CSN Login
Members Online: 0

You are here

CSN Outage 7/29/21

CSN will be down briefly for maintenance 7/29/2021, starting at 10pm EST. We apologize for the inconvenience. 

The Need for Constant Vigilance...

jason.2835
Posts: 337
Joined: Nov 2014

Hi, all.  

I've spent only a few weeks here on this forum.  But I must be open and honest about a couple things that have struck me early here.  After my pathology report came in, my doctor was very positive and a little dismissive of the future possibilities of RCC coming back into my life.  (I've talked about the path report, but in the interest that I'm sure more than a few of you didn't see that post, here are the Cliff's Notes: clear cell type RCC, pT1a, pNX, partially cystic, 2.8 x 2.7 x 2.4 cm wide, Fuhrman G2, no necrosis, organ confined, neg margins)

But in reading many posts here, and NOT just the ones where one's Doc told them "It's all out," but also the ones from you guys who are dealing with years of treatments from Stage IV RCC, I now understand that the need for constant vigilance will probably be necessary for the rest of my life.  Being that I'm 35, hopefully that's a long road of vigilance.  But when you're talking about your life, you can't risk it on statistics.  The doctor told me that the survival rate for those in my situation is 98%.  When you hear that number, you obviously breathe a sigh of relief.  

But once a body shows that it can produce cancers in one case, does it not tell one that it can do it again?  Whatever DNA checks are in place for abnormal cells did not work in our case.  So can it happen again?  Yes, this is a negative view of it, I suppose, but I guess my point is this:

As prevalent as cancer is becoming these days, should doctors be a little more reticent to proclaim a person "CURED!" and more likely to recommend constant vigilance, even in cases like mine?  Or am I way off the mark here?  Most of my doctors want to allay my fears and tell me all the good things, all the great statistics and that there's no need for further treatment.  All these are good things, but I feel like nobody wants to talk about the negatives with me... not that I'm morbid, but I don't think I'm out of line when I have questions like:

"What are the chances of recurrence, and in what kind of timetable could that happen?"

"Is there a possibility, no matter how small, that the cancer may have ALREADY spread?"

"What if we catch a metastasis or recurrence early, etc."  

I feel like the docs want to move on, but I've seen your stories here and to say that some of them scare the hell out of me would be an understatement.  I'm an information junkie, so IN NO WAY am I saying it's a bad thing to be sharing them.  I'm just saying that it's hard not let your mind slip back into the worry from time to time. 

icemantoo's picture
icemantoo
Posts: 3335
Joined: Jan 2010

Jason,

 

With such a small tumor, a good path report and a non-aggressive type of tumor you have 2 chances for a problem down the road, slim and none. Because you have had Cancer in one kidney you have a higher chance than the general population of developing cancer in the other kidney. Like 2% v. nil. You also have more of a chance of a health problem from unrelated causes as well down the road which has no relation to your Kidney Cancer diagnosis..

 

When all is said and done your chance of a full and complete recovery from the surgery alone are as good as they get. Those who have developed Kidney Cancer problems down the road after surgery  have invariably started with more baggage.

 

Stay healthy, exercise, keep your weight down, monitor your blood pressure and Kidney function and keep the scans up (usually only ultrasounds after a few years) and you should be around for another 50 years or so. Pardon me if I check out earlier as I am already 71 and do want to check out before I can no longer enjoy life. Another 10 or 20 years is all I ask for.

 

 

Icemantoo

jason.2835
Posts: 337
Joined: Nov 2014

As they say, everybody has to "check out" sometime... Thank you for your "Hunger Games" reference, as well.  "May the odds be ever in your favor..."  No?  Haha, seriously you sound like you will have those years you ask for... I know I'm being dramatic, but to be honest as the time between my MRI and now is, like, less than 3 months the entire experience is still kinda new to me.  I am sure I will get over these thoughts to some extent... never completely, but mostly.  

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Mine was a little larger than yours but pretty much the same description. My surgeon did not say cured, only that I had negative margins and that my chances of it not coming back are excellent. However, nothing is 100 percent and I for one am going to stay on top of it and go for those six month checkups that he’s prescribed for me. Did he get it all? Yes, most likely what was in the kidney, he did. But did any rogue cells break off prior to my surgery and migrate elsewhere waiting to grow into something? Unfortunately that’s possible. I was told 5 % chance of recurrence in kidney; 10 % chance of recurrence elsewhere (mets.) Those are good odds but there’s still a chance. So yes, I’m not complacent and I’ll always stay on top of it.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

These are great questions and ones I asked as well. I was told I had Stage 1 pre-surgery and when my pathology report came back post-surgery as Stage 3, I was pretty damn pissed at my surgeon. I didn't understand the staging system to understand that could happen. My tumor was just under 7cm. The pathology was Stage 3 Grade 3 and clear cell RCC.

I looked at the studies and saw 3 oncologists to ask what the chances were of my cancer coming back and got a consensus among 2 RCC experts that it was about a 40-50% chance of recurring.

