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What cancer patients, their families, and caregivers need to know about COVID-19.

Does it always come back?

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

The stats say 1 thing but all I ever read is that it came back , no matter the size, grade or stage!! It makes a person wonder if the stats are just to give hope and not based on real life..I'm 14 weeks out from Left open partial and doing pretty good but already sick of waiting for my bad news! Is it that people that are NED quit posting on different websites so they can get cancer off their minds? I don't know what to think anymore...

I do wish everyone the best of luck and pray daily for all cancer folks to be blessed!!! CHEERS TO THE GOOD LIFE!

Hd67xlch's picture
Hd67xlch
Posts: 147
Joined: Apr 2016

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

stub1969's picture
stub1969
Posts: 817
Joined: Jul 2016

I must have read the stats differently.  When I was originally diagnosed, Dr. Google shared her stats with me.  Talk about doom and gloom.  When I met with my surgical team they gave me a 95% figure for being "cured".  I held on to their words like precious gems.  Finally, a little hope. 

Hang around this forum for a while.  You'll "meet" numerous people that have not had a reoccurance.  They continue to give me hope.

Take care,

Stub

 

DreamOnDeb
Posts: 112
Joined: May 2017

No, it does not always come back.

Bay Area Guy's picture
Bay Area Guy
Posts: 390
Joined: Jun 2016

Depending on the particular brand of RCC as well as factors related to the size and location of the RCC, there are different statistics for return.  I had a 1.7cm lesion that was diagnosed as chromophobe.  The stats say that it comes back in less than 5% of cases.  My surgeon said it's virtually unheard of for it to come back or to spread to other areas of the body.

As for other types of RCC, I'm not sure of the stats, but it's absolutely the case that it does not always come back.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

jazzgirl's picture
jazzgirl
Posts: 152
Joined: Nov 2017

Thanks, Stub for those words - I hear my surgeon's voice giving me hope.  Trucker, I can only tell you that I am barely 1 1/2 years out from right open partial and feel like a newbie to this condition compared to many others on the site.  Yes, once in a while I do get dread and anxiety in the night (and sometimes day) thinking about what might happen, but for the most part I chug along on part of one kidney and feel, as you say, blessed and living the good life.  Come to think of it, the middle of the night is when I'm most likely to be reading posts here, finding comfort and helpful information.  Thanks to all of you for continued encouragement.  

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

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

APny's picture
APny
Posts: 1969
Joined: Mar 2014

Does it come back? Unfortunately it can and does for some, but certainly not for everyone and it is not a given that it will. At stage 1 the odds are good that it won't but unfortunately there are no guarantees. It's just unlikely to but we can't rule that possibility out. I don't know what you mean by that "all you read is that it came back" but if you mean on various support forums like this, people whose RCC never comes back may be less likely to continue posting. They move on. So the sample you're seeing might be self-selected in that people whose RCC returned may be seeking further info on treatment, etc.

icemantoo's picture
icemantoo
Posts: 3242
Joined: Jan 2010

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

Lisa7610
Posts: 11
Joined: Aug 2010

I’m not good with all the terminology but I vividly remember my surgeon telling me that I had the worst and most aggressive cancer you can get and that it would most likely come back within 5 years somewhere in the upper part of my body. I had a partial nephrectomy in March of ‘08 and the kidney died within the 1st year. I’m still alive with no reoccurrence, almost 10 years later. The worst part for me has been that my right abdominal muscles split WIDE apart (from above my rib cage to my hip bone and from my belly button to my far right side). There is one very thin layer of the top muscle that is attached but it’s stretched as thin as it can go and not functioning—it’s only there holding my organs from spilling completely out. I’m back here now in search of others who may have this same problem. I can’t keep living like this. My back, hip, and leg muscles have been compensating all these years just to support me from one sitting or lying position to the next. I live an extremely sedentary life because of it. My overall health has suffered greatly because of barely being able to move. If anyone reading this has this problem or knows of anyone else who does—here or anywhere, please contact me. LisaRenee7610@gmail.com

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

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's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

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

DAC677's picture
DAC677
Posts: 60
Joined: Feb 2017

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.

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

Some weeks I'm better than others! I go from not thinking about it and living life to can't stop thinking about it. My 1st set of scan are on Wednesday Feb 28th...I eat pretty well, Walk / jog as much as possible but still like to have a few beers on the weekend specially when the weather is 70 plus here in the blue Ridge mountains in Feb!!! The great outdoops is refreshing to the soul!

Thanks for the positive comments! !

Mighty Frog's picture
Mighty Frog
Posts: 143
Joined: Jul 2017

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.... 

 

lobbyist0724's picture
lobbyist0724
Posts: 398
Joined: Sep 2016

Below is what I captured from a KC patient advocate and just want to share it here.

-------------------------------------------------------------------------------------------------------------------------------------

"...

"kidney cancer always comes back" and then someone saying "my surgeon said it rarely comes back" (sorry, but I can't find out where that was, but I was off galivanting and now want to try to make sense by saying that BOTH are correct:

-- kidney cancer is not "kidney cancer" -- it's widely different from one subtype to another. Some types (e.g., chromophobe) hardly ever metastasize. Others (like papillary Type 2) are very aggressive.

-- Even within the "garden variety type" of clear cell renal cell carcinoma, a whole lot rests upon the STAGE and GRADE of your tumour. For example, a patient with a small tumour (T1A) has about a 95% chance of never having a recurrence. Those numbers fall quite a bit for the larger tumours (>7 cm) and particularly if they are High GRADE (more aggressive).

With all of that in mind, it's perfectly rational for one person to believe that kidney cancer always comes back (especially if you go on websites or FB pages for RCC where it is mostly people who are dealing with advanced disease... it's hard not to think that that is happening to everybody). But the truth is that in Canada there are over 20,000 people living today who had a diagnosis of kidney cancer within the past 10 years. The vast majority of those are living their lives, going to work, and not posting about kidney cancer anywhere. As long as they are following up (the Guidelines say for 5 years... longer in some cases), then they are good to go.

However, it's also true that of those (of us) who had a nephrectomy and then recurred later, almost all of us were told "I got it all"... and so we naturally bring this perspective of "be vigilant", "stick to your scan schedule"... etc. If your disease does come back, we want you to find it early when it is most treatable. 

When it doubt, take a look at the Canadian Guidelines (posted on this site under Patients/Caregivers...) for Follow-up after Nephrectomy. You'll find a chart (table?) with 'x' beside recommended frequency of scans that depends upon your tumour staging etc.

In the U.S., there are lots of folks getting a LOT of imaging (PET scans -- for which there is no evidence for RCC, except for Papillary), and frequent MRIs etc. In Canada we tend to be a bit more "evidence-based"... and so the Guidelines are the collective work of the kidney cancer experts across the country, and pretty similar to the European Guidelines.

Hope that makes sense. So in summary: it never comes back, and it always comes back. The best way forward is to stay on top of the information... keep to your appointments, and remember that your case might be a bit different than the ones you've been reading about.

..."

CRashster's picture
CRashster
Posts: 230
Joined: Mar 2017

If it does, we're all in trouble!

HDPete
Posts: 14
Joined: May 2017

What do you mean except from Papillary? Or should I say why for for papillary?

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