You could have knocked me over with a feather...

JerzyGrrl

Well, you still can. 

Went to my pre-op yesterday, for surgery scheduled right after Labor Day.  The surgeon said he'd been studying my CTs from almost 4 months ago and -- in spite of the radiologist and the nephrologist identifying it as a (solid) tumor -- the mass perched on top of my kidney appears to be a fluid-filled cyst. Nothing in it except fluid.  Hardly no blood supply to the little sucker, either, which would make most self-respecting cancer cells more than just a tad put out (Well, that last sentence is the Jerzy interpretation of what he said).

So, no surgery, unless I still wanted it (AS IF!). We're going to watch it. Another CT next month, then if all is well follow up in 6 months with an ultrasound. 

Needless to say, I'm in shock and beside myself -- with gratitude. Also, all the stress that's been quietly been building up in spite of my mostly positive attitude is rushing out.  I think I'm scaring the dog, because he figures his mama has suddenly developed bipolar symptoms and is cycling (quickly!) between depressive and manic behavior, hugging a box of tissues and tearing up one moment then ready to tap dance on the table top the next (OK, that last one isn't really true -- I can't tap dance and if I were to get up on a table top would probably fall off and injure myself).  Not to mention, I've always hated roller coasters. 

So -- Has Uncle Ned already come for a visit? Maybe? Yes?

Funny, I think I'm still going to have scanxiety when I head for that CT next month. 

Still in shock,

Jerzy

 

icemantoo

Two questions

Jerzy,

 

 

Two quetions. How big is the litlle bugger and have you got a second opinion from a Urologist who does kidney cancer surgery?

 

Icemantoo

lcsvb

Great news!!

Jerzy, that is amazing news!

JerzyGrrl

icemantoo said:

Two questions

Jerzy,

 

 

Two quetions. How big is the litlle bugger and have you got a second opinion from a Urologist who does kidney cancer surgery?

 

Icemantoo

The little bugger...

Good questions, Iceman.  The little bugger (in early April) was 3.5x2.7x3.3. I hadn't gotten a second opinion before, because everyone seemed to be on the same page.  As for the latest news -- I haven't gotten a second opinion yet -- I figure I'll get the September CT and take it from there, because most likely anyone else I see would want a recent CT to go with the earlier one. Of course the 2nd opinion person might want "their" CT...

My current surgeon is a urologist who does kidney cancer surgery (lots).  Having the little extra time will help me track down who a "second opinion" surgeon might be nice if I feel that's a direction I want to go in. 

icemantoo

Not sure what to say.

Jersy,

If it were 1 or 2 cm probaably nothing. Somewhere I read thateven if its uncertain tey take it out at 4 cm. Sometimes they are even bigger and lok malignanant and turn out not to be. The good thing is that either way  your prognosis is excellent. No bungee jumping while you are waiting.

 

Icemantoo

 

Icemantoo

hardo718

WOW!!

Your one line that concerns me a bit, "Hardly no blood supply to the little sucker".....but there is blood supply? 

Not trying to be Debbie Downer, but as Iceman suggested, I would be getting a second opinion.....and take both CT's reports with you.

Keep us posted please.  Not a fan of roller coasters either, but elevators don't bother me to much, so ride on.

Donna~

Jojo61

It sounds like your prayers

It sounds like your prayers have been answered!! But, just to be on the safe side, a second opinion is a good way to go!

Hugs

Jojo

APny

To the best of my limited

To the best of my limited knowledge, if it doesn't enhance, it's a cyst. Does the CT report say "enhancing" anywhere? I think your surgeon is most likely right since he's had so much experience with such operations but I agree with everyone. Have another urologic oncologist evaluate your CT scan.

sblairc

Get a new opinon

I would get a second opinion and strongly consider the surgery if the other opinion was "inconclusive" or recommended it. 

My husband's kidney cancer tumor was less than a half a centimeter away from becoming Stage 4 and protuding through the fascia, I'd get a second opinion right away just to be safe. 

JerzyGrrl

Second Opinions and such...

Thanks, all -- I wasn't worried about second opinions when we were looking at surgery. Now that we aren't (and you all have chimed in), does seem like an idea to consider.  At this size, it's in the "most likely OK to take a wait-and-see approach" ballpark.  At least we're watching it, rather than just saying, "Meh."

It's sounding to me like a Type IIF cyst, which means it's just the tiniest bit more complex than a simple cyst, and they follow it (and me ). A wee bit of enhancing, but very thin simple walls, "not ugly" (that's actual surgeon speak). 

