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Posts: 37
Joined: Jul 2005

hi, chicago, i have seen your replies here and it seems that you have a level head and a lot of info and experience.my surgery was six months ago. clear renal cell which they told me was totally encapsulated in the left kidney. stage 2 because of size. i have that bulge but i also have pain and stiffness with it even though it has been 6 months since my surgery. i walk everyday and try to stretch and do anything i can think of to make it better. i have noticed the more active i am while it will get sore, in the long run i feel better. the fatigue still kicks my butt. my cat scan showed inflammation still in the area and my doctors disagree if that is normal. i went to the university of albama in birmingham for a second opinion and that was a joke. it was a horrible experience and no one seemed to know what they were doing. one of my doctors reccommends cats every 5 months, my oncologist every 3 months. i feel as though i am glowing in the dark now! i think psycologically what happedned to my recovery slowing down, we had 4 people here with almost identical set of things going on. we all had surgery removed kidney and rib and lymph nodes. no one's but one had spread to lymph nodes. they have all passsed away except one who is in hospice now. this has been in a 7 month period. we all started out so positive and hopeful and i was certainly not the one with the smallest tumor or the least problems. i pray very hard and i believe in GOD but at times it really gets me down that they are gone now. i scour these boards for anyone who seems to have a case similar to mine hoping for encouragement. love to hear from anyone out there!
kathie from georgia

Chicago's picture
Posts: 73
Joined: Apr 2004

Hey Kathie (sorry I didn't see this message earlier),

I'm somewhat surprised to hear so many negative outcomes for Stage 1 or 2 renal cell cases. Stage 4 cases are unfortunately known to have great difficulties, but renal cell is usually quite beatable when caught early.

But as to the bulge (as I mentioned to you privately), the buildup of scar tissue in the area of the operation is extremely common (mine is quite significant). I have since just recently learned that a lot of physical exertion early on in the healing process can greatly increase the size of the bulge. Those of us who get this thing young tend to overexert early on, I guess.

Three years out, I still find the area very stiff, and it still occasionally pulls a bit and spasms lightly. I was getting a lot of painful spasms for the first six months though, and then less often for the next six months. After a year, it was mostly just bulgy and stiff.

Your fatigue doesn't surprise me. I was easily exhausted for months and months after the surgery. All of the muscles in your side have to knit back together, and the removal of a rib tends to make everything worse for months I'm told. Don't know what to tell you about inflammation though. Just stay on top of it. Make sure nothing is infected to cause the inflammation.

Nobody has recommended CT scans to me less than 6 months apart. Once every thing stays clear for the first two years, the standard is then yearly scans. The only oncologist I would listen to in your place is your urologist. Regular oncologists don't necessarily understand renal cell in its early stages.

Again, I don't know what to tell you about your friend who had similar operations. It seems like there must have been more to their stories than they told you, or than they were told by their doctors. A successful surgical removal of an RCC mass before it spreads is usually an entire cure to the cancer. We have an increased likelihood of getting it again, but even that shouldn't be so scary since the regular scans should catch it early again.

Keep writing if you have any questions.

Hang in there.

Posts: 37
Joined: Jul 2005

thanks, chicago!
i really appreciate your answer. it is great to "talk" to someone who has been there! i am finally getting over the paranoid feelings everytime i have a new ache or pain. i had torn my meniscus in my knee before i had the kidney surgery so that didn't help much. i am doing better every day but the barometric pressure can aggravate the side as much as it bothers my fibromyalgia. keep healthy and strong! GOD is the same yesterday, today and in the future and HE is in the healing business!

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