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

CCope81
CCope81 Member Posts: 21

In April I was seen in the ER for left side flank pain. I was worried as I often get infections or stones and never know until somethings gone really wrong. I can't feel them for some reason. Well the doctor did a CT scan to check for stones and I did not have any. Not any passing that is. But I did have a large cyst. Apparently I have had this thing for a while and no ones told me. Not even the urologist who did my lithotripsy (SP). The doctor said I needed to see a urologist. So I did... A few months later of course. The doctor said it looked like a simple cyst and sent me for an ultrasound. Well.... that was a terrible idea. Comes back it's not a simple cyst it's a complex cyst with septations and an irregular wall? Whatever that means. Its also doubled in size in the last 5 years. Now measuring in at a whopping 5.5 X 4.9 X 5.7 cm. The doctor said he was concerned at the growth rate .66 cm a year average. I was too busy trying to negotiate with him about why it was obviously slowing down since it grew more between 2011-2013 then between 2013-2016 (totally not factual but it sounded good). He stopped me and said "Channa, cysts do not grow. They certainly don't double in 5 years". I said "well what the hell does grow!?!" He deflected with "the good news is it's in a good place if it needs to come out" and "Im ordering a CT scan and I want to see you back in two weeks for the results". He waited 3 months to get the ultrasound to see growth. But now he wants a CT this week. I left, trying to remember to breathe and realized he never answered my question. If a cyst doesn't grow..... What does? Anyone? Cause Google says I either have cancer of the kidney, the plague or chlamydia. 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Get the CT behind you

    Ccope81,

    Get the CT behind you. They usually give a good diagnosis although there may be some uncertainty with a complex cyst. If you are not already seeing a Urologist see one. The bad news is that it could be Cancer. The good news is that it is still a small to medium whatever it is and is usually cured with surgery alone if it  appears malignant. Spreading rarely occurs under 4 cm. Although yours is a little larger than that anything that happens will be caught in the bud after surgery. All of us on this board  were scared out of our wits when told they have or may have Kidney Cancer and they want to remove your kidney. I sure was 14 years ago. Hopefully it is something else, but if you need our help we are here for you. Stay away from reading anything about people with larger tumors as that is not your case.

     

     

    Icemantoo

  • CCope81
    CCope81 Member Posts: 21
    Urologist is master of vagueness

    I do have a Urologist I saw him today and he ordered a CT for next week. Now I need to get a couple good bottles of wine to get me to next week. He wouldnt say anything except it's a "renal mass" now and I need the "renal mass protocol". 

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Urologist

    Ccope81,

    Hopefully you will have your answers when the CT is done. Nothing is going to happen in a week or two. The difficulty is that even if a Cancer diagnosis many of us have had to wait a month or 2 to get a surgery date. Those with large tumors get to the head of the line faster. You do not want to get to the head of the line too fast or take cuts.

    Second there are everyday Urologists who do the men's stuff like Prostate etc. Then there are the surgical Urologists who usually have Laproscopic surgery and Kidney Cancer as their specialties. If you are not already seeing the later or one with such a Urologist in his practise do so. Lets hope for now that this thing is not cancer, but if it is you are going to fight it and beat it. Doctors to not like to tell patients that they have Cancer until it is confirmed, hopefully not in your case.

     

     

     

    Icemantoo

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    I Agree with Ice

    Everyone on this board, patient or family member alike, has gone through what you're going through. On top of Iceman's suggestions, I would suggest you disable Google from your computer.  The problem with Google is that for every legitimate site you find on pretty much any subject, there are three or four sites that have been put together either by companies trying to steer you to buy a product or, worse, by some guy in his parents' basement who had a third cousin twice removed that had something or other, so he thinks he's an expert on the matter.  There's plenty of information out there.  The problem is that a lot of it is either useless or downright wrong and we, as lay persons, don't know the difference.

    I know the waiting is hard, but the CT will give you definitive information next week and your urologist can give you a good course of action, if you need it, at that time.  You have a good support group here that will help you through this. 

  • Pandabear1011
    Pandabear1011 Member Posts: 123
    edited July 2016 #6
    Hi Channa, I am soooo guilty

    Hi Channa, I am soooo guilty of googling. The doctor tells you not to. But, it's so hard. I had a 6.0 x 4.5 x 3.5 cm tumor removed along with my right kidney in May 2014. I am currently still cancer free. My dimensions are only slightly smaller in two places and slightly bigger in one place than yours. I was a stage one(T1b). Here's hoping that yours is just a cyst! Keep us posted. We are here for you, ...Panda

  • hardo718
    hardo718 Member Posts: 853
    Welcome Channa

    Mine was also a complex cyst (malignant) but slightly smaller than yours.  First of all, I would suggest finding out if your dr. is a urologist/oncologist.  If not, that's the type of dr. you want.  Also, even if he/she is, you may want a 2nd opinion.  Other things I would suggest: get copies of ALL your reports so you can have them for your records & take with you when needed.  Then you can look at them & see how long it's been there.  The CT you'll have in a week should be ordered with & without contrast, or you will end up having to have it redone, so find out now to avoid more radiation.  My initial was without and had to have it redone.

