Sorta new to this roller coaster and new to CSN

ShaggyHD

Hello everyone. I have been lurking this board on and off over the last three months or so and decided to sign up. Not sure what to post so I figure I an start with my story though not unlike the others I have read.

Well this all began for me back in December when I started with the flank pain. I am not one who enjoys going to emergency rooms unless bleeding profusely or carted in not under my own volition. To me they are places for people who are really sick. This flank pain was intense so I went to one of the local private 24 hour emeri-centers since it was Saturday morning.

Well after a few xrays, some blood taken, a punch to the kidney and told to schedule a sonogram later in the week they sent me home with some Vicodin. On Monday afternoon they called and strongly urged me to go to the ER for a sonogram as they saw some odd results in my blood work related to the liver. Mind you at the time I was a a heavy drinker so odd liver reports was not a surprise to me or the emergency room doctor. Well nothing was found. I left with the impression that there is nothing wrong and could be related to GERD or constipation with the help of the internet. The pain did go away for a few months.

Eventually I got a new family dr after many years of not seeing a doctor because of the constant pain. HE sent me for a blood test again and the day after the blood tests this ride began. Gross Hematuria and a clot the size of a half dollar shot out. What a way to start the summer! Well I called the new dr and all they said was - errr you should go to the ER.

I spent the next 9 hours of hanging out in the ER with an IV to hydrate me. Medical students coming ad going to practice their ultrasounds a few cat scans later, the doctor comes in and says You have kidney cancer that extends into your Inferior Vena Cava. They can cut it out and give you radiation and you will be fine. Call a Urologist and an Oncologist.

Well what a weekend. I get home and do a google search of the prognosis, knowing nothing more than I have kidney cancer, which at the time may not have been the best idea. Saturday is my parents 50th wedding anniversary, and this is probably not the best time to bring up to my family knowing that my Dad's side of the family has not such a good history with cancer. So now I get to sweat this out over the weekend silently.

Monday morning i am watching the clock waiting to call the Urologist and the phone rings a half an hour before they open for the first appointment... The MRI for the Vascular surgeon was scheduled, the cytoscopy was scheduled and 20 days later the surgery was performed and the Vascular guy said he was barely needed and it slipped right out and urologist says No more cancer! 5 days later i am sent home.

The pathology showed Stage 3 Clear cell "10 cm in greatest dimension" with a "3-4/4 nuclear grade by fuhrman" with extension to the IVC. The report indicated T3 N0 MX but I am assuming that is t3b since it did invade the renal vein and extended into the IVC.

I guess I am healing pretty well. Six weeks out of work, I have no more lifting restrictions (other than trying to lift a refrigerator according to the surgeon, I think he was showing his humor) and I can ride my motorcycle again (if work would stop interfering!). A few remaining aches around my rib and the scar. Some aches in the back where the kidney was but feeling good nonetheless.

Now I get to deal with this wonderful (is there a sarcasm font here? ) mind game of "You have cancer" and the next day "You Do not have cancer!" while waiting for my first 3 month follow up CT (Oct 1) with so much confusion about what the Doctors said and what I read in the pathology and what i searched through NIH, the medical journals etc. and and what i do not understand.

At least i have more questions for my next appointments than the "what do we do from here?" first appointment.

Texas_wedge

Welcome!
Shaggy, you're going to be great company here - welcome aboard. Who's the fella (?) with you in the picture - you're hereby permitted to answer with a Shaggy-dog-story.

alice124

Texas_wedge said:

Welcome!
Shaggy, you're going to be great company here - welcome aboard. Who's the fella (?) with you in the picture - you're hereby permitted to answer with a Shaggy-dog-story.

Right place
Shaggy,

Tex took the words right out of my mouth. You're in a lot of like Biker company. Amazing. It makes me wonder whether people search kidney cancer or bikers before getting here. Not that we mind, we love all bikers and golfers, I just find it uncanny how many there are. Do you also live in Michigan by chance?

You're with a lot of knowledgeable and compassionate people here so stay tuned and keep us updated. Again welcome.

ShaggyHD

Texas_wedge said:

Welcome!
Shaggy, you're going to be great company here - welcome aboard. Who's the fella (?) with you in the picture - you're hereby permitted to answer with a Shaggy-dog-story.

Thanks!
Thanks for the welcome. The Fella with me? You mean the one with long hair and a short nose?

ShaggyHD

alice124 said:

Right place
Shaggy,

Tex took the words right out of my mouth. You're in a lot of like Biker company. Amazing. It makes me wonder whether people search kidney cancer or bikers before getting here. Not that we mind, we love all bikers and golfers, I just find it uncanny how many there are. Do you also live in Michigan by chance?

You're with a lot of knowledgeable and compassionate people here so stay tuned and keep us updated. Again welcome.

Thanks
Thanks for the welcome. Not Michigan. Easter Pennsylvainia.

Joe_fh

Welcome in
Hi shaggy, welcome to the forum.

