need it for when I have the kidney removed. I suffered injuries when I was 18 in the Army and now take 60mg's of morphine sulphate every 6 hours along with 40mg's of methadone every 8 hours for pain. I recently saw a surgeon at a VA medical center and he said his concern was when they did surgury on me was keeping me comfortable afterwards. I have to say that I am a born again christian and that I have faith in what gods plans are for me but i am absolutly terrified of having to die a long drawn out painful death.I would hope that Hospice or someone could help me die as comfortable as possible.Being catherisized has always scared me also after having it done while awake. Surgery is scheduled for 9-15-08 at the VA medical center, but I also have an appointment at WVU(Ruby memorial hospital) on 8-30-08. I think that they are a far better hospital but I only have my medicare card which would leave me oweing 20% plus some docters fees. Any advice or info,support would be so greatly appreciated. I am now having fevers on a daily basis along with a 40pd weght loss over this past month and a half. More back pain also but tolynel has helped. Thank you
Subject: RE: I just found out that I have kidney cancer..I'm scared of having a painful death!
Date: 07/23/2008

 

On 7/23/2008 Rick61 wrote:

Hello, I am a 47 yr old white man who is disabled from the Army and living alone. On june the 5th,2008 I decided to buy a new Harley Davidson and ended up having a wreck a few hours after leaving the shop. I've had 23 motorcycles since i was 18 and this was my first real accident. After going to the hospital because I knew I had a broken collar bone I was released hearing them tell me that I suffered no other injuries. Well, After coming home and getting weaker by the day I went to my local VA hospital where I found out that i had a ruptured spleen and a lacerated liver. I was sent out to another hospital where i needed surgery & a blood transfusion from the hemoraging inside and that is when the surgeons that were going to remove my spleen told me that I had a 5" tumor on my right kidney(renal cell carcinoma=cancer) and that they needed to save my spleen because I would need it for when I have the kidney removed. I suffered injuries when I was 18 in the Army and now take 60mg's of morphine sulphate every 6 hours along with 40mg's of methadone every 8 hours for pain. I recently saw a surgeon at a VA medical center and he said his concern was when they did surgury on me was keeping me comfortable afterwards. I have to say that I am a born again christian and that I have faith in what gods plans are for me but i am absolutly terrified of having to die a long drawn out painful death.I would hope that Hospice or someone could help me die as comfortable as possible.Being catherisized has always scared me also after having it done while awake. Surgery is scheduled for 9-15-08 at the VA medical center, but I also have an appointment at WVU(Ruby memorial hospital) on 8-30-08. I think that they are a far better hospital but I only have my medicare card which would leave me oweing 20% plus some docters fees. Any advice or info,support would be so greatly appreciated. I am now having fevers on a daily basis along with a 40pd weght loss over this past month and a half. More back pain also but tolynel has helped. Thank you
Hello Rick,  Whooooaaaa brotha whats all this long painful death talk. Let's stop and collect ourselves a minute. At 45 I was dx with RCC, I thought like you did ,for only about 2 secs. Man, cancer is just a word not a sentence. What you need to do is get an appt. at MD Anderson in Houston Tx. they're the best they will treat you whether you as rich as Bill Gates or as poorJob's turkey.I had my left kidney removed in 3/97. had all the x-rays and ct's for ten yrs. not a trace of it. But in 7/07 it came back in my lungs , lymphnodes and adrenal gland. That's when I went to Houston. I took 14 cycles of IL2 left wit everything stable.Then in Dec. of 07, that monster showed up in my left shoulder. I was given 14 doses of rad and started on 50mg of Sutent.It's July again and I'm still here. On the 17th this month I underwent surgery on this shoulder. I'm feeling fine except for the pain of my surgery, and I'm off the Sutent till I heal from the operation. So Man let's not talk about dying any time soon. There are too many things that can be  done So take Care    talk to you any time you feel the need man   John 

 

Subject: RE: I just found out that I have kidney cancer..I'm scared of having a painful death!
Date: 07/23/2008
Hey Rick,  John is right, you can beat this, most things people worry about never happen.  I had my Lt kidney removed in 99.(rcc) Spot on my rt lung in 02, jan 08 found in my lymphe nodes and spot on rt lung. So still here after 9 yrs. I was layed up awhile after kidney surgery, but could have taken care of myself if needed. Your pain medicine will keep you from having to take any more after surgery.  Hope the Best. Lee     
Subject: RE: I just found out that I have kidney cancer..I'm scared of having a painful death!
Date: 07/24/2008

Rick - take it from me (husband diagnosed/DX in May this year!), this is the worst bit of it all - the shockwave from the diagnosis! It's brutal and panicking and the gut terror is bad - BUT it does ease off as you get your head round things.

I'd say the most important thing is to start reading up on all this (and this is a great site for it, plus I fully recommend http://www.kidneycancer.org/index.cfm?pageID=214  (The Kidney Cancer Association) 

You want to find out what stage you are at - IF your tumour is, you say, around five inches, and it's on, rather than just contained within your kidney, then I THINK you are stage II (but please check, and I'm sure others here will correct me)(my husband is Stage IV so I'm not too clear about the earlier stages!). Ask you oncologist if it's got the adrenal gland (sits on top of the kidney).

 Also, you need to find out what exact type of kidney cancer you've got. The most common is clear cell (around 80%) but there are some rarer variants (again, sites like this and the KCA are good on taking you through the differences) - a rarer type may have different drug therapy and treatment.