There've been studies that have shown that the size of the tumor and grade of the tumor are independent factors for predicting recurrence rates. You had a medium size Stage 1 tumor, and fairly non-aggressive grade 2. The chances of recurrence are somewhere in the 2-7% range. It means you have better than 9/10 chance you won't have cancer again. It's pretty good odds. Then there is the 1/10 or 1/20 chance that you will. Not 0 by a long shot. Worth paying attention to.

Most recurrences occur in the first 5 years. The chances decrease over time, but never goes to zero. I saw a graph that shows that something like 36% occur in the first year, 18% in the second year, 9% in the third year. Something like that. It means about 2/3 of recurrences are found in first 3 years after the initial tumor was seen. RCC can come back years later. It doesn't seem that it's like other cancers and after 5 years you can completely forget about it.

There's a small chance the cancer may have already spread, but not very likely given your tumor stage and grade. There is no test for RCC. They have to wait until a tumor is large enough to see (on a CT/MRI/Xray) or large enough to cause symptoms. Hopefully, your doctor did at least a lung X-ray (CT would be better) and that you also had an abdomen and pelvis CT scan just to make sure you have no other tumors. This area is the most likely area for spreading initially.

Even Stage 1 Grade 2 has some monitoring suggested for the first 3 years. I don't remember what it is exactly. I posted a link not too long ago that gives you access to the national cancer foundation's website where you can read the recommendations. Hopefully you're seeing an oncologist that knows what they are. I'm not so sure urologists will pay attention to this. They tend to say "you're cured" and "we're done" with Stage 1 cancer. I believe it's something like an abdomen/pelvic CT and chest X-ray every 6 months for 2 years, then yearly to 5 years. 

You want to monitor so you can catch it early. Better to find 1 operable met, than 20 inoperable ones. The earlier the better.

RCC is pretty unpredictable in how/where it spreads. That's one of the things that really scares oncologists with this disease. However, there are patterns. It usually spreads to lungs next and/or bones. The bones it usually spreads to are in the main body region (ribs, spine, pelvis or top of the femur). It's fairly rare to spread to the other kidney next unless you have a genetic form of RCC that causes kidney tumors. It can spread to other organs (pancreas, liver). It can also spread to the brain. It's not common to spread to the brain first, but I do have a friend that has RCC and it did spread to her brain first (they found her second tumor in her brain before they saw tumors in her abdomen). It's also pretty common to spread to the abdominal cavity where the previous kidney was.

So, short answer, you're pretty likely to be done with this cancer. In the chances you're not, you'd like to catch it early. I'd see an oncologist that will look up and follow the guidelines. If you search for my post you'll find a link so you can look up the guidelines yourself.

I hope this helped answer your questions.

Todd

jason.2835
Posts: 337
Joined: Nov 2014

Todd,

Thanks so much for the wealth of information. You explained about 95% more than any doctor has... I know their time is valuable to them but, DAMN, I always feel like they're rushing me out of the office... 

I think all that it needs to be considered stage 3 is that it's in the vena cava, even a little tiny bit.  If the tumor had spread that way naturally, it might not mean a whole lot more than stage 1 or 2, just that it's invaded the vena cava.  It's certainly a shock to think you're in stage 1 and then suddenly you're not.  I was supposed to have a partial nephrectomy but it became a radical so I definitely feel you.  You obviously want everything to go according to plan.

My next follow-up with him is a 4-month post-op in Late Feb/early March during which I will have an ultrasound a couple weeks before.  I will certainly ask a lot of questions there to see what the future holds.  My urology surgeon is DEFINITELY in the camp you spoke of; the "we're done, it's all gone" camp.  However, he did say he would be following me himself for the "next ten years."  No one has brought up the prospect of seeing an oncologist. I'm assuming there will be regular peek ins to my interior world.  But I will assume nothing.  I'm seeing my regular doctor later in December and she's very good with questions so I'll bounce a few off of her as well.  I would not be happy with never having checks...   

But I appreciate your thorough information, thanks man.

- Jason   

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I also see a nephrologist every 3-4 months. My creatinine is 1.7, and by definition I have Stage 3 Chronic Kidney Disease. Many of us with 1 kidney are in that situation. Taking care of your other kidney is very important. Monitor your blood pressure. Mine crept up in the months following my surgery. It went from normal/just below high to being actually high. I had to try 3 different BP meds before I found one that works. Your kidneys are partially responsible for regulating blood pressure. Losing one can throw things off. The drug lisinopril helps protect the kidney and lowers BP. I only needed a very small dose. (I tried to others and they were awful.)

You can go from Stage 1-2 to 3 just by having the tumor invade some of the tiny veins or arteries inside the kidney. That's what happened to me. It wasn't evident until they looked under the microscope that I had some minor invasion of microscopic veins. The big difference between Stage 1/2 and 3, is that the tumor has had direct access to the blood supply in Stage 3, and so they believe there's a higher probably of the cancer spreading to other parts of the body

I don't know what H&P is. I saw your next post. I'd expect it to be in the document somewhere? Probably an physical exam of some kind? You should have regular blood work done. I'd see a nephrologist. They'll check and make sure your kidney is working properly.

