CT Scan results

sblairc said:

Thanks for bringing up the topic, JoJo and for Nano

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!!! 

"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.

NanoSecond said:

JoJo - you (and everyone)

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.

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. 

Jojo61 said:

Thank you

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

 

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.

Ree_Maryland said:

CT SCANS

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

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.