CancerCompass message board discussion started by TOMMYNYC on 3/7/2008 http://www.cancercompass.com/message-board/message/all,21754,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Dear Friends:  My mom is very nervous about this whole situation, but she is going to go for a partial nephrectomy to remove a 1.2 cm solid mass (probably clear cell renal carcionoma).  It is located on the lower pole of her right kidney.  My mom never smoked, nor drank, and watches her diet.  She is in excellent health.  I am just worried about complications during and after surgery.  Is it very painful?  What are the worst symptoms?  Recovery time?   My mom is a 66 year old white female whom also exercises regularly.  Has anyone known of people where this renal cell carcinoma has recurred?  GOD BLESS all of you for surviving such a horrifying situation!Thanks for listening!Sincerely,TOM (NYC)    TOMMYNYC Fri, 07 Mar 2008 00:00:00 GMT I had my left liver removed Jan 07 (I'll be 44 this month). Not too bad afterwards since the incisions were small. As for the cancer, your mom needs to be checked regularly. I don't know where you live but your mom needs to see someone who specializes in kidney cancer. I go to the number one hospital in Houston, MD Anderson. Local docs mean well but they really don't have the expertise to monitor/properly treat a kidney cancer patient. I see a local doctor every 12 weeks (in between my regular visit to MDA) and they report back blood test results to MDA and administer my 'every 6 weeks' medication. I would be happy to go into more detail the changes I have made in my lifestyle to help keep the cancer under control. Send me a private response if you want more info. pooh2323 Sun, 09 Mar 2008 00:00:00 GMT Hi, Sorry to hear about your Mom.I just had open partial nephectomy for RCC Feb 4. I'm 43, other wise very healthy. My RCC was found "incidentally", I slipped on ice at work, went for a back x-ray, and a month later I was sitting at the urologist getting my cancer diagnosis. Every one calls it my miracle fall because if I hadn't fallen, it would still be growing inside me. It is good that they are saving the kidney. Because it is an open procedure, the healing is longer. My scar is long. Front to back around my flank, probably 7-8 inches. Recovery is long and painful. (I'm not trying to scare you, just prepare you) I was told by several other dr and nurse friends to be prepared for a long painful couple of weeks. The surgery was 5 1/2 hours. I was in hospital for 6 days. I had a chest tube because they nicked my "dura" (the sac around my lung).- Not uncommon.She will probably have a "Jackson Pratt Drain" it will drain urine out of the area around the kidney. I have had this for several weeks, most people just a week or so. I am reminded by my urologist that I still have my drain because my kidney is putting out good urine and that's why my kidney isn't "sealing up " quickly. Still it's an annoyance.There can be a some rib pain, because often they use rib spreaders, I think this is an improvement over removing the rib, which used to be common. This small size is a really good sign. They found it early. Mine was about 4.0 cm and my dr is thrilled with my pathology report. I'm still only 5 weeks out, but he says chance of recurrance is tiny. Some other people on this site have had very different experiances so I guess I'm no expert.My dr told me (again I'm not the expert) that they do an open procedure so they can really see and feel the tumor. My make sure they get all of the edges with out any complications. I could have opted for a "hand assisted laproscopic procedure" and had the whole kindey removed. Recovery would have been quicker. My dr keeps reminding me that all of this discomfort that I'm going through now is really just the "cost" of having 2 functioning kidneys. Good luck with your Mom and stay in touch.katskidney  katskidney Tue, 11 Mar 2008 00:00:00 GMT Hi!Thank you for sharing your story with me.  I can only imagine all of the stress and physical pain that you have been going through.  I know, that one day very soon, you will be 100%.   I was wondering what your pathology report had stated (i.e. clear cell, papillary, mixture, benign, etc).   Also, why are all of these MD's confident that this type of cancer will not return?  What makes this cancer so different than the others?  Perhaps I should not question it, and be very hopeful!  Mom is going to have her surgery in a few weeks! Sincerely,TOM TOMMYNYC Tue, 11 Mar 2008 00:00:00 GMT  On 3/11/2008 TOMMYNYC wrote:Hi!Thank you for sharing your story with me.  I can only imagine all of the stress and physical pain that you have been going through.  I know, that one day very soon, you will be 100%.   I was wondering what your pathology report had stated (i.e. clear cell, papillary, mixture, benign, etc).   Also, why are all of these MD's confident that this type of cancer will not return?  What makes this cancer so different than the others?  Perhaps I should not question it, and be very hopeful!  Mom is going to have her surgery in a few weeks! Sincerely,TOMHi tom, i was 38 w/ my dx of kidney cancer, found accidentally, 2.5cm. clear cell, left kideny removed, no spread or follow up medications, had surgery sept 11,06, open procedure, i must admitt, it took me a good 6 weeks to recover, mine was stage 1, now i go every 6 months for check ups, all is good, even my one and only kidney, feel free to contact me w/ any questions, I am also from NEW YORK.. go Yankees!!! where is the dr and surgey beibg done??Sherry. P.S/ I am totally doing fine, i am working at a hosptial as a nurse, back on my feet....Sherry Cross my Heart Tue, 11 Mar 2008 00:00:00 GMT Sherry,  Hi, how are you?  Thanks for your response!   I was wondering if you had a CT scan immediately before your surgery (during your pre-operative time).   Also, what did your MD say about this RCC possibly recurring in a kidney or elsewhere (i.e. lungs, bones,etc).  