New guy Just dianosed

Iggyrip

Hello All,   I just found this site after a long day and am glad I found it.

The stories and information here have given me a little hope after seeing my Oncologist. I have a 5.5 centimeter (hope I spelled that right) mass on my right kidney. It was found after an untrasound ordered by my GP after I complained of stomach problems. I was hoping it would be a Stage One, but my doctor informs me that she needs an CT scan before she can make a full diagnosis and start a treatment plan. I am concerned I will be at an advanced stage.

I am scared and really depressed. Finding this site has been something positive in my current state. I means a lot to be able to read about people have been there. 

 

Thank you all for being here and sharing.

 

Iggyrip

 

 

 

 

icemantoo

Mine was 4.2 cm

lggyrip,

Mine was 4.2 cm, 14 years ago. Surgery only and scans. So far, so good. Hopefully the surgery will be your only treatment. As long as it is contained and under 7 cm it is still  stage 1. You need to see a Urologist who specializes in Kidney Cancer unless the On cologist is also a Kidney Cancer surgeon. You also want this out ASAP.

Welcome to the club which no one in their right mind would volunteer to join. We all felt like sh--  when hearing the C word and you are going to have your kidney taken out in the same sentance. That too shall pass.

 

Icemantoo

stub1969

Welcome

Hello, Iggy

Scared and depressed--that is put simply.  It's hard to describe the emotions that go through us with this diagnosis.  I "joined" the club almost two months ago when I was told I had a mass coming out the lower pole of my right kidney.  One thing everybody on this site told me is to make sure I was seeing a doctor that had experience with RCC.  I took their advice and have been working with Mayo Clinic out of Rochester, Minnesota rather than the local hospital down the road.   I had surgery three weeks ago yesterday.  Mine was a robotic partial for a 5.3 cm mass and recovery was pretty smooth.  On my CT they measured it as a 5.8 cm, so the actual size may/probably will change once it goes to pathology. 

I know what you mean about having hope.  I made the mistake of jumping on Google and searching for all the information I could about kidney cancer.  That was a BIG mistake--the information left me feeling like this was a death sentence.  The truth is that information is terribly outdated.  The only good thing that occured is I stumbled onto this site.  I encourage you to "keep in touch" by contributing to the forum and adding your experiences to the conversation.  This is a rich place with a lot of experience and wisdom.  You'll find these folks that have been on this journey some of the best people you could "meet".  Try to relax and lean on your support system right now.  You'll get more answers soon from your doctor and from the results of your CT.  Surgery will be next and we can help you through that if you choose.

Take care and blessings,

Stub

hardo718

Welcome Iggyrip

Your feelings of being scared & depressed are normal, those words & emotions walk hand in hand with the word cancer.  It's like someone just dropped a ton of bricks on you.  Lots to think about, and rethink and then there's the journey that lies ahead and you're not sure which way to turn.  We've all been there.  Unlike you, I didn't stumble onto this site till 3+ years after my diagnosis & surgery and I only wish I'd known of it sooner.  Try to stay away from the Google searches, lots of outdated material there. 

I will echo what others have advised, make sure your doctor specializes in kidney cancer.  Mine is a Urologic / Oncologist.  He did my surgery & I see him for all my follow-ups.  Since you've only had an Ultrasound (if I understand correctly) your next step will probably be a CT scan.  If so, make sure it is ordered with contrast.  My initial CT wasn't and I had to go back to have it done with & without.  Depending on where the mass is located they might be able to perform a robotic laparascopic procedure and do a partial nephrectomy, so you don't necessarily lose the whole kidney.  Although you'll want to have this addressed ASAP, you do have time to seek out the best doctor for the job too.

We'll walk with you through this, if you want us to.  Keep us posted.

