standard of care

Had a 3.5 cm clear cell rcc stage 1a grade 2...before surgery had abdominal and pelvic MRI with and without contrast, blood work and pelvic and abdominal CT with and without contrast...after pathology results from surgery had a bone scan and chest CT...scheduled for blood work, pelvic, abdominal and chest CT in beginning of December...

My husbands tumor was 5 cm.  He had a CT/PET scan preoperatively to see if there was metastatic disease.  They wanted to know the "big picture".  His family practice doctor and the renal oncologist, and renal surgeon all wanted this test.  Turns out there was metastatic disease to his bones, which made him Stage 4.  His spine was stabilized with surgery and he was started on targeted therapy, even though we wanted his kidney tumor removed in addition to the spine surgery.  Long story.  We eventually found a surgeon willing to do it and a tumor board/oncology group that approved.  So his kidney tumor was removed and he continues on with targeted therapy.  He has PET/CT chest, abdomen and pelvis scans every 8 weeks to 12 weeks.  He also has a MRI of his spine done at that time.  He has lab work done every month checking (renal function, thyroid function, CBC, Calcium, liver function etc.).  We really like the fact that our family practice doctor is very involved and cares about the whole patient.  He doesn't do the orders for tests.  They are ordered by the renal oncologist, but he does give us his opinion and helps steer us in the right direction to be our own advocate, and make referrals to help us.  He helped us get into a visit with a renal cancer surgeon when the first group refused to do surgery.  I would recommend to you that you ask for copies of all your lab work and the pathology report. 

I am beginning to think there isn't much of a "standard of care" when it comes to renal cancer.  I learned early on here from "Fox" that if you want something, just be your own advocate and pursue it.  Thank you Fox.  You really helped us. 

twinthings said:

A., thanks for your reply!  I read stories like your husband's and, I feel bad for whining.  Honestly, I can't even compare my situation to his.  It sounds to me the fact that he had doctors interested in "the big picture", no doubt, has added years to his life.  That said, it sounds like he (and you) still has a battle to fight and I will lift you both in prayer!

My doctor is very good at surgery, but, I feel like now that the tumor is gone he kinda has the attitude that all is well and I can relax.  He tells me not to worry and to stop looking for trouble.  I'm not looking for trouble...I just want to see the "big picture". 

I do have copies of all my records, including the surgery report, pathology report and lab work.  It really wasn't as informative as I had hoped, however, it was upon getting those records that I learned my adrenal gland was not removed and lymph nodes were not tested.  My pre-op paperwork indicated the adrenal gland and nodes would be removed/biopsied, so I  assumed that was the case.  I was wrong to assume...my daddy told me years ago, to never assume.

I learn something new everytime I log in to CSN, thanks to Fox, Texas, Iceman and so many others, just like you!  So, thanks again for chiming in.  It's heartwarming to see someone like you, with so much on your plate, reaching out to support others, like me.

Bless you!

 

My urologic oncologist wanted to follow me, but I went to visit 3 oncologists instead. But I was Stage 3 and told by the two RCC specialists that my recurrence risk was higher, like 50%. The urologic oncologist said I was cured. He wanted to follow me with a chest xray and ct scan of abdomen and pelvis after 4-6 months. When I asked about why to wait that long, he said he was hoping that my kidney function in my other kidney would have improved enough by then to allow me to have a ct scan with contrast (my creatinine was 1.9 post op).

I've been told that that is the minimum standard of care. A chest X ray and ct of pelvis/abdomen every 4-6 months for first 2 years then yearly to 5 years.

The first oncologist I saw was fresh out of school. He really didn't know much about RCC. He told me that I was pretty much cured also (although not quite as optimistic as the surgeon). He plugged some numbers into some website and told me I only had a risk of recurrence of like 13%. I was lucky that my uncle is a retired oncologist so I got some good advice along the way. He had read the studies, and he told me he felt the guy was way off base and urged me to see specialists in RCC. I live in Orange County, California and there are several cancer centers nearby. I made appointments with Dr. Pal at City of Hope and Dr. Figlin at Cedars, both RCC experts. They independently put my risk of recurrence at 50%. One urged me to enter a study, the other just offered it to me, but didn't urge me to do it. I decided to do a study. I'm in the everolimus study at City of Hope with Dr. Pal. Dr. Figlin suggested if I did a study, I should take votrient.

Your tumor being small and stage 1 and grade 2, makes your recurrence expectation pretty small. That's good news.

You might want to think about seeing a medical oncologist for follow-up. It's up to you, not the urologist (depending on your insurance too, I suppose). If, heaven forbid, you did have something come up, you'd need to see one anyway. You might also want to see a nephrologist just to get some basic counseling on living with one kidney and have him check your blood work to make sure your remaining kidney is ok. I did that too. I see a nephrologist a couple of times, and now he says I don't need to come back for a year.

The chances of you having a tumor in your other kidney is really small. Only something like 5% of second site mets are in the other kidney (unless you have a genetic predisposition to kidney cancer). So your chances are something like less than 0.3%.

Are you in Oklahoma, by the way? Why are you going to OKC for treatment? I'm from Oklahoma. Just wondering if we're from the same area. I grew up in Duncan and southwest OKC.

Todd

P.S. My adrenal gland was also not removed and no lymph nodes were removed either.

twinthings said:

OKC

Thank you for the feedback, Todd.  I do realize my chance of recurrence is slim to none, however, having both parents die with cancer, both in their early 60's and just 9 months to the day apart, I can't help but worry.  My dad's was colon cancer but mama's primary location was unknown.  She was pretty eat up with it and died shortly after diagnosis, as did my daddy, dying just 5 weeks after diagnosis.  It's in my genes, I guess.

I live just outside OKC in the town of Mustang.  I work in Ohio so I do a lot of flying back and forth.  It's madness!!!

 

Sindy

I went to Western Heights High School. I lived 10 years right next to the junior college there near Moore.

My grandmother passed away of colon cancer that had spread to her liver. My grandmother didn't last too long after her diagnosis either.

I can understand your worry. Even with a few percent chance, I'd worry too. I think as time goes on, you will get less worried.

You do want to get followed up. If you aren't comfortable getting followed by your urologist, see if you can find a good medical oncologist with some experience with RCC and let him follow you. You might get some reassurance knowing somebody that really knows what they are doing with this are following you.

A good place to look for doctors that specialize in RCC, is to check out the drug studies going on in the areas where you live. Usually the centers/doctors involved in the studies have an interest in the kind of cancer the study is aimed at. That's how I found Dr. Pal and Dr. Figlin. I had never heard of either of them. I went onto one of the websites where you can search for drug studies, then found the doctor's name associated with the study and called for an appointment. Look for studies related to clear cell renal cell carcinoma. I think others have posted the websites to search. The nih and the american cancer society have search engines to search for studies. If you can't find the website, let me know and I can find them for you.

You can also just look for papers that have been written and look for doctors associated with institutions (medical schools or hospitals) that are near where you live or work.

Or you can ask here for recommendations.

Best wishes,

Todd