For all those interested I wanted to update how everything went for me recently with the removal of my left kidney due to a tumor.
Background: I had a renal ultrasound performed initially to look for blockages that could be causing my hypertension. During the ultrasound a mass was visualized and a CT scan was ordered. The CT scan very clearly showed a tumorous mass in my left kidney, high up in the collecting duct area. It was suspicious for a malignancy and I was thus advised that it needed to be removed. The tumor was considered a solid, cystic tumor at a stage 1 level (this means it was encapsulated inside the kidney), a chest x-ray confirmed that it had not spread anywhere else. I sought out a second opinion. That doctor requested an MRI scan, he confirmed the finding that the tumor was not a candidate for a partial nephrectomy and that it should be entirely removed.
The 21st of December 2010, I had a complete nephrectomy performed, I was released to go home on the 23rd and have been recovering at home since. It's now almost a full week post op and I am doing quite well. I eat a normal diet, can walk and get out (though I do not drive yet or lift anything), and everything is going well. The pathology on my tumor showed that it was a clear cell renal carcinoma (stage 1), that it was indeed entirely contained in the kidney with no escapees in my lymph nodes or anywhere else.
I want to comment about a few things I learned that helped me through the surgery. One: I was very lucky that the tumor was found at a stage 1 (the earliest possible stage), two: I sought out second and third opinions (this helped me feel as if I had a consensus and was proceeding forward in what is a very scary process (I had never been hospitalized for anything in 44 years), three: I found the use of guided imagery audio tracks to be extremely helpful in relaxing my body and mind as I prepared for the surgery the night before. The one I downloaded was from Diane Ulicsni, her soothing words and guided imagery really helped me relax and focus on keeping my body calm. This directly contributed to the fact that I bled very little during the surgery. The surgery was performed laparascopically (which means they do not cut you open on the side, instead they insert probe devices into an inflated stomach and use various tools while watching a video screen). My comment regarding laparascopic surgery is that it is the way to go BUT I have experienced some fairly moderate to severe shoulder pains from the gas they use. I know it is supposed to go way in a few days, and it has in large measure, I just want to say they do not emphasize how much your shoulders will kill you when you lean back against something (I had to sleep in a recliner for days, heavy on the Vicadin). What would have helped me would have been a good chair in the hospital to sit in with a straight back, one not too low to the floor, or a good bed. My nurses and doctors were very good (no complaints there at all).
A week post op the pain I have is mostly front abdominal (where much of the manipulation was done and the removal of the kidney through a 3 inch scar next to my belly button), and flank pain (where my kidney used to be). I noticed a significant difference on day 6 in my mental acuity (my mind feels closer to normal now, not so fuzzy). I am down to taking Motrin during the day for pain and Vicadin at night. I find that my mind is all ready to "get on with life," but my body is still working on healing itself and repairing the trauma.
The whole thing was amazingly scary just a week ago, but because I cared to prepare myself through research and seeking out relaxation techniques, I came through it just fine. I now have a clean bill of health and know that I am very lucky. For all those just finding they have kidney cancer, or a tumor that is suspicious, I would suggest that they do their research (understanding what I had cognitively, including watching videos of the laparascopic procedure on the internet and elsewhere really helped), seek out a second or third opinion, and then prepare yourself for what has to be done. Once it is over you will be relieved of that burden and that condition (if it is stage 1 or 2). I also cannot emphasize how important it is to have purpose in life, things to look forward to, those people survive the surgeries and recover the best. Even though I was going to have to have something done to my body that I never in my wildest dreams imagined I would (I'm a lifelong non-smoker and non-drinker), I know others go through much worse. At some point one has to trust the medical staff and let them do what they have trained so many years to do. I think my approach was the best for me, you put together what will work best for you, but at least be as informed and astute as you can so you have a sense of control.
The tumor measured 4.7 x 3.5 x 3.3cm. It was a solid, cystic mass that turned out to be clear cell renal carcinoma. Clear cell is the most common type and the slowest growing (mine was a 2 on the Fuhrman scale). I could have had the thing for 4-5 years without ever knowing it, and if it had not been for the gentle insistence of my cardiologist that I have some testing done (related to root causes of hypertension) I would have, most likely, not found out until much later when it would have been far less treatable with really poor odds.
