Just Diagnosed, so many Q's

if you are having laproscopic i wouldn't thik they will remove your rib. i had the old fashioned open kind because my tumor was 7.2 cm and they removed a rib and left my adrenal gland, it was not near the end of the kidney with the tumor and looked perfectly fine. sometimes they do remove it if it looks funny or is enlarged. if you go to this site.http://cancerguide.org/kofaq/ they have a huge rsearch and patient site with everything fro stage 1 grade 1 to stage 4 grade 4 who have had every procedure there is and are very knowledge about hospitals and doctors and various treatments. it is really worth checking out, if you have questions, they reply within the hour usually. good luck

My husband had the laproscopic surgery in Dec 04, the 1 year scans, xrays, and bloodwork all came back clear in Dec 05. He won't go back for more until Dec 06. His tumor was 10 cm. and he was fortunate to find a new young doctor in our town in South Carolina who knew the procedure well and was able to remove it that way. He was stage 2, grade 2 clear cell. The doctor also left half of the adrenal gland- he said it was good to leave it in case there were problems in the future with the other side. Recovery from the laproscopic is supposed to be easier because they do not cut the stomach muscles. My husband had some difficult reactions to pain meds afterwards but after stopping them, he began to feel much better. He had CT scans, xrays, and bloodwork in March 05, xray and bloodwork in July 05 then the CT,xray, blood again in Dec 05.
(We did have a scare with a swollen gland in his neck in Apr 05, but CT scan was fine and it is gone now.)

He was 39 when it reared its ugly head simply by taking 2 ibuprofen for a headache which it turns out caused his tumor to bleed. (he never takes OTC pain meds- I insisted because he had complained all day) He had a lot of blood in his urine the next day followed by severe back pain that took us and our 2 sleepy children to the ER in the middle of the night. Of course we thought a kidney stone but found out later the next day it was cancer. Now here we are over a year later, and we just keep looking forward to tomorrow and are thankful for each day. Our prayers were thankfully answered the way we wanted. I made a promise last year to myself and to God that I would keep tabs on this discussion board and I hope that someday I can tell someone that it has been 10, 15, or 20 years and all is well. We do know of 2 other people, brother and sister who are over 10 years from there kidney cancer surgery, diagnosed a year apart. It is possible to make it!

Keep up your fighting spirit as it helped you through your sisters illness and it will keep you strong now.

I am 37 and was just diagnosed with kidney cancer in my left kidney 12-18-05. I had an open radical nephrectomy on 1-12-06. My tumor was 8 cm and was in the upper pole of my kidney. Apparently, this spot is difficult to get to. Anyway, instead of removing my rib (this was something I wasn't crazy about) they broke my rib. I am home recovering now. The only downfall I see to the broken rib is that I still have rib pain on and off. Good Luck to you!!

KCFighter said:

Thank you for the responses, the info is greatly appreciated. How interesting you (nai53) were my age at time of diagnosis & also had the centrally located tumor. Glad to hear they caught it early for you & sounds like you're doing relatively well. My doctor didn't talk about vascular vs. non-vascular. What does that mean in terms of your diagnosis and the surgery?

I'm also very interested to learn what made you choose open instead of laprascopic surgery? Did your doc offer laprascopic approach?

I tried to check the U of s. Cali site but had a hard time finding the info. I looked up the Cleveland Clinic & plan to contact them. I want to have them review my case since I have 3 weeks to stew on it (ugh). My doctor is actually from Ohio(James R. Porter) but practices in Seattle, WA. I'm starting to waffle on total vs. partial nephrectomy. It is so hard when they cannot tell you if it is cancer & what type (I've read about papillary vs. clear cell RCC, etc.) That would certainly help in making a decision. Is there more my doc should/could be telling me?

I greatly appreciate any info you or others can provide.

Sorry to hear of your diagnosis. My wife had a whipple procedure last Oct. that removed an adenocarcinoma 2.5cm. Her surgical margins were RO 27-27 nodes negative. She has recoverd from the surgery well. When this was discovered I spent hours looking for information. The best was the medical site PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed. The site is where all medical information posted from surgeon's, oncologists, and pathologist's from around the world is. It is technical and takes some study, but will educate you. Don't take just what your doctors tell you for the bottom line. Study! And get advice from an experienced doctor not associated directly with your center of care. A friend of a friend doctor that will have a discussion with you about your particular situation. Many practicing doctors will not do this, but if you can find a retired doctor to talk with they will tell you things without fear of being sued. This may not be possible to find I was fortunate to have a friend that was the department head of a hospital that spoke openly and honestly with me about our decisions. If you don't feel secure about what you are being told to do study and get further advice. This can save you unnecessary prodedures and irreversible problems beyond the disease. Go to the top facilites websites and find out who the best surgeons are in your area. If possible choose the best qualified and experienced surgeon you can. Many times you will be assigned to a surgeon and they may be very qualified, but the head of surgery is usually the best choice if you can get them. In my wifes case I chose the head of surgical oncology at MD Anderson in Houston and we are very glad we did. Do the same with any treatment and look at all the information you can regarding the drugs and radiation recommended. The side effects could be worse than the cancer.

I pray you are cured!