In the meantime, I'll be adding you to my prayers for all my "friends" here,

Donna~

 

Jan4you

Its good you found this site,

Its good you found this site, Iggyrip! If your mass is 7cm and under and not in any precarious places, most likey to be Stage 1. There is a good chance that the cancer will be eliminated with this surgery. Yet You'll be monitored and in good hands in years to come.

Yes get a Urologist familiar with RCC and I think it is important to find one that is trained in robatic, laproscopic surgery as its less intrusive and often leads to an easier recovery. I was told not to exercise for 30 days as your insides ae healing and you don't want to rupture anything. You can walk though. I also used a lumbar wrap to support those healing abdomen and would place dry ice packs inside the wrap which really helped with swelling=less pain=less need for pain opiate meds.

You can ask any questions you need to. We'll walk this journey along side you if you'd like.

Keep us informed and know we're here for you!

Warmly, Jan

 

 

Footstomper

Hi Iggy

Welcome.This is a good site, there is another, just as supportive slightly more technical called Smart Patients. Apart from that stay off the internet, you will find yourself on the dark side, surrounded by the mad, bad, dangerous to know, out of date or a mix of all the above.

I think we all remember our diagnosis, and the feeling that death was coming down on us riding on the engine of a speeding train. Relax, its not as bad as our imagination makes it. By the way 5.5 cm is pretty small (mine was 10 cms and I have a new one at 6'5 growing in my lungs - this is still kidney cancer and is called a met. A metastatic tumour that has moved from is original location).

You have started your treatment. Well done. The first thing is to get that lump out and then decide what happens next.

DONT PANIC! Cancer is no longer the death sentence it used to be. Research and trials are bringing more hope and more treatmets every day. It seems that, like AIDS, cancer is changing from a terminal disease to a chronic treatable one.

Welcome. Tough news and Good luck.

Iggyrip

Thanx for your responses

Hello,

Thank you for your responses. To clear things up,I had a CT scan, but my Oncologist wants another in my chest area. They saw something and want to make sure before moving on with treatment. (something about nodes or scars in my lungs. I will start writing this stuff down when I meet with my doctors) I was hoping it was Stage 1, but, it may have progressed. I am waiting to take another CT. Then, my Dr. will have more information. It seems my Oncologist is being very cautious before her diagnosis and treatment. Has this been anyones experience?  I have an appointment with a Urologist in a week or so, and will make sure to ask about his experience with this type of surgery. The laproscopic surgery seems the way to go.

 I appreciate all the advice and personal stories. They mean the world to me right now.

Thank you for your time and support.

Iggy

 

 

icemantoo

Nodes to the lung

Iggy,

Many of us both inside and outside the club have nodes on our lung. Not necessarily as part of Kidney Cancer even thou it often spreds to the lungs ffirst. Those under 8mm and show no growth between scans are normally considered harmless. If some of them grow or misbehave the reason for the scans is to catch them and treat them before they misbehave. In my day 14 years ago the initial diagnoses of the chest was by chest x-ray which does not pick up nodes under 8mm. My chest CT's were for other issues 10 years later which picked up harmless small nodes.

 

Icemantoo

rhominator

Welcome "New Guy"

Hi Iggyrip,

We were all the "new guy" at one time and can relate to the unwelcomed journey you've be put upon. I'm happy you found this resource -- there are plenty of caring, knowledgable, and helpful people here to walk alongside you. 

The C-word "sucks!" It's hard on you and your family. But it's manageable. Take hope in the success stories here in the forum and on the individual user-profiles.

Best regards

Iggyrip

icemantoo said:

Nodes to the lung

Iggy,

Many of us both inside and outside the club have nodes on our lung. Not necessarily as part of Kidney Cancer even thou it often spreds to the lungs ffirst. Those under 8mm and show no growth between scans are normally considered harmless. If some of them grow or misbehave the reason for the scans is to catch them and treat them before they misbehave. In my day 14 years ago the initial diagnoses of the chest was by chest x-ray which does not pick up nodes under 8mm. My chest CT's were for other issues 10 years later which picked up harmless small nodes.

