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Sorta new to this roller coaster and new to CSN

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
alice124
Posts: 881
Joined: Mar 2012

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's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

Thanks for the welcome. Not Michigan. Easter Pennsylvainia.

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

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

Joe_fh
Posts: 47
Joined: Aug 2012

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's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

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
Posts: 47
Joined: Aug 2012

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's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

maybe being more of a whiner! Oh well I was just venting. You hang in there also.

Joe_fh
Posts: 47
Joined: Aug 2012

You vent all you want brother. The stars know I have had my moments too, and still do - truth be known.

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

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

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.

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

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?

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

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.

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

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.

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

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's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

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's picture
garym
Posts: 1651
Joined: Nov 2009

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

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

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's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

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

Joe_fh
Posts: 47
Joined: Aug 2012

I am not sure if we're allowed to post links here ..

... but ebay has good selection of Kidney belts for us riders.

ebay link:
http://www.ebay.com/sch/sis.html?_nkw=A23-Motorcycle-Riders-Kidney-belt-New-Mens-Back-Belts-S-

I hadn't given it much thought since it looks like I will miss the rest of this riding season. But the point is good, I should get one too. Since we have all given up our spare part now, we need to add extra protection to the one that we have left.

And Shaggy, you should check you local leather shops.. Around here we got a lot of people doing custom work for spare coinage.

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

I do not shop ebay. But thanks for the thought. I try doing local indie shopping where i can. the only leather shop around here does not really sell that stuff - just the even t import leathers.

I did look into so indy leather crafstmen but found a leather supply shop and started to think about trying to make one myself.... then the nagging began "it will cost you more for the leather tools than to buy one not counting the mistake and leather costs!" and it stopped there....

but now you mention it i should heck them out to see if they know anyone who does the leather work close by!

why do women always want to prevent u from collecting tool? :)

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

Sorry you had to find us this way but welcome. There are a lot of good people here and we all have a common bond "Kidney Cancer". Please keep us updated on your progress. We are all praying for you to have a smooth recovery and many years of riding in wind. As far as why women want to prevent men from collecting tools. We have a two car garage, a stand alone garage and a shed all full of tools. When we need something my husband has no idea where it is so he buys another one just like it. We now have two of every tool in the universe and still can't find them. LOL... I guess that is why!!!

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

So that is how it works! If you have one of something you cannot buy a second! I will try this when the subject of jewelery comes up next! - " Oh no! You already have a pair of earrings! you do not need another!"

:)

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Welcome Shaggy. I'm a newby here also, and am learning day-by-day, about this disease stuff.
Tools, you want tools? My handle (screen name) has stuck with me for better than 20 years, having been a Snap-On Tools dealer here in SoCal. I was called by many nicknames, (not all of them kind), but the one that "stuck" by most of my customers was Toolman. This just seemed like an appropriate time for that explanation. Forgive the indulgence.

Best of luck in your treatments, and as others have stated, we will always be here for you.

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

Hey is your dog named scooby

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

no his name is winston.

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

I too am a T3a with 11 cm tumor, Furhman grade 4 - removed 3/12. I was put into a clinical study for Votrient/pazopanib or placebo. This is a study for those at high risk in which the cancer has not metasticized. Some stage 4 patients are already taking this and seeing great results to their mets.

Did your doctor suggest anything such as studies available or anything other than "see you in a few months"?

Welcome to the kidney cancer circus!

Lorraine

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

he said there are not trial in the area - the closest is philly or NYC but if i wanted to travel.... if i remember correctly. But I have concern for time off at work and loosing my job if i take too much time traveling. The insurance coverage now is really important now and since we (T3 RCC patients) do not qualify for disability i have to be concerned about my income. so the travel (1.5 hrs minimum each way to philly - about 2 hrs to NYC minimum even with the trains)

I am thinking i have more fear about my condition than they do. Just having a hard time accepting stage 3 with IVC involvement is considered "found early" i guess. Maybe a my follow up scans come and go clear I may believe them more. I get the feeling that having both a urologist and oncologist is overkill and they thinks so as well as all they can do is cut it out and hope like they have for the last 100 year.

