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CT Scan results

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hello all,

I just want to report that I got an "all clear" result from my scan. Very happy news. The lesion on my liver was stable.

I was stage 3 grade 2 when I had my 13 cm tumor removed via nephrectomy last December. The doctor said he wants to start monitoring me by ultrasound now. I argued a bit with him (I know that everyone here has reported CT scans every 6 months) so he said, okay, ultrasound and once a year CT scan. He said that the CT scan is so high in radiation he doesn't want to expose me to that. He said that one CT scan gives you the equivalent radation of 400 xrays. Any thoughts?

I also asked for my bloodwork numbers. He said they were excellent.

Hemoglobin 112

Creatnine - 86 (does that seem right?)

GFR 60.

Anyway....cause for celebration. I wanted to share the good news.

Hugs,

Jojo

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Awesome Jojo! That must be such a relief.  Time for celebrating!

Phred is having a heart stress test and ct scan next week. Hope our news is as good as yours.

Stay well. Hugs Melissa xox 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hey Jojo,

That is such fantastic news, I am just so happy for you, have a great celebration:) 

I am a little concerned about the data of X-ray ratio to scans though.That would mean by the end of this year I will have had the equivalent of 2400 Xrays in the last 2 yrs, flipping heck! We won't be needing any Christmas lights this year then!!

 

Take care:)

 

Djinnie x

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

Great to hear.  But better recieving such good news. Like DJ, I must have had the equivilent of about 8 thousand x-rays. And that is not in jest. Could that really be true? But I guess I can't complain. Because I am still alive. If that is true, how come I still have hair and teeth?

I'm authentically thrilled for you Jojo.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Yeah JoJo, glad your scan was clear.

What are they doing for your liver lesion? Watching it?

 

And I am proud of you for advocating for yourself.. you go girl!!

Keep on keeping on..

 

Hugs, Jan

aamdsi
Posts: 284
Joined: Apr 2014

To hear your news!  Raise the roof!

 

Laurie

Bellweather
Posts: 100
Joined: Jun 2013

I can fell your excitement, congrats!   My doctor CT 's every 3 months at this point, I would like to know more on this.  Keep up the good work, your good news makes me feel good.

JoanneNH
Posts: 115
Joined: Sep 2013

Have to admit that now I am curious.   I am seen twice a year by oncologists to follow up my RCC, once in Tampa, FL, and the other in New Hampshire.   My oncologist did a chest x-ray this year instead of a CT scan (for my 2nd checkup for the year).  When I asked why, he said to save me from a bit of radiation.   Found this chart, and apparently we get a lot of radiation from our CT scans of the abdomen and pelvis.

 

http://www.radiologyinfo.org/en/safety/?pg=sfty_xray

Srashedb
Posts: 482
Joined: Dec 2013

Joanne, thank you for that chart; do you know when it was put together. I have been researching all afternoon and JoJo's information is pretty accurate. 

i hope I don't get the docs upset but a high risk of abdominal cancer for my husband, even with a stage 4 renal cancer, is not acceptable.

Sarah

2014-10-23

JoanneNH
Posts: 115
Joined: Sep 2013

I do not know when it was put together, but I found at the bottom of the page "This page was reviewed on August 10, 2014."

Srashedb
Posts: 482
Joined: Dec 2013

great news, Jo and after reading your post about radiation amount, I just emailed my husband's doctor asking if there might be alternatives to the frequent scans.

my guess is that a stage 4 patient will get the risk/benefit analysis but after reading about the risk of a second abdominal cancer on the Mayo site, I will demand more than this.

your news about the stable liver lesion without treatment is GREAT, and seems to bear out some studies that note the impact of removing tumor load on merastasi.

Sarah

 

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Way to go!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thank you all for your good wishes. I am happy to share the news with you. We all celebrate together and also support each other in time of need.

