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Others w/ Papillary Renal Cell Carcinoma Grade ?

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

All,

 

I have grade 3 Papillary Renal Cell Carcinoma that has spread to my lymph nodes.  I posted earlier (the other day) about my situation and I am just looking for others with similar situations, suggestions, advice, etc.  I am following up with UNC Cancer Center on 6-27 and have an appointment tomorrow with a competing Cancer Center from my current Oncologist.  Any questions I should ask or any advice for these two appointments would be helpful.

 

Initial Cancer Reading November 2013, surgery December 3, 2013.  New findings on first CT scan June 12, 2014.

Initial finding Type 2 Papillary Renal Cell Carcinoma, Fuhrman Grade 3, no node findings.

Now 5 (give or take) enlarged lymph nodes 4CM, 21MM and 8MM, plus others.  No apparent growth in other tissues detected for now.  Node locations affected Posterior Mediastinal Lymph Node (Chest) and other in Abdomen Periaortic Space/Interaortocaval Space. 

Have not had biopsy on current nodes?  Oncologist advised really not necessary.  Gave us some options, but really seems to be pushing me towards another provider (the UNC Cancer Center) for hopefully better results.

Looking for any guidance, direction, specific questions to ask, etc.

Thank You!

Thx

 

Tom B.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Tom, getting additional opinions is good... but... BUT, keep in mind there are like 300 different diseases all called Cancer.  Next about 8% of all Cancers are Kidney Cancers... then a small percent of those are Papillary.  Oncology is generic or sorts.  There is NO ONE Oncologist that knows about all 300 different types of Cancer.. no way...  So, the first question I suggest you ask, is how many Papillary patients does this doctor see a year..?  If you are the only one, then do not expect much.  You may have to travel to get someone with a reasonable amount of Papillary experience.  Sorry there is no way to sugar coat it.  This is a difficult choice for you.. but too important to leave to chance.  There are some great Oncologists out there... find the one that you think will help you the best.  Or at a minimum find a local Oncologist that is willing to work with someone with more experise.

Good Luck,

Ron

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Thx Ron, I appreciate your perspective.

 

That will be my first question tomorrow.  I will listen to what they say after that and determine if I need to pursue another, then another, then another.  My feeling is that I can continue pursuing a new doctor, get treatment from my current doctor until I am out of options.

 

Thx again!

 

Tom B.

Phoenix Rising's picture
Phoenix Rising
Posts: 170
Joined: Jul 2012

Hi TBuck....

Papillary renal cell carcinoma, stage 4, T2N3Mx, Grade 3.  Diaqgnosis 4/09. 
Surgery to remove kidney, mass in inferior vena cava, and several affected lymph nodes.  Margins clear (at that time).
Surgery to reove single lung met, 2011.

New lung mets appeared, 2012.

Interleukin 2, Lung mets size increased

Votrient-- Lung met size increased, spread to lymph nodes

LY2873857 (?) trial drug--- Mets increased.

Inlyta-- Mets increased

Sutent and Gemcitabine/Gemzar -- administerd off-trial.  Current treatment with mixed results so far.  All lung and lymph mets shrinking, one necrotic met in chest, but 2 new small mets in lung.

The best advice I can offer you is to drop all refined sugar.  No physician or oncologist has told me sugar is bad for your kidneys, and they were serving up plenty of sugar in the hospital.  Yet, I have read many times where it is not good for your kidneys-- and if I only have one left, I need to take care of it.

Ask each doctor how many patients they have treated with pRCC, and what treatments and trials are available for this specific type of kidney cancer.  Ask which first line treatment he would recommend.  There are many  therapies/treatments, but pRCC doesn't necessarily respond to all of them. 

 

I drastically changed my diet- became vegetarian, dropped refined sugars, and I don't eat or cook with processed oils. I juice at least three times each day. I also use other holistic or natural methods of caring for my health.

 

safado
Posts: 18
Joined: May 2014

However, I'm type 1.

Grade 3/2 also.

Rad. Neph. on 4/24.

RUN, RUN, RUN - don't walk - to a 2nd, 3rd, 4th opinions.

Don't ever feel beholden to any doctor, lawyer, etc.  Fire him/her and move on if you have too.  

You're the boss/patient!

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Thank You Safado!  I am meeting with UNC Linebarger Cancer Center on Thursday June 26 and Dana-Farber Cancer Institute on July 3rd.  I am still very lost with this recurrance and looking for options, opinions and treatment that will hopefully be a dual approach (surgery & meds).  

 

Thx again!

 

Tom

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

have gotten good advice.

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