As you told your story I am struck by how similar our classifications are. And without a doubt I can relate the your last sentence of "At least i have more questions for my next appointments than the "what do we do from here?" first appointment." Actually your first question to the doctor was more constructive than mine, mine was more along the lines of a shock inspired, WTF? - since I had no symptoms.

My first follow-up will be early October and man, do I have a lot of questions. Most of which I have found answers here for, but I am still wanting to hear it from the man. I am just over 2 weeks out from my surgery.

Stay in touch guy, we both have a lot to learn. Let's both hope that all that learning is more academic rather than anything else.

ShaggyHD

Joe_fh said:

Welcome in
Hi shaggy, welcome to the forum.

As you told your story I am struck by how similar our classifications are. And without a doubt I can relate the your last sentence of "At least i have more questions for my next appointments than the "what do we do from here?" first appointment." Actually your first question to the doctor was more constructive than mine, mine was more along the lines of a shock inspired, WTF? - since I had no symptoms.

My first follow-up will be early October and man, do I have a lot of questions. Most of which I have found answers here for, but I am still wanting to hear it from the man. I am just over 2 weeks out from my surgery.

Stay in touch guy, we both have a lot to learn. Let's both hope that all that learning is more academic rather than anything else.

Thanks
Thanks for the welcome and sorry to hear you are manning an oar in the same boat.

During the pre-surgery visits were they also telling you they could not tell you anything until the pathology reports comes back, visit one doctor they say it is not that bad, the next tells you it is bladder cancer the next tells you removing the kidney is the easy part - the Vascular surgeon has the tough part and then the Vascular surgeon tells you - it is not that bad, one of our least experienced surgeons will attend to you?

Bastards! I wish they would all have talked so they had the same story prior. But I am very thankful it is Kidney cancer opposed to Bladder... as odd as that sounds.

At least after all that I did not fear the surgery as much as i did having to talk to another doctor.

Joe_fh

ShaggyHD said:

Thanks
Thanks for the welcome and sorry to hear you are manning an oar in the same boat.

During the pre-surgery visits were they also telling you they could not tell you anything until the pathology reports comes back, visit one doctor they say it is not that bad, the next tells you it is bladder cancer the next tells you removing the kidney is the easy part - the Vascular surgeon has the tough part and then the Vascular surgeon tells you - it is not that bad, one of our least experienced surgeons will attend to you?

Bastards! I wish they would all have talked so they had the same story prior. But I am very thankful it is Kidney cancer opposed to Bladder... as odd as that sounds.

At least after all that I did not fear the surgery as much as i did having to talk to another doctor.

wow
No, you got the drop on me there. Lucky for me all my interactions with the medical staff were mostly in the same story-line. The only variations I experienced had to do with tumor size. The initial read of the image placed it at 15cm, a little later on another scan it was sized at 10cm. The pathology report pegged the actual size at 12.1cm - almost dab smack in the middle.

My situation was all handed by the Veteran's Administration. I know people read horror stories about the VA in the gossips-of-the-net world, but I got to hand it to them, they worked together like a well oiled machine. It was kinda hard for me as a layman to follow everything as there were so many different departments involved, but in my case - they had their act together and I got no gripes about how they went about the process.

As to the part about being thankful it was Kidney cancer rather than something else, I hear ya. I think it is mentioned here in other some threads that if we had to choose a cancer, Kidney was the best selection. I assume this to be due to the ease in which it can be removed in the early stages? I dunno about all that as my experience is limited, but if choice was given, I think none of the above would be the hands down winner.

Hang tough man.

ShaggyHD

Joe_fh said:

wow
No, you got the drop on me there. Lucky for me all my interactions with the medical staff were mostly in the same story-line. The only variations I experienced had to do with tumor size. The initial read of the image placed it at 15cm, a little later on another scan it was sized at 10cm. The pathology report pegged the actual size at 12.1cm - almost dab smack in the middle.

My situation was all handed by the Veteran's Administration. I know people read horror stories about the VA in the gossips-of-the-net world, but I got to hand it to them, they worked together like a well oiled machine. It was kinda hard for me as a layman to follow everything as there were so many different departments involved, but in my case - they had their act together and I got no gripes about how they went about the process.

As to the part about being thankful it was Kidney cancer rather than something else, I hear ya. I think it is mentioned here in other some threads that if we had to choose a cancer, Kidney was the best selection. I assume this to be due to the ease in which it can be removed in the early stages? I dunno about all that as my experience is limited, but if choice was given, I think none of the above would be the hands down winner.

Hang tough man.

Not trying to be a winner....
maybe being more of a whiner! Oh well I was just venting. You hang in there also.

Joe_fh

ShaggyHD said:

Not trying to be a winner....
maybe being more of a whiner! Oh well I was just venting. You hang in there also.

no such thing in this realm
You vent all you want brother. The stars know I have had my moments too, and still do - truth be known.

foxhd

Joe_fh said:

no such thing in this realm
You vent all you want brother. The stars know I have had my moments too, and still do - truth be known.

