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My 3rd met to lung

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

4 years ago, I had Stage IV RCC with one nodule met to lung. And, then had to surgical remove 2nd lung met (one nodule) 2 years later in 2010.

I had my 3rd lung operation on April 2nd, this time it really took a toll on me, they have to remove the whole lower left lobe because the new nodule was lodged in the center and near blood vessel. The size is 4 x 1.3 x 1 cm with 30% necrosis.

Something is quite interesting on the path report. I notice that the Grade is changed to Grade II as suppose to Grade III different from all previous reports. I don’t know if it is actually changed or just at the report attendant’s own discretional judgment.

Jon

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes Jon, that is interesting and please let us know when you discover the answer.

What was the histology of the primary tumour - clear cell, grade 3?

Have you had adjuvant therapy in addition to surgery - perhaps I should be able to remember but I'm afraid I can't.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

Yes, primary tumor was clear cell grade 3, same as the 1st and 2nd lung met. The 3rd lung met is still clear cell, only grade is changed.

No, I don't have any other therapy.

Jon

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

I find this interesting. Only one met growing over time. Though they told me I was fine last spring, by october I had at least a dozen lung mets. They certainly do their own thing.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

I feel lucky to be able to still surgical remove each met and make good friends with my Thoracic surgeon.

It seems to me, each one of them is different. This one grew a lot faster then I thought it would be, all my previous mets were around 1 cm. Maybe it sucked more juice from that nearby vessel?

Jon

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Jon,

Just wondering if you had heard any explanation for the change in grade? I'm very interested as I don't recall this coming up before.

TW - do you think this might link back to RCC-the sneaky disease?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, I do think so and I think I may add a little to that thread!

Aside from those problems, presumably each met will potentially change in grade as it progresses, possibly exhibiting increasing de-differentiation and extending necrosis. If so, then logically there's no reason to assume that the same grading will persist. it does seem odd though that John's change is to a lower grade. In view of the rapidity he has noted and the 30% necrosis, which is sometimes indicative of greater aggressiveness (such that the tumour's expansion outstrips the blood supply, leading to cancer cell death, typically centrally) one might have feared that the grade would be worse rather than better.

Fox is right that with this ultra-sneaky disease you can't predict anything, it seems, about the number and development of mets. - all very bewildering.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Hi Jon -

According to everything I've read, 'grading' is a description of how abnormal the cells appear (compared to normal kidney cells) and how quickly the tumor is likely to grow and/or spread. With RCC being such a strange creature, seemingly capable of 'morphing' each time it pops up, I'm guessing that yes, grade could change. Now, I suppose there could be differing opinions from different pathologist but, I'm guessing it's something else. During pathologic examination, only a small portion of a tumor is prepared and reviewed. It is possibl that the Grade 2 is factual for the slides they were reviewing.

Here is an article that I found very interesting. It suggests that RCC requires more than a '4-grade' system but rather to delve deeper.

http://www.nature.com/modpathol/journal/v22/n2s/full/modpathol2008183a.html

nyc_girl
Posts: 26
Joined: Apr 2012

May I ask what type of scans you are having to check your lungs and how often?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Funnily enough, Liz, i was about to post that article earlier on but got side-tracked (by major events in two of my favourite sports - first the World Cup Rowing in beautiful Belgrade, where Britain totally dominated :) and the final of the world snooker championships).

Of the many grading systems, Fuhrman is maybe the best we have but it's acknowledged to be unsatisfactory. It's only applicable to clear cell and there have been various attempts to improve it, mostly by collapsing the categories to 2 or 3. Moreover, it's not legitimate to make predictions about individual cases on the basis of (suspect) generalisations from data about numbers of other cases. All we should say, in our present state of knowledge, is along the lines of:- we know that larger tumours usually represent higher risk, vascular invasion is bad, lymph node involvement likewise, de-differentiation is undesirable, expansion, as measured by staging criteria, is bad news, etc. Attempts to forecast the outcome of individual cases, is a mug's game. We should beware of attaching too much importance to the Fuhrman grade allocated to a tumour. However, we are in shifting sands and the whole appearance of this terrain will surely change beyond recognition in coming years.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

Just wanted to add the information that all my path reports are using Nuclear Grade System. I’m not too concerned about what kind of grade it was, as long as it’s still RCC, it had to be out.

I was having chest CT scanned once a year, now my next one will be in 6 months.

