Just Diagnosed, so many Q's

KCFighter

I just lost my 43 yr. old sister to pancreatic cancer last Sept. On 12/9/05 I had CT scan revealing a 2.5cm tumor in my right kidney...BAM!there it is...just 3 months after losing my sister, I know face cancer myself.

Nothing was found anywhere else after chest x-ray, bonescan, urine cytology, & CT of pelvis & abdomen. Scheduled for surgery 3/2/06...seems a long wait. I'm having a total nephrectomy via laparocopic surgery by a specialist in Seattle but I'm worried after reading other's comments that you should go to Cleveland for the lap-surgery. My doc is the most experienced on west coast but it still scares me.

He offered to try for partial neph but my tumor is very central in the kidney & would be difficult so I'm going to have the whole kidney removed. He says he'll leave the adrenal gland though. Is that advisable?

I never realized that a rib removal was something to worry about - is that only with open neph? How soon after surgery is typical for follow ups? My doc said 1 week & then not again until 6 months. Then 1x per year after that. Only plans blood work & alternating CT's with Ultrasounds to minimize radiation from CT's.
I'm only 36 and wanting to have a long happy life with my husband. Is there anyone out there who can give me hope with a story of beating this? Any information anyone can provide on my questions above would be greatly appreciated. Good luck & good health to you all.
KC Fighter

urkabsd

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

nai53

I understand exactly where you are coming from. I was 36 when I got the news. My mother was diagnosed with lung cancer 9/03 and passed away 6/04. She was 61. My sister and I took it upon ourselves to be screened for colon cancer seeing as how it runs in our family. My doctor also scheduled a lower abdominal CT due to a possible hernia. The CT scan showed a solid 1.5cm mass in my left kidney. Being internet savy, I looked it up and dispelled it as a cyst. I went back to my doctor in 2/05 for cold symptoms and he urged me to get an ultra-sound. I did. Thank God. Two CT's later and I was being sent to a specialist. I was twice blessed finding an experienced urologist who studied at the Cleveland Clinc. I live in NW Indiana. My tumor was also centrally located in my kidney, but did not appear vascular. I had an open partial nephrectomy on 3/21/05. The tumor was grade 1 and the cancer was contained to the left kidney. The rib removal was the hardest part. To this day my back hasn't adjusted to the missing rib. I had my 6 month check up which was negative. My doctor also explained that I would need follow up exams every year for first 5 years, and then every other year after that. You should read the research from the University of Southern California and the Cleveland Clinic for what I feel is the best information. It has taken me a while to feel like a survivor considering most cancer patients need chemo or radiation. I guess not only am I a survivor but I am also very fortunate. You can email me if you need to talk. I wish you the best. nai53@hotmail.com

KCFighter

nai53 said:

I understand exactly where you are coming from. I was 36 when I got the news. My mother was diagnosed with lung cancer 9/03 and passed away 6/04. She was 61. My sister and I took it upon ourselves to be screened for colon cancer seeing as how it runs in our family. My doctor also scheduled a lower abdominal CT due to a possible hernia. The CT scan showed a solid 1.5cm mass in my left kidney. Being internet savy, I looked it up and dispelled it as a cyst. I went back to my doctor in 2/05 for cold symptoms and he urged me to get an ultra-sound. I did. Thank God. Two CT's later and I was being sent to a specialist. I was twice blessed finding an experienced urologist who studied at the Cleveland Clinc. I live in NW Indiana. My tumor was also centrally located in my kidney, but did not appear vascular. I had an open partial nephrectomy on 3/21/05. The tumor was grade 1 and the cancer was contained to the left kidney. The rib removal was the hardest part. To this day my back hasn't adjusted to the missing rib. I had my 6 month check up which was negative. My doctor also explained that I would need follow up exams every year for first 5 years, and then every other year after that. You should read the research from the University of Southern California and the Cleveland Clinic for what I feel is the best information. It has taken me a while to feel like a survivor considering most cancer patients need chemo or radiation. I guess not only am I a survivor but I am also very fortunate. You can email me if you need to talk. I wish you the best. nai53@hotmail.com

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.

nai53

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.

