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Complex Kidney Cyst

moconnor166
Posts: 7
Joined: Oct 2015

I'm a 62 year old male, and I work as a Teachers' Aide in a high school. At the beginning of August, I went for my regular annual physical exam at the local Veterans' Administration Clinic, where I've gone for many years. I'd been feeling fine all summer, and had been swimming and walking regularly. I considered skipping the physical, since I felt well, but since I had a prescription for cholesterol medication that needed to be renewed, I followed through with it.  The results of my urinalysis showed blood in my urine. It must have been microscopic, as I'd never noticed it before. The Physicians' Asst. said it was a common symptom, usually nothing to worry about, but since I'd never shown it before, he scheduled me for an abdominal ultrasound at a Veterans' Administration Hospital some distance away.

 

I had the ultrasound in mid-August. The results were sent back to the local Clinic. The Physicians' Asst. said it showed an irregular "raggedy" shaped cyst on each kidney. He said I should have either an MRI or a CT Scan done. Since the V.A. Hospital doesn't have MRI capabilities, I went to the local Health Clinic, saw the doctor there, and asked for a referral for an MRI. She told me that she needed to order the ultrasound results from the V.A. Clinic. After she received them, she ordered the referral for an MRI.

 

The MRI was done at a local hospital Radiology department on September 11, and the results were sent to the local Health Clinic. They showed a "complex cyst on my left kidney". The Health Clinic doctor said that it needed further evaluation, and she gave me a referral to a Urologist. I now have an appointment scheduled there for October 9. I'll be bringing a copy of the MRI, on a disk, with me to the appointment.

 

Back in August, I wasn't too concerned, but I've been looking up "complex kidney cysts" online, and based on what I've read, I've become very worried. I'm keeping busy with my day-to-day job and family responsibilities, but it's become hard to concentrate. Physically, I feel well. The only symptom I've had was the initial blood in my urine result back at the beginning of August. Now I'm concerned about the possibility of cancer, and I wonder how I should handle this. Thanks for any advice or information that might be available.

 

 

APny's picture
APny
Posts: 1987
Joined: Mar 2014

You are doing the right thing following it up. I’m not familiar with the use of MRI for kidney imaging but I imagine the urologist will also order a CT scan with contrast to get a better idea of the cyst. If the urologist you’re seeing is not very experienced with kidney cancer and/or complex kidney cysts make sure you get a second opinion from one who is. Should it turn out to be the worst case scenario and it’s cancer, chances are they caught it early. Surgery is a possibility even for non-cancerous cysts especially since it already caused you to pass blood in your urine. Which, for many of us, was the only warning sign.

If surgery is mentioned, again, seek out a surgeon with lots of experience with kidney surgery. Partial nephrectomy if possible is the way to go to spare as much of your kidney as possible. Many surgeons are not experienced in this and would want to do a complete. So don’t settle for that if there are other options from more experienced surgeons.

Wishing you the best and if you do have to have surgery it’s not going to be as bad as you fear. My fears and anxieties far outweighed the reality which really wasn’t all that bad pain and recovery wise.

moconnor166
Posts: 7
Joined: Oct 2015

Thanks for your response. My appointment with the Urologist is still a week away, so I'm trying to get myself as familiar as possible with the situation. I live in Springfield, Massachusetts, which has 2 large hospitals ( Baystate Medical Ctr. & Mercy). The Urologists' Office that I was referred to has a good reputation locally, and there are several Urologists working there, so I feel good about that. They have a website, and they apparently treat a great many urological problems, and it also lists kidney cancer as one of them, so hopefully they're experienced, in case that comes to pass, although I'm hoping it won't turn out that way.

I do appreciate your good wishes.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Glad you found  us, but sorry  for  all you are going  through at this  time. Most of us have been through finding something "accidently."

I  know you are worried,  but until your Urologist tells you, and the pathology report confirms the results, try not to let this interrupt LIVING!!

My Primary doc ordered an MRI, following an ultrasound (for something elsea)  which showed something worrisome. BUT as the folks ton this forum explained to me, the Urologist wants a CT  with contrast.

CT scans are much easier and faster than an  MRI and more precise for this purpose. MRI's are good for other conditions.

From what I have learned Kidney cancer is very treatable and if caught early often  is Stage I. IN other words, once that nasty tumor is gone (surgery) mostl likely so  is the cancer. I am nearly two years NED=no evidence of cancer.

You are then followed for several  months/years to make sure nothing has changed after surgery.

Now it could be a cyst too. I had both. The Urologist showed me how the tumor's margin's  looked  differently than the cyst.

So  IF you  do have kidney cancer more likely it can be removed and you'll be fine.

If you do need surgery, ask if the Urologist does Robatic, laproscopic surgery=less  invasive, easier recovery.

However, you  may not be able to work for several weeks while you insides recover. 

Again, we're here for you and remain on this forum to  support folks like yourself!

So ask any questions you think of, ok?

Warmly, Jan

db8ne1's picture
db8ne1
Posts: 142
Joined: Feb 2013

You didn't indicate the size of your mass(es). I'm guessing they are likely small if found incidentally.

My urolgist and I watched a small mass in my left kidney for 1 1/2 years (it grew with each CT) and finally opted to undergo a partial nephrectomy.  The reason for the wait was that I was in the midst of Stage 3 colorectal cancer - so the kidney mass was a smaller issue.  I then went to a kidney surgeon that specialized in oncology and had a Davinci robot assisted surgery.

My latest CT showed a worrisome growth on the OTHER (right) kidney.  My oncologist/kidney surgeon requested an MRI for further study.  He seems to like the details of the MRI versus the CT. My regular (non-oncologist) urologist likes CT's better.  I guess it's up to the doc and what they are used to.

