"Most Concerning for RCC"

RichW said:

Sloan not covered by my insurance

I contacted my insurance and Sloan is not covered but they gave me some choices and I was hoping you all may be able to steer me in the right direction.  Fox Chase, University of Pennsylvania, Pennsylvania Hospital, Jeanes Hospital.  If anyone is familiar or has some advice i would really appreciate it.  I also messaged my PCP to discuss the removal of the UTI diagnosis letter which really has made me lose trust in him.  Anyway thanks for the advice!!

RichW

Pitt was an option for us..if we needed a second opinion..not because of insurance but because we have family there and they have been doing some pretty interesting research ..look into them.. you may end up liking that option...hugs

I am alive said:

Fox Chase

Rich,

  I recommend Dr. Elizabeth Plimack at Fox Chase. She is young, on top of and involved in RCC research, aggressive (in a very good way), has an impeccable education (I believe she did time at MD Anderson) and was recently named head of her dept. I live outside Philly and my oncologist at Sloan recommended Dr. Plimmack as a local oncologist. When she walked into the room, all smiles, I swear I thought for a moment that she was a college student! I was a nervous wreck and she made me  feel calm and reassured within minutes. She inspires confidence. I like her a lot. 

Jeanes Hospital is a small community hospital attached by an enclosed walkway to Fox Chase. When I spent the night at Fox recently my echocardiogram was performed next door at Jeanes. The hospitals share certain equipment/doctors, but you don't want to go to Jeanes for RCC followup. 

  My nephrectomy was done at the University of Pennsylvania hospial 8 years ago so I'm not up on who is currently a top doc in the oncology department  there. Of course UPenn is a well endowed research hospital. But the experience you  have at UPenn and Fox are different. Fox is a more "valet" experience b/c it caters only to cancer patients. Records and tests are easily accessible and gotten for you. At UPenn I remember my husband and I wandering down confusing corridors until we found the right office to get MRI film which we then had to hand deliver to another department before my appointment there. Of course that was nearly a decade ago so I assume they've streamlined the situation, but who knows. At a big university hospital you're more likely to navigate things on your own. I recently  had to go to the emergency room at Fox and it was a dream - the doctor calls the urgent care department to let them know you are on your way. You are greeted by name when walk in the door and are immediately seen by a doctor who has all your records.

It sounds like I'm pushing Fox. I'm not really. Both facilities are top notch. Each has it's own unique factors. I recommend you audition an oncologist at both places - make meet & greet appointments, check out the docs and the hospitals. Get a feel fthe each place.  Ask about their trials, about how they would follow you up. Your gut will tell you a lot. Good luck!

i have done a little research. Dr. Naomi B. Haas at the Abramson Cancer Center at the Hospital of the University of Pennslyvania (referred to above as UPenn) is another highly recommended doc who specializes in RCC. The Abramson Cancer Center wasn't even built when I had my nephrectomy! It's a pretty swank place. All glass and state of the art. Big on research. So wandering down endless corridors without a clue is probably tres passé today. You should definitely hit them up and check it out. Can you see an oncologist before a nephrectomy? I'm not sure, but why not? You have tests to show and talk about. I guess I would veer toward the Big Guys who are in the NFL of kidney cancer. They've seen everything. They do everything. They have amazing resources. Big or small (Fox is small), you owe it to yourself to meet doctors at both places. Time to let the clowns go.

Rich, you have a beautiful family. The picture posted is awesome. Makes me smile. Many blessings to you.

RichW said:

Most concerned for RCC

Thanks Eims and Ron.  I am happy to have come across this site. I have been reading so much online my head is swirling with questions.  I am grateful that its very small and early compared to what most of you have dealt with.  Some stories I've read were less than 2cm and they've had surgery.  With the new drugs out, do you think they'll put me on Meds to shrink it and watch rather than going to surgery.  My fear is it possibly spreading from being cut open.  Forgive my ignorance if I'm completely wrong.  I'm still somewhat in disbelief.  

 

Thanks

RichW

Hi Rich.  As scary as it might feel to know you have cancer, please stay positive.  It is two years since I had my right kidney removed with a tumor 9cm in diameter and 6 lymph nodes out of 12 with cancer.  I did as much research as I could and added those things to my diet that anyone suggested could help.  Last year they found another tumor on my spine and I had three cycles of sunitineb chemo at full strenght.  My tumor shrunk from 4cm to 1cm and I was given the choice of another surgery to remove it.  I wanted it removed so in November last year I went through another surgery same as the first one.  At my six week follow up I  was told that my surgeons were amazed that the lab work on the tumor came back showing the cancer cells were dead.  This was a surprise because RCC is not normally "cured" or killed off by chemo.  Today, six months later, my blood work is almost back to completely normal levels and I am in theory cancer free.  

I tell you all this to encourage you to be pro-active in managing your own cancer.  I get blood tests done 6 weekly, monitor my white blood count and platelet levels etc.  Last year when my blood count was trending in the wrong direction I asked for further scans and MRI's which is how the second tumor was found.  I drink "Jason Winters" tea daily, take "Percy Weston" vitamins and minerals, drink chlorophyll liquid daily, use fresh lemons, and take extra large dose of vitamin C daily.  (Google the above "names" for their story).

 I am a 58yr old New Zealand lady and fortunately my children are grown with children of their own.  You have every chance of living and becoming completely healthy for many years to come.  Stay positive and be proactive.  You care about your health more than any doctor ever will.