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Scanning.

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

after my next scan, I'm thinking about not scanning anymore. It's been over a year, I'll have 3 good scans behind me. It just seems like an unnecessary money drain. What's your opinion?

icemantoo's picture
icemantoo
Posts: 3362
Joined: Jan 2010

CR,

There have been members whose results came back RCC 10 years later although most mets show up within 3 years. Your odds of course depend on the size and grade alternative. Talk with your Dr. about altrasound alternatives which is the scan typical after 5 years.

 

Icemantoo

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

its not really just a money thing. Its kind of a quality of life thing. Everyone always worries about their scans, it's an emotional thing Too. I can't explain. I'm tired of worrying for maybe no reason.

icemantoo's picture
icemantoo
Posts: 3362
Joined: Jan 2010

CR,

 

The object of a scan is to pick up something early befor it effects your quality of life.

 

 

Icemantoo

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

In time, the scanxiety lessons.  I am 5 years from diagnosis, and 4.5 years ned.  I am at six month scans, after the next one, it will be one year.

I assume CT on your avitar is your image.  If so, the acorn shaped kidney had a big tumor (the hat of the acorn).  You were easily stage II.  

You got lucky.  But you need to remain vigilent to stay lucky.

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

it was big. Doctor never discussed stage. It did permeate the fat layer, but no mets. I figure stage 3.

daisybud's picture
daisybud
Posts: 521
Joined: Jan 2016

I guess I think of it totally different.  I am worried that at the 5 year mark they will stop the scans.  The stress of the ct scan is hard for me but not knowing is so much worse for me personally. I got the urologist to agree on yearly ultrasound scans indefinitely. Even though I am worried they're not enough. Ultrasound did not see the tumor for me and continued pain led to ct which found it. I think followups are very important.

 

 

jason.2835
Posts: 337
Joined: Nov 2014

CRashter,

Judging by the picture of your scan in your profile (and it's hard to judge your situation because you haven't updated your profile info; I highly recommend you do that it helps members help you) I would say you had a 7-8 cm tumor?  Even though I only had a 2.8cm tumor, I am not interested in ever stopping scans.  

Yes, it takes a psychological toll.  Yes, it costs money.  But the chances that a doctor can help you when a met shows up early rather than 2 or 3 years down the road are infinitely greater.  I had a horrendous time with my last scans... they called me back for more pictures because they wanted a closer look at something... and even though those 24 hours were some of the worst of my life I will still get scans religiously every year.  

It is all we can do for our families that we remain vigilant and stay on top of this.

- Jay 

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

it may seem weird, but I don't know how big my tumor was. The doc said the size of an eggplant. Others here know way more about their tumors then I know about mine. It was also aggresive clear cell cancer. That's about all I know about it.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Well I understand not wanting the scans. My surgeon/Urologist told me he always does this blood test which shows him if there are any changes suggesting increase in cancer cells. So there's that test in the meantime.

Hang in there, Jan

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

you worry about the scans, you think about the scans, you wish your scan was tomorrow, yet you're scared to death of it. Everyone of us knows exactly when their next scan is. It's always on our minds. Yes, a scan saved my life and it may happen again. What if I have mets to the brain? They don't scan my head. Its like our lives happen between scans. It seems crazy. If the cancer comes back, it comes back. If it doesn't, I'm good.

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

They don't scan your brain because of the way RCC spreads and the mechanism of metastatic disease. All cancers have a tendency to travel to certain areas. While RCC can go to the brain, the chances of it going there first and only there without being in lung, bone, or other read is fairly small. That's why we do abdomen and pelvis unless symptoms warrant further.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

If I were you I wouldn't risk it.

It's been almost three years since my diagnosis and I'm aware that it migh come back even ten years later, I prefer to catch it as soon as possible

Hd67xlch's picture
Hd67xlch
Posts: 152
Joined: Apr 2016

I went 5 years without rcc returning on me, on what was going to be my last scan (5 year mark) , they found rcc lung mets. Had them surgically removed and all is good again. Ive read of others going 10 years before it showed back up. Or you could be lucky like my step dad he went over 30 years and rcc never showed back up on him, but he had scans every year. Good luck with whatever you choose.

 

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

To me, keeping up with the scans would be less anxious than going without scans.  Catching RCC early is everything and all of us have a significant risk of recurrence.  Please reconsider.

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

While I believe in lifelong imaging, I actually think it's less the 10 year and more the 2-3 year you should be so concerned about. As someone that does this for a living, I can't understand the mindset. The short term worry for a few wars in exchange for life for many, many, years seems like an easy choice to me. If something is caught early, you can likely be treated. If caught late or not at all, perhaps you'd wish for those scans. You can always speak to your physician about spacing them out a bit more or doing other sorts of imaging. Everyone has to make the best decision for themselves and I think we will all respect that. However, I would really suggest you find out more about your cancer: stage, grade, size. Then, you can do your research and make the best decision for yourself. 

