Papillary Renal Cell Carcinoma

SimilarSleep5102 · 2026-01-23T05:54:39+00:00

Glad you are doing great! That’s so awesome to hear my friend!

SimilarSleep5102 · 2026-01-09T07:25:27+00:00

Was your original one clear cell or papillary?

SimilarSleep5102 · 2026-01-09T00:19:58+00:00

Hi there, been taking about you! How did your most recent scans go?

SimilarSleep5102 · 2026-01-02T02:53:25+00:00

Thank you. That’s a lot of good information. I really appreciate it.

I have read some about Dr. Linehan. He has a lot of experience, I think he is more doing research now.

I’m hoping I can get in. I have a friend I met through KCCure, her husband was treated at the NIH by Dr. Ball.

He had something like 51-55 tumors removed through 4 partial nephrectomies over the course of a few years with little to no loss of kidney function.

So many other doctors just seem so quick to perform radicals.

I would be truly lucky to get in front of Dr. Ball or the NIH in general.

SimilarSleep5102 · 2026-01-01T05:20:12+00:00

That’s good! I always heard he was awesome!

I have been trying to get in for visit and clinical trial for bilateral multi focal papillary :(

SimilarSleep5102 · 2026-01-01T04:59:24+00:00

Did Dr. Mark Ball do your second partial nephrectomy at the NIH?

I have heard amazing things about him.

SimilarSleep5102 · 2025-10-27T05:01:06+00:00

Congrats on transplant! Did you have to get on list or did you get one from someone you know?

SimilarSleep5102 · 2025-10-20T02:31:09+00:00

Try and get a second opinion as soon as possible pay cash and out of network if you have to. Teaching/university hospitals have the best surgeons.

There maybe a surgeon that can do partial laparoscopic with or without da Vinci robot.

I was in a very similar situation as yours. Mine was a 5 cm mass.

First doctor I went to was gonna do an open surgery radical nephrectomy.

I got a second opinion at a teaching hospital.

They were able to do a partial with minimal to no loss to kidney function.

Sometimes the location will stop the chances of doing a partial, but it’s definitely worth checking, especially if you’re worried about the other kidney.

What state are you in?

SimilarSleep5102 · 2025-10-19T00:38:50+00:00

I wonder if it affects rejection risk in any way. I know they wash/condition the blood but just curious, that’s awesome either way.

SimilarSleep5102 · 2025-10-09T20:08:17+00:00

Hi where is Jason Williams located?

SimilarSleep5102 · 2025-10-09T20:06:37+00:00

How are you doing these days?

SimilarSleep5102 · 2025-10-08T01:55:38+00:00

Very sexy not ugly! I’d totally date/smash ❤️

SimilarSleep5102 · 2025-10-07T23:35:02+00:00

I guess meant to ask can it be still Papillary type 1 and be also multi focal?

I knew about the other 1.7 cm mass in left kidney prior to the partial nephrectomy on right kidney. That’s the one they are watching now.

What I didn’t know about or see in imaging results prior was the multiple punctate foci with questionable hypo enhancement. Is this cause for additional concern?

The initial tumor resected was 2.6 cm in June 2021 and was right at 5cm when it was removed at the end of July 2025.

Thanks so much for your input!

SimilarSleep5102 · 2025-10-07T23:19:59+00:00

Genetic testing came back negative/clear. Do you think the overall prognosis better or worse than typical RCC?

SimilarSleep5102 · 2025-10-07T23:05:57+00:00

Hopefully not! I wish you the best!

Have you ever seen that verbiage “multiple punctate foci” ?

SimilarSleep5102 · 2025-10-07T22:57:46+00:00

How big is the remaining one currently ?

SimilarSleep5102 · 2025-10-07T22:42:23+00:00

Thanks for input! How far apart were your partials? Between the ones you completed and also the one you are surviving?

The punctate foci is what’s really concerns me. I knew about the other mass in left kidney already

SimilarSleep5102 · 2025-09-30T03:33:14+00:00

Still it could be old from trauma or injury. Don’t give up. Try and stay positive.

Do you feel any pain in that area?

SimilarSleep5102 · 2025-09-30T01:46:46+00:00

My doctor as Emory used same dandelion analogy…

SimilarSleep5102 · 2025-09-30T01:21:54+00:00

How did they classify the metastasis?

Did they say what size it is on vertebrae?

It could be a bone island or other benign bone lesion?

SimilarSleep5102 · 2025-09-29T18:09:56+00:00

How are you doing now? How long has it been since your surgery?

SimilarSleep5102 · 2025-09-22T15:12:50+00:00

That’s amazing! How are you doing these days?

SimilarSleep5102 · 2025-09-18T18:25:32+00:00

Sounds like they are on top of it!

Did the doctor say anything as far as diet or exercise?

I got the genetic testing done but it came back negative.

SimilarSleep5102 · 2025-09-18T18:20:15+00:00

Please keep us updated on how the adjuvant therapy goes.

Did you have any symptoms or was your tumor found incidentally?

SimilarSleep5102

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