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Kidney Cyst and Upcoming Appointment - New Member

dpitts2014's picture
dpitts2014
Posts: 17
Joined: Sep 2014

Hello everyone, and thank you in advance for reading my post - I'm sure it's going to be long.

I work as a medical assistant for a Family Practice doctor, so when I came up with a whopper of a UTI they treated me with immediately with some strong antibiotics.  I was running a fever as well as having red and white blood cells in my urinalysis.  A couple of days after I finished my prescription, the UTI came back with a vengeance.  I didn't have insurance at the time, so we didn't send off for a culture, but tried another family of antibiotics that usually works well with UTIs.  But, when I started having more severe right sided kidney pain and low-grade fever, the doctor decided it was time to stop playing around and sent me to the ER.  I have a history of kidney stones, so they opted to do a CT, which ended up showing a 7 cm complex cyst on my right kidney.

This was ten days ago, and my husbands insurance kicks in Wednesday, October 1st.  On that day, I have an appointment scheduled with a urologist that specializes in female urology and oncology.  All I know now is that the CT showed septations and some calcification in the cyst (which by the way is such a benign sounding word for something so potentially terrifying!)

From what I've read online, these cysts don't usually show any signs or symptoms in early stages, but I am having full blown horrible right sided back and flank pain, that at time shoots down my leg as well.  Persistant UTIs.  Fever mostly at night. And I am absolutely exhausted!

So, here I am asking for advice and/or wisdom from those who have already gone through this.  What types of questions should I ask the uro?  What will he most likely ask/do?  What am in for in the near future?  Any and all input is greatly appreciated!

icemantoo's picture
icemantoo
Posts: 3183
Joined: Jan 2010

dpitts,

 

Being able to tell whether your complex cyst is or is not malignant is above my pay grade. It depends on its size and characteristics. From that they are able to estimate the chances of it being malignant. If it appears that it may be malignant they mayl want to do a nephrectomy or partial nephrectomy or watch and wait for a short period.. All of us on this board have had one. Mine was 12 years ago. These are usually done by a urological surgeon, not necessarily the one you are seeing.

 

As for the flank pain and pain down your leg they could be a 1000 different things other than kidney cancer as well as kidney cancer.

 

Good luck with your meeting with the urologist. We hope we have to never hear from you again, but if we do we are here to help you.

 

Icemantoo.

dpitts2014's picture
dpitts2014
Posts: 17
Joined: Sep 2014

Thanks for your info Icemantoo,

I just had a full hysterectomy in June of this year, and am so not looking forward to another major surgery.  Thank God my youngest child is 14 and she is able to help me and Dad out with everything.  My oldest is going to be a Daddy in January though, and we are just starting all of the planning for baby showers for my daughter-in-law.  I really hope that I can be mostly past all of this before my grandson is born!  Prayers that it is nothing to worry about!

Thanks for "listening", Debbie

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Debbie.. welcome to our group.  First question, was the CT scan done with Contrast.?  If so, then an RCC experienced Radiologist would know if it is Cancer or not. 

And because of what you stated, sounds like a surgery is in your near future.. sorry..  But you do need someone with the right experience, this is important.

And if it was not done, you need a CT Scan (with Contrast if possible) of the chest, abdomen, and pelvis areas.  This will rule out any other issues.  The doctor may also want an MRI to get a different type of image.   At 7 cm it could be bigger due to how scans work.

Hang in there.. the fear is worse than the reality..

Ron

dpitts2014's picture
dpitts2014
Posts: 17
Joined: Sep 2014

Hey Ron,

The CT Scan was without contrast, which is a little scary for me, because so much detail was visible without it that I can only imagine what they will see with!  I don't know if it makes any difference but the cyst is on the lower pole of the kidney, and is palpable to the touch.

The report calls it a " 7cm hyperdense lesion involving the lower pole of the right kidney, with incomplete characterizations that could represent septation and mild calcification.  This most likely represents a complex cyst, but followup with renal ultrasound is strongly recommended for confirmation".

So, I'm not holding out a lot of hope for a miracle of a simple or hemorrhagic cyst - but I sure wouldn't look a gift horse in the mouth if the ER radiologist read it wrong!  I've pretty much set myself on having to have it removed, but the staging and possibility of mets scares the living crap out of me!  I don't want to borrow trouble, but being in the medical field myself, I'd rather be prepared for the worse than be surprised...

Debbie

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Debbie there is always a lot of detail with a good scan.  But with the Contrast, it will light up if there is a big uptake, which signifies Cancer.  That said, what is your Creatinine level..?  If it is high, then they will not want to use the Contrast, or they may use half dose.

