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Hi,
I am wondering if any of you have experienced having renal cell carcinoma with VHL...if so, have any of you had a metastasis from it to your bones? What were the symptoms that you experienced with the metastasis there? I am particularly interested in the symptoms with the legs. I am just trying to work through being concerned about myself...Thanks.
K
Hi Kimber,
I had RCC, but no metastasis. However, I was always told to be aware of numbness or weakness in any of my extremities by my neurologist. Do you get regular MRIs of your head, neck and spine?
Hi Kimbre,
I have RCC and my father's RCC did metastisise into his bones (upper right arm). He bumped the refrigerator door and his bone literally shattered from a slight impact. You have a legitimite concern and I would have your doctor order a complete body scan. Best of luck!
Brian
My mother had RCC which we were informed was incased due to the size etc and that it would not spread..............well it did, it went to her spine and then her brain so I would recommend for anyone who has had RCC to have a full body scan, I insisted that my sister have one after she had RCC, good luck x
If you are worried, then you need to see the doctor, get the scans, and find out whether or not you need to worry.
Not knowing is the worst place to be.
Metastatic kidney cancer can be completely without symptoms until it is quite far advanced. That's why we need to do PRE-symptomatic screening.
I'm hoping that your aches and pains are garden variety arthritis, muscle strain, or aging. Go get the pictures to reassure yourself.
Best wishes,
Joyce
thanks everyone,
i agree with you joyce- i know i should get the test to reassure myself, but it is so hard to know when to just try to get my mind off it and move on versus getting tests for everything that concerns me. i lean on the side of caution, since my mom died of RCC and was stage 4 when she just started showing symptoms. it is so sad. i have had a bone scan done over a year ago and it showed "probably arthritic activity in the ankle" and did not rule out metastasis. my lower leg has just gotten so much worse, but could be from my triathlon training. i hate to miss something but aren't the odds more for it not being anything to worry about?
oh, i guess i forgot to mention i have RCC but the tumors have been removed. it has been a year and a half since my surgery. one tumor was 4.5 cm which is considered past the size for possible metastatic potential. that is mainly why i keep my eyes open for symptoms of cancer spread...
I would get the scans for peace of mind!!
xoxo
Tina
Hmmm... some of what you say does not quite compute. Let's review.
When you have VHL, you are at risk for kidney tumors, which are all renal cell carcinoma. I don't say that to terrify you, because the little ones don't have any idea how to metastasize. But there will be a series of tumors throughout your lifetime. When they begin (or indeed IF they begin) and how many you will get will vary widely from one person to another, even in the same family.
The trick in living with VHL and keeping your kidneys healthy is to make sure the kidney tumors don't get bigger than 3 cm. In order to do that you have to MONITOR the kidneys -- getting scans or surgery once will not do the trick. You should have your kidneys check once a year for no good reason at all -- just to make sure.
Going for a bone scan is not a first step, it's a later step. FIRST check the kidneys. Is there new growth? Is there anything getting big enough to worry about? Talk with your urologist about a strategy for "pruning" now and then to take off the biggest tumors, but minimize damage to the kidney and keep it working well for you. You might want to explore the possibility of "robotic surgery" in your area.
If we can keep the biggest tumor under 3 cm, then the risk of metastasis is very low, and will hopefully never be your problem.
If you have had a very large tumor (yours was 4.5 cm which is in the medium-risk zone, but not mammoth) and it's less than 2 years since it came out (yours is 1.5 years), it can be wise to get a bone scan to see if there are mets. It's great to hear that there are none! That's definitely reassuring.
And at the same time, you also need to re-check the kidneys themselves, to make sure there are no additional tumors getting to the 3 cm level.
RCC rarely shows symptoms until you are in deep sneakers (kimbre's mother was stage 4 when her symptoms began -- that means that the cancer had already metastasized before the symptoms began). So this is an area where you do not want to wait for symptoms. You need to be watchful BEFORE there are symptoms -- hopefully you will never have symptoms from the kidney.
Best wishes,
Joyce
thanks joyce. sorry to confuse. i only got a bone scan after my kidney tumors were discovered because i had pain in my ankle and pelvis and really wanted it checked. i was scared i think and i wanted all of my body looked at. that was done 2 years ago prior to my surgery. yes, i do get scanning done every six months since my surgery to check my kidneys and my pancreas tumor too. my surgery was robotic and i am being followed at NIH. this past february, there were no new growths so that is very good. that told me to return in 2 years but i was able to talk them into one year since i was told that my larger tumor had the potential of spreading, though they minimized that possibility. so i have been scheduling more frequent scans here at home. my concern has mainly been about the larger tumor that i mentioned. the oncologist suggested getting CT's or MRI's every 6 months to check for mets, but it seems like she only meant abdominal scans. i just wonder how doctors are supposed to know if it has spread to the extremities? i do have my regular brain and spine scans. but are full body bone scans or full body MRI's warranted in this case? my experience has been that doc's wait for symptoms before agreeing to do this. it doesn't seem like a routine protocol to do a body scan...i wonder why?
Hi everyone
In 2002 my left kidney was removed due to RCC. However, but no metastasis. I then underwent RFA procedure to R kidney. I just had a CT Scan done this past week and Friday I will get my results. I'll keep everyone posted - good luck with your situation and God bless us all
Replying to Kimbre's question...
"... are full body bone scans or full body MRI's warranted in this case? my experience has been that doc's wait for symptoms before agreeing to do this. it doesn't seem like a routine protocol to do a body scan...i wonder why?"
The recommendation to return in two years is evidence of the doctors' estimation that the risk of metastasis from your tumor is low. This is based not only on size, but on the characteristics they found during the surgery -- the shape of the tumor, its location, and certainly behavioral characteristics of the tumor. That is, of course, good news, but is still only an educated guess. Coming from NIH, from doctors who held your tumor in their hands and who know VHL very well, I would say it has at least a 90% chance of being exactly right.
Nonetheless, if you are nervous about it, you are doing the right thing to check throughout the body. It may not be standard, but anxiety is a terrible thing to live with. To get the data that will reassure you, there are full-body scans and bone scans that will check throughout the body.
These tend to be somewhat expensive, so they are not routinely recommended for everyone. It's again that risk/benefit calculation. If the doctors felt that your risk were higher, they would have sent you for this scan. Not every insurance policy will cover it, so in some cases that might also influence such a recommendation.
You are right that abdominal scans would only check for local recurrence, or spread to other abdominal organs. That's where the risk is highest. If you want to get information about any possible bone involvement, then it is logical to pursue a bone scan or full-body scan.
I hope that helps. It's that risk/benefit calculation that doctors have to do for everything. Once you have symptoms, then it is clearly important to get the scan. But in the absence of symptoms, what are the odds that you might have a problem that has not yet shown up as symptoms?
For the most part, these calculations were made up for people in the general population. People with VHL have additional risk factors that we build into the recommendations for screening.
Similarly, you know that you have had a larger tumor, and that your mother died of RCC. These are special personal risk factors that play larger in your own case and in your own mind than for most people. That gives you a special very valid reason for requesting such a scan. Hopefully the doctors will agree that you need this information so that you will sleep better at night.
So yes, in your shoes, I would be asking for that full body scan as well.
Best wishes,
Joyce
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