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anyone out there with papillary cell?

aliciamora's picture
aliciamora
Posts: 3
Joined: Jun 2012

hello everyone! just wondering if anyone out there has papillary cell renal carcinoma? pretty rare from what we've been told. just wanting to reach out and see how treatment, scans, etc have been going. look forward to hearing from you.

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

Alicia - a brief answer (but I'm trying to reply without delay - academic joke for Latin or legal readers!)

Do type in "Papillary" in the search box at the top right of the screen which lists the kidney cancer threads. This will bring up 4 pages of discussions touching on papillary RCC. Most of the way down the first page is a thread with 90 postings entitled "Papillary Renal Cell Carcinoma- Anyone Experiencing This or is a Survivor?" On the following pages this is followed up and there are other threads with many posts on the topic.

You havene't said which form of papillary (type 1 or type 2) but there is a very recent post you may want to look at on a severe case of sarcomatoid papillary RCC by "lbridgers30".

By the way, papillary is the second commonest form of RCC, after clear cell (but still comparatively rare among cancers as a whole).

I hope this helps but if you have difficulty finding the threads I've referred to, please say so and I'll try to help further.

Olsera's picture
Olsera
Posts: 38
Joined: Dec 2011

Hi Alicia,
I am a Papillary Type 1, Grade 1, Stage 1. I had a scan 5 months after surgery & then I will have another at 17 months. My surgeon said that would probably be all, but from what I have learned from this board I will insist on continued monitoring.

Olsera's picture
Olsera
Posts: 38
Joined: Dec 2011

Hi Alicia,
I am a Papillary Type 1, Grade 1, Stage 1. I had a scan 5 months after surgery & then I will have another at 17 months. My surgeon said that would probably be all, but from what I have learned from this board I will insist on continued monitoring.

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

Since it seems to be a fairly aggressive form of RCC, that seems to me to be a good idea, even with your early stage and grade.

aliciamora's picture
aliciamora
Posts: 3
Joined: Jun 2012

thanks for the replies. i'll check further in the website. i am a stage 4 (due to the size of the tumor) grade 2 papillary cell renal carcinoma. i on now on my 4th med since the others have not worked. we've been fighting for almost 2 years. i have been told that this cancer is rare and usually does not occur in young latina females. there is no family history of any cancers.

GeorjeanParrish's picture
GeorjeanParrish
Posts: 26
Joined: Oct 2011

https://secure.kidneycancer.org/np/clients/kca/login.jsp

GeorjeanParrish's picture
GeorjeanParrish
Posts: 26
Joined: Oct 2011

http://digital.olivesoftware.com/Olive/ODE/KidneyCancer/

Gulfwarvet
Posts: 1
Joined: Jun 2012

I also have stage 4 type 2 pap. Lymphnods and liver/lung involved. Since Dec 2009. I am starting my 4th treatment (Afinitor) Unless our bodies "kick in" on the immune system we are both facing the end. I have one of the best Onco doctors available at UCLA and he says it is up to our own bodies. If you had the kidney removed it is a slightly better outcome. (says doc) He said I have "a few years" once he starts treatments. Still facing the chance of interlukin 2 but the effects my be strong with no results...but we try as we must. Good luck to you and if you need a new friend to talk with about this I will be willing. I need someone, my wife and grown children are difficult to talk too as I cant get the words out without crying. You can msg me at joeandcil@live.com
Stay strong and be ready for anything!

Michael6701
Posts: 26
Joined: Sep 2011

I had papillary type 2, stage 1, grade III. I had it removed a year ago with open-partial and my 6 month scan was okay; I am scheduled for my 1 year next week. I will probably insist on long term follow-up because I lost three siblings to papillary RCC.

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

Continuing follow-up sounds essential. What ages were those you lost? If you have children, I hope they will also have regular check-ups so that if they should be unlucky they'll get the earliest possible treatment.

Michael6701
Posts: 26
Joined: Sep 2011

They were all younger than me. They were all diagnosed in their early 50's and were all gone by the age of 54. I wasn't diagnosed until 67. The biggest difference between my siblings and me is that I was lucky enough to have an incidental discovery, whereas they all discovered theirs when it became symptomatic and had metastasized.

I have impressed upon my children (early 40's)the importance of early screening and the family history. They assure me that they will talk to their doctor and get properly screened. I wish I knew conclusively that they will.

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

I have the non-hereditary papillary renal cell carcinoma and it that was discovered in 2009. I have been dealing with it fairly well, first with surgery, then with Interleukin 2. I just posted my experience here:
http://csn.cancer.org/node/202594

Upon discovery, I was stage 4- T2 N3 Mx, mass on one kidney, mass in inferior vena cava, several affected lymph nodes-- all removed with surgery in 2009. Single metastacism on right lung removed in 2011, multiple mets on both lungs and one lymph node- just completed 2 rounds of high dose interleukin 2 last week.

