My experience

BrooklynGuy

Hi all. I've been hanging around reading a lot of your stories the past couple weeks and decided to share mine.

I had a 5.5cm mass incidentally discovered on my rt kidney in mid August this year. You can imagine my terror when I first read the words renal cell carcinoma in my ultrasound report. I'm a relatively fit 47 yr old male with no significant medical history to speak of, personally or familially, so the discovery was a major jolt to my psyche.

I got three opinions from urological surgeons. First two agreed on radical neph. Both agreed that because of the location of the tumor - central kidney, in close proximity to the renal vein - partial neph was not an option. I had to wait for the third opinion. Third opinion came from a noted surgeon based at a major medical center in NY, but initially I couldn't get an appt with him prior to the surgery date I had tentatively established with one of the first two surgeons. Four days before I was scheduled for the rad neph, surgeon #3 called and told me he could fit me in for a consult. His opinion was he'd never rule out the partial option out of hand without seeing firsthand during surgery what he waa dealing with. Additionally, based on the imaging I had done, i.e. ultrasound, CT, PET, nuclear scan, he believed there was minimally a 50/50 chance a partial could be successful.

Surgeon #3's reasoning made sense to me, and I appreciated the fact that he was a bit more experienced than the other 2 and he deals with countless cases like mine on a daily basis, so I canceled my tentative surgery date and rescheduled with #3.

Outcome was he accomplished the partial neph about 3 weeks ago. On top of that, it turns out my mass was a benign oncocytoma. Oncocytomas apparently account for roughly 5% of all renal masses and they are very difficult to conclusively distinguish from rcc, particularly the chromophobe variant, from preoperative imaging.

I'm unsure of how to feel about my experience. On one hand, I'm elated to learn I did not have cancer. On the other hand I have questions about whether I needed surgery to begin with had it been possible to preoperatively determine with certainty that my tumor was benign. All three surgeons agreed that biopsying was not a good option, albeit for slightly differing reasons.

All in all I feel extremely fortunate either way, because I know things could very easily have played out very differently. I have 2 young children and the thought of possibly not being around for them was unthinkable. So it goes and I'm now recovering - relatively well I'd say. One minor setback occured this week with the onset of an infection (caused far worse pain than I felt fresh out of the OR). But antibiotics seem to have taken care of that.

This is my story (so far). I've been moved by the spiritual and emotional generosity of the members of this forum in sharing their experience and wisdom, so I feel privileged to join you and offer mine.

God bless...

Supersum

Good outcome

That's quite a story which seems to end with a fairly good outcome of only having a partial nephrectomy and the discovery that the tumor is a benign oncocytoma.

I can understand that you are questioning whether surgery was necessary, but I would think at 5.5cm and 47 years old it would be inevitable.

First, a biopsy cannot be conclusive as to the nature of the tumor in this case. RCCs can display features of an oncocytoma and so mislead investigators (although more accurate instruments are being developed).

Second, if it was considered to be a benign oncocytoma and left in place it could hide the emergence of a malignant RCC (especially once symptoms emerge).

Third, if it was a type of tumor which continued to grow then it would continue to grow at an average rate of at least 0.5cm per year (increasing in growth rate as it enlarges) so in ten years you would be looking at a tumor heading towards 15cm.

Fourth, in this case the tumor was discovered accidently but if it gets larger and/or starts causing symptoms such as blood in urine or flank pain then it would have to be removed.

If I was in this situation and we knew the tumor was an oncocytoma which could be removed by a partial then I would want the tumor removed. 47 years old is young, the tumor is not going to just disappear, you would be thinking about it for the next 20 years worrying when it was going to knock you out.

To get rid of it with a partial nephrectomy seems to be the best possible outcome to me. I might be thinking differently if you had a radical nephrectomy but the fact is you didn't, you have emerged with what to me seems the best outcome, so no need to dwell on a procedure which did not eventuate, except for it to be a lesson to not just you but to all of us who read your story regarding the reliability of medical assessments.

Thanks for sharing your story, let's hope it ends there, there is no good reason why it shouldn't.

 

 

hardo718

Wow Brooklyn Guy

That's incredible!!  Good for you.....although I'm sorry to tell you, NO T-SHIRT FOR YOU!  haha

What a roller coaster ride you've been on and when you're up to it I'd say it's time to throw those arms up high & scream wheeeeeeee!!  You're one lucky dude.

Get out there now, cancer or not and celebrate life.

God Bless,

Donna~

kiwi68

Thanks

Thank you for sharing that story.  I have moments when I wonder what I will think if they tell me it isn't malignant.  

It brings up some great points about second opinions and especially with Supersum's comments about future medical options if you kept the cyst and best quality of life and minimising risk.   I am alway telling my kids when they go for an immuniation or a routine medical procedure that is preventative, 'this hurts now but the thing it will prevent is a lot worse'.  The removal of your cyst is a little like that.   It's a bummer that you had it, but keeping it would only have led to the same operation more involved and most likely health complicaitons that woudl come later on when you are older and not as fit and physcially strong. 

AnnissaP

Wow! Great outcome I would

Wow! Great outcome I would say. Thx for sharing your story. What a wild ride. Glad to hear you are on the mend and that it was not cancer!!!!! It is still a very difficult thing to go through nonetheless. Hoping life soon goes back to normal for you!!

Steve51

Thanks for sharing and very happy for you

Wow Brooklyn, I have to confess, when I check out CSN, I'm searching for something to make me feel good. It was really nice to hear something so positive. There is a lot of compassion and caring people here. Thanks for sharing 

icemantoo

Honorary member

Brooklyn Guy,

 

 

So what if you don't have Cancer. You went thru the initiation, being nephed. So keep the beanie.

 

 

Icemantoo

Shaughnessy

Great Outcome

I had a radical nephrectomy a little more than a year ago and recall that before the surgery they could not tell me what kind of tumour it was just that is was going to have to come out.  Before the pathology report came back, post surgery, I was told that the best possible outcome was a non cancerous tumour.  Very rare, but possible.  I, unfortunatley, did not get that outcome, my result was a chromophobe.  I'm told the next best thing.  So no cancer is a great outcome.