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josevaz77

Hi All my name is Anthony of 48 years old. I was diagnosed with stage 3 clear cell carcinoma in December 2024. I had a radical nephrectomy in January 2025 and am currently under Immunotherapy treatment every 6 weeks (9 treatments in total). I also have a suspicious nodule in my right thyroid and other "benign" nodules in my bilateral thyroids. I am currently conducting a molecular test for the suspicious nodule and awaiting results. The plan is if I have to remove a partial or full right thyroid, the surgeon will make every effort to delay surgery until immunotherapy is completed so as not to not affect any parts of the immunotherapy. Seeking patients whom have similar situations. Thank you!

donna_lee

Hi Anthony…doesn't look like anyone said Boo to you this past August. I don't check the board very often, as my "bad news" began about this time 20 years ago. I went in to meet my new doctor in late April of 2006. He was more thorough than the "pillsbury doughboy" (obese) doc I'd had for the 3 prior years. He'd check my pulse, listen to my heart, read my labs & OK my meds. That was all. He had no personality and didn't talk at all. He left soon after.

2006 came and my new doc was really listening. I made an after-thought comment about nausea and vomiting, so he also added an ultrasound to the full labs and a UA. After the US had been read, he called me in and told me I had Hematuria (blood in the urine) ….and masses in my right kidney and left side of my liver, more than likely cancer…..and based upon what was seen, more than likely 5-7 months "unless something could be done."

The following day, I had an appt with an oncologist, next day a CT, and then a 3 week wait for an appt. at Oregon Health Sciences University with 3 docs to review my case and figure out what to do-a Urological teaching MD, the head of the live transplant team, and a Cancer MD who worked with drugs and experimental drugs. Their verdict was, we'll start with surgery and think we can help.

By the time we traveled to Portland, OR at the end of June, I'd had time to get my stuff organized at home, at work, and all the other stuff to accomplish before being put in La-La land.

I went to sleep and woke up a day later in ICU, with tubes and IV's all over, and spent the next 5 days waiting to get out of the hospital.

Bottom line: Right kidney, gone; set of nodes posterior to kidney, gone with 2 of 11 positive; Gall bladder and duct, gone due to a congenital defect in the duct; left lobe of liver, gone due to cancer; several slices of liver gone for biopsies-all negative. Renal Cell Carcinoma, Stage 4 T2-N2-M1. Once the tubes were draining clear fluids and I could walk (barely) I was allowed to leave, to stay in a nearby motel and the next day get up for a 5-6 hour drive to hometown. We flew up to Portland to have the 67 staples removed. And there was no radiation or drugs used, as there was nothing in 2006 that could "kill" it

Then I started the "every 3 month CT" for follow-up. Between #3 and #4, 2006-2007 a single node was found to be enlarging. Back to OHSU to have it removed. And the same thing happened the following year, 2007-2008, but I stayed home to have a local surgeon remove that one.

The CT's were finally stretched to every 4 months and then the routine was Chest X-ray for upper and US for abdomen. One of the X-rays also had the Thyroid in it, which showed ????. More tests (US & nuclear) and up to a biopsy, which turned out negative. What you may find with more frequent tests is that we all have cysts in organs that show on CT's, PET scans, or Ultrasounds.

For the previous 17 years, I have had 4 month, then 6 month and then yearly CT's, labs and Dr. or ANP visits until late 2023. I received a letter from my doctor notifying me that he was retiring AND that I did not need to be monitored for Kidney cancer any longer. BUT, I still need to see my regular physician and my nephrologist to monitor the rest of those things that come with age and aging body. 1 kidney makes for high blood pressure.

I went in with the attitude that I was going to survive, no matter what. And yes, "no matter what" has been dished up numerous times and I still stomping on them. My second granddaughter was born in August 2006 and I whispered in her ear, "You can't get married until you're 50 and I want to be there." That's stretching it a bit, but she's in her 3 year at the University and I get to watch her play Div. 1 Volleyball.

So Sorry you have joined the club and wish you all the best in your journey. I hope all is going well, now and the thyroid issue is behind you. My niece had to have her's removed and does fine with medicines to replace it.

donna_lee