Help with questions for onco appt

If you had a bone scan and x-ray of your thigh and they were clear then it’s not mets, thank God. And if the statins aren’t causing it then it could be pulled muscle, tendon, just about anything. It could even be left over from surgery where they put your body in all kinds of unnatural positions. Or perhaps a nerve was injured and it’s affecting your thigh. Discuss it with the oncologist.

Aside from follow up protocol and your path report I can’t see anything else to discuss; maybe others have suggestions. Let us know how it goes with the onc! Wishing you the best.

Oh, and no, I did not spend the day doing housework 2 months after surgery. No wonder you’re sore.

APny said:

In case it helps, I was stage

In case it helps, I was stage 1 also and my protocol is kidney scan and chest x-ray every six months. My surgeon is also an oncologist and an expert in RCC so I'm comfortable wtih that follow up.

I definitely don't trust my urologist for followup.  I only had a CT of the abdomen 6 weeks prior to surgery.  Even after telling me a had a very large, grage IV, very aggresive tumor, he only said I would have another CT in 6 months and said that I did not need an oncologist.  I could have been walking around with a tumor in my lungs and would not know it for 6 months.  This is even though he is the director of minimually invasive surgery at a major teaching hospital.  He should have known better.  My lung nodules did not show up until 18 months later, but if they had been there at the time of surgery, I would not have known it.  Urologists are experts at removing kidneys.  Most are not experts with kidney cancer.  People have different opinions on this.

Also, my case was different from yours in that I had a large, aggressive tumor.  Yours being Stage I means that you will need followup, but not as often as some of us.

I don't have any suggestions about your thigh pain but can tell you that I had off and often flank pain for about a year.  Give yourself time and don't overdo.

Kathy.

APny said:

Ultrasound is only as good as

Ultrasound is only as good as the equipment, the technician doing the scan, and the doctor interpreting it so it's possible that some are better than others. My protocol is US of the kidney only and I get that done at Sloan Kettering where I had my surgery. It's picked up tiny cysts and a couple of what they think are angiomyolipomas that are well under a centimeter so I think it's pretty sensitive. But I always felt everyone should do what they're most comfortable with so if you believe a CT scan would be better, certainly ask for that. So far I'm fine with my follow up but if I weren't I'd insist on a CT scan. And at the very least do get chest x-rays every six months.

Good you're going to back to work but take it easy!!

My follow-ups for partial neph, also Stage 1 are CT's with & without contrast & labs. I'm seen by a uro/onc doc. 

If you were cleaning all day, I'm not surprised to hear you're sore, have to ease into it. I'm 3-1/2 post op and it still routinely have flank pain! Not sure what the deal is with that & sometimes anxiety kicks in because of it. Eventually I get pissed at myself for my anxious thoughts about it & pull up my big girl pants & try to get on with celebrating life in the moment. Lately, the anxiety is getting the better of me & my GP told me last fall if it gets to be too much she will order my tests early to put my mind at ease. At least I have that in my back pocket. I'm trying my damndest (sp?) to hang in there though.  Some days are easier than others, for sure.

Still keeping you in my prayers,

Donna~

APny said:

In case it helps, I was stage

In case it helps, I was stage 1 also and my protocol is kidney scan and chest x-ray every six months. My surgeon is also an oncologist and an expert in RCC so I'm comfortable wtih that follow up.

Just chiming in to make sure we all have our terminology straight. Urologists are surgeons and not "oncologists". Even if they are a "urologic oncologist" they are actually a surgeon with special training in masses, but still are not what everyone calls an "oncologist".

An "oncologist" in everyday language, actually refers to a "medical oncologist". These are NOT surgeons. They are internists. They almost always come from a background in internal medicine and maybe hematology. These are the docs that manage metastatic cancer (give chemo, refer us to surgeons like urologists and urologic oncologists, radiation oncologists, etc.).

It's very rare for a surgeon to also be a medical oncologist.

The terminology sucks. You're seeing a urologic oncologist and you think you're seeing an "oncologist". You are probably not seeing an oncologist.

I think most medical oncologists would want to do a CT of chest, abdomen and pelvis with contrast if possible. The frequency for Stage 1 might be something like 6 months for the first 2 years, then yearly after that.

I personally would never stop getting annual scans, even if I was Stage 1.

My urologic oncologist wanted to do a chest X-ray and a CT of abdomen/pelvis at 6 months and 1 year, then yearly after that. I was Stage 3. This wasn't enough or frequent enough. I'm glad I found a medical oncologist with RCC experience who followed me more closely. Stuff doesn't show up on a chest Xray until it's pretty good size.

Hope something I said is both correct and helpful. Lots of it is my own opinion speaking from my experience.

Hugs,

Todd

P.S. Did you have a CT of your hip/femur with contrast? If it was a met, that or a nuclear bone scan should have shown something.

sblairc said:

If I was Stage 1, I'd probably stay with the surgeon

Do you like your urologist? Is he doing a good job? We LOVED LOVED LOVED our urologist that did my husband's surgery. 

But because my husband was Stage 3, we wanted a relationship with an oncologist in case it came back. I didn't really want to switch, but I did. He's a doctor of "Hematology/Oncology" like Todd stated.

Otherwise, I would have been comfortable staying with my urologist. Even now, I feel like we are wasting the Oncologist's time going every 6 months to review scans about "not having cancer" but since that is who is now taken on the case, we go an meet him every 6 months. 

So I guess my thought is it depends on the stage. 

Also, a bladder is part of a CT scan. At least on my husbands anyway. 

Yes, the terminology is very confusing. This is what I found. It's actually a very good website explaining various specializations and the difference between them. 

“There are mainly three types of Oncologists – Medical Oncologist which uses medicine for the treatment of cancer. Radiation Oncologists use radiation for the treatment of cancer. Surgical Oncologist treats cancer with surgery. It is important to mention that some urologists are known as Urologic Oncologists. They are actually surgeons who provide treatment of cancer of the urinary tract and male reproductive organs.”

http://www.differencebetween.info/difference-between-oncologist-and-urologist

Hey Kim, as you know our surgeries are super alike but I am a month ahead of you. I started seeing a chiropractor 3 weeks ago for chronic neck/upper back stiffness and it has started to lesson. My lower back also screams at me when I do a lot any given day. Our bodies just take a while to get over the atrophy from those first 6-8 weeks of caution. Did anyone else have aches and pains for months out from surgery in non-surgical areas?