As far as the radiation in a CT scan goes, I have been reading up on it. One scan is similar to the dosage of the lowest doses received by some of the Japanese survivors of the atomic bombs. That is a scary bit of information. I have had 3 CT scans this year. I know a lot of you out there have had many more (our glow in the dark friends). These scans are hugely beneficial in finding/monitoring cancer, but we need to be aware of the dangers as well.  

Hugs and wishes for good health!

Jojo

 

Ree_Maryland's picture
Ree_Maryland
Posts: 158
Joined: May 2014

I had my kidney surgery on April 21,14, had two ct scans with contraxt of the chest and stomach twice this year , not due again till April 5th 2015  , Still conerned of to many scans.

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Good news for you!! :-) Party time!!

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

Hi JoJo.  Congratulations on the great news.  However, what sort of doctor are you consulting with?  At this point it should be an oncologist well experienced with metastatic renal cancer.  Nothing less.

Just how big is that "stable" liver lesion?  Regardless, ultrasounds are not acceptable for monitoring stage IV RCC patients.

Yes, we are being exposed to increased levels of radiation.  Yes, that may increase our chances of developing other cancers.  However, radiation induced cancer would likely take years if not decades to develop.  But mRCC can kill within months or a year.

I am concerned that you may not be getting the best medical advice.  Please at least consider getting a second opinion while everything remains stable and under control.

Just my 2 cents.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

My message might have been a little misleading. Perhaps I didn't use the best wording. For that I apologize. The lesion on my liver was never identified as cancer. I am still stage 3. They were a bit concerned on the last scan.  I was scheduled to do an ultrasound this time around but because of that lesion they did another CT scan. Since there was no change in the lesion, they determined it to be a hemagioma .  So the uro-oncologist said from now on we will do ultrasound. I then asked if that would identify any cancer, and he said no but it would be informative in other ways and then mentioned the high radiation. He agreed to a scan once a year. I have mixed feelings about it, but in the Canadian health system, I don't have much say in the matter. I just wanted everyone to be aware of the radiation factor. I read somewhere that someone got a CT scan for broken ribs - futile to do since the treatment for that would have been the same regardless. Why expose yourself unnecessarily - in that kind of case. For monitoring of cancer, CT scans, of course, are necessary.

 

 

 

donna_lee's picture
donna_lee
Posts: 964
Joined: Feb 2009

It's great to hear positive news.  I've gotten soooooo tired of medical appointments this past year.

Most all oncologists are aware of the extra readiation a patient is exposed to with a chest/abd./pelvic CT, as opposed to a chest x-ray combined with an abdominal and pelvic ultra sound.  There is a risk either way.

Having a determination of an hemangioma should relieve your mind a bit.  For the first 3 years, the CT's kept coming back with a large "cyst" in what was remaining of my liver. Finally, during an ultrasound, they were able to catch it in various stages of filling with blood and it's circulation.  It's just a large, vascular "strawberry birthmark" in the liver.  Not a tumor!!!

I'm finally at 1 scan per year, but it's taken a while.

Good Luck JoJo.

Donna

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

Thanks for the clarifications, JoJo.  Let me just explain where I am coming from. In July 2012 a routine scan showed that I had developed bone mets in three locations.  Prior to that I had been "NED" for over 2 years after my left nephrectomy.  I had been stage III - now I had graduated to stage IV.  I was put on Sutent plus Xgeva and this combo worked quite well for the next 14 months. There was no progression and no new mets.  However, in December 2013, another routine CT-scan now revealed the presence of lesions on my liver.  [I should explain that several prior CT-scans had shown one very small hypodense area in my liver but it had not grown and so it had not been considered a met.]  What we all did not understand at that time was these new liver mets were extremely aggressive - unlike my bone mets.

I was switched to Inlyta (Axitinib) in early January. But by early March it was clear that it had done nothing to control my mets at all. I then joined a clinical trial of an anti-PDL1 drug made by EMD Serono.  By the end of May it was alarmingly clear that it too had failed.  My liver mets were now massive and too numerous to even count. After leaving that trial I started on Carbozantinib (Cometriq) but within weeks it became clear that it too had failed.