Ron

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Was there visible blood in your urine? You can get some pretty major pain if you're bleeding heavily enough to see the blood. Blood clots can move into the ureter and it is as painful as a kidney stone. (I'm speaking from experience!)

Now, take what I say with a grain of salt, because I never studied medicine. But as I remember my urologist had told me that these complex cysts of that size (7 cm is right on the edge between Stage 1 and Stage 2 size), about 90% of them are cancerous. However, I'm pretty sure for them to decide that that is likely, they're going to need to do a CT with contrast. I'd skip the ultrasound if I were you. It makes no sense to do an ultrasound now. You need a CT with contrast. Anyways, your urologist will make this call. If you can see a urologic oncologist, that's best.

In the end, they won't know until you have the pathology report on the thing what it really is. I'd be surprised if they won't want to take it out. If it's in the lower pole, you might be able to get a partial nephrectomy, which would save you some kidney function. Not all urologists do this kind of surgery. You might have to shop around.

A second opinion is always a good idea. Urologic oncologist is the specialist that really knows the difference between these various cysts and cancer (types of masses in the kidney).

If you want to read something that might help you understand, I suggest this website:

http://www.kidneycancerinstitute.com/

It's a great introduction to kidney masses, types, probabilities, how fast they grow, and different treatment options. Dr. Landman was the surgeon that took out my right kidney. He's a really great doctor.

Todd

dpitts2014's picture
dpitts2014
Posts: 17
Joined: Sep 2014

Thanks Todd,

The Family Practitioner I work for recommended the urologist I am seeing tomorrow.  He does specialize in both urologic oncology and female urology - and he has an office here in Katy, TX only 5 minutes from my office.  WIN, WIN!!  I'm hoping he will order the CT with contrast tomorrow.

There was heavy blood in the urinalysis, but it was not visible to the naked eye, and no clots.  I too have had kidney stones in the past, and the sensation is very similar - the horrible pain between my ribs and hip bone along my back and flank.  But, where as the pain of the stone moved with the stone, this has been consistant for almost 2 weeks.  I'm using some heavy duty pain meds just to function - and I hate taking much more than Tylenol or Ibuprofen.  This hurts worse than my hysterectomy, and that is saying alot!

But, enough of me whining....  I've been preparing my work and my family for me to have another major surgery.  No one is happy - I am not a very pleasant person when I have to depend on others!!  I get in trouble for sneaking out of bed to get things rather than asking.  I think my daughter is planning on using restraints this time :)

My appointment is at 2 tomorrow, I'll let y'all know what the game plan is!  Thanks for listening!

Debbie

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Debbie, If it turns out to be an op maybe Radiofrequency ablation could be an option. Obviously it is dependant on the whereabouts of the cyst. That was the method on offer when I lived in Dallas, I had it done at Southwestern. It is a much easier and quicker recovery, less painful and I was up and around in no time. Unlike this time with the Partial Nephrectomy. Perhaps you could ask to see if it's a possibility.

 

Djinnie x

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

Rfa is usually only for masses less than 3 cm.  I know this as I had a 2 hour consultation with an expert last year before my partial. 

 

 

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

I have heard that MD Anderson in Houston has some RCC experts, in case you need better expertise..

Ron

dpitts2014's picture
dpitts2014
Posts: 17
Joined: Sep 2014

My Dr. was able to pull up the CT I had done in the ER, and, believe it or not, the ER radiologist reported my cyst as 7 cm when it is only 7 mm!  Great news, almost no chance of RCC, bad news, most likely a renal abscess.  My WBC count is still elevated, and there is still blood in my urine.  Along with the fever and fatigue, he is almost certain of pyelonephritis of some sort and the anti-biotics I have taken have just pissed it off.  Still getting a CT with contrast to find the issue, and he will be able to get a better look at my tiny little lesion at the same time.  All in all, couldn't have expected better!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Debbie, 

CONGRATULATIONS!!! What brilliant news!! I am so, so pleased for you:) Not very impressed with the Radiologist mind!

You just need to get the problem sorted now, so get well soon:)

 

Take care!

 

Djinnie x

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I know you don't like this news, but better than having RCC and needing surgery. Your other symptoms and lab didn't really fit. This is good news. Hope you get it taken care of soon and get better.

So, what are you doing here? Get out of here. :) Happy to say that, and I hope you're happy to hear it.

Todd

icemantoo's picture
icemantoo
Posts: 3183
Joined: Jan 2010

Debbie,

 

I was almost certain that your 7cm comlex cyst was malignant, but I wanted you to hear it from the doctor rather than someone else from this board. 7mm you say. NBD.

 

Icemantoo

 

Whose blue curlers are those in your picture?

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