I should have never googled.....help? I'm new.

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  • foroughsh
    foroughsh Member Posts: 779 Member
    edited July 2016 #22
    I couldn't stop googling

    I couldn't stop googling either, who can?!the bad news is that it can be cancerous, the good news is that it seems to be stage one, another good news is more than ninty plus percent of stage one patients get cured by having nefrectomy. I suggest you to find a urologist who is expert in kidney cancer. It's a majer and detailed surgery and it's a necessity to be done by an expert.

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    OH your poor thing. But I did

    OH your poor thing. But I did have to think that your vomiting on THEIR floor (right?) got their attention.

    I wonder if something else might be going on. Gallbladder? That would show on a CT of abdomen.But its the irregular borders that was pointed out to me, with my 4.2 CM tumor comparing it to the bright, smooth bordersof the cyst I have too.

    Still, the size of yours is under 7cm which would be stage I. Of course the ANSWER is when they do the path report following your surgery.

    Keep us informed. Sorry you are suffering. Glad no signs of infection.

    Sending you a gentle, real gentle hug,

    Jan

  • CCope81
    CCope81 Member Posts: 21
    Learned something new...

    Had my CT scan can these things really grown in just a few weeks? So I went for my scan and of course they would not tell me anything. But they did tell me the measurements and the last number so it was like 5.7 X 4.9 X 6.2!!!!! Wtf 6.2!?! The doctor said that when these things grow too fast they cause tiny tears in the capsule surrounding the kidney which causes bleed and feels a lot like a stone. Which makes sense... I have been seen 4-6 times a year for the last 5 Years in our ER with left side flank pain and maybe 3 of those were confirmed stones. The rest of them I was dismissed like a pain seeking patient. Despite my refusal to take pain meds. Reading my chart has been very frustrating. Good news is I will have an actual answer on the 26th!

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited July 2016 #25
    I can only say

    Good luck, sounds you're having a rough time of it, right now.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited July 2016 #26
    CCope81 said:

    Learned something new...

    Had my CT scan can these things really grown in just a few weeks? So I went for my scan and of course they would not tell me anything. But they did tell me the measurements and the last number so it was like 5.7 X 4.9 X 6.2!!!!! Wtf 6.2!?! The doctor said that when these things grow too fast they cause tiny tears in the capsule surrounding the kidney which causes bleed and feels a lot like a stone. Which makes sense... I have been seen 4-6 times a year for the last 5 Years in our ER with left side flank pain and maybe 3 of those were confirmed stones. The rest of them I was dismissed like a pain seeking patient. Despite my refusal to take pain meds. Reading my chart has been very frustrating. Good news is I will have an actual answer on the 26th!

    All the best for your appointment

    All the best for your appointment this week. 

    What a drag about the dismissive responses to your going in due to pain. Once somebody cops an attitude and assumes you're simply drug seeking, little you say or do has much impact.

    At least this week, they'll be listening to you (and you to them).  

  • CCope81
    CCope81 Member Posts: 21
    edited November 2016 #27
    Well that didn't turn out as planned.

    So I convinced the doc to give me 3 months to see if Herbert the Kidney tumor was going to get his **** together and stop growing. New scan end of October showed Herbert grew over a full CM in that 3 months. So my trip to de'Nile lane was pretty much useless. Im T Minus 12 days until I have a full nephrectomy on my left side. I have had 3 csections and just bought a new recliner as I remember that being helpful with the c-sections. anyone else have any tips for me? I'm throwing a Celebration of life party for Herbert and my kidney, Ill be serving chili and cornbread (cause it has kidney beans) and I'm sure Ill come up with some equally in appropriate games. But joking aside I'm 35 and really was hoping to keep my kidney. So the more I can prepare the better. 

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    Just read this post

    I just read this post and realize you have a cystic mass as well. Did they categorize your cyst with the Bosniak scale after the CT scan? Mine was given a category III and 50% chance of malignancy. If it is category 1, 2; then it is benign. If it is 2F (F stands for follow up), they would recommend monitoring it unless you wanna remove it.

    Anyhow, good luck on your surgery and wish Hubert is just a naughty benign mass!

    Carmen

    Here is a guideline for Cystic Renal Mass management:

    Guidelines on the management of renal cyst disease

     
  • Abunai
    Abunai Member Posts: 173 Member
    CCope81 said:

    Well that didn't turn out as planned.

    So I convinced the doc to give me 3 months to see if Herbert the Kidney tumor was going to get his **** together and stop growing. New scan end of October showed Herbert grew over a full CM in that 3 months. So my trip to de'Nile lane was pretty much useless. Im T Minus 12 days until I have a full nephrectomy on my left side. I have had 3 csections and just bought a new recliner as I remember that being helpful with the c-sections. anyone else have any tips for me? I'm throwing a Celebration of life party for Herbert and my kidney, Ill be serving chili and cornbread (cause it has kidney beans) and I'm sure Ill come up with some equally in appropriate games. But joking aside I'm 35 and really was hoping to keep my kidney. So the more I can prepare the better. 

