Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by TOMMYNYC on Fri Mar 07, 2008 12:00 AM
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!
by pooh2323 on Sun Mar 09, 2008 12:00 AM
by katskidney on Tue Mar 11, 2008 12:00 AM
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.
by TOMMYNYC on Tue Mar 11, 2008 12:00 AM
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!
by Cross_my_Heart on Tue Mar 11, 2008 12:00 AM
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,TOM
Hi 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
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).
by katskidney on Wed Mar 12, 2008 12:00 AM
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!
by katskidney on Mon Mar 24, 2008 12:00 AM
Hi, When is your Mom's surgery?
How's it going?
by TOMMYNYC on Mon Mar 24, 2008 12:00 AM
Hi! How are you?
Mom is scheduled for the 1st week in April. Did you experience any complications?
by katskidney on Sat Mar 29, 2008 12:00 AM
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.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.