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Waiting on Pathology has been the hardest part!!!

jason.2835
Posts: 337
Joined: Nov 2014

Hey, guys!

I had a nephrectomy on Oct 21 2014.  Originally it was scheduled to be partial but I had some arterial issues that forced the surgeon to remove the whole left kidney.  The march to the surgery was one thing, but now I find myself OBSESSED with waiting for the pathology... the tumor was small (3.9cm) and confined to the kidney.  The doctor told us that he got "a look" at it after he removed it and that was "a solid mass."  But I guess I find myself going back and forth betweem hope that it's something benign or, at worst, something on low grade scale of aggressiveness.  I'm 4 days away from finding out what the rest of my life is going to be like, and I'm pretty scared.  This has been, mentally, the hardest part of this process so far.  Anyone else remember back to that waiting process?  I am usually a good one to keep things positive (and I am, for the most part), but it's hard for one's mind not to go to dark places.

Thanks for listening...

-Jay 

icemantoo's picture
icemantoo
Posts: 3282
Joined: Jan 2010

Jay,

 

I faced a similar diagmpsis over 12 years ago. The doctor said the odds of it being Cancer were 85 to 90%. As the odds had it it did turn out to be Cancer. So what. I have had no Cancer related problems since and at 3.9 cm the odds are very small that you will have a Cancer related problem in the future. For your sake lets hope that it is not Cancer so you dont have to be concerned with scans in the future. But at 3.9 cm there are a lot worse things in life than a small Cancer tumor which was no doubt removed before it had a chance to spread.

We all went thru that shock when we first were told that we probably had Kidney Cancer and than major surgery right out of the gate.

You will be fine whether the diagnosis is called Cancer or not with such a small mass.

Relax. Take a deep breath and try not to feel too good that you beat what may turn out to be Cancer  before it even had a chance.

 

Icemantoo

 

myoung790
Posts: 75
Joined: Sep 2014

I agree with Iceman.  Try to relax as you won't be able to change the outcome anyhow.  I felt the same way.  I had a radical nephrectomy on 10/9 and didn't get the pathology results until 2 weeks later.  It's a stressful time for sure.  Try to keep your head up and focus on healing.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Have you looked at your CT report? In mine,was written ' the mass in in favor of RCC', I hope yours isn't

jason.2835
Posts: 337
Joined: Nov 2014

Well, pathology is in and it was clear cell RCC... that was about the only bit of bad news about it, though.  We kind of already had made our peace with cancer, and were already thanking our lucky stars that we caught it as early as we did...

It turned out to be even smaller than the MRI docs thought.  It was 2.8cm at it's widest point, pT1a, totally confined to kidney and no evidence of the tumor in any surrounding blood vessels or the gerota's fascia fat.  Fuhrman grade was G2 (G1 is practically NOT cancer, so this isn't a surprise).  No lymph nodes were out of whack.  Dr. Lallas here at Jefferson (my surgeon) felt that the tumor was no more than a couple years old and we were probably seeing it in it's nascent stages.  This is the type that people find when they're 60 and it's already metastasized.  So lucky, lucky, lucky, thank you God.  

No further treatement is necessary beyond getting screened regularly, cancer-free cure rate when caught at this stage is 98%.  

DSFrey
Posts: 69
Joined: Jan 2014

Sounds almost exactly like my story from February. Except for the screening part. I was told by my surgeon after my 3 month post-op scan that since it was pT1a G2, no further follow up scans of any kind were necessary. It took me awhile to come accept that. I thought my doc was crazy when he said that. After doing my research though, I see that is the current consensus in a case like mine.

jason.2835
Posts: 337
Joined: Nov 2014

DSFrey,

wow, NO screening? I think it's going to be blood tests yearly; not sure at this point but I know it's nothing really too crazy. It's not like they will be giving and MRI every year, but they may do that every few years at least at first. It's surprising to me that your doc said no screening of any kind was necessary. im not sure I'd be ok with that. It sounds great but from a mental standpoint, I'm more comfortable with "staying in touch," so to speak, so we can head off any potential problems in the future. Obviously, you hope there ARE no problems, but still...

either way, it sounds like we were both lucky man. 

- J.

angec's picture
angec
Posts: 924
Joined: Mar 2012

It is great that you had a small tumor.  But you have the right idea, it is necessary to scan the first time at least six months if not three, and then after a few scans that come back clear once a year for five years. That is the new standard regardless of what they tell you. I would insist on a scan.  Blood tests will not tell you if there is kidney cancer.  Yes, you both were very fortunate.  Don't let the docs drop the ball, yet!

jason.2835
Posts: 337
Joined: Nov 2014

BTW I read your profile.... Did you ever find out what was causing your extreme weight loss? 

DSFrey
Posts: 69
Joined: Jan 2014

No formal diagnosis of my weight loss was ever made, but since I started gaining weight shortly, about a month or so, after having my partial nephrectomy it seems likely that my weight loss was in part or whole a paraneoplastic syndrome. Being the anxiety driven person that I am, it should be no surprise that I now keep very close tabs on my weight. I'm hoping that my weight will respond in a likewise manner again should I happen to a have a recurrence.

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

No screening Frey?  Get another doctor!  Omg.  Use my case as a perfect example.  They found my RCC while checking on the thyroid, and found my thyroid recurrence while checking on the kidney last May.  I've only had 1 CT so far in 13 months, but I have another in March.  After that my GP will do the followup and believe me, it'll be CT's at least yearly.  No way would I let them blow me off with no followup at all.

 

 

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

Hi Rains,

I was hoping for some clarification on what you commented on. You said they discovered your RCC while checking your thyroid? I have a goiter (my thyroid is still working without medication) but 4 years ago they did a biopsy on my thyroid as they were concerned about how fast it had grown. It showed up fine, but they will continue to monitor it. Last year I was diagnosed with RCC. The tumour was substantial (13cm) and they said they figure it was there for 8 or 9 years. Stage 3, grade 2. I have often wondered why that biopsy wouldn't have shown anything. I am naive and not very educated with this stuff, but could you tell me your story? Also, did I read in one of your posts that you live in Canada? I do as well.

Thanks!

Hugs

Jojo

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