I know doctors do not regularly advocate for scans as an overall screening tool, but they are finding more and more tumors at earlier stages because of unrelated scans. Perhaps this is indicating to us that CT (and other) scans should be used more to proactively find possible issues. If I had known I even had a chance of this I would certainly asked for testing years ago. The only risk factor I had was a grandmother who lost a kidney for a similar issue (though I do not believe my tumor was genetic). Also, because I lived 44 years fairly "clean" I had no reason to even think that kidney cancer would ever be a possibility for me. I am amazingly thankful that several factors lined up the way they did for me, quite possibly they will allow me to live out the rest of my natural lifespan with no further issues. That is a gift no matter how you view it
I fully agree with your viewpoint to inform other people about the Kidney Cancer and the treatment of surgery. More and more people don't even know of the hidden danger of Kidney Cancer unless they go through the CT Scan. I had the CT Scan done in May 2004 because my Dermatologist didn't know the reason why a minor skin on my nose couldn't be cured with injections and ointments. Then she refered me to an Oncologist who ordered me for a CT Scan. At that time, the tumor was at the size of 4.5 x 3.5 x 3.5cm. I then had a MRI Scan to confirm that. I waited three and a half years. The overall size increased by one cm in that period. I was thinking that it was ok with that size increase. Two years later, I had another CT Scan and the size at that time was two more cm increased. I had no choice but to decide for surgery at 7.0 x 7.0 x 4.0cm. Luckly, I was in time to catch the boat. Mine was clean cell stage I and Fuhrman Grade 2. The cancer was contained in the Kidney and no spread was seen. No chemo was needed. By the way, do you have the follow up CT Scan in every six months for five years? I will have the first CT Scan in the coming Spring just in case.
You were amazingly lucky William! Beyond stage 2 I understand the outcomes are just not good. From the beginning I had several doctors really encouraging me to move quickly on my tumor. The only lag time I allowed was the time it took to get an actual surgery appointment (one month), in that time, I sought out a second and third opinion.
My doctor said that I would need a follow up checkup every three months for two years plus a CT scan at 18 months, and every 18 months for two years. After that I think it is pretty standard to not check so intensively, however, I will insist on at least 6 month checkups for the rest of my life (just because I'm neurotic now and want to be treated for anything new as soon as possible.
I absolutely believe now that that CT scan saved my life. I would encourage anyone over 40 to at least have some testing done, you just never know. I am the last, and least likely person, you would ever imagine that would have kidney cancer, if I could get it ANYONE can.
It is true that I was amasingly lucky instead of several years delay of surgery. In fact, the tumor was very thin encapped by the Kidney. It could be few more months of waiting before the cancer killed me.
My surgery appointment was also one month time. My primary doctor & dermatologist
always recommended me to remove the kidney with the tumor. My thinking was the
tumor might be benign and it would stay there without increasing size. But, it was
18 months of CT Scan could be a bit long. Regular check up would not show any new tumor. Specially, the lung, brain and bones as those areas are famous places for the Kidney Cancer. Only CT Scan will detect it. I hope that the Clean Cell would not escape anyway before the surgery!
Thanks for you update, given me some info and focus.
Had inflammed gall bladder early dec so had routine ultrasound to check for stones. Found there were plenty of stones and refered to have it out and at same time sent for ct scan " to get a clear picture".
Had the CT on 23rd Dec and was Hospital called me in on 30th to explain ultrasound found new blood vessels on a kidney by chance and CT confirmed a 5cm mass.
Know I will be in and out by end of Jan but more worried about the CT on my chest.
Bonus is I will get a 2 for 1 special Gall Bladder and Kidney removal.
Trying to stay upbeat but that one word just screws with the mind . . .
Make sure you follow up as recommended. In 2008, My father had a large tumor, 'low grade' and was told the cancer was NOT in him lymphnodes or anything. They removed his entire left kidney. He had 1 scan done 6 months afterwards and everything was OK. No more scans.. His blood work taken routinely by his PCP was sent to an oncologist to test the levels. The PCP suggested he should follow up w/ the Urologist again, he did and everything has changed since then...
Long story short. My father now has mets renal cell carcinoma to both lungs and left femur bone. He has the right lung cleared of the cancer last month.. next step is the femur bone and then the left lung. He has A LONG ROAD ahead of him right now. The cancer is 'localized' which is good, but it all needs to be take care of ASAP before it does spread, if it attacks another area, they will refuse to do any surgery.
Within 2 years, this happened. Blood work is NOT good enough, it does not detect tumors. So please, make sure you do get your scans done as often as possible. Best of luck!! xo