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GPF
Posts: 3
Joined: Oct 2013

So I've been lurking here for quite a while reading many of your posts. Many have been very helpful. Thank you. Reason for finally posting is that I like many of you have allowed this to consume our lives. I was diagnosed with a 4CM stage 1 RCC on my left that was "encapsilated" and removed via radical on May 28th. it ended up being grade 4. Prognosis seems pretty good, at least as best as can be expected. Recently had my first scan. My surgeon who has always been very positive gave me the results that the scan was "clear" but did so with a serious tone, one of which I hadn't heard from him before but I left the office relived that I had a clear scan.

Fast forward a few weeks when I had follow up visit with my urologist to make sure that my right kidney is working well (trying to watch this one kidney I have left). due to a wait, the PA came in and while discussing some things, he advised me that the scans showed that I had lymph node slightly enlarged and that I had a "hyper dense cyst" in my right kidney... huh?.... He advisd that the doc could explain more once he came in. once there the doctor explained that I needed a different scan to better determine what it is. I of course peppered him with questions and he showed me the scan results and highlighted the part that's said "could be hyper dense cyst" which he said isn't worrisome But that we need to watch it and scan it again.

a few questions for you folks...

1. Why wouldn't my surgeon made me aware (called him and asked for clarity, said it was classified as a bosniak 2 and following up with a tri phase scan in December)

2. Is it normal for a doctor to filter this type of info. how concerned should I be?

3. Has anyone had this type of scenario happen to them?

Pretty Freaked out

G

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hi GPF.. If I had a dime for each time I heard about getting "all clear" reports but then they leave out other info. One thing I have learned, if they don't think it is important, you won't hear about it!  I always make a point to get all of my reports for each and every test i take, even the urine!

On your scan report.. did anything show up as "active"?  I mean there can be an enlarged node, or even a cyst, but was there any FDG showing?  Since he said "all clear" I am assuming there is nothing glowing on the report.  It can be a simple cyst and the node can be enlarged for many reasons. Do you want to share what they said exactly? I wouldn't worry about it too much. 4 CM encapsulated is pretty smalll. The grade 4 is a little surprise.  But still, you have stage 1. Most times surgery for that size is the cure.  Let's see what the other tests show, it will most probably clarify it.  Will it be an MRI?  Was this cyst on the first scan you took that showed the tumor on the other size or is it new? Maybe you want to get that first scan report to compare it to. Keep a good file with every report and test.

I would try to always get a full body pet/ct scan done each time my three months is up.  Also, you must go to an Ocologist. The surgeon or Urologist should not be the only one discussing the reports and scans with you. Every cancer patient has to have a good Oncologist, preferrably a RCC Oncologist. Please be sure to see one even though they say you don't need one.  That is your decision. A surgeon does surgury, once that is done the Oncologist follows up with scans etc.  

Don't freak out, it most likely is nothing.  Please keep us posted.  By the way, I don't know your age, but i hear once we turn 50 that Kidney cysts are the norm.  Don't know much about that, but sure others will chime in soon!

Take care and try not to worry!  The main thing is that you are on top of it all so you grab it early, but is is probably nothing. Stage 1 is what others dream for!  You will be ok...

 

 

GPF
Posts: 3
Joined: Oct 2013

Thanks Angec.... Nothing popped on the report (as far as I know). I've wondered about getting copies of the reports. My GP advised against it because I'm a bit obsessive and I will look into every word and detail and always find the worst possible scenario. The upcoming scan is a tri phase scan. Apparently it gives a 3d view. I'm 42 and have had cysts on both my kidneys as long as I can remember. Always have had stone issues but only in the left kidney. This is the first issue with the right. When I called the surgeon (levine cancer center in charlotte and urologic cancers is what he specializes in) he advised me that the PA really shouldn't have simply said what he said without a filter. He explained that he had the the clinical experience to understand the reports. He further explained that the para aortic node showed up because of the surgery. Apparently internally the healing is taking a bit longer than  he expected. 

I did see an oncologist and he said that now that I "no longer have RCC" I don't need an onologost and that the doc I have now is more than qualified.

 

 I had a ct scan with and without contrast 

angec's picture
angec
Posts: 622
Joined: Mar 2012

GPF.. It is good that nothing glowed.  He also gave you a satisfactory answer regarding the node that showed up. And, you always had cysts.  Ok, now i am relieved to hear this. Any type of cyst will be watched on a regular basis. Here are some thoughts of mine.  Just my opinion.

