CancerCompass message board discussion started by Curiousme on 12/2/2006 http://www.cancercompass.com/message-board/message/all,8088,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My boyfriend had his left kidney removed due to discovery of RCC. The tumor was in the center of his kidney and near an artery and so a partial wasnt an option. He had his kidney removed in Sept of this year, 2006. He was not prescribed anything, at all. Im wondering if this is normal. I read these forums and find names for medications prescribed and am shocked that no mention of continued treatment was given by his doctor. He was told to come back in within 5 months and have bloodwork and another CT scan performed. Thats it. Is that normal? He is 36, non smoker, or rather he quit when he met me over 12 years ago. We discovered the RCC when he wasnt able to have a bowel movement for 3 days in a row, and he is someone who has a bowel movement on a daily basis, so we new that wasnt normal for him. Since the nephrectomy, he has had an odd sensation that he describes ALMOST like the tingling before orgasm when he is about to urinate, instead of the normal feeling of the need to urinate that he had pre surgery. He likens it to having to retrain himself to the sensation of 'knowing' when he has to urinate now. He also, is more tired than usual. Even after getting say, 9 hours of sleep he still feels the need to get 2 or 3 more hours in the early evening sometimes. I dont know if any of that seems normal to anyone else. We also have his pre surgery CT and MRI scans to possibly post if anyone thinks that they as a Doctor or Surgeon would be able to give an opinion of what they see that perhaps his own doctor didnt notice or more to the point, his remaining kidney seems to also have a mass in it, could that be a tumor also? His doctor seems to think not, but as I said, he didnt prescribe any medications for him and I know the look on some nurses faces when I mentioned that didnt seem normal to them. Is it possible for an experienced professional to view his CT and MRIs online for their opinions? Curiousme Sat, 02 Dec 2006 00:00:00 GMT Hi Just got done reading your message, I my self had my kidney removed this septemeber , they found it accidentally like your boyfriend and I too am young will be 40 next Sunday.I guess you can say that we are both right on the same track w/ timing of when it was discovered, Did he have the surgery Laproscopic, or was it an wide open procedure? Mine was open procedure. I tell you it took me (Ihad my surgery on 9/11 of this year),, 2 good months to feel better, from the inscicion and thety took one rib. I am now back at the gym etc... and no medication to take, t was 2.5cm w/ no lympnodes involement or no metasis, but it was a grade 3 @ the tme of pathology report and Stage 1a, I have to go back n Dec 20th for my first check up. Now gettting back to your boyfriend situation. you said the dr doesnt THINK it anything the mass on the other kidney. Personally I wouldn't feel comfortable with that answer. and waiting 5 months for your 1st follow uo seems too long. Please be more aggresive with this, especilally from what you wrote, You shold have hid blood work check you sad he's getting all this sleep and still tired, I would have his red blood cells checked. Because I am at the same ponit as him . I am no Dr. but i am starting nursing school and i have a lot of people who are in the medical feild. I am curious about his pathology report. But please, go forward with this. hope to hear back from you. Good luck Sherry Cross my Heart Sun, 03 Dec 2006 00:00:00 GMT Hi -I just read your message, and I had my right kidney removed in June of this year.  I was 49 at the time, the tumor was malignant and completely encapsulated within the kidney.  I also have had no futher medication.  However, my urologist also said to come back in 4 months for labs, etc., but I was not comfortable with that and my GP suggested following up with the oncologist (I see him for iron-deficient anemia).  I did, and I have labs every few weeks and ct scans every 2-3 months for a while, then I will go to 6 months for the next couple of years, then yearly.  I too, like Sherry, would strongly advise you to seek another treatment opinion, just to be on the safe side!   Why take the chances?  As far as your boyfriends fatigue, after 6 months post surgery, I still get wiped out after a day's work (although I am older), but the Doctors tell me that it is normal and will pass in time.Best of luck to your boyfriend, and bless you for taking good care of him.  Ddkshire Sun, 10 Dec 2006 00:00:00 GMT Hi : Happy to hear you are gaining energy. I am scheduled to have partical nephrectomy on jan 23rd. had lap surgery on Oct 11th but later found out they had only removed a cyst not the tumor in kidney. this was quite a shock but now i am scheduled for the open surgery. My question is how long before you regained strength and energy again?Am hoping to be abale to travel to Africa after a couple of months. is this realistic it is a 17 hr flight. Thanks for any info you can give me. Skip   Blantyre Tue, 02 Jan 2007 00:00:00 GMT  On 12/2/2006 Curiousme wrote:My boyfriend had his left kidney removed due to discovery of RCC. The tumor was in the center of his kidney and near an artery and so a partial wasnt an option. He had his kidney removed in Sept of this year, 2006. He was not prescribed anything, at all. Im wondering if this is normal. I read these forums and find names for medications prescribed and am shocked that no mention of continued treatment was given by his doctor. He was told to come back in within 5 months and have bloodwork and another CT scan performed. Thats it. Is that normal? He is 36, non smoker, or rather he quit when he met me over 12 years ago. We discovered the RCC when he wasnt able to have a bowel movement for 3 days in a row, and he is someone who has a bowel movement on a daily basis, so we new that wasnt normal for him. Since the nephrectomy, he has had an odd sensation that he describes ALMOST like the tingling before orgasm when he is about to urinate, instead of the normal feeling of the need to urinate that he had pre surgery. He likens it to having to retrain himself to the sensation of 'knowing' when he has to urinate now. He also, is more tired than usual. Even after getting say, 9 hours of sleep he still feels the need to get 2 or 3 more hours in the early evening sometimes. I dont know if any of that seems normal to anyone else. We also have his pre surgery CT and MRI scans to possibly post if anyone thinks that they as a Doctor or Surgeon would be able to give an opinion of what they see that perhaps his own doctor didnt notice or more to the point, his remaining kidney seems to also have a mass in it, could that be a tumor also? His doctor seems to think not, but as I said, he didnt prescribe any medications for him and I know the look on some nurses faces when I mentioned that didnt seem normal to them. Is it possible for an experienced professional to view his CT and MRIs online for their opinions?i would not wait 5 months to be tested i would go every three months. and i would start eating healthy and start juicing. good luckPaul Pauliemf Sun, 28 Jan 2007 00:00:00 GMT