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Two complex cysts in my left kidney. Need some input please

Mr B
Posts: 6
Joined: Nov 2013

Hello crew ! i have been worried about my upcoming MRI and would like to hear from some people who have been through this. bear with me and I'll give you the longer version

of the story. 12 years ago i was dealing with severe occasional abdominal pain. ( I sincerely believe I passed several small kidney stones ) I had a CAT scan done by my primary

doctor and they found two cysts in the upper pole of my left kidney that were app. 2.2cm x 2.7cm. No one mentioned cancer at all and I was foolish enough not to do any research on my own.

Flash forward to 2013 and I began seeing a new primary doctor and described many symptoms I have that were bothering me. luckily she ordered a new ultrasound...that turned into a CAT scan

and a trip to Fox Chase Cancer center. because of the description of what they found I could tell she was expecting a Cancer diagnosis or at least a surgery to find out what it really is.

 

So now I have a 1cm cyst in the right Kidney and one of the cysts in the left Kidney has grown to app 4cm x 3.5cm. I am scheduled for an MRI soon ordered by the Urologist at Fox Chase Cancer center

so he can do one according to his own protocol. I could tell by his demeanor he believes this "cyst" is a surgical candidate. The cysts are decribed as having calcification and multiple thick, enhancing

septea.

my questions and fears are as follows.

 

if it grew that slowly can it really be a tumor ? I am told these cysts could possibly have been there since birth.

should I be seeking a doctor who prefers to monitor VS. surgery ?

are "cysts" that are 4cm, have calcification and multiple septea always excised ?

and the big one...fear that it is cancer and already spread. I seem to have symptoms that are common in actual cancer cases.

including night sweats, bloating, insomnia, nausea and fatigue. the only ones i dont seem to have are swollen lymph nodes and

blood in my urine.

 

the problem is no one has yet been able to tell if its a Bosniak IIf or a III

 

i am a total stress freak and worry wart ! this is not going well with me....please give me some info that I can feel good about.

icemantoo's picture
icemantoo
Posts: 1653
Joined: Jan 2010

Mr. B.,

 

Diagnosing a complex cyst on the internet is above my pay grade. However I can volunteer that if after all your tests that it turns out to be or will become Cancer at 4 cm it is very unlikely will have spread and any Cancer that size should be cured by surgery alone.

 

I hope this helps until you get your diagnosis.

 

Icemantoo.

Mr B
Posts: 6
Joined: Nov 2013

Yes. i understand....i am not hoping for an 'online diagnosis'. That info helps as any info from someone who has experience with this will also help

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

I am not doctor either.. but from your description, those may be just cysts..  Yes, cysts can be serious too..  but until you get a full diagnosis, don't really know.. but to me that does not sound like Cancer... I could be way wrong... (the size numbers you quoted are on the small side for Cancer in all those years).

OK, so in the mean time, I suggest you look at your diet. Regardles of the diagnosis, you are at less than full capacity in your Kidneys.. so water is your friend..  Plus a lot more...  I suspect our pal Neil will chime in here.. he is the resident diet guy here...

Hang in there... think positive..!

Ron

Mr B
Posts: 6
Joined: Nov 2013

Thanks GSRon...the best news I have heard lately for sure.

 

I have been known to go DAYS without drinking more than sips of water. I am trying to change that in a big way.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Glad to be of help...  Not sure what you had been drinking, but... water should be most of your liquid..And then there is the food part.. Neil will show up soon I bet...  But water is key... your Kidneys will thank you...

Ron

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Hi Mr. B.

I concur with Ron and IceManToo - it seems unlikely you are dealing with RCC.  However, RCC or not, I can provide you with some thoughts about how to modify your diet to reduce your risk of falling prey to this or any other cancers.  And if it should eventually turn into something more sinister - proper nutrition can help keep tumors from spreading while assisting your drug therapy to more work more effectively and with minimal side effects.

I have spent the last year researching what should be the optimum diet to help fight cancer and/or prevent it taking hold in the first place.  I have also applied what I have discovered directly to my own situation - carrying on a clinical trial of n=1, where I am the =1.

Incidentally, I am stage IV with multiple bone lesions.  I have been taking the TKI drug Sutent ever since those bone mets were discovered after a routine CT scan back in July 2012.  Prior to that I had been NED following a nephrectomy to remove an 11cm tumor in my left kidney. That was back in May 2010.