1. The Oncolgist that said "you no longer need him".... I will find another one!

2. I would still get all of the reports. It is fine to go over the reports thouroughly until you have a satisfactory answer. Then when you do, you stop obsessing.  I translate his comment into "if you get the reports you will continue to bother me until you find out everything."  Get the reports and keep it in a file!

3. Don't obsess. It looks like it is being taken care of and now that you know that nothing "lit" up it is all good!

TillieSOK's picture
TillieSOK
Posts: 237
Joined: Jul 2013

Oh yeah!  My surgeon, although he is a fantastic surgeon, wanted to do nothing more than a chest X-Ray @ 6 months....said he got everything and for me to just continue on and don't worry about a thing.  I thought, being fat, dumb and happy to be alive, that I was probably a stage 1, grade 1, since he said he got it all.  Well. Yeah, he got the whole kidney and the ureter....just neglected to tell me that it had invaded waaay far into the renal vein and the sinus fat, and some of those suckers snuck out through the renal vein and into the rest of my body.  So now, after I cancelled my 6 month appointment with him and consulted with an oncologist, they ran a chest/abdomen/pelvic CT......found some areas of concern, ran a skull- base to mid-thigh PET scan, and now I am scheduled for an MRI on my right pelvis/hip/femur because it lit up like a Christmas tree.  After that, they will tackle the bilateral lung hot spots.  Surgeons seem to have a "God" complex and if they removed the entire tumor, they "got it all".  You need to see an ONCOLOGIST, preferably one who specializes in RCC, to take care of you.  Right now, even before the MRI, my oncologist is consulting with other oncologists about what treatment will be best for ME, not best for his "statistics".  I don't mean to be a downer, but you really need to take a proactive attitude in your treatment and your recovery...and unless the surgeon is also a urological/RCC oncologist, find one ASAP.  I had to pull every bit of information out of my surgeon like pulling wisdom teeth, even to what type of RCC I had!!  They don't want to tell you anything.  Okay, off my soapbox and back to reading.  Best of luck to you and hope your scans are all clear.

one putt
Posts: 72
Joined: Sep 2012

I had a rt.radical nephrectomy 11-1-2011. My surgeon is one of the most confident  people I have ever met. His specialty is urology. He had the best bedside manner I have ever seen(I worked in a hospital during my days in the army).  At my follow-up visit 3 weeks later he advised me that he  had hit a "home run" with me because my surgery had gone so well. He then proceeded to tell my wife and I that  he was stepping aside and that my oncologist(who just happens to be an RCC expert) would be taking over. My wife and I left his office crestfallen, that's how highly we thought of him. In hindsight, it was the right decision. I agree with Angie and Tillie you need to find an oncologist, preferably one with expertise in RCC, notwithstanding the advice the other oncologist gave you. As the others have said, you need to be proactive. 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Tillie, I for one, love when you get on one of your soap boxes...I seems I learn something new from you everytime.  And, your story is what has inspired me to seek the care of an oncologist vs just the urlogist (who only wants to do a chest x-ray).  So, thank you for helping me learn through your trials and tribulations!

I am determined to find a doctor that will do a PET scan.  Not sure if it's as simple as just asking for one or if it has to be deemed medically necessary per my BCBS.  Still looking for a doctor in my area, but not having much luck.  You'd think I lived in BFE, as much trouble as i'm having!

 

gabigirl's picture
gabigirl
Posts: 6
Joined: Oct 2013

When my husband was diagnosed we made it clear with with all the doctors we wanted the them to be honest and tell us everything.  We didn't want anything sugar coated.  If they couldn't do that, then they wouldn't be our doctors.  We have left one because of that. I also make it a point to get a copy of all the test and procedures final reports.  That way if something isn't told we can address it at our appointments.  I wish you the best of luck!  My husband is terminal with stage 4 renal cell carcinoma that has spread throughout the body.  When he first got sick, we were told he didn't have cancer he was too young.  It was caught too late.  I have learned to question everything and always read reports because some physicians do leave important info out and that is sad!

Good Luck!

GPF
Posts: 3
Joined: Oct 2013

Good luck to you... I'll send prayers your way

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