I am refusing to listen, agree, or otherwise succumb to the end-of-you-life statistics and theories. Only God can make that decision.

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

A sensible attitude towards the 'survival' nomograms which are of no use at all to the individual patient.

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

I have yet to have any doctor tell me how long I may or may not live, or that I have 'X' amount of time.... yet, upon diagnosis, I scoured the internet for "kidney cancer death rates," and "kidney cancer mortality," etc, looking for some indicator of how long I would be here. Those search results are not at all motivating and in fact, they are quite grim, and I found myself in tears daily, for months. When I was diagnosed with stage 4 in 2009, I was a 40-something, newlywed, skiing, golfing, rollerskating, working, traveling machine and I felt I had been dealt a terrible hand.

One day I decided to look at "kidney cancer survivor stories," and that is when my outlook and attitude changed for the better. Still, I got nervous just before every 3-month scan, and my attitude and behavior reflected as such. One day, I was headed to the hospital for my scan, waiting for an elevator located in a remote area in a parking garage, and when the elevator doors opened I smelled cigarette smoke. There were two not-so-safe-looking guys on the elevator, each with a cigarette in their hand. Despite my stature (130 lb, 5'-7" female), I asked, VERY agressively, "Which one of you is smoking?! Are those cigarettes lit?!" Each one calmly showed me their extinguised cigarettes. I stepped on the elevators, let the doors close, and began ranting about already having cancer and not needing anybody else's bad habits to affect my health.... and on and on.... They listened without a word.

When we arrived at their floor, and as they exited the elevator, one guy said, "Just because you got it, doesn't mean you're gonna die from it. He already said it, it's in His word." I got quiet and the doors closed.

That's when I decided no doctor, no internet posting, no double-blind study, and not even any other RCC patient seemingly with the same circumstance as mine, could tell me how long I would walk this earth. Years beyond the statistical life-span of a stage 4 kidney cancer patient, I can still ski, play golf, rollerskate, and travel.

So much for the grim prognosis on all the websites. My stage 4 "countdown" didn't start upon diagnosis in April of 2009, as I am certain I was probably stage 4 at least 2 years before that. And what about stage 1, 2, and 3? In hindsight, I had recurring kidney pain and a swelling feeling on the same side in 1987, and periodically until 2008.... so now what about those statistics? I very well may have been LIVING with this ailment more than 20 years. Tell whomever points to your life's calendar to take a hike!

I hope what I have expressed here lifts and encourages any readers who are feeling down and marking the days on their calendars. Attitude is everything. Enjoy each breath you take (even if it hurts), fully release any long-term resentment or grudges,laugh, eat right, get plenty of sunshine and fresh air, appreciate the small things, pray to God with everything you've got in your soul, and know that your time here is what you make it-- not what someone else tells you it is.

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

Great!

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

Thanks, your words give me a lot of courage.I need to think less about this enemy who stole the serenity.Thank you

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

Phoenix,

Great story and I'm so glad you shared it. I think there are times in our lives when, at just the right moment, some random stranger says something that changes our thinking, maybe even our life and they go on with theirs and will never know what they have done for you.

One attitude adjustment I have made since my diagnosis is in being a little more tolerant, a little more patient, a little less judgmental of others. Whether it is the store clerk who wasn't paying attention, or waiter that gets your order wrong, or coworker that is annoying, you don't know what someone else is going through in their lives. I'll admit I've been less patient with the medical profession lately, but I'm a work in progress. I occasionally remind myself of a friend with 25 years experience as a nurse who had a lot of serious things going on in her life and got home to find she had a patient's vial of blood in her pocket. They are human too.

Thanks again for sharing,

Kathy

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

Pheonix, That is awesome. I think that there should be a .."Must Read" thread on this site. You have expressed the words we all wish we could embrace. Newbies need immediate support and encouragement. And they should have an opportunity to read your approach.
Maybe we can keep this thread active. Thanks, Fox

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

Fox, do we have an inspirational thread where members can post uplifting thoughts for the newbies?

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

Kathy,
I used to be hard-lined and if I am perfectly honest with myself, I have been giving folks unecessary grief since 6th grade. As the saying goes, "Hurt people, hurt people." I was always a short, skinny, (and smart)kid and I got plenty grief for it. The more I got, the more I gave to anyone who was weaker than I, not necessarily in size, but weaker in personality. I did not tolerate others mistakes and shortcomings as a child or teen, and grew into an uncompromising adult.