    Now, regarding the cyst.  Not sure why your dr. would say cysts don't grow: they absolutely grow.  It's not one of those things that just *poof* appear at it's current size.  I'm not trying to scare you but that's the reality.  I had left sided discomfort for weeks that finally sent me to the dr. and my dr. told me that during the growth phase of the cyst some people will have pain or discomfort and this typically is for about 6 weeks or so, then it goes dormant so to speak, the symptoms also go away until it goes into another growth phase.  I also want to mention that the first dr. I saw told me there was no way I could feel that.  Hence the 2nd opinion for me.  You also asked what septations are?  They are walls within the cyst, making it a complex vs. simple labeling.  Irregular walls?  Hard to say without seeing the report if they are referring to the internal walls or the external walls.  It basically means it's growing.....if you think of the typical structure of a cell and how it looks during growth, it's like a little blob here & a little blob there as it multiplies.  It doesn't look like a ball, perfectly round, and just keep expanding.  (I hope this makes some sense to those reading it)

    Hope this helps.  As others have stated, stay away from internet searches.  You're better here with people that have actually been through it all.  Lots of very educated people here with varying degrees of kidney cancer.  The good news is, so much progress is happening with this cancer, it's not the death sentence it once was.  As others chime in, you will soon become very aware of that.

    Keep us posted.

    Donna~

  • medic1971
    medic1971 Member Posts: 213 Member
    Hello Channa

    So you are in the land of the great unknown.  A place many of here have visited on more than one occasion.  It's no fun and kind of scary.  Xanax became friend :) Here are a few things to keep in mind during this time:

    1.  Whatever the CT scan show please get a second opinion.  The American Urological Association estimates the average urologist sees six cancer and non-cancer kidney tumor cases a year; find someone who sees more than 6 a years, please.  I know you want this out, but please take the time.  

    2.  Begin renal cysts can grow, but so can cancerous too.  Until they can look at it under a microscope, no one will know for sure what it is and that is the **** part of this deal, the waiting game.

    3.  If you do venture out on the World Wide Web make sure you check the source and the dates.  Until you know for sure what's exactly going on 95% of what you read may not even pertain to you.  

    If you have any questions, about anything, please post them to this site

    Hang in there and keep us updated.  

    Jason

  • medic1971
    medic1971 Member Posts: 213 Member
    hardo718 said:

    Welcome Channa

    Mine was also a complex cyst (malignant) but slightly smaller than yours.  First of all, I would suggest finding out if your dr. is a urologist/oncologist.  If not, that's the type of dr. you want.  Also, even if he/she is, you may want a 2nd opinion.  Other things I would suggest: get copies of ALL your reports so you can have them for your records & take with you when needed.  Then you can look at them & see how long it's been there.  The CT you'll have in a week should be ordered with & without contrast, or you will end up having to have it redone, so find out now to avoid more radiation.  My initial was without and had to have it redone.

    Now, regarding the cyst.  Not sure why your dr. would say cysts don't grow: they absolutely grow.  It's not one of those things that just *poof* appear at it's current size.  I'm not trying to scare you but that's the reality.  I had left sided discomfort for weeks that finally sent me to the dr. and my dr. told me that during the growth phase of the cyst some people will have pain or discomfort and this typically is for about 6 weeks or so, then it goes dormant so to speak, the symptoms also go away until it goes into another growth phase.  I also want to mention that the first dr. I saw told me there was no way I could feel that.  Hence the 2nd opinion for me.  You also asked what septations are?  They are walls within the cyst, making it a complex vs. simple labeling.  Irregular walls?  Hard to say without seeing the report if they are referring to the internal walls or the external walls.  It basically means it's growing.....if you think of the typical structure of a cell and how it looks during growth, it's like a little blob here & a little blob there as it multiplies.  It doesn't look like a ball, perfectly round, and just keep expanding.  (I hope this makes some sense to those reading it)

    Hope this helps.  As others have stated, stay away from internet searches.  You're better here with people that have actually been through it all.  Lots of very educated people here with varying degrees of kidney cancer.  The good news is, so much progress is happening with this cancer, it's not the death sentence it once was.  As others chime in, you will soon become very aware of that.

    Keep us posted.

    Donna~

    Thought the same thing

     It's not one of those things that just *poof* appear at it's current size- I thouhgt the exact same thing.  It's not like the Big Bang, one second nothing and then poof it's there.

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Wait, what?

    CCope81,

    I'm a little confused about the protocol here.  It sounds like there is a lot of testing going on here and not a lot of action.  No one wants to think the worst, but you at least want to be prepared for it and you want the most information that you can get from a doctor with experience in these types of things.  While it is no fun to have cancer, I never wanted anyone to sugar coar anything for me.  My doctor is very matter of fact with me and has quoted me a very good survival rate, which put me at ease because I know that if he thought otherwise, he wouldn't say it.