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

but I don't have that much interest in my cancer. It's not that I don't care, but it's more like something I can't control. It had the perfect chance to kill me, but it didn't. Will it kill me yet? Maybe, but I feel like I can't really control that either. I'm done worrying about stuff I can't control.

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

You can't control it, no. A surgeon can in many ways though. Supposed a lung met developes, it is small and a surgeon does a wedge resention of your lung and you are now disease free. It stays because you didn't have scans and that one met sends out more cells and your one met becomes multiple that are inoperable. NOW, you've lost control. Mets propagate, they are not all from the original source. 

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

I hate the scans. I dread the scans. I worry about the scans. Yes, it affects the quality of my life as the day nears and for a couple of days after. But not following up scares me more. It's over 3 years for me and my doc said I can go to yearly scans so once a year I'll deal with the anxiety and stress. I totally get why you want to stop. I hate this %$#@ disease and what it does to us. But I think it'd be foolish to neglect follow ups. Please don't.

donna_lee's picture
donna_lee
Posts: 1020
Joined: Feb 2009

rWhy did you ask what we thought; especially if you had already made up your mind to quit having CT's?  You appear to be totally "head in the sand" about what you've gone through already.  Was that all for Naught?  A waste of your time and money?  Would you rather still have the cancer in you kidney?  Or have it spread, like it could have already done?  And just not grown to a size that is detectable, or causing other health problems?

Only you can make that decision; but at least make it with a full set of information.  And for that you need to querry your Dr. and find out about the cancer you have had, find out the size and type of tumor, the staging that went with it.  Then ask your Dr. what he thinks is advisable.  Only then, make your decision.

'Nuff Said.   Read my bio to find out what can happen.

donna_lee

 

Allochka's picture
Allochka
Posts: 974
Joined: Nov 2014

CR,

you said that cancer is smth you can't control. Well, for me it is different - with regular scans you'll have the control over situation. When caught early, a lot can be treated. Choosing to have scans is being responsible and in charge. Choosing not to - like Donna said, "head in the sand" and passing all control to cancer.

My husband had no hesitations what to choose. He chose follow up and being in control.

Please reconsider

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

To me, it feels opposite. By worrying with the scans and thinking about the scans, THAT seems like the cancer is controlling me.

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

That is letting it control you mentally, you can get help with that and it does get easier. Why did you bother with surgery if you were just going to let it go?

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

I didn't let it go, I had surgery and got it fixed. Great, now that song is stuck in my head.

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

taking up smoking, drinkng, and drugs?  Or is it sex, drugs and rock n roll? Forget the past and LIVE ON! And don't wear your motorcycle helmet.

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

that somebody gets it.

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

I'm fairly sure he was being sarcastic. 

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

me too.

Hd67xlch's picture
Hd67xlch
Posts: 152
Joined: Apr 2016

1. smoking, well just vaping thc oil

2. drinking, nightly

3. drugs, my motto has always been, better living through better chemistry

4. sex, well thats out of my hand, or would that be, thats in my hand , or honestly thats up to the wife

5. motorcycle helmet, LOL, havent wore one in like 30 years, fortunate to live in a free state

6. rock-n-roll was listening to Lynyard Skynyard on the way to work this morning

 

Scans who has time to worry about scans, I spend my life worrying about random drug tests at work. God I hope nobody in the IT dept is spying on  my computer this morning.

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

Bawahaha x 1000......had to laugh out loud at this one. 

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

Paula who I have promised to never forget, used to say,"Better living thru chemistry." also.  Love it. "CH, I've got 2 rallies in june. Yahoo! Talk about chemistry...

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

Hd77xlch, you're hilarious :)

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

Hunter S Thompson that said ,"I wouldn't recommend a life of alcohol, violence, drugs or insanity to anyone but it always worked for me."

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

As a young man, I read quote a bit of Dr. Thompson's work. Old Crow, his preferred whiskey became my preferred whiskey. That stuff is rough. I was joking around with some buddies and we supposed that is what happened to me. The crow was so rough, it bypassed my liver and went straight for my kidney.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

It's like Schroedinger's cat.

You can call it Schroedingers's cancer: Until you have the scans (look inside the box) you both; Have cancer and; Don't have cancer. 

It's not until you take a look that either answer is true. So, if you don't have the scans, you can't truly say that you have cancer.

 

P.S. Who's the little goofball in your profile picture? She looks like she's having fun with you.

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

Except this cat can claw it's way out of the box. 

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

we were clowning.

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

I always tell people that you  are never officially nuts until you see a psychologist.

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

No, seriously, do take all these wise opinions in consideration CRashter.   And I am sure we all get your point of view.  Nevertheless... follow-ups is what we choose.

icemantoo's picture
icemantoo
Posts: 3362
Joined: Jan 2010

Here is a Post I copied from one of the Kidney Cancer survivir Facebook groups.

