Totally Confused!!!

AnnissaP
AnnissaP Member Posts: 632
edited September 2017 in Kidney Cancer #1

Hi all! I am new here and would appreciate any feedback/experiences. I will try to make a long story short. Left kidney cyst has been monotored for 1 yr. A few weeks ago I had an ultrasound and a solid mass showed up as well. Had a CT scan with contrast dye and it was confirmed...Solid mass being 3.6cm in size (along with a 6cm cyst). I saw a urologist this past Monday who said she is not convinced it is a solid mass, but does not know. She said the cyst may have "bled into itself." She suggested the watch and wait method which I turned down. She then offered a biopsy. Needless to say, I am getting a second opinion. It is clear on the images that I do have a cyst because it showed up as a black cirlce. The questionable solid mass lit up because it took in the contrast dye. It is a weird, long, bean-shaped looking thing. Anyway, to my surprise, I saw my family doctor yesterday because I was totally unsettled by this urologist's response. My family doctor showed me the results from the CT scan the radiologist sent. I saw it for myself. It read.....Treat as renal cell carcenoma until proven otherwise!!!!!! My question is why would the urologist completely ingnore this AND not tell me??? They all know my family history....Dad died from cancer and his mom did as well.  His dad had cancer and so does his brother right now. My aunt died from cancer, 3 uncles had it and so did my grandmother. My family doctor said biopsies are NOT reliable because the cancer can be missed. He told me they always treat these masses as "worse case scenario" and take them out. Does that one urologist think this is a joke? Is she that young and arrogant to just act like she knows everything and leave it? My family doctor takes this more serious than she does. To me, time is of the essence. Thanks for listening and for any/all feedback. Sorry so long!!!!

«13

Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Lets see

    Annissa,

     

    Lets see what the second opinion says that you scheduled which would have been my suggestion if you had not scheduled it already.

     

    Icemantoo

  • AnnissaP
    AnnissaP Member Posts: 632
    icemantoo said:

    Lets see

    Annissa,

     

    Lets see what the second opinion says that you scheduled which would have been my suggestion if you had not scheduled it already.

     

    Icemantoo

    Hi. My doctor sent off the

    Hi. My doctor sent off the referral so I am just waiting!

  • Optimisticgirl
    Optimisticgirl Member Posts: 82 Member
    I would want second opinion 

    I would want second opinion 

  • AnnissaP
    AnnissaP Member Posts: 632

    I agree......definitel, a

    I agree......definitely, a second opinion is warranted. Keep us posted.

    Thanks. Will do!!

    Thanks. Will do!!

  • AnnissaP
    AnnissaP Member Posts: 632

    I would want second opinion 

    I would want second opinion 

    Good to know it is not just

    Good to know it is not just me thinking this way. Thank you.

  • foxhd
    foxhd Member Posts: 3,181
    Ann,

    Do not accept this comment as only my opinion. I speak from reading thousands of others advice. Most docs do not know current trends in renal cancer. If a hundred docs were asked if someone with RCC will be alive or dead in 5 years, maybe 90% will say dead. But this is NO LONGER true. As a result, some docs will be happy to follow you along the disease course until....

    Sometimes you need to do your own homework. Like persuing second opinions with renal specialists. You know what to do now.

  • BoondockSaint
    BoondockSaint Member Posts: 242
    I agree......definitel, a

    I agree......definitely, a second opinion is warranted. Keep us posted.

  • AnnissaP
    AnnissaP Member Posts: 632
    foxhd said:

    Ann,

    Do not accept this comment as only my opinion. I speak from reading thousands of others advice. Most docs do not know current trends in renal cancer. If a hundred docs were asked if someone with RCC will be alive or dead in 5 years, maybe 90% will say dead. But this is NO LONGER true. As a result, some docs will be happy to follow you along the disease course until....

    Sometimes you need to do your own homework. Like persuing second opinions with renal specialists. You know what to do now.

    Thank you for taking the time

    Thank you for taking the time to reply. I have been searching and studying. We know our bodies yet a lot of so-called professionals do not seem to care. For 18 mths my Dad saw 8 different doctors. They all said he was fine and probably had a bladder infection. He died from prostate cancer. I am sure anyone can understand my concern regarding waiting or not taking this very serious.

  • Angie1496
    Angie1496 Member Posts: 154
    Needle Biopsy

    I had a CT guided needle biopsy... the results were non-diagnostic for malignancy but all scans stated treat as RCC. I had 3 opinions and  all 3 did not want to mess around with another biposy.  I had a partial nephrectomy last week.  4.5cm  tumor with clear defined edges, clear cell renal carcinoma. I recommend getting 2nd and 3rd opinions and not messing around too long.  Make an informed decision. a friends daughter had this recently and it was monitored for 6 months becuase she is young and it changed during that time. SHe also has had a partial since then.  Not trying to scare you but definitely do you homework.  I hope you find the answer for you soon!  

  • AnnissaP
    AnnissaP Member Posts: 632
    Angie1496 said:

    Needle Biopsy

    I had a CT guided needle biopsy... the results were non-diagnostic for malignancy but all scans stated treat as RCC. I had 3 opinions and  all 3 did not want to mess around with another biposy.  I had a partial nephrectomy last week.  4.5cm  tumor with clear defined edges, clear cell renal carcinoma. I recommend getting 2nd and 3rd opinions and not messing around too long.  Make an informed decision. a friends daughter had this recently and it was monitored for 6 months becuase she is young and it changed during that time. SHe also has had a partial since then.  Not trying to scare you but definitely do you homework.  I hope you find the answer for you soon!  

    I really appreciate what you

    I really appreciate what you have said. I am trying my best to push them and not mess around. This mass did not show up 6 mths ago and is now 3.6cm!!! I think because I am only 38 they do not believe it can be anything worth worrying over. I wish you a speedy recovery and am glad they took care of your situation.