 

Icemantoo

Thanx Iceman,  I appreciate

Thanx Iceman,  I appreciate you commence. This is concerning to me. I was hoping with the size under 7cm, it could be Stage One. My Dr. says even at my size under  6cm, it can progress. The hard part is waiting until my next CT and hopefully, a disgonosis. The group here has given me a lot of hope and information. I believe the best information comes from patients who have been there.

 

Thanx to you and all on this site for your time and information.

 

Iggy

Allochka

Sorry that you should be here

Sorry that you should be here, but welcome nonetheless!

this forum is really a life saver!

Your tumor sounds very "Stage 1" to me. And as Iceman said, harmless nodules on lungs are very common. I hope  your chest CT will clearify things for you quickly, you'll get your curative kidney surgery and go on with your life!

todd121

Staging from Imaging

Hi Iggy,

It sounds like you have a careful oncologist guiding your care. That's terrific.

They can't fully stage your tumor until it's removed from your body. That's something that really surpised me, so I make it a point to tell everyone. Your prognosis is going to not just depend on size, but also the type of cancer (if it is cancer) and whether the tumor grew outside the kidney or not. They can't really figure this out with imaging alone. They need to get it out, slice it up, and look at it under a microscope. They call that a "pathology" report, which you'd get after having the tumor removed.

There are all kinds of things it can be, some very benign and not so common based on the size and the way it looks. Some more serious. The thing is these first findings based on images will be guesses. They might be even good guesses.

It's good she's doing imaging on your chest. Are you having a CT with contrast? For RCC that's kind of the usual way most of us go. The most common places it spreads are lungs, bones, other organs like liver.

Your tumor size alone (if it even is a tumor) suggests Stage 1. However, it's not a bad plan to look around. I had a CT of my chest too. My tumor was a little larger than yours at 6.9 cm (just below that 7 cm threshold where it moves to Stage 2).

Don't panic. There's lots of treatment options. Smaller tumors wholly contained in your kidney aren't very likely to have spread.

Did you talk to the urologist yet about surgery? What are your options on the surgery? More and more they do what's called a "partial" nephrectomy that can save part of your kidney. I wasn't a candidate for that because my tumor was right in the middle of my kidney and that's where the blood supply enters/leaves the kidney. Some urologists don't do partials. Some don't do laparascopy. Shop around if you need to to find the best available. Experience counts. The best trained urologists are usually called urologic oncologists. They have additional training in kidney masses and robotic assisted laparascopy surgery.

Hope you find some of this information helpful. My tumor was found 4 years ago. I was diagnosed Stage 1 before my surgery and Stage 3 when the pathology came back because the tumor had grown into some of my blood vessels. This is not very common. However, I was really shocked and pissed off when I discovered that the imaging was not sufficient to fully diagnose the stage. I would rather have had an explanation that the staging based on the imaging is preliminary.

Try not to worry about outcomes. Getting used to the unknown is part of this process. Everything is going to be just fine!

Wishing you the best,

Todd

duster10

Staging yourself

I was diagnosed about a month ago.  I was so determined to "stage" myself.  To me, that was one of the most important things.  To put things in perspective, I was told my tumor was 10-11 cm, and after having my right kidney removed (9 days ago), I was told it was closer to 15cm.  I will find out the exact size once I sit down with the uroligist in 2 weeks, but my focus was on getting the darn thing out, and then fiding out the next steps.  

You are in the right place by being on this board.....these people in here are aces.  Ask questions, no matter how stupid they might sound.......if you dont believe me, read some of my original posts.  Nobody is judging and people want to help, me included.  

 

Also, when/if you have your surgery, the advice from Jan4you about getting some lumbar support is really really good advice.  I had open surgery thru my stomach, but the back pains have been as bad, if not worse than the stomach pains.  Its all bearble, but anything you can do to create some additional comfort is a good idea.

