Totally Confused!!!

2

Comments

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited September 2017 #22

    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

    oops, I thought the problem

    oops, I thought the problem is from the cyst, so please refer to the one about small renal mass.

    All the best!

  • AnnissaP
    AnnissaP Member Posts: 632 Member

    oops, I thought the problem

    oops, I thought the problem is from the cyst, so please refer to the one about small renal mass.

    All the best!

    Thanks!!!

    Thanks!!!

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Angie1496 said:

    Keep us posted Annissa!  I

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

    Great news! I called the

    Great news! I called the office of the new urologist and I see him next Thursday!!!! The secretary was amazing!!!!

  • BoondockSaint
    BoondockSaint Member Posts: 242 Member
    edited September 2017 #25
    I'm so glad you are getting

    I'm so glad you are getting things rolling now. I know the next few days until you get in are going to be stressful.....Hang in there and keep us updated.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Will try my best! I am so

    Will try my best! I am so relieved it is a short wait. Thanks for the encouragement!!!

  • Angie1496
    Angie1496 Member Posts: 154
    edited September 2017 #27
    Wonderful News!!  I have my

    Wonderful News!!  I have my followup from surgery the same day!  I will keep you in my prayers!

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Angie1496 said:

    Wonderful News!!  I have my

    Wonderful News!!  I have my followup from surgery the same day!  I will keep you in my prayers!

    I wish you well!!!! :-)

    I wish you well!!!! :-)

  • Kat23502
    Kat23502 Member Posts: 179 Member
    Hi Annissa! As others have

    Hi Annissa! As others have said, a second opinion is most definitely warranted. A mass not showing on CT could be for many reasons. Sometimes it isn't organized enough to uptake the contrast, sometimes physicians just miss things. I suggest from here on out you be sure to obtain copies of all reports and exams. Your best health advocate is yourself. That being said, with a small mass you should do just fine. I had a partial nephrectomy about 18 months now and aside from some scars, my recovery went well.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    edited September 2017 #30
    Thanks for the info. I am

    Thanks for the info. I am glad you are doing well. The 2nd urologist is known by my family dr and has a lot of experience. I def want a copy of my CT results. The mass showed up clearly on both tests (ultrasound and CT scan with contrast dye). I just hope this urologist takes care of it!!

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    I have an update! Saw the

    I have an update! Saw the urologist and he is quite positive it is renal cell carcenoma. He is sending me to an oncologist he knows very well for a partial nephrectomy. He said the tumor does not have characteristics of a benign tumor and that it will be taken care of quickly. He also told me it did not show up on any other scans 6 months and one year ago because the large cyst I have was covering/hiding it. So thankful they saw it this time! I am so relieved this is being taken care of, but am also in denial at this point.

  • Rockspin
    Rockspin Member Posts: 77
    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!  

    Surgery over with

    I had a total kidney removal on Tuesday  and now awaiting the pathologist report. The orig scan said it was 3.7 and the surgeon was positive he got it all out. I'm walking and trying to get back my strength. It was laparoscopic so I have 4 little incisions and one longer one on my old cesaerian scar.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Rockspin said:

    Surgery over with

    I had a total kidney removal on Tuesday  and now awaiting the pathologist report. The orig scan said it was 3.7 and the surgeon was positive he got it all out. I'm walking and trying to get back my strength. It was laparoscopic so I have 4 little incisions and one longer one on my old cesaerian scar.

    Wow. Hoping you heal quickly!

    Wow. Hoping you heal quickly!! How is the pain (if you don't mind me asking)?

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited September 2017 #34
    A warm welcome Annissa!

    A warm welcome Annissa!

    Glad you got answers and good feedback from folks here!

    Not sure why you need to see an oncologist. I take it your urologist does not do this type of surgery for renal cancer? Why not? Just curious.

    Most likely your cancer will leave with the surgery and you'll be just fine. 

    Of course you'll be monitored for 5 years. Your tumor is in the Stage I category.

    Keep us informed. We'll be here for you all the way!

    Hugs, Jan

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Jan4you said:

    A warm welcome Annissa!

    A warm welcome Annissa!

    Glad you got answers and good feedback from folks here!

    Not sure why you need to see an oncologist. I take it your urologist does not do this type of surgery for renal cancer? Why not? Just curious.

    Most likely your cancer will leave with the surgery and you'll be just fine. 

    Of course you'll be monitored for 5 years. Your tumor is in the Stage I category.

    Keep us informed. We'll be here for you all the way!

    Hugs, Jan

    Thank you so much! He said he

    Thank you so much! He said he is not qualified to perform the laparascopic surgery so will send me to this other guy who is supposedly highy skilled. I hope this is the first and last time I have to deal with this!!! It hasn't even hit me yet that this is real.

  • Angie1496
    Angie1496 Member Posts: 154
    I am so happy you got answers

    I am so happy you got answers and are oging to  have surgery for this!  I also was referred from my urologist that found the tumor to a urologic oncologist that performed the surgery.  Denial is normal I think.  I know I was.  I am still in disbelief that I am a cancer patient, a survivor.  Keep us posted on the surgery date.  If you have any questions about the surgery and recovery please ask! Kiss

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Angie1496 said:

    I am so happy you got answers

    I am so happy you got answers and are oging to  have surgery for this!  I also was referred from my urologist that found the tumor to a urologic oncologist that performed the surgery.  Denial is normal I think.  I know I was.  I am still in disbelief that I am a cancer patient, a survivor.  Keep us posted on the surgery date.  If you have any questions about the surgery and recovery please ask! Kiss

    I do have a question!! How

    I do have a question!! How painful is it and how long is the recovery usually? To get back to "normal" life. I think the reality of it is gradually setting in. We continue on with life and responsibilities so not much time to think about things.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    It does not hurt

    Annissa,

     

    If I told you that I would be laughed off this forum. At 59 I was back to a slow norman in 6 weeks, Everyone is different.

     

    Icemantoo

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    icemantoo said:

    It does not hurt

    Annissa,

     

    If I told you that I would be laughed off this forum. At 59 I was back to a slow norman in 6 weeks, Everyone is different.

     

    Icemantoo

    Thanks for the honesty. I

    Thanks for the honesty. I totally believe that timeline!

  • Angie1496
    Angie1496 Member Posts: 154
    edited September 2017 #40
    The pain was not as bad as I

    The pain was not as bad as I expected it to be. After you wake up and they let you start moving walk as much as you can tolerate. This helps the gas they used to inflate your stomach for surgery. Stay ahead of the pain with your meds. I started working from home 6 days after my surgery. i still seem to tire easily with a lot of activity but feel I am almost back to normal. I am going to try the gym tomorrow. With my Doc's approval of course. Since I met with him yesterday and had him answer all my questions I have found my mind is letting go of the fears and worry I had this time last week. I know this isnot something I'm going to be able to not think about again, but I am moving forward with living Life. I even got a promotion while I have been out of the office! 

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Congratulations on the

    Congratulations on the promotion. The dr said 4 to 7 days down time, but I def see it being longer to get back to where I am now. I am a bartender at a super busy place and I just do not know when I will be able to go back and be 100%.