Jon

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That sounds like a wise move Jon, given the rapid growth to 4 cm. and the necrosis factor - not so good if the necrosis isn't due to drug intervention but to the aggressiveness of the tumour growth. (I'm to be having 3 monthly CTs but then I'm stage 4 and grade 4, predominantly sarcomatoid and extensive necrosis, with a local recurrence that grew from nothing to 2.5 cm. in 5 months or so.)

You're right that having it out was a no-brainer in your situation. I hope all goes well from now on.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Amusingly, Jon, I just came across this posting from more than 15 years ago

"I just heard my path report over the phone for my recent operation
(had a 4cm tumor removed from my remaining kidney). It was
pretty consistent with the tumor they removed from my other kidney
over a year ago, with one exception. The new tumor was given a
test grade of 2 (out of 4). My old tumor was given a nuclear test
grade of 3 (out of 3). Why the different scales? Are there different
rating scales? They were tested at different hospitals, which might
explain any differences."

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

I passed my stage IV RCC 4 year mark on May 5th. At the same time, my NED was reset to Z and I humbly accept that from the all mighty RCC. It was a kidney problem from the beginning and now it seems more like a lung problem to me.

I’m back to my daily 10 Km run gradually, short breath, grasping for air, and all that. But I can feel a big difference between now and my fist test run when just out of the hospital a month ago.

It took me 4 years to bring my kidney function back (Cre level from 1.5 to 1.0), now, I’ll see how long it will take for me to get my lung function recovered.

Jon

garym's picture
garym
Posts: 1651
Joined: Nov 2009

WAY TO GO JON!!!

With your grit and determination 4 will be 40, of that I'm sure.

Keep on running,

Gary

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Way to go Jon!..I'll never see a 10K again, but do my 5K's. Good enuff!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It's reassuring to hear that one's creatinine level can recover like that, even if it takes a while. With the running it may not take so long for your lung function to recover?

For golfers wanting indications of recovery time - I'm now 5 weeks out of hospital and played two rounds at Carnoustie today, a bounce game this morning on the Championship and a knockout tie this evening on the Carnoustie Buddon Course (4 down after 5, all square at 15 and lost to a birdie 2 on the 17th).

My opponent this evening was almost 25 years younger than I am and built like a barn door, a former pro. football player with a handicap of 3.9 so I was pleased to have given him a run for his money. I'd not met him before and it turned out that he's just celebrating 4 years of remission from malignant melanoma - such a small world! We didn't have difficulty finding things to talk about.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

An interesting new pic Gary, but it's a bit too distant for my eyes - should you be showing so much leg?

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

Thank you my RCC fellows. May the Force be with all of us.

Jon

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Jon, may I trouble you with three questions?

Have the docs commented on how valuable your athletic condition has been in expediting your recovery? I imagine it's been a great help, (coupled with your fighting spirit).

It's notable that you've had surgical interventions but not drug therapy and this seems to have been vindicated by the outcome. Have you had much discussion of that course of action and has the rationale been explained?

Embarrassingly, perhaps, I don't know if there's a term of art I'm unfamiliar with. You wrote "my NED was reset to Z" and I don't understand what that means. I'm hoping you're good at suffering fools gladly and will be kind enough to enlighten me.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

TW,

No problem. I'll be glad to answer the questions.

I consider drug therapy will be the last resort for me, as long as they can fix the recurrence surgically I am happy to take it. So far I have been lucky to get what I wanted in the cases of each lung met. I think LizB would agree with me on this, we had this conversation a while ago. Liz, have you moved back to the East with your families?

Ah, the Urologic surgeon who operated on me 4 years ago commented “I’m suppressed to see you still around”, meaning I’m still alive. He came to visit me under the request of my Thoracic surgeon.

Keep stress level in balance, exercise as much as I can, eat healthy and live a good life style. I weight these 4 items equally for my immune system. Since I already move my defense line behind recurrence, I do believe a healthy immune system is my best bet. Let God worries about the death; let the docs worry about the operations; I’m doing my job of keeping my immune system in check, speedy recovery and live on.

The big Z means my NED mileage has been reset to Zero.

Jon

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Jon,

What great attitude and spirit you have and I love the "reset to Zero" idea, I'm going to use that! I am always drawn to the stories of true warriors like you, Donna, LB, fox, TW, etc., where hope and inspiration have defeated fear and despair. You lift me up.

Thank you,

Gary

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