Sincerely,TOM TOMMYNYC Tue, 11 Mar 2008 00:00:00 GMT Hi Tom, Hope I didn't scare you with all my "bad experience". I think it's better to be prepared by knowing what could happen, that way when your experience is easier, you'll feel lucky. Remember, open procedure is very different than a laproscopic. My dr said the lap procedure would have me back at work in 6 weeks, open procedure would be at least 8 weeks. So tell Mom to be patient!katskidney   katskidney Wed, 12 Mar 2008 00:00:00 GMT Hi, When is your Mom's surgery?How's it going?katskidney katskidney Mon, 24 Mar 2008 00:00:00 GMT Hi!  How are you?Mom is scheduled for the 1st week in April.   Did you experience any complications? TOM TOMMYNYC Mon, 24 Mar 2008 00:00:00 GMT Hi,My complications were pretty much what I wrote about. Kidney wouldn't "seal up" so I had Jackson Pratt drain for 6 weeks. Pretty rare to have it that long. Because it wasn't sealing, I had a stent put in (now at 5 weeks)  so that my kidney would continuously drain into the bladder and not get "backed up" into the kidney. That would cause more leaking out of the top of my kidney. Putting the stent in is usually a 15 minute procedure, because I'm the problem patient, I needed to stay overnight (because of nausea after sedation). Left the hospital with J-P drain and catheter and miserable. BUT.... no cancer and 2 working kidneys!! Catheter and JP drain removed after one week. Four days later- more leaking and terrible pain.  Back for CT scan which showed continued leaking, SO..... catheter back in and wait.....Thank goodness for good health insurance. Another week- ultrasound to monitor leakage. Then catheter out! I'm very nervous, because I've been here before.  I have a nurse that I consult with and she says dr doesn't want to do any surgical repair because the kidney is functioning so well. (Sort of on overtime!) I think this length of time is pretty rare especially considering what I've been reading on this site. I'm 8 weeks post-op and finally have all drains out. I was supposed to go back to work on Mar 31, but have been approved for extended leave. I can't imagine going back that soon (I'm a teacher) Still have soreness, numbness, and swelling. I'm not trying to scare anyone with these complications. I remind myself every day that I'M CANCER FREE!! And I have two working kidneys.I couldn't have done any of this without my husband (of course) and my mother-in-law has come by everyday to be with me when no one else was home (really important).Plan on being there a lot for your Mom. She'll need it!Feel free to ask questions. I feel like I know more about kidneys and bladders than I ever wanted to know.katskidney   katskidney Sat, 29 Mar 2008 00:00:00 GMT I was 17 when i had my first tumor removed off my lift kidney and addrinal gland. It was 10cm and they called it a taratoma or something like that. The surgery went pretty well and i did recover. I just cant remember how long it took. I had 50 staples going down the front of my stomach and it went from my belly button all the way to my chest. While i was getting all the ct scans done they did tell me they found a small cyst in my right kidney but they were just going to monitor it. Which i never did. I was 19 when i was diagnosed with cervical cancer, HPV and had it scraped and they did infact remove it all, i was very lucky they caught it early. But i was told not to expect children in my future.I was 20 when i got pregnant with my daughter, i was alittle scared because they said i couldnt. Everything was going well. I knew I had this "cyst" but was not interested in telling the doctors because i just wanted to have my daughter. And i did give birth to my beautiful daughter January 19, 08 @ 21 years old.After having my daughter i decided to go ahead and get this cyst looked at to make sure nothing was different. The results were not good. The MRI showed blood flowing to this cyst that became a hyperdense mass which has grown. They know its cancer, well pretty sure it is. because it was went from liquid to a mass and has blood flowing now. So they have decided because it is in the exact center of my right kidney to have an open procedure and like you removed half of it. But they are also going to take a rib?????? I am so scared about that part because you were talking about being in such pain for so long and you had kept your ribs. I am scheduled for surgery April 16,2008 and my doctor isent giving me all the information im looking for. I guess i feel like if i start asking questions i will begin to loose confidense. Thats how I stay so calm. So now im getting kinda freaked out and i would like some help. I want the truth. I need to know how painful this is and how long is till take me to recover. and what is that Jackson Pratt you were talking about and will i have it. How does that work, what will the incision look like and will there be staples again? What medication did they have you on and how much did you end up paying with your insurance. I have Optima threw my work. They pay for the surgery but i pay co-pays and crap. Please get back to me. Thank you so much.  Also does anyone know why this is happening to a young fit female. I have worked construction for the past few years and have installed ductwork for an HVAC company for the past year. I am very fit, and just dont understand why me? I dont drink nor have i ever had a smoke. I look great! my pharmocy doesnt understand why i come in so much with all these perscriptions when im so young. And also, what were your pains. I have had side pain and back pain along with abdominal pain for the past few years. Im hoping this is and was the problem ive been having because i can not go threw another surgery. My daughter is only a few months old and we are a young couple. Im worried we will not have enough money to get by while im out thats why i need to know when i can return. I was shooting for a week, or two. Im sure you will agree, its not going to happen. huh?  mdrowley Tue, 08 Apr 2008 00:00:00 GMT