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

I have a Urologist and an Oncologist. I was Stage 1, Grade 3. I think we need both for our own comfort. My Urologist takes care of my remaining kidney and the Oncologist orders my CT Scans.

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

that is about how it is for me i thin. The Urologist specializes in urological oncology or spent a good deal of his training doing so. That has me confused too - if he specializes in both why do i need and onc?

I asked if i should see one and he just shrugged and said if i want to - he would recommend some... I asked who the primary would be and he shrugged again - neither - we would work together....

Oh well. someday i may learn how to deal with doctors. I guess I will just wait for the sun and hope for a ride. :)

adman's picture
adman
Posts: 268
Joined: Jul 2012

what you really need is a nephrologist to advise you on your remaining kidney.

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

why? What wold they provide me that the urologists who get the blood results would not be able to tell me? not sure i know what benefit they would provide.

adman's picture
adman
Posts: 268
Joined: Jul 2012

I'm not a Dr. I don;t know anything about you. Your lifestyle. The types of food you eat, where you eat out, how much you drink, etc. You could have the very best diet in the world, or you could eat like crap.

You go to an expert that specializes in kidneys, not a 'generalist' who covers all of the Urological areas. Nephrologists understand how kidneys react to food, medication, etc. I'm not saying all Urologists don't have a grasp on this as well, I don't know the Dr you go to, but for me, I would rather see a specialist that is used to working with people with Late Stage Kidney Failure and learn how to avoid these issues in advance of something serious happening.

I'm currently reading a great book "Coping with Kidney Disease" - Mackenzie Walser, MD.
An enlightening read on how kidneys work and what we can do to prevent the need for dialysis down the road.

I'll give you an example. The book advocates for a reduction in protein down to 20 grams/ day. All I was told by my Dr was to limit protein consumption, nothing specific.
I eat a mostly vegetarian diet. I've done that for the past few years, long before I had my surgery. I didn't know that there are 'better' vegetables to eat that have lower phosphorous counts and less protein than some others.

You can drive yourself insane with this stuff and not live your life. I'm a thinker, so I analyze things. People pay me a lot to do that. In my own life I do the same. Whatever makes you happy my friend.

God Bless!!

ShaggyHD's picture
ShaggyHD
Posts: 22
Joined: Sep 2012

not near Late Stage Kidney Failure as far as i know and from what i was told my kidney was healthy and if not i would agree with you. I do not understand why would you recommend a specialist? Do you see one?

As for me
i do not drink any more (actually quit month before )
i try to eat low salt - though that is tough
I rarely eat out - I prefer to cook my own food and sometimes is actually less expensive. Had a lot of heart burn issues and eating out would have me up all night puking and pre-hypertension leading up to the discovery (who knew they were related! shrug) so i tried to eat a bit healthier to avoid these issues.

I am sure if they had concerns for my kidney i would have been refereed to a nephrologist.

I am not trying to stir things up with my question jut trying to understand why you think i need one. I was just wondering why i need more doctors and not less seeing that my urologist specialize in urology-oncology. Would that not be more of a specialist in Kidney cancer than a plain old Oncologit?

as for diet - i was only told to avoid sodium

And i just came to realize. all these internet forum places are a waste of time. later.

adman's picture
adman
Posts: 268
Joined: Jul 2012

....and defer.

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

I agree i think your urologist is more than qualified to moniter your remaining kidney,but as far as your RCC path report is concearned due to the grade and size of your tumor i think you should consult with a oncologist who speacializes in RCC and please we are only trying to support each other and we are not a waste of time.Have a nice day Shaggy

dl650a
Posts: 31
Joined: Feb 2012

Hi Shaggy,
A belated "welcome" to the forum. My surgery was just over 6 months ago and I am currently waiting for my first set of follow-up results.

I asked my urologist if there was any benefit to riding a motorcycle with a kidney belt. He didn't seem to think there was any significant difference.

Ed

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