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Hi, I was here last summer with questions...

glh1980
Posts: 4
Joined: Jul 2015

Hi.  I was here last summer after finding out I had two complex cysts on my left kidney and a simple on the right.  I'm a 35 year old female.  They were found incidentally when getting a CT scan due to ovarian cysts.  My first urologist was a jerk and said don't worry.  I got a second opinion.  My current docotr is amazing.  We have been following my cysts.  In July they were small, 13 mm for the largest and rated a IIF.  In January the largest was 16mm.  I recently had to go to the ER due to complications from the flu (who knew you could get the flu in June).  Long story short, I ended up getting a chest CT which led to an abdominal CT.  I learned the larger of the two complex cysts is now 4.3cm x 3.9cm.  That seems like a huge amount of growth in 5 months compared to the 3mm of growth I had in 6 months.  I am scheduled for a renal ultrasound next month.  We are alternating between MRIs and ultrasounds.  The ER doctor didn't say anything about the cyst because I warned her ahead of time that I had it.  So she probably thought I knew about the size.  Is it normal for growth to be this quick? I'm just curious.  I see my doctor on July 22nd (I think).  I'm just trying to get an idea of what I should expect and maybe some things that you think I should be asking at this point.  Thanks in advance for your help.

hardo718's picture
hardo718
Posts: 747
Joined: Jan 2016

First of all, is your doctor a urologist/oncologist?  That's some pretty fast growth, and not typical.   Have you been getting copies of your radiology reports?  If not, I would suggest obtaining copies for your records.   You'll know for sure that this is all recent growth.  At this point, don't be surprised if the discussion turns to surgery.  If they are complex cysts you'll want to have them removed.  The next question would be what type of surgery, open vs laparascopic and if you can have a partial nephrectomy vs radical nephrectomy.  This may depend on location of the growths, etc.   Since the growth has changed so dramatically within the last 6 months, you may want to get that appointment bumped up if at all possible.

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

Donna~

glh1980
Posts: 4
Joined: Jul 2015

Yes, I am seeing a urologist at MD Anderson Cancer Center in Camden, NJ.  He's the best surgeon they have there actually.  He's quite amazing.  I do have all the copies of my reports.  I have everything through my patient portal with my radiology center and then I have the copies from my ER visit recently.  My husband is trying to calm my nerves by saying that maybe the radiologist made a measurement error.  I highly doubt that is the case.  I'm leaving to go out of town on Monday so when I return I will call my doctor.  I recall my doctor saying that if any growth occured with this cyst he would just take it out.  He didn't think there would be any but here we are.  Thank you for the advice.  I will keep you updated.  

 

Gabby

icemantoo's picture
icemantoo
Posts: 2624
Joined: Jan 2010

Donna said what I was thinking,

 

Icemantoo

Ladylacy
Posts: 761
Joined: Apr 2012

My son had one of his kidneys removed 7 years ago due to a large tumor inside the kidney which turned out to be cancer.  No spread so no further treatment.  He has his check-ups regularly and then last year they found a cyst on his remaining kidney, small.  After further testing they decided to watch it.  He just had an ultrasound and the cyst was still there but hadn't grown.  What they did find was some on the covering of his sciatic(?) nerve.  The urologist sent him back to his primary and he was told this was a very rare spot for cancer and was probably nothing, but ordered an MRI and now my son is waiting approval of the MRI.  So far it has taken 1 1/2 weeks and still no approval.  His doctor is now fighting with his insurance to get approval.  They don't want to do another CT with contrast (he had one 6 months ago) due to the fact that he only has the one kidney. 

He sees a specialist who deals with kidney cancer and he said that what he saw wasn't his field and so referred him back to his primary that very same day for a referral or further tests.  You should be seeing a specialist.  My husband just passed with cancer (after a 5 year battle) and he was referred to a head and neck specialist who was great and had great experience and that is what you need to being see since these cysts are growing.

Wishing you peace and comfort

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