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Adjusting to the new reality

Gloozkap's picture
Gloozkap
Posts: 11
Joined: Jun 2017

 

 

Hello

How are you all? I joined our illustrious group last week and I wanted to pick your brains again if you'll allow me. You were all a great help to me last week and I am looking for some more illumination and I refuse to go on the internet again and search Google haphazardly (been there, done that). I am formulating a list of questions for my Urologists. Next Tuesday 27th and Wednesday 28th  I have appointments booked with two different Urologists. One is a relative youngster – (late 30s early 40s) and one an old pro. So I imagine I will get a strong cross section of experience and knowledge to provide me options.

 

Just a recap – I am 45 years old, diagnosed RCC last Monday, CT scan confirmed – 3.9 cm mass upper pole of left kidney. CT scan with contrast also  found a ”suspicious” lesion size 1.4 cm on right kidney that the initial ultrasound missed, but CT scan could not classify it at the time. Follow up ultrasound last Friday where the technician beat up my right flank to a meaty pulp for about 30 minutes finally got a picture of the right kidney lesion and again classified it as “suspicious”. It seems like a large price to pay for a bruised and tender right flank to get the same diagnosis as CT scan but such is the new reality.  I have an MRI tomorrow to get another imaging solution to confirm whether mets or not (CT scan showed no mets so far) and to get another look at 1.4 cm lesion. I am going on the assumption that the “suspicious” lesion is indeed cancer.

 

If this is the case, I have rarely read about both kidneys having tumors. Most experiences here, on this board, even with the much larger masses have mostly been on a single kidney, with maybe benign renal cyst on other. Does anyone have any experience with this? Also, do you notice the troubled mind has a way of amplifying small things? Since my diagnosis I am feeling like my back and sides are always sore but often when my mind wanders elsewhere it seems to disappear. When I try my best to find the pain again and move around and push and prod it feels almost like muscular soreness. It’s very frustrating because pre incidental diagnosis I literally felt nothing. Has anyone else experienced this? 

 

Ugh - It feels like years getting all the tests done and waiting to get into the surgeons office. And it has literally been only eight days. This is me adjusting to the new reality…

regards,

G

 

 

donna_lee's picture
donna_lee
Posts: 966
Joined: Feb 2009

A local teacher/acquaintance had a partial neph on each side about 6-7 years ago, and he hasn't slowed down.  He had just retired when D'xd, but is still involved in drama and music groups in the community (he taught drama, English and what ever that had to be taught in HS and JR HI.)

Yes, troubled minds can make more trouble.....if you let it.

Good Luck on more tests and results.

donna_lee

lobbyist0724's picture
lobbyist0724
Posts: 424
Joined: Sep 2016

Hi Gloozkap, I saw your post in the KCC forum as well, they do have a standard questionaire for patients to ask the doctors. Since there are quite a bit of differences between the health system in US and Canada, I suggest you to post your questions there as well.

All the best!

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Rare that you get a met as the first place in the other kidney, except in genetic kidney cancer. BTW, they can't diagnose kidney cancer with imaging. They won't get a for-sure diagnosis until they either biopsy it (which they don't usually do), or cut it out and slice it up and put it under the microscope. From imaging they are guessing. If they decide they need to take it out, they'll do a pathology report on it (slice it and examine it, measure it, and see where it grew, and the type of cells), then you would get a full diagnosis of whether it's RCC, what type (there are different types), what grade it is (how abnormal the cells are 1-4, 4 being worse), and what Stage it is (this is related to size and where the tumor infiltrated/where it grew into).

If they are saying RCC from imaging, they are probably saying something like a 90% chance that it is. There's a small chance it's something else (usually). I've never heard of a confirmed diagnosis on imaging alone.

Best,

Todd

P.S. If they think you have genetic kidney cancer, it's worth looking into. Genetic kidney cancer has been studied extensively at the NIH and they understand this disease really well and know how to treat it really well. It from the studies of genetic kidney cancer that most of our treatments and knowledge is currently based. In fact, many forms of genetic kidney cancer (I heard an expert from NIH talk about) they often just watch it and don't do surgery because it's so slow growing and they understand it so well. If you think you have tumors in both kidneys and no where else, it might be worth finding and RCC expert to look into the possibility you have genetic kidney cancer. Non-experts may just start cutting on you....

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