Diagnosis and lack of information from Drs

(Appologies for the rambling post.  I guess it is an intro and questions all in one).

June 1st I was told by the ER doctor that  I have Cancer of the kidney that extends into the Inferior Vena Cava.   Here started the whirlwind!   Monday morning I received a call from a Urologist to schedule an appointment.  Met with her and asked what kind and what grade (i had all weekend to google - good or bad) She told me they do not know as of yet. Pathology would be required. I was refered to another Urologist in her group - the surgeon - and still no inforamtion.  He refered me to a Vascular surgeon and still no info.    Went back to the first urologist and was told i have TCC but still no stage.     From the ER to the last dr visit I only had one urinalisys one Chect CT and a MRI kidney workup.  No pathology or biopsies or such.  How could they change their diagnosis from the first time?  And if they could, shouldn't they be able to tell me the stage or am i to the point i am better off not knowing?

We all know google can be good or bad.  What I found had me thinking it was RCC which despite it was cancer I was OK with it.  Being 47 yrs old it seemed like the surgery would take care of me proovided there was no lymph node invasion but the prognosis looked good.   Now i see the TCC info and the limited stuff i find (rare dr publications of their researces and that it is not really kidney cancer but bladded cancer with no bladder involvement) are (to user their word for survival) pretty grim....

Well Wenesday I get my NephroUreterectomy with the IVC Vena cava thrombectomy.  This seems like the easy part.  I will only get the dreaded pin prick for the IV and should be out for the rest.  Then the hard part begins......

Granted the night I heard was not a good night.   The next day I realized I can either cry in the corner (the only result of this is dehydration) or I can push through the whole thing like everything else i have done in my life and deal with any obsticales I encounter. 

Now this obstical is driving me nuts.   The hurry and wait for the appointments is annoying but I feel like something is being hidden from me which is nagging at me.    Not knowing keeps me from knowing what to expect and how to cope. 

Your story sounds like so many others I have read.  My mom has kidney cancer and I am the one that goes with her to all the appointments and does all the research.  All your questions will be answered shortly and unfortunately some of them can't be answered until after the surgery when they biopsy what they remove and get the pathology results back from that.  Remember that there are constantly new things happening in the fight against cancer and don't give up.  Even things on the internet can be out of date.  When I first read up on kidney cancer it was old information that basically said that there's not a lot they can do for kidney cancer and I can tell you for a fact that there is so much more hope than that for anyone facing kidney cancer.  I hope you have someone to confide in and to be there for you as you go through this process.  Best of luck to you and keep a positive attitude - it really does make a world of difference.

Thanks for the response.   I guess I just have to sweat out the next two days not knowing.... (so much for instant gratification!  :)  )  Best wishes to you and your mom through your path.

Drew.

On Jun 16, 2012 2:03 PM NephWreckTimmy wrote:

(Appologies for the rambling post.  I guess it is an intro and questions all in one).

June 1st I was told by the ER doctor that  I have Cancer of the kidney that extends into the Inferior Vena Cava.   Here started the whirlwind!   Monday morning I received a call from a Urologist to schedule an appointment.  Met with her and asked what kind and what grade (i had all weekend to google - good or bad) She told me they do not know as of yet. Pathology would be required. I was refered to another Urologist in her group - the surgeon - and still no inforamtion.  He refered me to a Vascular surgeon and still no info.    Went back to the first urologist and was told i have TCC but still no stage.     From the ER to the last dr visit I only had one urinalisys one Chect CT and a MRI kidney workup.  No pathology or biopsies or such.  How could they change their diagnosis from the first time?  And if they could, shouldn't they be able to tell me the stage or am i to the point i am better off not knowing?

We all know google can be good or bad.  What I found had me thinking it was RCC which despite it was cancer I was OK with it.  Being 47 yrs old it seemed like the surgery would take care of me proovided there was no lymph node invasion but the prognosis looked good.   Now i see the TCC info and the limited stuff i find (rare dr publications of their researces and that it is not really kidney cancer but bladded cancer with no bladder involvement) are (to user their word for survival) pretty grim....

Well Wenesday I get my NephroUreterectomy with the IVC Vena cava thrombectomy.  This seems like the easy part.  I will only get the dreaded pin prick for the IV and should be out for the rest.  Then the hard part begins......

Granted the night I heard was not a good night.   The next day I realized I can either cry in the corner (the only result of this is dehydration) or I can push through the whole thing like everything else i have done in my life and deal with any obsticales I encounter. 

Now this obstical is driving me nuts.   The hurry and wait for the appointments is annoying but I feel like something is being hidden from me which is nagging at me.    Not knowing keeps me from knowing what to expect and how to cope. 

Hi Timmy,

Sorry to hear about your problem.  Please don't worry about 'rambling'.... that is what this forum is all about.

My problem was similiar to yours; I was diagnosed with Stage IV, RCC with mets to the lungs.  I took Sutent for two and a half years before surgery...which shrunk the tumor enough to be safe for surgery.

I have been off chemo for a little over two years, praise God!  I had been told to get my affairs in order shortly after diagnois.  At the time, I had an infant grandbaby; I never dreamed I would live to see her graduate from Kindergarten the other night!  Now, I am looking forward to being there for more of her accomplishments.

I am not familiar with 'TCC,' I do not know the meaning of that.

Keep a positive attitude, it is very important.  This is what we have been dealt and we have to hit it head on! 

Stay strong mentally and physically, have hope and faith for better days ahead.

Please keep in touch, we are all here for you.

Prayers and blessings,

B

Thanks for the well wishes.     I am trying to stay positive.  Driving everyone around me nuts with my rotting jokes.... Hope it keep it up after the surgery!    Hope your's stays away and you get to see your grand kid graduate Medical school (or law school or masters programs or what every the choose)! 

TCC is Transitional Cell Carcinoma (Bladder cancer).   TCC or the Renal Pelvis is bladder cancer in the Kidney (from what I have interpreted).

Praying all goes well for you today.

Tanks for the well wishes Love4life!

(you were a day early though! buth I guess the extra wishes gave her enough strength for the two of us to keep her going and we kicking!) 

Went thought he worsst part (I hope) wednesday early morning after a wonderful (is there a sarcasm font ont his board?) prepday of Go Lightly (those chemists that designed this have some humor huh?)

I guess today the got sick of my humor and kicked me out-  "you want to go home yet?  How about now - or would you want to stany and eat dinner first then go?"  so i guess i am doing good!

Still no pathology info - pleanty of pain though!   :)

I saw your post and was wondering if you could help answer some questions. My mom has been diagnosed with rcc and spread to bones and lungs she just started her chemo pills and is very weak, any ideas to help with her would be appreciated. Thanks

The only thing that I can tell you is to look up Diagnosis... Read all and any books that you fine about RCC... Now want you fine in your reading will put your heart in pain...But turn that pain into fining out how to help your Mother...I tell you this most Dr's are not going to tell you anything... I go thought that with my son Joshua who is in remission or brain cancer.... You have to do this for your mom because the hospital will do all any tests on your mother even if she does not need it... There may come a time that you or someone in your family may have to get a lawer... So that the Dr's would have to tell you eveything

Thanks be to the Lord that your son Joshua is in remission.

Prayers and blessings,

B