Vent, vent, vent
Shaggy, you can definitely vent here. we have created enough wind to sail the Nina, the Pinta, and the Santa Maria to the new world. You've found a place where people listen. We have our own culture and experience. Sort of like talking Harley. The difference is that cancer sucks big time.

garym

foxhd said:

Vent, vent, vent
Shaggy, you can definitely vent here. we have created enough wind to sail the Nina, the Pinta, and the Santa Maria to the new world. You've found a place where people listen. We have our own culture and experience. Sort of like talking Harley. The difference is that cancer sucks big time.

Welcome to the gang...
Shaggy,

You don't have to have a bikers mentality to fight this disease, but it helps!! You seem to have a positive attitude and a good sense of humor, both will serve you well. Go ahead and vent as needed, we've all been there and we understand. Cancer does suck, there's a better word for it though that rhymes with sucks, but I just can't think of it right now.

Rubber side down,

Gary

ShaggyHD

foxhd said:

Vent, vent, vent
Shaggy, you can definitely vent here. we have created enough wind to sail the Nina, the Pinta, and the Santa Maria to the new world. You've found a place where people listen. We have our own culture and experience. Sort of like talking Harley. The difference is that cancer sucks big time.

Thanks!
Thanks for the welcome! I will try not to vent too much.... Cannot guarantee no bad jokes though! I think my SO would be happier if i found another outlet for them. LOL!

I am guessing you still ride. Do you or anyone else who rides here use kidney belts? If so, which brand / type?

ShaggyHD

garym said:

Welcome to the gang...
Shaggy,

You don't have to have a bikers mentality to fight this disease, but it helps!! You seem to have a positive attitude and a good sense of humor, both will serve you well. Go ahead and vent as needed, we've all been there and we understand. Cancer does suck, there's a better word for it though that rhymes with sucks, but I just can't think of it right now.

Rubber side down,

Gary

Don't know
If I have a positive attitude but i sure have one. LOL! as for humor i sure know some people who would argue that it is good. Especially with the cancer jokes.

foxhd

ShaggyHD said:

Thanks!
Thanks for the welcome! I will try not to vent too much.... Cannot guarantee no bad jokes though! I think my SO would be happier if i found another outlet for them. LOL!

I am guessing you still ride. Do you or anyone else who rides here use kidney belts? If so, which brand / type?

belts
I had never considered it. I had been exercising with a good amount of ab, back and waist work. I have felt safe and secure. Today I will ride to my radiation treatment. First time in a couple weeks the bone pain has diminished enough. I will probably take the long way.

garym

ShaggyHD said:

Thanks!
Thanks for the welcome! I will try not to vent too much.... Cannot guarantee no bad jokes though! I think my SO would be happier if i found another outlet for them. LOL!

I am guessing you still ride. Do you or anyone else who rides here use kidney belts? If so, which brand / type?

Yep...
I still ride , since is was a wreck that led to my early dx I figure riding...err falling off...saved my life so I'll stay in the saddle as long as possible. Doc suggested a kevlar belt to protect my remaining kidney, but I never bought one.

ShaggyHD

foxhd said:

belts
I had never considered it. I had been exercising with a good amount of ab, back and waist work. I have felt safe and secure. Today I will ride to my radiation treatment. First time in a couple weeks the bone pain has diminished enough. I will probably take the long way.

first ride
First time the Dr cleared me to ride was this past thursday. Got a short ride in before dinner. Friday another short ride but I could not ride Sat or sunday - with beautiful weather mind you - because of that disease worse than cancer..... that being work. I wa on call and needed to hear the phone if it rang.... Maybe I can get a few miles in tonight.....

But that another weekend wait is not that bad. I was expecting not to be able to ride at all this year.

ShaggyHD

garym said:

Yep...
I still ride , since is was a wreck that led to my early dx I figure riding...err falling off...saved my life so I'll stay in the saddle as long as possible. Doc suggested a kevlar belt to protect my remaining kidney, but I never bought one.

kevlar
Did you search any out? She came up with a few dirt bike types but I would prefer the old fashion leather... My leathers have a little nylon belt but I would rather not have to listen to her nag.

garym

ShaggyHD said:

kevlar
Did you search any out? She came up with a few dirt bike types but I would prefer the old fashion leather... My leathers have a little nylon belt but I would rather not have to listen to her nag.

kevlar
I'm pretty sure it was the dirt bike type he was referring to, but I never checked anything out.

garym

ShaggyHD said:

kevlar
Did you search any out? She came up with a few dirt bike types but I would prefer the old fashion leather... My leathers have a little nylon belt but I would rather not have to listen to her nag.

Leather
Shade Tree has one that looks decent, I've bought gear from them in the past with good results. Just Google Shade Tree Power Sports, click riding apparel and type leather kidney belt in the search box. Hope this helps.

ShaggyHD

garym said:

Leather
Shade Tree has one that looks decent, I've bought gear from them in the past with good results. Just Google Shade Tree Power Sports, click riding apparel and type leather kidney belt in the search box. Hope this helps.

Thanks!
I think I aw that one before. I know what you now mean by the kevlar ones. Thanks!