Does it always come back?

My step dad had his left kidney removed when he was  50 something he then when on to live 30+ more years and it never came back on him. Good luck

No, it does not always come back.

I looked at your bio and it appears you were Stage 1? Based on the size, it's Stage 1, but that's not the only indicator. The type of RCC, the Stage (which is based on size and where it grew into, a combination of those two things) and the Grade (this is a measure of how abnormal the cells were, 1-4, 4 being most abnormal and most aggressive), then they can give you a prognosis. This prognosis just tells you the odds. It doesn't tell you what will happen.

For example, if you flip a coin, the odds are 50/50 it will be heads. It means you have a 50% chance of it being heads and a 50% chance of it being tails. The odds of it landing on the edge are so impossible, we don't even think about that case. If you're interested in it being heads, you'd say you have a 50% chance of it being heads on your next coin flip. This doesn't tell you whether it will be heads on the next coin flip. Then you flip the coin. Only then will you know what happened. The higher the odds, the more likely it will happen. Still that also doesn't tell you what WILL happen.

If you're Stage 1 and Grade 1-2 (even 3 maybe), you only have somewhere around a 5% chance of it coming back. That's a 1 in 20 chance. It's not likely, but personally, I don't care for everyone here who keeps saying you're cured and you don't need to worry about it anymore. No. 1 in 20 is still a pretty high chance of it coming back.

On the other hand, 95% chance that you're cured. That means 19 out of 20 people in this condition will never have another tumor. That's really good news. Right?

Even with a Stage 1 and Grade 1-2,3, (I'm talking about clear cell now, with other types it's very, very different odds. There are some very aggressive other types of kidney cancer.) you should do followups and I'd say your followups should never stop, because they have no statistics to say that with Stage 1 Grade 2, for example, that it won't come back in 15 years. There's nothing in RCC studies that show you can completely stop worrying about it after 5 years (like there is in some breast and other cancers). The 5 years is not applicable to us. I personally know a few people that had Stage 1 and it came back 10 years later. I even had a friend recently that a recurrence in her lung 20 years later.

Be vigilant. Try not to worry about something that isn't likely to happen, but keep up on your followup CT's. Don't let ignorant doctors talk you out of your followups. The national standards are probably not good enough on followups. I'd push them even after 5 years to continue a chest/abdomen/pelvic CT annually. I'm not a fan of ultrasounds. They aren't accurate enough to catch early RCC, particularly on the bones or small tumors in the lungs, and these are very common for places for this stuff to spread.

Hope this helps.

Best to you,

Todd

I just had my first 3 mth scans today. Am I worried? Not really. Am I prepared? Now that's a different thing. We've all had the dreaded "we found something" call so now my brain is kinda wired and ready for it again. I don't think I am negative about it, but I look at it this way - I never imagined I would ever have cancer in the first place....So..now I would not be surprised if it ever came back. Statistics don't have me anywhere in the picture for even having kidney cancer in the first place so I don't really trust them. They are a nice guideline, but not everyone can be put in that box. Having said all of that...whether it does or does not come back all we each have is today. Yesterday is gone and tomorrow doesn't exist...Enjoy...Right..Now

For most of us with small tumors it is unlikely to come back. The purpose of scan followup is to nip any bad guys in the bud.

Icemantoo

No it doesnt

recurrance is based on stage and type and many other factors. the best docs prefer to stay away from stats because each case is so unique. Im a stats and numbers guy so i pressed. 

you have to know that my tumor for a huge stage 3C tumor. when pressed my first oncologist said 80% reccurrance and 50% moratility rate over ten years. My wife was devastated. As a fighter i still felt I could beat the odds.

But it got even better. When we went to one of the top teaching / research facilities in the nation those doctors scoffed at those numbers. They said maybe the others doctors numbers were accurate 5-10 years ago but things are so much better now. When pressed he said even with my huge tumor and advanced staging at worst my reccurance was 50% and survivability rate was 80% over ten years. If it had been smaller or stage 2 or 1 the odds would have been even better. He also went on to say that each positive scan i pass my numbers improve by 2-3%. After three years of clean scans that take a very sharp uptick that is not that hugely different than a normal person.

That was a year ago. i met with them again yesterday. He explained how fragile cancer cells really are and how well a strong imune system can kill them. he said that while the tumor was in my body and maybe even during the surgery my body sloughed off millions of cancer cells and they all almost died in my system attacked by my immune system. consistant monitoring may find if one or two isnt killed off. Their otions for dealing with those siutations are so much better today than even five years ago.

Cinnamongirl said:

Thanks

DAC677 thank you so much for posting. I think all of us worry about recurrence and that fear is always in the back of our mind. I am scheduled for my first set of scans this Friday and I will not lie. I'm scared. My tumor was 13.3 cm pT2b but grade 3.

Your post gives me hope..gives all of us hope. I am so thankful I found this site and all of You!

Cin

It sounds like we had a similar size tumor and diagnosis. your just about a year or so behind me.

One thing i did mentally that my Oncologist likes is that I took the approach like it was diabetes. Its a condition i now have and will for the rest of my life. But with good diet and exercise and frequent scans and maintenance this doesnt have to define me. Life can go on for a long time and very normally.

dont ever forget that when i saw the experts, some of the best in the world who im lucky to have access to they told me that in 5-10 years both our reccurance and survivability numbers increased by 20-30%. And those  of us going through it now will set the new numbers and records for people to refer to in 5 years. 

We are doing well and will live with this thing just as people know live through diabetes. That doesnt mean we will never get bad news, it means we will handle it and beat it and we are on guard now and the medicine is improving.

I had my LPN on July 2017. Till today and from time to time still can't stop thinking of it. Similar to you some day are good and some day are really really bad till loose your mind....

I was totally  meltdown, i was really not the person i was b4, weak, anger and despression and lost of direction in life in the beginning (after the surgical)..... everyone was worries and affected by mine mood and behaviour......   

Especially when it comes to lunch or dinner.... Can I eat this or not? (I skipped breakfast as part of my intermittent fasting...hahaha less one headache question in the morning)

I know it is REALLy a mental torture.... U worry what if ? & What is going to happen to my love one especially and sudden a pain from no where appear. I know you have read those in advance stages.... it is REALLY frightening. I think everyone here shared the same worries.  

But day by day, I get better as i know i need to keep going with my life and can't let the 'C' ruin the balance of my life. Just eat right & healthy, maintain a ideal body weight and choose a suitable diet which is beneficial to your situation and get into support forum like this one. In here, everyone know better what we had go through. And utmostly importantly scan on time and yearly... don't miss your checkup..... once it is back.... the only option is FIGHT BACK! This is why very important to prepare your body in good shape for the battle. 

I know everyone in the families and friends are worry about me, SO i can't let them down. I must be the one put back the smiling face in them. I always now and there, listen to Micheal Jackson... "Man in the Mirror" if you don't change or help yourself first .....no one can.... I can't let my son, wife and parents living in constant uncertainly because of me.

Live happily & Be Strong! 

Our time now are more limited than ever..... so start planning get a paper and pen writing down all you plan and worries.... it works for me...... hope can help u too.... 

If it does, we're all in trouble!