Iggyrip

todd121 said:

Staging from Imaging

Hi Iggy,

It sounds like you have a careful oncologist guiding your care. That's terrific.

They can't fully stage your tumor until it's removed from your body. That's something that really surpised me, so I make it a point to tell everyone. Your prognosis is going to not just depend on size, but also the type of cancer (if it is cancer) and whether the tumor grew outside the kidney or not. They can't really figure this out with imaging alone. They need to get it out, slice it up, and look at it under a microscope. They call that a "pathology" report, which you'd get after having the tumor removed.

There are all kinds of things it can be, some very benign and not so common based on the size and the way it looks. Some more serious. The thing is these first findings based on images will be guesses. They might be even good guesses.

It's good she's doing imaging on your chest. Are you having a CT with contrast? For RCC that's kind of the usual way most of us go. The most common places it spreads are lungs, bones, other organs like liver.

Your tumor size alone (if it even is a tumor) suggests Stage 1. However, it's not a bad plan to look around. I had a CT of my chest too. My tumor was a little larger than yours at 6.9 cm (just below that 7 cm threshold where it moves to Stage 2).

Don't panic. There's lots of treatment options. Smaller tumors wholly contained in your kidney aren't very likely to have spread.

Did you talk to the urologist yet about surgery? What are your options on the surgery? More and more they do what's called a "partial" nephrectomy that can save part of your kidney. I wasn't a candidate for that because my tumor was right in the middle of my kidney and that's where the blood supply enters/leaves the kidney. Some urologists don't do partials. Some don't do laparascopy. Shop around if you need to to find the best available. Experience counts. The best trained urologists are usually called urologic oncologists. They have additional training in kidney masses and robotic assisted laparascopy surgery.

Hope you find some of this information helpful. My tumor was found 4 years ago. I was diagnosed Stage 1 before my surgery and Stage 3 when the pathology came back because the tumor had grown into some of my blood vessels. This is not very common. However, I was really shocked and pissed off when I discovered that the imaging was not sufficient to fully diagnose the stage. I would rather have had an explanation that the staging based on the imaging is preliminary.

Try not to worry about outcomes. Getting used to the unknown is part of this process. Everything is going to be just fine!

Wishing you the best,

Todd

Todd, Thank you so much for

Todd, Thank you so much for this priceless information. It has taken a lot of worry or my chest. I will be seeing my Oncologist and Urologist after the CT scan. Now, I have an idea of how they make the determination of what Stage I am in.

I am so happy I have this site for information and support.

Thank you again,

 

Iggy

 

 

Iggyrip

duster10 said:

Staging yourself

I was diagnosed about a month ago.  I was so determined to "stage" myself.  To me, that was one of the most important things.  To put things in perspective, I was told my tumor was 10-11 cm, and after having my right kidney removed (9 days ago), I was told it was closer to 15cm.  I will find out the exact size once I sit down with the uroligist in 2 weeks, but my focus was on getting the darn thing out, and then fiding out the next steps.  

You are in the right place by being on this board.....these people in here are aces.  Ask questions, no matter how stupid they might sound.......if you dont believe me, read some of my original posts.  Nobody is judging and people want to help, me included.  

 

Also, when/if you have your surgery, the advice from Jan4you about getting some lumbar support is really really good advice.  I had open surgery thru my stomach, but the back pains have been as bad, if not worse than the stomach pains.  Its all bearble, but anything you can do to create some additional comfort is a good idea.

Thanx Duster, I appreciate

Thanx Duster, I appreciate your advice. I now realize that my Stage will be determine later.

Take care,

 

Iggy

Teashea

Iggy

What a scary time for you. Wishing you good catscan results. Try not to worry and just take one day at a time or it will get overwhelming. God bless you.

love_of_my_life

Iggy

My wife was diagnosed in 2012 and had her right kidney removed.  So far so good.

Keep the faith and stay positive (I know its hard).