Anyway, be patient.  Most RCC is slow growing.  And if yours is small there is a very high chance a quick surgery is all you will need to take care of the issue.

Best wishes and keep us updated!

J

moconnor166
Posts: 7
Joined: Oct 2015

 Today is Saturday, and my Urologist appointment is scheduled for next Friday afternoon. Hopefully I'll find out more about the cyst at that time. All I know right now is that it's a complex one. In the meantime, I feel quite well (except for worrying), so I plan to carry on as usual at work, and with my family, and hope for the best.

 

Thanks so much for the responses and kind thoughts.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thinking about you and hoping all goes well for you this week!

Hugs

Jojo

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Moconnor

I am originally from Springfield. Still have relatibes up that way. My brother had a cyst diagnosed last year and I went in to quite a few questions with my oncologist (my brother also was just seeing a urologist) For him. His was still simple. My doctor basically said that if  it goes complex, it is worth considering having it removed as it can evolve into RCC. 

I suggest writing down your questions as you think of them this week. Write down your answers as well. It can be a hectic situation and remembering stuff will not be easy.

I have a relative from Springfield That had RCC, I would be happy to reach out and see who treated him. He was stage in and wound up in Boston for an RCC specialist. send me a private mail if you want the info.

definately give me a shout if you ever bought a bottle from 4 Corners package store In East Longmeadow...it was my grandfathers store.

Be well!

jason.2835
Posts: 337
Joined: Nov 2014

Moconnor166,

It is true that many times a complex cyst can turn out to be cancer.  But there's good news.  Generally, the more cystic the mass the lower the grade can sometimes be.  There's a subtype of cancer called multilocular cystic RCC that has an extremely favorable prognosis; as in, it's never had a metastasis.  My tumor was partially cystic but the MRI doc immediately ruled it "cystic renal cell carcinoma."  It was less than 3 cm and my prognosis is excellent.  Just went thru my 1-year scans in which everything looked good.  

Rather than getting too excited in the negative, just be thankful that it was found and that you can now begin the treatment and it will soon be on the correct side of your body (OUTside).  You didn't get into size, but it sounds like they are on the small side considering the fact that they didn't show any symptoms.  

Good luck and keep us posted of any new information so we can help you out further.

- Jay

moconnor166
Posts: 7
Joined: Oct 2015

Thanks for the replies. My urology appt. is scheduled for tomorrow afternoon, so I'll have a better idea soon of where to go from here. Best Regards to everyone on this forum.

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Wishing you the best and please get back to us with what he said.

moconnor166
Posts: 7
Joined: Oct 2015

Well, I had my Urology appt. last Friday, Oct. 9. I was seen by a Physicians' Asst, rather than a Urologist, which evidently is standard with new patients. The Physicians' Asst. was courteous and helpful, and she seemed knowledgeable. I brought a copy of my MRI on a disc with me. She said that she'd viewed it, and shown it to the Urologist, and it confirms a small complex cyst on my left kidney. There were also several simple cysts on both kidneys, including a hemorrhagic one, which probably caused the blood in my urine in August.

She said that the complex cyst is small, and is being classified as a Bosniak IIF cyst, which means that it could possibly be cancerous, but most likely isn't. She recommended having follow-up ultrasounds every 6 months, to see if the cyst is staying the same (which would be a good sign), or growing (which wouldn't be good). So that's what I will do, and I made an appt. for an ultrasound in April. I guess this monkey is going to be on my back for awhile, but I'd been mentally gearing myself up for a cancer diagnosis, so all in all, this isn't bad news. I actually feel well physically. They also did another urinalysis at this appt., which came out normal.

I really do appreciate the support on this site, and best regards to you all.

 

 

 

 

 

 

 

 

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

Good news. Glad you are feeling good and had a normal urinalysis recently. Wishing you well.

APny's picture
APny
Posts: 1987
Joined: Mar 2014

The risk for malignancy is small for a IIF, the NIH puts it around 5 percent. So I think you can breathe a little easier. Monitoring is the usual procedure so they're doing everything properly. Best of everything to you!

moconnor166
Posts: 7
Joined: Oct 2015

Well, it's been about 4 years since my posts above. It turned out that the bloodin my urine was from a kidney stone, which passed in Spring, 2016 (very painful, but so far no recurrence).  But I did connect with a urologist, and have been seeing him once or twice a year since then. He characterized my kidney cyst as Bosniak 2F, and advised me to have an ultrasound every 6 months, to see if any changes happen with it, or if it enlarges. So I've followed through with that, and have had ultrasounds once or twice a year from 2016 until the present. Up until my latest ultrasound 2 weeks ago, there were no changes. However, at my appt. earlier this week to discuss the results of my latest ultrasound, I was told that the cyst has grown a bit larger, and he now wants me to have a CT scan done before my next visit so that he can get a clearer idea of what's going on with the cyst. It was his nurse-practitioner who gave me this information, the urologist himself wasn't available. I'm now a bit worried, as all my results for the past 4 year showed no change, but now it's grown a bit. The nurse-practitioner didn't seem too alarmed, and she said they'd schedule the CT scan for 6 months down the road. I'd actually rather have had it done sooner, but maybe I'm over-reacting, and the CT scan is just a normal precaution.

 

I'm just wondering, has anyone else here ever had experience with a Bosniak 2F cyst, or with something similar ? Thanks for any help that's available.

Biner
Posts: 54
Joined: Apr 2020

yes I was 2f complex cyst and unfortunately, next scan after one year and 4 month was already 4.5 solid RCC

 

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