 

I had my bout with kidney cancer in 2011, they got it all at that time, I went for the first couple of follow up visits and then somehow convinced myself not to go back, big mistake, now I have lung cancer and they are offering hospice already, I just got the results of the biopsy today, I also had a pet scan today because they want to make sure it hasnt spread to other areas, I was fine for 6 years and may have lived a normal life span had I continued going to the dr. Please keep all of your follow up appointments and follow dr orders so you can live a long life.

 

 

Icemantoo

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Exactly this Icemantoo.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Have shared your opinion with your surgeon? Is this your idea? Or as part of your protocol, you have completed the required scans?

I mean, i am finished with scans for this period of my 5 year follow up protocol.

I do get chest x ray and labs and see my urologist every year now. 

Jan

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

Both of these stories are perfect examples of what I'm talking about. One person didn't scan and still had cancer, one person scanned and didn't. If Jan didn't scan, would the outcome be different? Also, if the first person had scanned, would they be cancer free? It seems a roll of the dice. It's also interesting that both are over the 5 year follow up protocol.

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

" Also, if the first person had scanned, would they be cancer free?" Perhaps. We have someone on this forum who had a met to his lung, they found it, removed it, and he's been NED since. As for your question regarding Jan, if Jan didn't scan her outcome would be the same. No cancer. The scanning doesn't alter the outcome for anyone whose cancer doesn't return or spread. It only alters the outcome for those whose cancer does return and/or spread.

stub1969's picture
stub1969
Posts: 934
Joined: Jul 2016

It's in the hands of the patient.  All of us are different.  Different in how we handle a cancer diagnosis, how we adjust to our new life, and how we go about living a life with or after cancer.  I've been sitting back reading and reflecting on both sides of this topic.  I'll freely admit, I'm not at the point that Fox talks about, "looking forward to scans.".  I don't like them...period.  But, for my peace of mind and for the peace of mind of my loved ones, I'll continue to follow-up with regular scans.  Although I don't agree with CR, I know he has put a lot of thought and research into the position he is willing to take.  I'm sure he has also involved the people that love him and support him with this decision.  I respect that; as we all should. 

That's my two cents.

Stub

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

While I absolutely disagree with the sentiment of skipping scans, I agree that everyone is entitled to their opinion and should be supported. I also feel as if this post has run its course and should probably be done now. He has made a decision, some have voiced concern and some have voiced support. I think now it's time to support a member not a decision (if we don't agree) and move on to doing just that. 

lobbyist0724's picture
lobbyist0724
Posts: 471
Joined: Sep 2016

I guess we have to understand what is considered a "come back". For the stage 4 patients, they have "Clinical evident" of metastases since diagonosis. For all others who were told "clinically cured", but microscopically "might" not! For small mass, chance is small, but for larger or more agressive tumors, chance is bigger. The scan allow one to catch it early when one already have microscopic metastases (it is a done deal based on the surgery date, but no body knows for sure). For the other lucky ones, yes, they don't require any scan since there is no microscopic metastases. So if one can tell that she/he doesn't have microscopic metastases, then there is no need for scan at all!

Problem is that there is no way for you to distinguish yourself between the two, so we can only follow the recommended schedule to try to catch it early "if and only if" we want to catch it early.

The decision is very personal, some like to make sure they'll find food while they still have the energy and before they get hungry; but some might decide to wait until they get extremely hungry then will start to find their prey. Some wanna be on top of things and some might say let's put it behind and will deal with it after it comes back. There is no right or wrong answer but there will be no room for regrets for this matter.

I personally choose the more rigourous schedule than recommended since I wanna be with my little ones as long as possible, watch them grow up, be there for them when they need me.

Wish you all well! Carmen

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

 

Has nothing to do with the topic and sorry for the slight thread jack, but I notice that lately the word “a$$” has been censored to the point that we can’t even type amba$$ador (in another thread) or ma$$ (lobbyist's post above) without it being removed and replaced by stars. It’s kind of silly on an adult forum, IMO. If someone needs to mention the size of their tumor and refers to it as a ma$$ I don’t see the need to censor it to where we see something like “my m*** was 4 cm.”

 

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

I've read every post and I appreciate everyone voicing their opinion. I've also enjoyed the conversation. I'm going to have long talks with both of my docs, although I know what their answers will be. Thank you all.

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

I'm so glad to hear you will be talking to your doctors to help make your decision. 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

To clear up my post: CR you misunderstood MY response.

I AM following all the criteria for the required 5 years post RCC Nephrectomy.

I no longer are REQUIRED any more scans but still do the labs and lung xray. AND he follows up on any signs/symptoms.

I have past 3 years of the required 5 years for my case.

Jan

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