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5 years Ned officially told I'm done with the scans

Posts: 80
Joined: Aug 2016

Had my 5 year scan back in February. Was told I'm all done no more scans , no more follow up. I'm now normal and only need to see my Doc once a year for my annual c/up. Doesn't seem like I'm normal. I don't feel normal.  At least mentally. Cancer is very difficult to deal with mentally and emotionally. But I do feel better than I did. I hated the scans . I always thought they kept it fresh and stopped me from moving on. They caused me so much fear and anxiety and now I feel uneasy that I will not be having them any more.  Crazy ! I have been very blessed and live each day to the fullest . Cancer has had an impact on me physically and mentally. I now only have 1 kidney , my joints are damaged , and I now seem to have allergies even though I have never had them my entire life untill the cancer. The biggest issue is the horrible health anxiety.  I'm getting better though with time.  I'm sure there are many others that have had the same experience as me. It's been almost 5 months since my last scan and I'm starting to feel better emotionally. I think for most of us the hardest part of the whole journey is the mental aspect of it.  

Just wanted to share . It's not aways a death sentence and life does go on. It does get better . 

Posts: 67
Joined: Jul 2013

My son was T1a chromophobe six years ago and his dr. has released him. No more scans. 

icemantoo's picture
Posts: 3331
Joined: Jan 2010

I would discus with your doctor ultrasoungs after 5 years and or get a second opinion.





Bay Area Guy's picture
Bay Area Guy
Posts: 498
Joined: Jun 2016

Agreed.  In terms of five year scan limits, I don’t know if the medical community is driving it based on science or if it’s Insurance companies not wanting to foot the bill For a CT scan.  I was told at my appointment this Past Monday that next year (my fourth anniversary) would be my last required CT.  When I go for next year’s appointment, I am certainly going to ask about future scans, either by CT or ultrasound.  While I understand the odd# of a recurrence of my type of cancer is very small, the fact that it is a number greater than zero means I want to b3 active in monitoring myself.

Posts: 80
Joined: Aug 2016

I think it's mostly insurance companies not wanting to pay. Im going to talk with my doc and about us every other year 

Positive_Mental_Attitude's picture
Posts: 454
Joined: Jul 2014

I had a 2.9 cm tumor removed 5 years ago this month.  As I understand from my nurse practitioner at Memorial Sloan Kettering, there is no plan to stop my annual scans, and I am glad for it. As far as the insurance cost, we have a $6-7,000 family deductible, and we rarely use doctors/hospitals.  I don't see how my insurance company could balk as long as I am not costing them anything.

Posts: 80
Joined: Aug 2016

I had 11.7 cm stage 2b chromophobe. I have already had 9 scans. I was 37 when first diagnosed. I'm now 43.  I hope I have at least 20 more years  . That would be a lot of radiation. I don't know , the standard of care for chromophobe is after 5 years nothing else . Chromophobe is much different than clear cell . I think I will try to do a us every other year and pay for a Ct scan out of pocket every 3 years . 

Posts: 32
Joined: May 2019

The Dr. mentioned the same to me and asked me to have a scan every two years

stub1969's picture
Posts: 888
Joined: Jul 2016

My tumor was a little over 5 cm, fully contained, but I had positive margins.  My next scan (tomorrow) is my first on the annual scan schedule.  I've asked my doctor about a long-term schedule and he hasn't been real clear about it.  I plan to ask this again when I meet with him (or a member of his team) tomorrow afternoon while reviewing my results.  I have the same perspective on long-term scans as Iceman and Bay.  An US may be an option and is well worth checking into.  

By the way...Congratulations on 5 clear years.  


Posts: 80
Joined: Aug 2016

Hope your scans went well Stubs !

AliceB1950's picture
Posts: 111
Joined: Jun 2019

How about looking at it as you HAD cancer five years ago?  All follow-ups have been clean, so put that episode to bed once and for all and get on with life.  If you were a low stage and grade, it means you had a treatable disease.  They treated it, followed up, and now you're done with that part of your life.  Do you worry this much about everything else health-related that could possibly, eventually go wrong?  Get out there and live.  Don't let cancer be a permanent albatross tied around your neck.

Ella17's picture
Posts: 11
Joined: Apr 2017

It is wonderful news that you are at 5 years.   I understand how you feel about scans, I find them stressful (I am scanned every four months).  Congrats!

AnnissaP's picture
Posts: 632
Joined: Sep 2017

Yes, the metal repercussions last way longer than the physical for some. Thank you for sharing!

Posts: 80
Joined: Aug 2016

That's great advice Alic B , your right its time to move on.

Hd67xlch's picture
Posts: 152
Joined: Apr 2016

But you should still have a yearly chest abdomen pelvic scan.  I went 5+ years before it came back on me and I was stage one grade two, there are plenty of people it came back on after 5 years . What’s a scan take a hour of your time a year for peace of mind. Good  luck 

Posts: 1
Joined: Jan 2015

Thank you for your posts.  Just had my 5 year scan and result is clear.... waiting to see the surgeon. So will ask about forward checks.  Yes it has been a hard 5 years.  As retired physician got to appreciate how different it is on the other side of the desk. Defintely the mental health effect is hard.  Thanks for the advice of getting on.  That is what i am hoping to do.

Stevewmass's picture
Posts: 37
Joined: May 2012

2012 I was stage 1 grade b for RCC CC had a partial right nephrectomy. for the past few years I was getting ultra sounds on kidney and a yearly scan to follow a nodule in my lung. The ultra sound came back no problems, but a few mopnths later the ct scan showed metastized RCC to my left adrenal gland and the lung nodule grown.. I thought i was safe from the Kidney cancer after 7 years, July 31st surgery to remove the adrendal gland and part of my pancreas. and part of my right lung will be removed Sept 17th. All were found early so surgery should be all i will need. I don't want to scare anyone, but please stay vigilant.




Manufred's picture
Posts: 241
Joined: May 2017


Sorry to hear abut your latest devleopment but I agree, you can never be sure it won't come back.

Best of luck with your treatment.  Did they not consider immunotherapy to fix your mets?  Worked for me.

Best Wishes, Fred

Posts: 23
Joined: Oct 2016

I left my doctor's office in 2011 and I was told to have scans every two years and he released me. 2015 came a call from from my family doc and he said, something is showing on your right lung. I've been dealing with this since 2006 and now I'm stage 4. Please get scans once a year. Good luck

AnnissaP's picture
Posts: 632
Joined: Sep 2017

I just saw my oncologist and he said I will have scans under him for 5 yrs then we will discuss whether I remain with him or see my family doctor for follow-up scans after that. He said  kidney cancer does tend to come back. Even though I have a low chance I still need to be monitored for many yrs. I agree with this seeing as how I apparently had the cancer for 6-7 yrs and had no clue. I definitely want to keep an eye on things.

Posts: 80
Joined: Aug 2016

I understand the importance of scans. I agree they are important . The issue is all the docs and insurance companies say after five years there is no longer a need for scans. Chromophobe is a very different form of kidney cancer . I think going forward I’m going to try to have a ultrasound every second year and a scan every three. I would have to pay for it out of pocket though . No insurance will cover the tests as all literature for chromophobe states  after 5 years no need for scans. 

Posts: 80
Joined: Aug 2016

Stevewmass, I hope your surgery went well and you are doing well.

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