Newbie 1.3cm CCRCC? Wait? Biopsy? Get 3rd opinion?

AnnissaP said:

The radiologist report for

The radiologist report for mine said treat as RCC until proven otherwise. First urologist said she didn't think it was a tumor and wanted to wait 3 mths. I said no so she wanted to biopsy. I said no to that as well. I got a 2nd opinion and he agreed that he was pretty sure it was cancer. The new urologist, oncologist and my family doctor all disagreed with biopsies. They said the tumor has to come out either way. They could take 15 samples and still miss where the cancel cells were. I was NOT going to take that chance. My surgery was a planned partial nephrectomy but turned in to a radical. I lost my whole kidney because the tumor was deeper than images projected. After the 1st consult I did NOT feel right. I left the office feeling frustrated and angry. Once I saw my family doctor and told him I wanted a 2nd opinion he agreed I should have one and I felt better. All has been taken care of. There are those on here though who the doctors thought had cancer and it turned out not to be!!! I am very happy for them! Go with your gut instinct. If your mind is not at rest search for all the answers and direction you can.

Thank you Annissa, I think that is my conundrum.  The doctor in the first consult (Dr. Paul Russo at Memorial Sloan Kettering who many on here have trusted for their care and surgeries, have raved about and was recommended to me by the Chair of Urology at The Cleveland Clinic) said radiologists can't and shouldn't put down what type of cell it is as only pathology that can confirm that and that given the size 1.3cm being so small , the location and that I am assymptomatic along with no other indicators on the scans, the risks of it being malignant and growing in 4 months is small like it.  Surgery will be riskier for me given my body size and it's teeny size.  The 2nd opinion guy, Dr. Jim Hu at Cornell Weill, I woudn't let a lab rat be under his care but he did raise the biopsy question and didn't entertain my questions about reliability and accuracy.  Thank you for sharing yours as I'm of the same ilk; either take it out or leave it be and watch but don't poke, prod and then say "we still don't know." Many thanks for your wisdom.

Kat23502 said:

I would question the “only 5%

I would question the “only 5% chance of malignancy” statistic. A solid renal mass has a much larger chance of being malignant than benign. I think at this point you need to follow the advice Iceman gave and choose who you are most comfortable with OR keep hunting until you find someone you trust. At the end of the day, this is your life and most likely will involve surgery at some point so if ANYTHING isn’t sitting right with either of these two, I would look to number 3. 

Thanks Kat, just needed that reassurance to trust my decision.  I'm going to wait the 4 months.  In the meantime, I do need to find a hernia surgeon.  Aye....

Bay Area Guy said:

I had a slightly larger baby

I had a slightly larger baby that ws found incidentally in Deceber, 2013 (1.5cm).  I was referred to Stanford Medical Center in Palo Alto and my urological oncologist told me, almost word for word, what yours told you.  He said the standard of care in lesions that size was monitoring.  He said if I couldn't bear the thought of something possibly growing inside me, he could get it taken out, but he did not want to unnecessesarily reduce my kidney function unless he had to.  So, we monitored it with scans every six months.  The scans would alternate between CT with contrast and ultrasound.  It wasn't until April, 2016 that an ultrasound found that the little guy had grown to 1.7cm or 1.8cm, so I had it removed in June, 2016 through a robotic partial.

 

The key thing here is, as ice has said, there is no right or wrong answer.  I decided to take the advise of the doctor and wait.  I was assured that, given the size of my lesion, the RCC generally wouldn't spread much and generally wouldn't grow fast, so six month scan intervals would give us a good view of whether the lesion had to come out as the urologist was not convinced it was, in fact, RCC.  But your psychological frame of mind is just as important.  If you are uncomfortable that it may be RCC, and you don't think you can handle that knowledge, then talk to him about surgical and non-surgical ways of getting it out.  And once you make a choice, you'll know it was the best choice for you.

Oh thank you Bay Area Guy, you said it so much more eloquently than I did.  Yes, given my age of 43, that is exactly why Dr. Russo recommended the wait and monitor approach; risks of major surgery in general and then risk of causing damage to kidneys as he said "you may live 30-40 years..." and need to get at a 1.3cm something.  What I hadn't mentioned was my current "stress" load, I do have an umbilical hernia that may be incarcerated (possibly the pain and what led to his discovery) and am a dedicated buy poverty wage earning adjunct Phd, waiting for full time employment, may or may not be moving etc...lots of major life stressors and this was the straw that broke me.  Frame of mind and reducing stress is just as important as you beautifully relayed.  Thank you for confirming this with me.  It helps knowing others in the same boat of experience.