  • Angie1496
    Angie1496 Member Posts: 154
    My friend's daughter is 24.

    My friend's daughter is 24. THey said this type cancer isn't common in that age group... yours either!  once it changed her doctor jumped on it though.  SHe has her 1st 6 month scans next week!  I can't understand how yours wasn't seen before?  I read alot about cysts and nonmalignant masses before my surgery.  She was tested to see if what she had was the genetic type RCC but it wasn't.  Thank you for your well wishes!  I hope you get more information soon.  I saw 3 urologists and got 3 similay but different recommendations of what to do. I don't know where you are but John Hopkins has a way to scan and determine if a renal mass is an oncocytoma (not malignant typically) without needing surgery.  I contacted them about the trial they had and it was over but they offered for me to come see them to check mine out.  I didnt go becuase I had a biopsy 2 days later but i can get that information for you.  I emailed on a Sunday and had a reply from the doctor within a couple hours. 

     

     


     

  • AnnissaP
    AnnissaP Member Posts: 632
    Angie1496 said:

    My friend's daughter is 24.

    My friend's daughter is 24. THey said this type cancer isn't common in that age group... yours either!  once it changed her doctor jumped on it though.  SHe has her 1st 6 month scans next week!  I can't understand how yours wasn't seen before?  I read alot about cysts and nonmalignant masses before my surgery.  She was tested to see if what she had was the genetic type RCC but it wasn't.  Thank you for your well wishes!  I hope you get more information soon.  I saw 3 urologists and got 3 similay but different recommendations of what to do. I don't know where you are but John Hopkins has a way to scan and determine if a renal mass is an oncocytoma (not malignant typically) without needing surgery.  I contacted them about the trial they had and it was over but they offered for me to come see them to check mine out.  I didnt go becuase I had a biopsy 2 days later but i can get that information for you.  I emailed on a Sunday and had a reply from the doctor within a couple hours. 

     

     


     

    The difficulty is that I am

    The difficulty is that I am in Canada and the healthcare is just awful. Long wait times and non-chalant doctors. I wish there was a way I could drive across the border and be seen in a timely manner. We do not have any type of scan available like you mentioned. That would be great! I question how they did not see the mass before as well, but am not totally surprised.

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Call

    Annissa,

    Call or contac Kidney Cancer Canada at  4936 Yonge Street, Suite 226, Toronto, ON M2N 6S3, Canada


    Phone: (866) 598-7166 and see if they can point you in the right direction. eh

     

     

     

    Icemantooo

  • AnnissaP
    AnnissaP Member Posts: 632
    icemantoo said:

    Call

    Annissa,

    Call or contac Kidney Cancer Canada at  4936 Yonge Street, Suite 226, Toronto, ON M2N 6S3, Canada


    Phone: (866) 598-7166 and see if they can point you in the right direction. eh

     

     

     

    Icemantooo

    Perfect!! Thanks, eh!! Lol

    Perfect!! Thanks, eh!! Lol

  • lobbyist0724
    lobbyist0724 Member Posts: 484 Member
    edited September 2017 #16
    Hi Annissa,

    Hi Annissa,

    In canada, usually when you see "Treat as renal cell carcenoma until proven otherwise" on you CT report regarding a cystic lesion, it can mean a Bosniak III or IV cyst. Bosniak scale  rank the complex cystfrom level I to IV, with four having the highest chance of being malignant. Check this Canadian guideline on Cystic Lesions and small renal mass.

    http://www.cua.org/themes/web/assets/files/cua_guideline_on_the_management_of_cystic_renal_lesions.pdf

    Management of the Small Renal Mass

     

    Also, I recommend you to join Kidney Cancer Canada, the patient advocates there can provide you information dedicate to Canadian.

    http://www.kidneycancercanada.ca/member-area/forum/kccforum.aspx?g=mytopics

    Also, they are having a National Webinar on Sep 23, where you will have a chance to ask the urologists from cancer center like Sunnybrook.

     

    Carmen

  • Steve.Adam
    Steve.Adam Member Posts: 463
    edited September 2017 #17
    Hi Annissa

    The radiologist's report from my first Kat scan had exactly those words 'treat as renal cell carcinoma until proven otherwise'.

    He was right (Clear cell RCC).

    Maybe your radiologist also knows what she is talking aboot.

    Steve

  • Angie1496
    Angie1496 Member Posts: 154
    all 3 of my CT's came back

    all 3 of my CT's came back with "treat as renal cell carcinoma until proven otherwise"  My first doc looked at the CT and said Yep you have RCC.  I was like how do you know for sure.  Every radiologist that looks at the 3 CT's and the first urologist and 2 urologic oncologist said the same thing.  Today I am sitting here with the knowledge that the first urologist was right.  He was almost giddy because they typically don't find this cancer until it has spread because there are no sypmtoms.  He kept repeating... this saved your life. 

  • AnnissaP
    AnnissaP Member Posts: 632
    You guys have been amazing!!!

    You guys have been amazing!!! I am so thankful for your words and feedback!!! I would agree with the radiologist who first said solid mass and then the one who confirmed through the CT scan that it indeed was and to treat it as RCC. Now the wait begins for my appt with this other urologist. I will def check out that website!!!

  • Angie1496
    Angie1496 Member Posts: 154
    Keep us posted Annissa!  I

    Keep us posted Annissa!  I hope you get in very soon!

  • AnnissaP
    AnnissaP Member Posts: 632
    Angie1496 said:

    Keep us posted Annissa!  I

    Keep us posted Annissa!  I hope you get in very soon!

    I will! Thank you!

    I will! Thank you!