My choice was simply put by my surgeon...You can see more through an open doorway than through the peephole. He also wasn't thrilled about the procedure techniques. He gave me a referral to a surgeon out of the Univ. of Chicago but I got his point. I read some concern over spillage. I figured I was young enough to endure the open surgery. I think I made a good decision. I gave you the wrong college, it's the UCLA Medical School. Vascular only means that the tumor is either found a blood supply or adjacent. The central tumors are tricky according to my doctor; however, he only a total of 2.5cm of kidney tissue (including tumor) was removed from my kidney. It still works and I pray it stays healthy. I found out the grade of my tumor from pathology the day after my surgery. My tumor was clear cell. I did not have any fatty tissue or lymph node invasion. My surgeon was 90% sure my solid lesion was cancer before the operation. I pray yours is the benign sort. You caught it early. Knowledge is the pathway to enlightenment. Research yourself. Ask many questions. My doctor was Edward Cherullo. I would highly recommend him. He is younger, experienced, intelligent, and has a great personality.

carolinafans

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.

zoey

Hi KCFighter,
I just wanted to add this...April will be 7 cancer free years for me after a partial nephrectomy. Hope this helps calm your fears a bit. All my best to you.
Zoey

LaineyH

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!!

Chicago

Hey KC,

It sounds like you've probably caught it just in time. I was 36 too (39 now) when they found the mass in my kidney the same size as yours. Surgery was also delayed two months from the first scan.

Don't worry about Cleveland Clinic. That is the only place that is doing laparoscopic PARTIAL nephrectomies. Any decent hospital (and there are several excellent ones in Seattle) should be able to do a full nephrectomy laparoscopically.

One of those funny anti-intuitive things. The partial nephrectomy is a much more complicated and involved procedure than the full.

You are unlikely to lose the rib with the laparoscopic procedure either. The rib is basically removed to give really good exposure to the open area. The laparoscopic procedure though, doesn't need it.

After surgery, you should need CT scans every six months for the first two years. And if everything is clean after that, you should go to having one scan a year for the rest of your life. The "radiation" exposure is very minimal. It's just x-rays, and not actual radiation.

Assuming that they've caught your cancer early (under 3 cm is a good sign) kidney cancer is one of the easiest cancers to treat. Surgery will be the last word on it if they get it all.

My sister is a doctor in Seattle, and we've got lots of connections to the medical community there if there is anything you may need. Feel free to email me any time.

noltus

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!

KCFighter

Chicago said:

Hey KC,

It sounds like you've probably caught it just in time. I was 36 too (39 now) when they found the mass in my kidney the same size as yours. Surgery was also delayed two months from the first scan.

Don't worry about Cleveland Clinic. That is the only place that is doing laparoscopic PARTIAL nephrectomies. Any decent hospital (and there are several excellent ones in Seattle) should be able to do a full nephrectomy laparoscopically.

One of those funny anti-intuitive things. The partial nephrectomy is a much more complicated and involved procedure than the full.

You are unlikely to lose the rib with the laparoscopic procedure either. The rib is basically removed to give really good exposure to the open area. The laparoscopic procedure though, doesn't need it.

After surgery, you should need CT scans every six months for the first two years. And if everything is clean after that, you should go to having one scan a year for the rest of your life. The "radiation" exposure is very minimal. It's just x-rays, and not actual radiation.

Assuming that they've caught your cancer early (under 3 cm is a good sign) kidney cancer is one of the easiest cancers to treat. Surgery will be the last word on it if they get it all.

My sister is a doctor in Seattle, and we've got lots of connections to the medical community there if there is anything you may need. Feel free to email me any time.

Thanks to all. Chicago, I wish I would've seen your message sooner. I've been away from the site & now go in for Surgery tomorrow morning but I would love any advice your sister has about the laparscopic partical nephrectomy & Dr. Porter. I definitely want laparascopic but am very torn about doing partial vs. total. Being 36...I want to save as much as possible but I've read about how complicated it is & you want an expert's expert. I've read long term, can make a difference not to have entire kidney taken. I plan to call my doc today to ask how many partials he's done laparascopically, the rate of positive margins & complications. If you get this today & have a chance to respond, I'd love to hear what you and/or your sister has to say.

KCFighter

zoey said:

Hi KCFighter,
I just wanted to add this...April will be 7 cancer free years for me after a partial nephrectomy. Hope this helps calm your fears a bit. All my best to you.
Zoey

Zoey, congrats on your upcoming milestone! 7 years...that is inspiring. Would you mind sharing your age at diagnosis, RCC sub-type, stage, and grade? Also, any info you have about positive margins?

I had surgery on 3/2/06. He tried for a partial via laparascopic but got a positive margin so took entire kidney. Mine was 2.5cm, sub-type was chromophobe, stage was pT1a, and nuclear grade was 2.