    Meh...

    You've got a built-in spare.

    My wife has had 3 C-sections. I've had 1 radical nephrectomy. Her incisions were much bigger than mine, but she's much tougher than I am.

    The chili and cornbread party sounds fun. One of my post-op visitors brought me a can of kidney beans as a gift, and another brought a sympathy card from my right kidney, saying goodbye to my left kidney.

    You'll do fine.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited November 2016 #30
    CCope81 said:

    Well that didn't turn out as planned.

    So I convinced the doc to give me 3 months to see if Herbert the Kidney tumor was going to get his **** together and stop growing. New scan end of October showed Herbert grew over a full CM in that 3 months. So my trip to de'Nile lane was pretty much useless. Im T Minus 12 days until I have a full nephrectomy on my left side. I have had 3 csections and just bought a new recliner as I remember that being helpful with the c-sections. anyone else have any tips for me? I'm throwing a Celebration of life party for Herbert and my kidney, Ill be serving chili and cornbread (cause it has kidney beans) and I'm sure Ill come up with some equally in appropriate games. But joking aside I'm 35 and really was hoping to keep my kidney. So the more I can prepare the better. 

    Appropriate games and preparing...

    Blasted Herbert -- Such a fortunate little dude that you're willing to hold celebration that includes him. 

    As for games, pin the ureter on the kidney (or put the kidneys in the body -- lots of people really don't know where they are exactly), but of course use tape or something that won't put holes in the walls or furniture.  Also, there are anatomy coloring pages that are quite detailed, as well as you-get-to-label them images of kidneys. You could make a list to help fill stuff in (with extras -- or not  -- to confuse folks).  You could also write eulogies for both Herbert and your kidney (or portion thereof). 

    As for preparing, there's a lot here on the forum with specifics.  Loose clothes, but favorites (sort of like comfort food, only comfort clothes).  A timer to remind you to get up and walk.  A pad and pen / pencil to help you keep track of your five minute walkings and your huffing into the plastic breathing thingy.  Good books and/or TV or movies to watch.  A stock of healthy food that's comfort-y, easy to prepare, and colorful (or whatever you want). 

    Also, there are kidney plushies. Go figure, but yes.  Go ahead and google that. 

    Oh, and keep us posted -- All the best!

    Jerzy

    PS -- When's the party? We could eat kidney beans and cornbread that day for dinner, too. 

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited November 2016 #31
    JerzyGrrl said:

    Appropriate games and preparing...

    Blasted Herbert -- Such a fortunate little dude that you're willing to hold celebration that includes him. 

    As for games, pin the ureter on the kidney (or put the kidneys in the body -- lots of people really don't know where they are exactly), but of course use tape or something that won't put holes in the walls or furniture.  Also, there are anatomy coloring pages that are quite detailed, as well as you-get-to-label them images of kidneys. You could make a list to help fill stuff in (with extras -- or not  -- to confuse folks).  You could also write eulogies for both Herbert and your kidney (or portion thereof). 

    As for preparing, there's a lot here on the forum with specifics.  Loose clothes, but favorites (sort of like comfort food, only comfort clothes).  A timer to remind you to get up and walk.  A pad and pen / pencil to help you keep track of your five minute walkings and your huffing into the plastic breathing thingy.  Good books and/or TV or movies to watch.  A stock of healthy food that's comfort-y, easy to prepare, and colorful (or whatever you want). 

    Also, there are kidney plushies. Go figure, but yes.  Go ahead and google that. 

    Oh, and keep us posted -- All the best!

    Jerzy

    PS -- When's the party? We could eat kidney beans and cornbread that day for dinner, too. 

    Kidney BEANS

    Have you never tried Devilled Kidneys? or Steak and Kidney pie ( a true delicacy)

  • todd121
    todd121 Member Posts: 1,448 Member
    edited November 2016 #32
    Large Complex Cyst

    Hi and welcome. Sorry you have to be here.

    I read the entire thread. A few things I might add. I'd find a "urologic oncologist" (maybe you already have one...). These are urologists with special training for masses, their diagnosis and treatment. Often these are the guys that do laparascopic/robotic surgeries and more complex surgeries like partial nephrectomies. It's not to say there aren't regular urologists with those skills, but IMO the urologic oncologists have more training.

    Something that large needs to come out. Soon. You aren't going to know what it really is 100% until they get it under a miscroscope and you get your pathology report back. They just can't tell from imaging except in some cases. I was told something like 90% of these types are cancer. I remember holding on to that 10% that I might have a benign something. Like yours, mine was in the 5 to 6-something cm range.

    You probably should have had a CT scan with contrast. I wasn't clear if you did. That's the scan I keep hearing people need before and after their surgery.

    I know from your other post that you're scheduled for surgery soon. Best of luck to you. Post how you're doing and what the results of your pathology are when you get them.

    Hugs,

    Todd