Watch your Vitamin D level. The kidney is very important for making Vitamin D available to the body. Losing a kidney can throw it off. You may need to take Vitamin D.

Watch your blood pressure. High BP can damage kidneys.

Don't eat too much protein. That can damage kidneys too.

Hope this isn't too much. :)

Todd

jason.2835
Posts: 337
Joined: Nov 2014

Thanks again!  NO SUCH THING as too much... especially when my doctors are being kind of la-dee-dah about it... I haven't been told about any supplements or dietary changes.  To be fair, I haven't seen my primary care doc yet... not supposed to see her until mid-December.  I think that my urologist is leaving that stuff up to her.  My BP was beautiful before the surgery and the few checks I've had since the surgery have shown no change yet.  Hopefully it stays that way.  High BP runs in my family on Dad's side but I've never had a problem with it.  

I was already watching my diet and exercising before I knew about the cancer; I'm down from 235 at the start to 206 today.  I have no aspirations of looking like the The Rock so I can moderate protein intake easily enough.  Most of what I know comes from my own research.  But I think it's mostly my impatience with the speed of the doc appointments.  I'm sure once I see my primary everything will fall into place.  She's got it together for me.  

Btw I looked up H & P; it stands for history and physical, beasically just denotes a normal check up visit. 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

High blood pressure may damage the kidneys but also keep in mind that the kidneys play a key role in setting the BP level to begin with. So it is important to understand why the BP is becoming elevated.  Of course, in many cases it is a common side effect of the various targeted therapies.

Consuming "too much" protein is only a problem if you have kidney disease in the first place.  Consuming normal levels of protein does NOT lead to kidney disease in otherwise healthy kidney(s).  That is a myth.

jason.2835
Posts: 337
Joined: Nov 2014

Nano,

Very good points thank you... As my other kidney is currently healthy I was wondering why the docs hadn't mentioned the protein thing... and I'm sure limiting sodium can't hurt with OR without cancer... But I definitely appreciate the clarification on the protein.  I was very much wondering about that.

My BP was spot on (120 over 80) before all this... Are there any particular warning signs? I do plan on checking my BP regularly on my own but I'm not sure how high is too high...

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

From WebMD:

"When your heart beats, it contracts and pushes blood through the arteries to the rest of the body. This force creates pressure on the arteries. This is called systolic blood pressure. A normal systolic blood pressure is below 120. A systolic blood pressure of 120 to 139 means you have prehypertension, or borderline high blood pressure. Even people with prehypertension are at a higher risk of developing heart disease. A systolic blood pressure number of 140 or higher is considered to be hypertension, or high blood pressure.

The diastolic blood pressure number or the bottom number indicates the pressure in the arteries when the heart rests between beats. A normal diastolic blood pressure number is less than 80. A diastolic blood pressure between 80 and 89 indicates prehypertension. A diastolic blood pressure number of 90 or higher is considered to be hypertension or high blood pressure."

http://www.webmd.com/hypertension-high-blood-pressure/guide/diastolic-and-systolic-blood-pressure-know-your-numbers

jason.2835
Posts: 337
Joined: Nov 2014

Hey,

I did backtrack and find that website; I'm an info junkie so I had to haha

It says for Stage 1 pT1a after radical neph:

H & P (what's that stand for?) every 6 months for 2 years, then annually for 5 years.  Comprehensive metabolic panel same timeline.

 

Patients should undergo abdominal CT, MRI or US 3-12 months after surgery (I am scheduled for one in March) 

Here's the kicker: "If the initial postoperative imaging is negative, abdominal imaging beyond 12 months may be performed at the discretion of the physician."  It also leaves chest, pelvis, head, spine and bone scan imaging all up to the physician as needed.

So it does sound like the testing for patients in my situation can be pretty minimal, depending on how anal the doctor can be?  Interesting.   

APny's picture
APny
Posts: 1998
Joined: Mar 2014

To the best of my knowledge H & P in medicine refers to history and physical exam.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

is what it is.

Srashedb
Posts: 482
Joined: Dec 2013

for your information; it is very helpful. Did I understand you correctly about the abdominal recurrence likelier in the first year?

my husband was dx as stage 4 because it was 10 cm and had two spinal mets. Based on his pathology report and my non-medical background, I assumed that the spine was reached through the renal vein and that the mets' proximity to the kidney (L2-4 and T11). Looking at the images, it looks like the tumor spread left from the kidneY.

thanks again and please anyone who has a take on this, step in.

Sarah

Srashedb
Posts: 482
Joined: Dec 2013

for your information; it is very helpful. Did I understand you correctly about the abdominal recurrence likelier in the first year?

my husband was dx as stage 4 because it was 10 cm and had two spinal mets. Based on his pathology report and my non-medical background, I assumed that the spine was reached through the renal vein and that the mets' proximity to the kidney (L2-4 and T11). Looking at the images, it looks like the tumor spread left from the kidneY.

thanks again and please anyone who has a take on this, step in.

Sarah

Subscribe to Comments for "The Need for Constant Vigilance..."