Enlarged neck nodes

todd121 said:

RCC Doc

Hi Ryan,

Your situation is exceptionally unique. Is your RCC doc a medical oncologist that treats exclusively kidney cancer patients? In your particular case, I think it's incredibly important that you have someone that really understands kidney cancer (various types) which is actually multiple diseases and not one disease. I just heard Dr. Figlin (one of the researchers that developed Votrient and a leader in kidney cancer research) speak yesterday at Cedars Sinai in Los Angeles. One of his remarks was that what we are learning more and more is that RCC is not one disease but multiple diseases and it's very important that the treatment be tailored to the exact type of RCC someone has and not treat them the same as everyone else. Given how unique your situation is (presenting with two different types of RCC at the same time in different kidneys), that what he said would be particularly relevant.

When were your last scans? I assume you aren't on any treatment right now. Did they do a baseline nuclear bone scan and brain MRI after your surgeries just to make sure you're completely disease free? Did you get a CT scan with contrast of chest/abdomen/pelvis after your last surgery as a baseline? I ask because I had all of these after each time I had RCC. It was required for me to be eligible for any trials. My thoughts is that I want the same tests done that the researchers want done to make sure I'm disease free each time they find something.

Hopefully something else is going on and this will clear up. Swollen lymph nodes can be caused by lots of things. After my nephrectomy, I had all kinds of weird symptoms for months. Swollen lymph nodes was among them. They were in my armpit though, but I did have them investigated. I also had a swollen lymph node in my chest somewhere that they investigated by sending me to a pulmonologist. It turned out to be just a measurement anomaly.

Just telling you this last part to let you know there's a great chance it will clear up. Of course get them to look into it. I hope it's nothing and it clears up soon.

Best,

Todd

Todd, thank you - your comments are incredibly helpful and very insightful.  

I have had no treatment since my second partial neph in January 2018.  Both my urologic oncologist and cancer geneticist agreed that with the size, stage and grade of the tumors no follow-up scans were necessary until 6 months out...that will be in early August.  I have not seen a medical oncologist at this point.  My doc is the leading kidney cancer doc in the area and a top researcher in the field.  Other docs around here refer to his office as NCI/NIH North due to his expertise and training at NCI.  He does treat other urologic cancers but RCC is his focus. 

I had a chest/abdomen/pelvis CT prior to the second surgery that was NED but nothing since.  I've often wondered if a baseline PET, bone scan and brain MRI should be included in my plan of care...especially after reading posts here.  I will bring that up with my doc for sure.

The hardest part is that my brain thinks that every ache, twitch or symptom is a met…still working to get over that. 

I'll provide an update as soon as I can.

Best,

Ryan  

sandy23 said:

Also, I forgot to mention

Also, I forgot to mention that if you are constantly "checking" them to see if they are getting smaller, you are actually making them larger.  I have health anxiety and have gone through a phase where I was endlessly feeling my lymph nodes.  I found out that every time you touch a lymph node, you will gradually enlarge them.  They don't like to be touched.  I know it's hard because you want to be sure they aren't getting bigger or, maybe, they are getting smaller and you can feel better.

Sandy, I do remember reading your post about nodes.  Thank you for taking the time to respond...your info is super helpful - and calming

I'll post an update when I have one.  Until then, I'll keep on keeping on!

Ryan