Jerzy

PS - I didn't go to medical school (although I studied an a medical center and did a residency in a health-related field). So my hypothesis about the Type of cyst it most likely be is fairly ridiculous.

 

Teashea

Good news

Sounds like good news, thats wonderful.

Kat23502

Thoughts

Please seek a second opinion. A radiologist has information that your surgeon from looking at a report and even just images that most surgeons don't understand. On CT whether something is solid or fluid filled is determined by something we use called Hounsfield units. These units are the scale of radiodensity on CT. You can't measure these by just looking and they are only sometimes listed in a report. Where it becomes tricky is there is no accepted definite threshold for what is a definite cyst and what is not. Under 10 is probably a definite cystic mass and most accept under 15. Most physicians will further evaluate anything that is 10-20 house field units further. So, as someone very familiar with this, at some point that mass and someone able to measure the hounsfield units thought it was worrisome enough to be surgical. I would question another CT as the Hounsfield units and possible inconsistency in readings and disagreements in thresholds may still be encountered. MR is less dose and may offer another evaluation tool but US is quick, has no radiation, and can easily evaluate if a mass is solid or fluid filled. Good luck to you and I hope that little thing is fluid filled as suspected but I'd hate to assume so when at one point it wasn't.

JerzyGrrl

Kat23502 said:

Thoughts

Please seek a second opinion. A radiologist has information that your surgeon from looking at a report and even just images that most surgeons don't understand. On CT whether something is solid or fluid filled is determined by something we use called Hounsfield units. These units are the scale of radiodensity on CT. You can't measure these by just looking and they are only sometimes listed in a report. Where it becomes tricky is there is no accepted definite threshold for what is a definite cyst and what is not. Under 10 is probably a definite cystic mass and most accept under 15. Most physicians will further evaluate anything that is 10-20 house field units further. So, as someone very familiar with this, at some point that mass and someone able to measure the hounsfield units thought it was worrisome enough to be surgical. I would question another CT as the Hounsfield units and possible inconsistency in readings and disagreements in thresholds may still be encountered. MR is less dose and may offer another evaluation tool but US is quick, has no radiation, and can easily evaluate if a mass is solid or fluid filled. Good luck to you and I hope that little thing is fluid filled as suspected but I'd hate to assume so when at one point it wasn't.

Units...?

Hi, Kat -- Thanks for your comments and concerns.  I didn't see anything in the report about the Hounsfield units (and since I've heard of them -- as well as their sometimes iffy-ness of what means what, I imagine my surgeon has, too -- ;-) ).

Size-wise, it does fall into the wait-monitor-and-see category. Apparently what enhanced was a very thin wall on its outside, which might have fallen into the "perceived, not measurable" thickness (I didn't ask what exactly he meant by very thin). But that still falls acceptably into standards for the wait-monitor-and-see category. 

I've had two US done.  As for the CT and the possibility of getting too much exposure to radiation, we'll most likely be just 3 weeks shy of 6 months since my last CT before I get this next one.  Assuming there aren't any surprises with this CT, I'll have a US as a follow up in 6 months.  That sort of a schedule is pretty close to what I'm hearing other people they're getting after surgery to determine which uncle (Ned or Ed) is coming for a visit. 

Again, we're going to be watching this very carefully. 

Thanks,

Jerzy

 

JerzyGrrl

Update...

Thanks to those of you who recommended my getting a second opinion (as well as all the congrats, etc). 

I'm still waiting on the referral for the second (5 months after the first) CT and will be following up on that.  As for the second opinion, it's been recommended that I wait until I get the second CT done, because most likely I'll be asked what those results were AND what the radiologist's and surgeon's opinions and recommendations were. So -- hey! -- sometimes even HMOs' recommendations go with what seems reasonable in regards to process.  Go figure !

Jerzy

JerzyGrrl

icemantoo said:

Not sure what to say.

Jersy,

If it were 1 or 2 cm probaably nothing. Somewhere I read thateven if its uncertain tey take it out at 4 cm. Sometimes they are even bigger and lok malignanant and turn out not to be. The good thing is that either way  your prognosis is excellent. No bungee jumping while you are waiting.

 

Icemantoo

 

Icemantoo

You'll be happy to know...

Iceman, you'll be happy to know, not only have I cancelled any thoughts of and/or reservations for bungee jumping while I'm waiting, this weekend while I was at the home improvement store, I got a multi-pack of assorted bungee cords, thought better of it, took them out of my cart, and put them back on the rack.  I did, however, get several sizes of zip ties and some adhesive backed velcro-ish tape.  In addition to helping with several household fix-it chores, those items ought to help keep me firmly fastened to the earth's surface. 

Jerzy