That is all changed now and it is SO much easier and feels so much better to be nice, understanding, complimentary, giving, and caring. I have more patience for other's mistakes and I no longer mentally attack those who I think fall short. I also realize the human-ness (is that a word?) in everyone and show empathy more easily. From the lady at work who wears her skirts too short and flirts heavily with all the guys on the job, and none of the other ladies talk to her-- well we we don't know she was constantly molested as a child and knows no other way to communicate with men-- I have love in my heart for her; to the man who comes to work with wrinkled, worn and unlaundered clothes and can't concentrate, and his co-workers whisper about him and never invite him to lunch--- well we don't know he is still dealing with his wife's untimely death while he cares for his two elderly parents and a small child-- I have love in my heart for him.

I smile everyday just because I am here, and that in itself, ain't so bad.

Limelife50's picture
Limelife50
Posts: 419
Joined: Nov 2011

Do you mind if i ask what was the size of your tumor when you had your nephrectomy and also was it low or high grade

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

Hi Limelife,
I have never known (or paid attention to) the size of the tumor. I saw it in my copy of the physician's notes, but I have not seen that document for some time. I just looked at some of my other reports and it is not stated. When I accidentally run across that document, I will be sure to get back to you.

I do, however, recall that when "Nurse Ratchett" (my urologist's PA) spoke with me about the disease in 2009, she said T2N3Mx, Fuhrman grade 3.

Limelife50's picture
Limelife50
Posts: 419
Joined: Nov 2011

There is a reason why i have asked,my original dx at time of nephrectomy was RCC grade 2 to right kidney but also had a low grade TCC tumor removed from my bladder back in 10/11/11 now fast forward to 04/12 a tumor was discovered in my left kidney ,the path report for that tumor came back inconclusive with low grade papillary cells found

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

Limelife, I believe the tumor was fairly large because it was causing a great deal of pain... pain that is otherwise not realized with kidney cancer. The acute pain is what lead to my diagnosis.

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

Lovely stuff, Phoenix - please keep it coming.

pRCCWifey
Posts: 2
Joined: Sep 2012

Hi There-
I am new so I thought I would give this a try. My husband (44 yrs old) was just diagnosed with Papillary RCC. The great news is that is was caught by accident and it is only a stage 1. The grade is a 3 and it shows tumor necrosis. The pathology report does not tell us if it is type 1 or type 2. Wouldn't this be useful information for him to know and should we ask for that information? Maybe it doesn't matter overall. His oncologist wanted him to be part of a drug trial for Everolimus but the size of tumor was a few tenths of cm the wrong size (3.7cm and it needs to be 4cm), so he didn't qualify. The only proactive thing to do is regular scans. He is a couple weeks post-op (robotic laproscopic partial nephrectomy), so we are trying to understand it all still. He is my Handsome Hero and I sure would like him around for a very long time- especially for our 2 teenage daughters. Well, I found this site and it is helpful to read other experiences- this is so new and unexpected as it is (was)for you all. It sure puts life into perspective- to decide on a picnic in the mountains instead of doing house chores on the weekend. Thank you for any information you may have to share and good luck to everyone!

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

It's always nice to be able to welcome someone who's concerned with a comparatively favourable prognosis.

You should definitely find out which type of pRCC you're dealing with - there's a bit of difference of prospects as between type 1 and type 2. As a papillary wifey, you might find it helpful to contact a papillary hubby, namely Matt on KIDNEY-ONC whose Wife, Tina is the same age as your Husband. Matt is a very helpful individual who has a wealth of information on the subject of pRCC.

Having said that, do stick around here too. There are plenty of folks here to give you information and support. There are also people with great attitude. One comparative newcomer who has already contributed a lot is Phoenix Rising some of whose postings you can see above, on this thread. Since you may, at some stage, come across some depressing 'survival calculators', be armed with Phoenix's response (above)

"I am refusing to listen, agree, or otherwise succumb to the end-of-you-life statistics and theories. Only God can make that decision."

An equally feisty lady, who has been one of the most valued posters here for many years, is Donna Lee who elegantly captured a major reason for the invalidity of the survival statistics (out of date information) in this memorable formulation:

"When you get into Statistics, remember we are the crew that is changing those numbers-by days, months and years-so think positively. And there are so many more options available today that weren't even in trials 6 years ago."

It's true that we are the crew that's changing those numbers.

Finally, I'm sure we all applaud your perspective "to decide on a picnic in the mountains instead of doing house chores on the weekend."

pRCCWifey
Posts: 2
Joined: Sep 2012

Thank you Texas-wedge for your thoughtful and informational response. I will check out the location of KIDNEY-ONC.. We are all about positive thinking and feel grateful for everyday that we are given together! Thank you again.

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