CSN Login
Members Online: 7

You are here

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

CCope81's picture
CCope81
Posts: 21
Joined: Jul 2016

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. 

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

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's picture
CCope81
Posts: 21
Joined: Jul 2016

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's picture
icemantoo
Posts: 3216
Joined: Jan 2010

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's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

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
Posts: 123
Joined: Jun 2014

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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's picture
medic1971
Posts: 190
Joined: Sep 2015

 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.

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

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

jason.2835
Posts: 337
Joined: Nov 2014

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's picture
CCope81
Posts: 21
Joined: Jul 2016

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's picture
icemantoo
Posts: 3216
Joined: Jan 2010

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's picture
CCope81
Posts: 21
Joined: Jul 2016

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's picture
icemantoo
Posts: 3216
Joined: Jan 2010

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's picture
medic1971
Posts: 190
Joined: Sep 2015

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's picture
CCope81
Posts: 21
Joined: Jul 2016

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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

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

Donna~

CCope81's picture
CCope81
Posts: 21
Joined: Jul 2016

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's picture
hardo718
Posts: 853
Joined: Jan 2016

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

Donna~

CCope81's picture
CCope81
Posts: 21
Joined: Jul 2016

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's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

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

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

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's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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's picture
CCope81
Posts: 21
Joined: Jul 2016

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!

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

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).  

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

CCope81's picture
CCope81
Posts: 21
Joined: Jul 2016

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. 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

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's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

lobbyist0724's picture
lobbyist0724
Posts: 387
Joined: Sep 2016

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

 
todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

Subscribe to Comments for "I should have never googled.....help? I'm new."