At this point in time (last June) I had one last FDA approved drug in my "arsenal" - Afinitor (Everolimus).  Nobody thought it would work for me. What I found out (only later) was that had this drug not worked I was just weeks away from liver failure and certain death. However, it did work and it is still working.  My last CT-scan showed shrinkage of all of those aggressive tumors - some by as much as 50%.  I am extremely lucky as that kind of response to this drug is only seen in about 3% of the population.

My next CT-scan will be next week.  At this point I feel great. I continue to be totally pain-free and pain-medication free. I am back to my "normal" self (whatever that means) and thankful for every single breath.  I also don't give a hoot about how much radiation I have been exposed to - as it has certainly saved my life.

So it is for this reason (bitter lesson?) that I feel that any "weirdness" in the liver needs to be monitored very carefully and should require scans at least once every 3 or 4 months.  Scans that can reveal mets and that means something far more effective than ultrasounds.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

WOW, Nano, glad you are pain free and tumors are shrinking!!

I was concerned for you as last I remember you were in such pain and not yourself.

You are a great asset to us!!

 

Warmly, Jan

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Glad to see this being discussed here. Good to hear from you Nano! My husband is chromophobe diagnosis so I follow here carefully seeing what others do in the event we need to move to treatments. T3a, important for follow up. 

Personally, (as a wife not a patient) I feel the fear of the "unknown" potential effect multiple doses of CT scan radiation (as in, it could or could not result in problems) is less than the fear of kidney cancer metastatic disease not getting prompt attention. Perhaps if my husband's tumor wasn't T3A, extensively necrotic I would be a little more wary, but in our case I'll take all the CT scans I can get for him!!! 

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

"Normally" chromophobe is slow growing and not aggressive.  But if it turns aggressive (as it did in Tex's case) all bets are off.  Still, recent research indicates that m-TOR inhibitors (like Afinitor or Torisel) may be effective for us chrommies.  In addition, some new m-TOR inhibitors (designed to overcome drug resistance) are about to enter clinical trials.

I strongly feel that if one has a diagnosis of stage 3 and/or a primary tumor that was 8cm or larger when discovered one must become extremely vigilant.  And this for the rest of your life. I regret that after my nephrectomy no one warned me that I was at a very high risk of recurrance - even though I continued to be NED for over 2 years.

What is forgotten here is that evolution is always at work. Tumors continue to evolve which is why they eventually develop resistance to targeted therapies.  One major reason that everyone is so excited about the new (or old) immune therapies is because they have "memory".  Because of this - when they work - they can provide long-term remission.  Targeted therapies lack this dimension.

For whatever reason, my liver mets were a completely "new" kind of animal and needed to be treated as such.  When they were discovered Sutent was still "working" for me - but only against my bone mets. But Inlyta did not even work against my bone mets.

Thanks for your kind words, Jan.  For several months over the summer I was pretty much totally out of it due to the cancer progression and the pain medications I was taking. Incidentally, I also joined in home hospice and can highly recommend it.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Neil, thank you for sharing your story. It is very informative and I trust your input always. And since the start of my journey with RCC is very similar to the beginning of your story (I realize that everyone's story is very different), that makes me second guess my oncologist's decision. I will be more vigilant and forceful in the use of a CT scan.  Hearing the amount of radiation that comes from one CT scan is alarming at first, but when you say it can take decades for any cancer to form from that kind of exposure, that brings a sigh of relief and gives me perspective.

I continue to learn here - thank you everyone for your input and valuable information!

Hugs

Jojo

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

JoJo - you (and everyone) should never feel intimidated by your doctors or other health experts.  It is proper and correct to question every decision or recommendation.  After all, this is your life on the line - not theirs.  This is why I became so focused on doing my own research.  What you find is that there are plenty of opinions - but little certainty - especially when things start going haywire.

