Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

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

amuseu
amuseu Member Posts: 8

Dear all, 

Firstly, thank you all for your candor and gentleness on this forum.  Through the past weeks I've been using the forum to help me make decisions, especially on a doc who I had my first consult with two days ago.  Need advice and information from you all, as I believe you are experts just as the doctors are in this fight.  

HISTORY: Started having severe upper right side abdominal pain 6 months ago, intermittedly every 2-3 weeks and lasting for 2-3 days.  I do have a large umbilical hernia but the pain was to the right and half-way up between my lower "bulge" there and breastbone.  Eventually as the pain episode went on the hernia would bulge and be tender but I thought since the pain started somewhere else things were just inflammed in the GI tract.  I am very obese and struggle with weight loss resisteance although I eat healthy, gluten free/ sugar free, organic and grass fed for 7 years now.  Which is a testament that at my weight I don't have pre/Type II or diabetes and besides an elevated CRP and although high cholesterol, it keeps going down yearly.  Last Sept found a lump on my thyroid, had that 2cm sucker biopsied and chose a surgeon who did genomic testing.  Biopsy came back indeterminate but genomic testing showed less than 3% chance of cancer which under 5% the protocol is to scan at 6 mos intervals. 

DIAGNOSIS: Sonogram showed umbilical hernia is filled with fat and fluid.  Nothing else.  CT Scan showed a soft tissue density lower pole right kidney.  Rule out renal cell carcinoma MRI of kidneys recommended.  MRI "showed" small paritally exophytic renal cell carcinoma likely clear cell type emanating from the lower pole of the right kidney measuing 1.3 x 1.4cm x 1.3cm.  No invasion of the renal sinus fat, renal vein thrombosis or locregional metastatic disease.  

CONSULT #1: Excellent physican, one I got from some recommendations on this site here in NYC and one the Chair of Urology at the Cleveland Clinic recommended to see here...after a thorough conversation he said, my tumor is a baby, I'm a baby (I'm 43 yrs old) and that at this size and location he will follow me and sonogram (with his techs at Memorial Sloan Kettering) in 4 months.  Didn't see the need to expose me to unnecesary radiation (CT scans/MRI's) and that surgery at this size outweighs the risk.  In a nutshell, he gave a lot of other facts i.e. at this size and location only 5% chance of malignancy and then the overall stats of benign, indolent, malignant for renal tumors in general.  He also didn't recommend biopsy (too small, could move things and indeterminate).  

CONSULT #2: A surgeon who specializes in robotic surgery.  He had terrible conversational skills, was dismissive, and basically said, at this size I need to get it biopsied and he doesn't do that.  Once confirmed we can talk about what's next.  It was almost as if he was mad I was there to see him and hadn't had a biopsy.  

So my dilemma is who to trust most and decide to wait or biopsy now?  I am leaning towards waiting 4 months because not having any invasion in my body is great, but from many of you I've heard cut it out.  At my weight surgery will be risky and neither seemed in a hurry to do it or startled to do so in my case.  PS. Doc in consult #1 said radiologist should not have said RCC or CC because only pathology can tell the type and I am T1 and the baby-baby stage of T1 with unknown pathology.  Does that make sense to you all?  I hate to think everyone's opinions vary this much and they are giving medical diagnosis!  

Thank you so much, A 

Comments

  • icemantoo
    icemantoo Member Posts: 3,357 **
    No right or wrong answer and no hurry to decide

    amuseu,

    It is a little small for diagnosis and sounds like each has a variation of watch and wait which is not uncommon with small little buggers. You are lucky that whatever it is that it was discovered so early. Listen to both doctors and follow up with the one you are most comfortable with.

     

    icemantoo

     

  • Kat23502
    Kat23502 Member Posts: 179
    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. 

  • AnnissaP
    AnnissaP Member Posts: 632
    edited March 2018 #4
    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.

  • amuseu
    amuseu Member Posts: 8
    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

    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.

  • amuseu
    amuseu Member Posts: 8
    icemantoo said:

    No right or wrong answer and no hurry to decide

    amuseu,

    It is a little small for diagnosis and sounds like each has a variation of watch and wait which is not uncommon with small little buggers. You are lucky that whatever it is that it was discovered so early. Listen to both doctors and follow up with the one you are most comfortable with.

     

    icemantoo

     

    Thanks icemantoo, I do trust

    Thanks icemantoo, I do trust the 'wait and monitor' doctor after thinking about it more.  It was from Dr. Paul Russo (who also came recommended from the Chair of Urology, Eric Klein to me).  I believe I read some of your posts about him and the clinic on here.  I used to work at CCF many, many moons ago.  Trusting your doctor is paramount.  Russo actually talked about the difference between 'excellence' and 'achievement' in how docs are trained and the excellence part, patient care, is sorely lacking.  I agree, this is like so many kidney findings these days it was caught unintentionally. Thank you for your care in this forum.

  • amuseu
    amuseu Member Posts: 8
    edited March 2018 #7
    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

    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
    Bay Area Guy Member Posts: 521 **
    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.

  • amuseu
    amuseu Member Posts: 8

    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,

    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.  

  • Shecka1121
    Shecka1121 Member Posts: 113
    Same Size as You

    Hi.  My malignant tumor was 1.2 cm.  Mine was found when I was 43 years old as well.  I am seen at UCSF in San Francisco.  My doctor came in the room and told me that either way we approach this I will live a very long time so she wanted to present all options.

    1) cryoblation

    2) Watch and wait

    3) Remove it

     

    I chose to remove it with a partial robotic neph.  I too am overweight, but was healthy for surgery.  Mine was stage 1a grade 2 rcc.  

     

    I chose to remove it as it increased the odds of mets. I have a MRI annual and CT of chest annually.  All good.

     

    The only item I question is all dr told me that the likely hood of it not being cancer this small is 5% due to the fact it was solid.

     

    I wish you the best.

     

     

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488
    Pleased you have Bay

    Area Guy and Shecka to guide you

    Please Get it out rather than anything else.. was terrified after reading about someone who had cyro and it came back 10 years later with a vengeance and sadly passed it away

    Surgery is the only sure way

    the weight  may be a issue ... sorry I have no wisdom  ( although slightly overweight myself and my surgery was fine)but I am sure there must be a lot with similiar issues.but you have time on your side to take  stock And  hopefully the job  and the weight issue will get better

    Bay Area guy had 3 years.. so you dont need to panic... but thank God you are being very pro active and got the top guys lined up

    Good Luck

    Annie