New to group, wanted to share experience

[TBRowdies]

Hello all. New to the group, but wanted to share a bit of my experience. I'm 32 and was diagnosed with Stage IV RCC with metastases to bilateral lungs in September 2018 (Labor Day weekend). Over the course of the 6 months leading up to dx I went to PCP and specialists relentlessly with a nonstop cough, night sweats, and fevers....eventually blood in my urine arose and things got taken a bit more seriously, I had a CXR in May which was allegedly negative. I went to the ER where I was all but turfed out the door when they found what looked to be mets to my lungs (confirmed with chest CT which caught the top half of a 18cm x 14 cm mass) I had a left radical nephrectomy, adrenalectomy, and removal of lymph nodes at the Cleveland Clinic. I went there for my second opinion as doctors at a small Florida hospital began to say I had months to live and should only be thinking palliative-surgery was too "heroic" and would do nothing. Cleveland was baffled by the lax approach in FL and said that's coming out and ASAP. After recovering from a large incision, I have felt a great deal better. I've began immunotherapy txs back in Florida and have seen some decent treatment response. I don't like my oncologist, he's distant and begrudgingly answers questions lazily, but I like most other aspects that this cancer center offers and don't want to rock the boat....yet. I'm cautiously hopeful, but pushing to do as much traveling and physical activity as possible while I'm feeling good. I underwent an induction dose of Ipi/Nivo for 12 weeks and have moved to just the Nivolumab IV once every 4 weeks. I've had some flu like symptoms a few times since tx, but have otherwise tolerated well. Long story short, never stop advocating for yourself, don't back down from these doctors just because they have years of experience and loads of education, and if possible have your family help you fight. I credit my mom and girlfriend and the courageous honesty shown by my outside urologist that pushed me to seek a higher level of care when I had all but accepted my fate. He went against every other doctors' plans and really ruffled feathers (as evidenced by the other physicians essentially calling him a quack). I feel I have been given the best chance of survival possible, but have gotten exceedingly lucky not to fall into the trap of physicians too proud to refer someone on. I have so many more wrinkles to this story, but wanted to try and illustrate my story the best way possible. Feel free to reach out to me, if there's anyway I can possible help or offer support. I've recently been identified to have a BAP1 mutation upon genetic counseling, which is a cancer predisposition syndrome highly associated with RCC and a number of other cancers (currently the youngest documented case...yippee!). Anyway, happy to have others to share with, all the best.

[oncowoman]

TB what a story. So glad you made it to the Cleveland Clinic. You may want to reach out to the NIH they may be interested in your case. But if you are looking for an excellent oncologist even if it is just for a consult and then let local handle routine stuff you may want to reach out to Hans Hammers (or James Brugarolas) both at UT Southwest in Dallas. Another top RCC oncologist (and there aren't many who specialize in RCC which is what you need) is Monty Pal at City of Hope. Others included Dan George at Duke, Elizabeth Plimack at Fox Chase in Philly, Michael Atkins at Medstar Georgetown in DC, Tony Choueri at Brigham and Women's in Boston (also David McDermott) or Brian Rini at Cleveland. Wishing you well.

I had 3 solid tumors largest of which was 3 cms found incidentally. Also had an inderterminate mass on right kidney. Had a partial nephrectomy at the NIH where they found 2 more tumors. All 5 were benign. I now go to Johns Hopkins. Love Hopkins!

[TBRowdies in reply to oncowoman]

I actually saw Dr. Rini while I was in Cleveland! I really liked him, very matter of fact, but personable and open to questions and family involvement. He set my treatment plan in motion, which has been continued at Moffitt CC in Tampa, FL. I’m not thrilled with Moffitt, but their abundance of resources and genetics options keep me staying with them. I’ll be learning more this week regarding further genetic testing. I appreciate your response and info on more resources very much. Best regards!

[oncowoman in reply to TBRowdies]

Glad you got to see him Can't remember the oncologists name but there was somebody at Moffitt who specialized in RCC but he left not too long ago. Well at least you know you have an expert overseeing your care.