I am certain that most patients will never go through what I just experienced.  But there are no guarantees with this disease. The head of that anti-PDL1 clinical trial told me later that he had been haunted by the possibility that (in my case only) the drug may have contributed to the rapid acceleration of the disease. Of course there was no way of knowing.

But I do know this.  I had forgotten that, as part of the clinical trial protocol, I was supposed to report back to the NIH for a final "follow-up" meeting 2 months after being discharged.  After those 2 months had passed I got a call from the head researcher's assistant - reminding me that I was supposed to come in the next day for that meeting.  Of course I had totally forgotten about it. 

Regardless, my wife and I showed up and then met with the head of the trial. You should have seen the expression in his face that day. He confessed that he had told his assistant not to call my house to schedule this meeting - because he was sure he would "only end up talking to the grieving widow."  But the assistant was brand new on the job and replied to him, "But I already called and spoke to him. He is coming in tomorrow".  He (the head of the trial) was flabbergasted that I was still alive.  Quite relieved too.  :)

CT-scans are not the enemy.  Neither is the "scanxiety" that goes with it.  Metastatic renal cell carcinoma is the foe. Let's never forget that.

Srashedb
Posts: 482
Joined: Dec 2013

not having renal cancer myself, I feel somewhat awkward in writing at all; but, that being said, I will anyway.

Neil, I have read and the oncologist has agreed that Sutent is effective for lung mets but not against bone mets; I have also read that chromophobe is different in its behavior to clear cell cancer. Finally, I thought that TW had sarcomadoid which is the meanest type of renal cancer.

after the initial post here, I went to the latest follow up recommendations and learned that MRIs are very good at picking up mets which can then be scanned for more precision. The first scans should be done within 2 months following surgery, MRIs every 6 months for 3 years then every year. This recommendation was for stage 3 and 4 or as they referred to as medium to very high risk. 

 

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

Nonsense. Of course you are qualified to ask any questions or make any comments.

- Sutent (and other TKI's) can be made effective by combining them with either Xgeva (Denosumab) or Zometa (Zoledronic Acid).  In my case I was getting Xgeva shots monthly.  The combo worked like a charm.  However, Xgeva combined with Inlyta did nothing for me. Go figure.

- According to the very latest research here:

http://www.cancer.gov/newscenter/newsfromnci/2014/TCGAkidneyChromophobe?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+ncinewsreleases+%28NCI+News+Releases%29

Chromophobe shares almost nothing in common with clear-cell.  As such it is amazing that any of the FDA approved medications can work on it.

- TW initially had chromophobe which then morphed into mostly sarcomatoid.  Any histology (clear-cell; chromophobe; etc.) can evolve into sarcomatoid at any time. Although I have not had my liver mets biopsied I feel pretty certain that they must have a large mix of sarcomatoid (or other) cell-types.

- MRI's are great for everything except monitoring the lungs.  No one can hold their breath long enough not to have a blurry image as a result.  In addition, my understanding is that MRI's may not be covered by many patients insurance.

 

 

Srashedb
Posts: 482
Joined: Dec 2013

Neil:

Thank you for the detailed information; I will ask the oncologist to do MRIs for all but the lungs and see what he says. My husband has Medicare and a supplement so the cost should not be a problem.

you are so right about doing your own research and not being solely dependent on the medical field 

Sarah

Ree_Maryland's picture
Ree_Maryland
Posts: 158
Joined: May 2014

So happy and encourged of your all clear scan, gives me hope ,

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

is inversely proportional to the fear of dieing from advanced cancer. When the odds state your chance of survival is near zero, who cares how many scans you get? On the other hand, if ones cancer is minimal in size and risk of metasticizing is near zero, then not wanting scans makes a bit more sense. I think most of us who have been here a while have a greater investment in close monitoring. So let my hair and teeth fall out. I look forward to the opportunity to b!tch about it in a few years.

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