Even though I have been taking Sutent at maximum dosage (50mg/day) for well over one year now, I have not suffered any significant side effects at all. In particular I have not suffered any fatigue, which is the most common side effect for most. I am personally convinced that this is primarily due to the diet that I follow.  Initially my oncologist was rather surprised by how well I was doing - but after then reading my research he is now following much of my dietary advice (even though he does not have any cancer himself).

Meanwhile, thanks to the additon of a monthly shot of Xgeva (which helps strengthen my bones as well as combat new metastases) all of my bone lesions have either only displayed shrinkage; stability; or new bone growth.

I have written up an explanation of the science and rationale behind all of this in a 66-page document which I would be happy to share with you.  If you are interested, just send me a direct email at:

n.feldman@videopost.com

And I will respond with it attached.  It is a .pdf file.

Mr B
Posts: 6
Joined: Nov 2013

thanks NanoSecond...I'll be sending an email shortly. Diet is a huge issue with me, I am a picky eater and do no eat what I should

angec's picture
angec
Posts: 664
Joined: Mar 2012

Hello... If the cysts might have been there since birth, then that doesn't sound too bad. Did he mention Wilms tumor or anything like that?  Usually when they think it is RCC they will say it on the reports.  Did you also have hydroephrosis?  Water in the kidneys? That can give you the bloating and nausea feeling.  Do you have high blood pressure?  I think, they will most probably want to remove that left kidney. They usually cannot tell what it is until they remove it or in the least do a biopsy.  You would do good to have a full body pet/scan.  Ask for one!  But like the others have said. That seems like a very slow growth in all of this time.  So if it is anything and it is that small, then things should be ok. The more stories i hear of doctors not telling patients to follow up, the more i cringe each time i go to a doctor.  Please keep us posted.  All the best to you!

Mr B
Posts: 6
Joined: Nov 2013

angec, thanks for the reply.  no hydroephrosis but i do have high blood pressure that is very hard to control. Its still high even on meds. I am seeing a specialist who does partial nefrectomy and was told

he could do whatever he needs to do laparoscopically so i hope to keep part of that kidney. My cysts are in the upper section and hopefully do not involve the adrenal gland. being nieve I did not at first

understand the cyst would have to be removed to even determine what it is. Im a 44 year old male. they do say that it "appears" to be very close to the renal pelvis but there is also normal kidney tissue

between the two cysts in the left kidney and i was also told that the CAT scan semed to show the closest lymph nodes are of normal size. its the lack of appetite and night sweats that worry me. not to mention

i all of a sudden seem to have severe heartburn no matter what i eat or when.  maybe its just stress from all the worry. I have not been able to find information about specific symptoms one may experience

when the cysts interfere with the adrenal gland. i feel like i am always jacked up, i cant sleep through the night, and often just feel "off" like something isnt right. i also did a complete stress test on my heart due to

a family history of heart disease and amd happy to know that my heart is healthy (and i'm cleared for surgery already if i need to be)...and I am told that surgery is for sure...unless i wish to seek a doctor with a different

opnion.

angec's picture
angec
Posts: 664
Joined: Mar 2012

One thing for sure, you are in a good cancer hospital. They know what they are doing. I know a few people on the boards here go there for their care.  The cysts are also in a good spot and they can take partial kidney. That is also good news! So, besides you feeling pretty awful at present, once you have the surgery I reckon your bp will stablize and you will feel better!  Try to have all of this taken care of as soon as you can, so you can put this all behind you.  Don't read too much online as most of the info is outdated. There are many meds to deal with RCC if it turns out to be that. But it can also turn out not to be cancer.  Take one day at a time!  But do ask for a whole body pet scan, either before or after the surgery. Just to double check. I know it can be scary, but try to be calm. They are still on the small size whatever it is.  And now that you get the night sweats, i bet you have alot more sympathy for those females going through their menopause stages! It is a pain, isn't it? ;)

 

Also check out Smartpatients.com.. There are alot of knowledable folks there as well, with alot of experience. Always good to be on top of things.. .. all the best to you!

 

Mr B
Posts: 6
Joined: Nov 2013

PET scan will be the first thing out of my mouth on the 9th when i have my MRI and again on the 12th when i get my results. I will also be sure to post the findings here. online diagnosis is a trubling thing indeed...if you look long enough you can find ANYTHING you are looking for. very scary.  night sweats are very uncool, not to mention after the intense pain of passing kidney stones i feel closer to my wife than ever before !

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