    The main thing is that you have something very suspicious on your kidney that seems to be growing.  Most urologists worth their salt would recommend to go in and remove it ASAP.  Even if it is a cyst or a benign tumor, it should still be removed if you are young and can undergo the surgery.  It can cause other problems.  My opinion is that you need an expert... NOW... and you need answers.  I'm not trying to scare you but it is always better sooner rather than later if it does turn out to be cancer.

    - Jay  

  • CCope81
    CCope81 Member Posts: 21
    Thanks everyone

    Im not sure why he's doing all the testing. I am a little frustrated that I've had multiple scans over the years and noones thought to mention it to me till now. The Urologist said the reason it hurts is because it's stretching the capsule. I called him back and asked him to give me a straight answer about removing it. I work in guardianships so if I'm going to be down for any amount of time in the next 3 months I need to not take anymore new cases seeing the first 90 days are the hardest and then 90 day reports to the court. I'm waiting for him to call me back. I have a feeling it's coming out regardless of the CT scan. My question is.... How many complex cysts with septations, echos, irregular walls and growing quickly on a 35 year old kidney end up being nothing and just monitored? Cause all of the research (all through Universities) say like 0%. Which is a terrible number.

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Something positive

    CCope81,

     

    One of my observations over the years is that the "kids" facing this in their 30's and 40's have a lot easier time recovering than us older guys. I was 59 at the time. I will be 73 in less than a week. I as well as others suggested that you may want a 2nd opinion. Where do you live so that we may chime in with suggestions.

     A lot of times newbies  come on to this board and it is easy to say they are worrying over nothing (such as where they have a little bitty something and the doctor tells them to watch and wait) , but much harder when they may have something to worry about. Prove us wrong. We are here for you throgh this whole process. Each of us here has been there and done that.

    I as well as others still see you having an excellent diagnosis when and if you get nephed.

     

     

    Icemantoo

  • CCope81
    CCope81 Member Posts: 21
    Could it be nothing?

    What are the chances that a renal mass with septations, echos, irregular borders and growing .66 cm a year is nothing? I think that's my hope that it's cyst that is special. Has anyone had something like that that gets left in? My urologist works with a surgical group in Seattle. I was referred from the ER to him. 

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Tough question

    CCope81.

     Growing and 5 cm already. Thats a tough one. It could be benign, but that may not be determined until a biopsy after surgery.

    I sent you a Private Message (PM) regarding a contact to check out Kidney Cancer doctors in Seattle.

     

    Icemantoo

  • medic1971
    medic1971 Member Posts: 213 Member
    It's possible

    It is possible that this could be begin, however it needs to come out regardless of pathology.  In my opinion, you are symptomatic, the cyst is growing, and it's not worth the risk to leave in.  Renal cysts can rupture and cause problems, like bleeding and or infection. 

    The big question is, can they save your kidney?  If they can't, it is in no way the end of the world.  I had a friend donate a kidney and he lives a normal life.  Just make sure whoever operates on you has a lot of experience in this area.  Just flat out asked them how many of these have you done?  I assume that you live near Seattle, you should consider a second opinion at the University of Washington Medical Center.   It’s a top ranked cancer hospital in the country.  Here is their listing on US News and World Reports:

     

    http://health.usnews.com/best-hospitals/area/wa/university-of-washington-medical-center-6910750

     

    Keep us posted. 

  • CCope81
    CCope81 Member Posts: 21
    Thanks... Sudden pain normal?

    I'll check out UW. I actually graduated from there. I was sitting on the couch today and something suddenly hurt. Like I kinda wanna cry hurt. Hurts to breathe too. I can't get comfortable at all. 

  • hardo718
    hardo718 Member Posts: 853
    Sounds like...

    ....you need to be seen....sooner rather than later.

    Keep us posted.  I'll keep you in my prayers.

    Donna~

  • CCope81
    CCope81 Member Posts: 21
    Thanks guys!

    I went to the ER when I started vomiting. They didnt want to scan me since I have a CT this week and I had one in April. So they just gave me some pain meds and zofran and Im laying around stoned.

  • hardo718
    hardo718 Member Posts: 853
    edited July 2016 #19
    And now what??

    That's great to treat the symptoms, and now what about the cause?  I'm hoping they didn't send you home.

    Donna~

  • CCope81
    CCope81 Member Posts: 21
    Lol Oh no they did

    They sent me home after labs and urine came back ok. I did however vomit on the floor on my way out. I'm fine today just feel achy.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760
    CCope81 said:

    Lol Oh no they did

    They sent me home after labs and urine came back ok. I did however vomit on the floor on my way out. I'm fine today just feel achy.

    But really

    But really, tell them how you really felt about the care you got. Good timing, good parting shot. Too bad the ones who have to clean up the barf aren't the ones who were working up a treatment plan. 

    Keep us posted,

    Jerzy