I'll say straight out that so far as I understand, IF they get all the tumour out (maybe with all the kidney or not, it depends what's necessary), AND there is no evidence that it has spread in the blood to distant places like lungs and lymph nodes  and bones (the most common destination)(that would make you Stage IV - distant mets, or metastases), THEN just getting rid of the primary tumour (the one on the kidney) should do the trick..... (I can find the stats on 'cure rate' for this stage, I know I've seen them somewhere, and will get back to you!) (I know if the tumour is small and contained within the kidney itself, then the 'cure rate' is something fantastic like 90%)

With the kidney/primary tumour gone, what you THEN have to watch out for is the damn beastie trying to sneak back in - which can happen. ie, the cancer can recur in the renal bed, where the kidney was taken out, or, if it's 'seeded' in the blood, can pop up with distant mets in the lungs etc. This is then called recurrent RCC.

Yes, this happens, BUT, again, from what I understand, it does NOT happen in every case! I'm still tracking down stats for recurrence, but one I found just now on the Internet (keyed in recurrent RCC....) is   

 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=14

This is a couple of years old now (2006) but I doubt the stats change much? The reference Reviews in Urology says "after nephrectomy, RCC recurs in 20% to 40% of patients with clinically localized disease."

That's not bad, is it?! What will be essential is continual monitoring (for the rest of your life!) to check for any recurrence.

Now, if the beastie DOES make a comeback (or, indeed, there are already distant mets), all is still not endless gloom. We are living, folks, at what has to be 'the best time in history to get KC!' - for the last few years we've seen the arrival of a batch of new power drugs, the first new treatments for advanced (ie metastatic)(whether recurrent or Stage IV DX) for thirty years. (And the existing treatments weren't rubbish either - as you can read here above about IL2 - which CAN cure completely in SOME  few cases, and can fend off in a lot more.)

The new drugs only came out of trial a couple of years ago, and are now the front line drug therapy. Sutent, for example, works for around 75% of patients, either stopping their mets growing or even shrinking and getting rid of them. (I'll tell you straight off the downside of Sutent is cost - it's about $5,000 a cycle, and you need around eight cycles a year...)(but I'm sure I've read here on this site of people getting it via compassionate programs?)(sorry, I'm from the UK - where it's not available on our wonderful free NHS - yet!!!!)(we have to convince the NHS of the survival stats!).

At the moment, the post-trial data is showing a median time to progression (ie, the mets are held stable, or shrink) of nearly a year, and overal median suvival of just over two years - and that's median/average, remember. If you browse these threads you'll see some people who were on the trial getting more than that already! The bottom line of the new drugs is that NO ONE really knows their long-term effect on keeping us going! They just haven't been around long enough. So it really is 'all to play for' with these new drugs.

I won't overload your brain right now when you are still in initial shock stage, but Sutent is not the only new drug around, and there are more coming along in trial as well. My mantra is ' the longer you last the longer you'll last'. (My husband's getting bored of me droning it at him!!)

All the very, very best to you. Take the best care of your 'outward health' you can at this stage (eg, keep a good diet as much as possible, keep active/fit as much as possible)(no more bike smashes!!!!!), find out everything you can about what your exact condition is, research all your treatment options, and what will happen post-op. (For example, some of the docs are experimenting with putting patients on Sutent after a nephrectomy, "preventatively" to see whether it lowers the odds on the cancer recurring - so that may be an option for you if you at that earlier stage still).

Take care, and let hope be with you.

Julie.

PS - take a look at Bunker's posts here. He was on the original Sutent trial with recurrent RCC (I think!), and he's been tumour free for a good couple of years now - the Sutent polished off his liver mets (I THINK I'm right on that - but please check for yourself - I would not want to give you the slightest false reassurance, which is worse than useless) (and I do hope everything else I've said here pans out too!)

PPS - don't forget to check out the threads under Renal cancer, as well as Kidney cancer! We mostly all post on both.

Subject: RE: I just found out that I have kidney cancer..I'm scared of having a painful death!
Date: 07/24/2008
First, Let me say hello to all of you and thank you all for enlighting me on this disease and the condition of yours and what you have been through. I am mostly a very posative thinking person but it has seemed like there has been a few days where i have been overwhelmed by this disease and just learning of it not long ago. I thank you all. I wish the very best to all of you. God bless , Thanks Rick
Subject: RE: I just found out that I have kidney cancer..I'm scared of having a painful death!
Date: 07/24/2008

 

On 7/24/2008 Rick61 wrote:

First, Let me say hello to all of you and thank you all for enlighting me on this disease and the condition of yours and what you have been through. I am mostly a very posative thinking person but it has seemed like there has been a few days where i have been overwhelmed by this disease and just learning of it not long ago. I thank you all. I wish the very best to all of you. God bless , Thanks Rick

 

Yes, it can seem like you've been hit by a truck (or a Harley!) - it's quite overwhelming on the psyche. And, as Shakespeare says 'When sorrows come they come not in single spies, but in battalions'.

In the couple of months since the DX, my husband and I (oops, I sound like the Queen! :)  ) have been through some real 'dark nights of the soul' when everything just looked blacker and bleaker - but but but slowly slowly slowly you DO start to come round. You realise that yup, we've moved to a new place - Cancerworld - but that ISN'T a place where people just come to die. They come with the hope, the determination, for survival.

All the very best to you, and to all of us here in Cancerworld. Julie

Subject: RE: I just found out that I have kidney cancer..I'm scared of having a painful death!
Date: 08/02/2008
There is a free email support group sepcific to kidney cancer.  See http://cancerguide.org/kofaq/ .
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