CancerCompass message board discussion started by Tagml on 4/3/2008 http://www.cancercompass.com/message-board/message/all,22656,0.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/ After reading this board and the kca.org board for more than a year, I have come to the conclusion that there is a TON of misinformation out there. A lot of it comes from doctors which aggravates me. Some of it from people who are new to the disease and haven't been educated yet. I want to share a couple of learnings we've had to hopefully help others earlier in the process: 1. If you are diagnosed with kidney cancer, demand a full body scan including bones before you have surgery and get a full diagnosis of what is going on and where the cancer can be seen. you should know if it is already in other areas so you set your expectations correctly for post surgery treatment.2. Understand that if you have stage 3 or 4 it usually means cancer has been detected in other than just the kidney and is likely to have moved to other areas even if you don't see it.  So watch and wait advice from your local doctor is probably a signal to get another opinion and that of a kidney cancer specialist.  Go to the kca.org site and read the definitiions of each stage-scary but necessary for successfully battling this disease.3. The lymph node system works like the blood stream in that they are all interconnected and a node with cancer in one place is signaling there are likely rogue cancer cells in the lymphatic system in other places but they maybe just haven't decided  (by whatever twisted logic these cells do this) to mulitply and form a visible tumor.  4. The phrase "Got it all" needs to be clarified-while the surgeon may have gotten the visible signs of kidney cancer at the origin-the kidney itself-that statement by no means proves that you are cancer free. Follow up scans and even the consideration of proactive treatment with sutent or another drug is not a bad idea.  It is very expensive so some doctors or insurance carriers may balk but too bad-you don't want to be trying to catch up with kidney cancer if you don't have to....5. The first two months are the WORST! The surgery, the treatment, the side effects are horrible and it feels like a nightmare that will end in death at any moment. But in the vast majority of cases it gets better after the first two months.  Sutent and other drug side effects can be awful but hang in there because it will get better. Reduce the dose but don't quit. And there is no side that can't be treated with something so don't take no for an answer, get help if you are suffering and that includes depression for the patient and caregiver alike.6. Doctors who give expectancy months should be run away from. With one of the best doctors in the world who specializes in kidney cancer, our guy insists the goal is living with cancer not dying from it and refuses to look at it any other way-we agree.I am not a doctor-don't even play one on tv. But our doctor told us most of what I have said above and we are grateful. My husband is a Stage IV Level IV RCC with sarcomatoid features (very aggressive) who had a rad neph 14 months ago, has mets in the chest and peritoneum, and has been on treatment ever since. He and we are living with cancer and while we'd rather not, it's a heck of a lot better than dying from it....hope this helps. tagml  Tagml Thu, 03 Apr 2008 00:00:00 GMT this is an excellant summary to new to RCC. I only wish I had looked here in Dec 04. It would have saved a lot of pain etc. We started with a part removal and now dealing with stage 4 but dealing with it not dead. get great support here. Thanks to all AliveNwell Fri, 04 Apr 2008 00:00:00 GMT  On 4/3/2008 Tagml wrote:After reading this board and the kca.org board for more than a year, I have come to the conclusion that there is a TON of misinformation out there. A lot of it comes from doctors which aggravates me. Some of it from people who are new to the disease and haven't been educated yet. I want to share a couple of learnings we've had to hopefully help others earlier in the process: 1. If you are diagnosed with kidney cancer, demand a full body scan including bones before you have surgery and get a full diagnosis of what is going on and where the cancer can be seen. you should know if it is already in other areas so you set your expectations correctly for post surgery treatment.2. Understand that if you have stage 3 or 4 it usually means cancer has been detected in other than just the kidney and is likely to have moved to other areas even if you don't see it.  So watch and wait advice from your local doctor is probably a signal to get another opinion and that of a kidney cancer specialist.  Go to the kca.org site and read the definitiions of each stage-scary but necessary for successfully battling this disease.3. The lymph node system works like the blood stream in that they are all interconnected and a node with cancer in one place is signaling there are likely rogue cancer cells in the lymphatic system in other places but they maybe just haven't decided  (by whatever twisted logic these cells do this) to mulitply and form a visible tumor.  4. The phrase "Got it all" needs to be clarified-while the surgeon may have gotten the visible signs of kidney cancer at the origin-the kidney itself-that statement by no means proves that you are cancer free. Follow up scans and even the consideration of proactive treatment with sutent or another drug is not a bad idea.  It is very expensive so some doctors or insurance carriers may balk but too bad-you don't want to be trying to catch up with kidney cancer if you don't have to....5. The first two months are the WORST! The surgery, the treatment, the side effects are horrible and it feels like a nightmare that will end in death at any moment. But in the vast majority of cases it gets better after the first two months.  Sutent and other drug side effects can be awful but hang in there because it will get better. Reduce the dose but don't quit. And there is no side that can't be treated with something so don't take no for an answer, get help if you are suffering and that includes depression for the patient and caregiver alike.6. Doctors who give expectancy months should be run away from. With one of the best doctors in the world who specializes in kidney cancer, our guy insists the goal is living with cancer not dying from it and refuses to look at it any other way-we agree.I am not a doctor-don't even play one on tv. But our doctor told us most of what I have said above and we are grateful. My husband is a Stage IV Level IV RCC with sarcomatoid features (very aggressive) who had a rad neph 14 months ago, has mets in the chest and peritoneum, and has been on treatment ever since. He and we are living with cancer and while we'd rather not, it's a heck of a lot better than dying from it....hope this helps. tagml  Hi there, I was wondering where your family member went for the surgery?? Thanks. agfordad Wed, 09 Apr 2008 00:00:00 GMT