Question to ask

Mmoses25

i had my scans he said I was Ned but then he said there was a small spot on my kidney he believes it's scar tissues and not to worry but of course I worry I question him about it he said kidney looks fine and blood work looks great I don't know what to do

Bay Area Guy

Remember, it's not just the urologist or urologic oncologist that looks at your scans.  A trained radiologist does as well.  Both seem to indicate that the spot was scar tissue (little Freudian slip when you said scare tissue).  So both of them would have to misread the scans and come to the same conclusion.  You're always going to have some worries about anything that's not cut and dry when it shows up on your report.  But I do recall an earlier post when you said you were having some periods of pain in the area of your surgery, so there could very well be some scar tissue there.

Biner

But we need to be an advocate

But we need to be an advocate for ourselves, doctors can be wrong and radiologist can wrong.I had an ultrasound in 2018 and the report says complex cyst, nothing worry about.I saw a urologist and he said the same, but it was wrong! It was cancer, I loosed 1 year and did ct when it was already 4.5 cm and not 1 stage like again said the wrong doctor, it was aggressive cancer tumor 3 stage. It's your life, not a doctor or radiologist,i saw lot of people who were told "get it all" and don't worry its nothing, now they stage 4 and probably die due to doctors mistakes 

AliceB1950

My urologist ordered a PET

My urologist ordered a PET scan last year and a spot lit up. I had to have a biopsy, and sure enough, it was scar tissue.  He said it can continue to form for quite some time after surgery, and they just check to make sure there's not TOO much variation in size from scan to scan.

Mmoses25

AliceB1950 said:

My urologist ordered a PET

My urologist ordered a PET scan last year and a spot lit up. I had to have a biopsy, and sure enough, it was scar tissue.  He said it can continue to form for quite some time after surgery, and they just check to make sure there's not TOO much variation in size from scan to scan.

Thank you

That makes me feel better thank you

Pattymayo

Biner said:

But we need to be an advocate

But we need to be an advocate for ourselves, doctors can be wrong and radiologist can wrong.I had an ultrasound in 2018 and the report says complex cyst, nothing worry about.I saw a urologist and he said the same, but it was wrong! It was cancer, I loosed 1 year and did ct when it was already 4.5 cm and not 1 stage like again said the wrong doctor, it was aggressive cancer tumor 3 stage. It's your life, not a doctor or radiologist,i saw lot of people who were told "get it all" and don't worry its nothing, now they stage 4 and probably die due to doctors mistakes 

Biner

I am new here. Trying to navigate and let this all sink in. My son is 42 and just had his kidney removed one week ago. Still having a lot of pain. I have read a couple of your post and am perplexed by your Drs. Are you in a big city, good hospital, kidney oncologist? I am thinking of you and hope everything works out for you.

Biner

Pattymayo said:

Biner

I am new here. Trying to navigate and let this all sink in. My son is 42 and just had his kidney removed one week ago. Still having a lot of pain. I have read a couple of your post and am perplexed by your Drs. Are you in a big city, good hospital, kidney oncologist? I am thinking of you and hope everything works out for you.

Yes i live in Chicago,big

Yes i live in Chicago,big hospitals arround me.When first time discovered cyst 2 years ago,i went to regular urologist and he said nothing worry about.It small,and cyst and less 5% chance cancerous.I was so happy and forgot about just did ct year ago to check if cyst growed,and got diagnosis cancer.Now i have very good onco urologist,he did very good nephertomy and save my kidney.But due my age,stage and grade chances see cancer again very high.Another problem all cancer thretments kill not only cancer,also kill you usualy people cant live normal,no work,disability,impoverishment,scare me more than just dying of cancer. Unfortunately, young age is no help here

Deanie0916

It's so difficult

to keep from worrying. I hope and pray that it's just scar tissue. Let us know how it turns out.

Tempest1

Tests

In my case of UTUC, both  urine cytology and cystoptomy were negative.  Scans indicated a tumor but not necessarily cancer.  After physical visual observation internally with scope was it determined by "experience" that it was cancer.  He was proven right as the test were inclusive.

 

a_oaklee

Biner.  I feel really sorry

Biner.  I feel really sorry that you have all those fears re perceived affects of cancer treatment.   I understand it, truly I do.  It does motivate me however to say that it isnt like that for alot of people getting RCC treatment for Stage 4.  Its not chemotherapy like in the movies.  When my husband started treatment with targeted therapy in 2012 he did have some side effects, but also treatable with popping a few more pills.  He is on his 3rd treatment.  He feels good.  No weight loss. Enjoys working full time.  Never stopped working.  Even the radiation for the bone mets was like going for a chest xray.  Easy.  Bone mets are very painful, but the radiation takes away the pain in alot of cases.   I know my husband  has been fortunate.  Im hoping to alleviate some fears of what the future may hold.  You just dont really know the future.  We have tried really hard to live in the present.  Only think of today.  Its quite therapeutic.  My husband inspires me with his attitude.  I think there are alot of people like him, doing really well, and because of that they arent participants on CSN or Smartpatients.   I wish everyone here good health and peace of mind.