CancerCompass message board discussion started by LuvMyDad07 on 1/3/2008 http://www.cancercompass.com/message-board/message/all,19328,0.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/ We had our second appt with the doc. last night after recieving the biopsy results.  He has indicated that removal of the kidney is not really necessary as the tumor is only 3.5cm, my dad has no symptoms, and he only has 1 met.  He has indicated that there is no research that suggests BETTER results if we remove the primary site, as if the new drugs work, they will stop growth of all the RCC cells, including the ones in the kidney..  He said removal of the kidney was the 1st course of treatment in the days where Nexavar, Sudent etc were not FDA approved and have shown to work.  I understand this and partially agree, but my concern is, what if the drugs do NOT work the first time around.. wouldnt this give the kidney the opportunity to spit out more cancer cells ?? I think we would rather take 1 site out first, since my dad is in great health right now, and worry about 1 less site... then go on the drugs soon after to stop the growth of the cancer anwhere else.. I do not like the "lets wait and see " thought process.    We are seeing a Orthopedic Onchologist very soon to see if he recomends touching the met on his iliac bone.. and will decide from there I suppose.   But if this doc says he'd rather not touch it as my dad may have a tough recovery afterward, then I think we take the kidney out... or oart of it, and start on the Meds...  Im so frustrated that its been almost 4 weeks and we still dont have a plan of attack that will be executed soon. Your opinions would be TRULY appreciated.. God BlessLaura, NY  LuvMyDad07 Thu, 03 Jan 2008 00:00:00 GMT I can only relate my own experience. I had 10% of one kidney removed as there was a tiny malignant tumor attached to it. The surgeon assured me the margins were clean etc, he had gotten it all, go home & forget about it, it's over.In hind sight the cancer had already gotten into the blood stream and spread to several other sites. It took two years for the new tumors to get big enough, to be found. Because of the multiple known sites and the possibility of more, surgery is not reasonable.Now I am on Nexavar, and stable for the past 6 months, in that they are not growing at this time. My opinion, once there is a chance the cancer has gotten into the bloodstream, medication is the only way to go.Bill Wilhelm Thu, 03 Jan 2008 00:00:00 GMT Hello and thank you... Im glad to hear the drugs are working for you.. When was your surgery done? When it was done were you given a grade for the cancer cells in the kidney..? Thanks in advance for your reply and information.. God Bless Laura, NY LuvMyDad07 Thu, 03 Jan 2008 00:00:00 GMT  On 1/3/2008 LuvMyDad07 wrote:We had our second appt with the doc. last night after recieving the biopsy results.  He has indicated that removal of the kidney is not really necessary as the tumor is only 3.5cm, my dad has no symptoms, and he only has 1 met.  He has indicated that there is no research that suggests BETTER results if we remove the primary site, as if the new drugs work, they will stop growth of all the RCC cells, including the ones in the kidney..  He said removal of the kidney was the 1st course of treatment in the days where Nexavar, Sudent etc were not FDA approved and have shown to work.  I understand this and partially agree, but my concern is, what if the drugs do NOT work the first time around.. wouldnt this give the kidney the opportunity to spit out more cancer cells ?? I think we would rather take 1 site out first, since my dad is in great health right now, and worry about 1 less site... then go on the drugs soon after to stop the growth of the cancer anwhere else.. I do not like the "lets wait and see " thought process.    We are seeing a Orthopedic Onchologist very soon to see if he recomends touching the met on his iliac bone.. and will decide from there I suppose.   But if this doc says he'd rather not touch it as my dad may have a tough recovery afterward, then I think we take the kidney out... or oart of it, and start on the Meds...  Im so frustrated that its been almost 4 weeks and we still dont have a plan of attack that will be executed soon. Your opinions would be TRULY appreciated.. God BlessLaura, NY Laura,  Your Dad should be treated by a doctor with experience in treating metastatic RCC.  He can find on near him by calling the Kidney Cancer Association at 800-850-9132 or joining the KIDNEY-ONC emailing list (see http://cancerguide.org/kofaq/  ) and asking the listmembers.The best treatment for RCC with limited metastases is surgery, removal of both the primary and the mets.  If all mets cannot be removed, the treatment that has the best chance of providing a lasting remission is surgery to remove the primary, followed by cytokine (IL-2, difficult therapy to undergo, only works in about 10% of cases) treatment.  Targeted therapy such as Sutent and Nexavar is too new for lasting remissions to have been studied in comparison to surgery plus cytokines.  Research exists that shows a survival advantage of surgery to remove the primary before cytokine therapy, and studies need to be done to study surgery before and/or after targeted therapy.  Some researchers feel that targeted therapy followed by surgery to remove the primary and/or mets may be a good treatment, but the studies that would prove that have not yet been done.  Unless your Dad has other medical problems that would preclude surgery, it seems that surgery should be considered as a treatment, both for the primary, and his spinal met.You can search published research for RCC treatment on the internet on Pubmed http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed&itool Trishpm Thu, 03 Jan 2008 00:00:00 GMT Surgery was August of 2005, and I don't remember the grade, but I sure do remember this past May when I found it was back and was asking the Oncologist questions. He said it was Metastatic Papillary Renal Cell Carcinoma, stage four, type 1, and that didn't sound too bad til I asked how many stages are there?  I was pretty sure there were ten or so, the answer floored me. Wilhelm Thu, 03 Jan 2008 00:00:00 GMT  On 1/3/2008 Wilhelm wrote:Surgery was August of 2005, and I don't remember the grade, but I sure do remember this past May when I found it was back and was asking the Oncologist questions. He said it was Metastatic Papillary Renal Cell Carcinoma, stage four, type 1, and that didn't sound too bad til I asked how many stages are there?  I was pretty sure there were ten or so, the answer floored me.If you have papillary RCC, which is one of the rarer types, be sure you are being treated by a doctor who has experience not only in treating metastatic RCC, but rarer subtypes.  Trishpm Fri, 04 Jan 2008 00:00:00 GMT  On 1/3/2008 LuvMyDad07 wrote:We had our second appt with the doc. last night after recieving the biopsy results.  He has indicated that removal of the kidney is not really necessary as the tumor is only 3.5cm, my dad has no symptoms, and he only has 1 met.  He has indicated that there is no research that suggests BETTER results if we remove the primary site, as if the new drugs work, they will stop growth of all the RCC cells, including the ones in the kidney..  He said removal of the kidney was the 1st course of treatment in the days where Nexavar, Sudent etc were not FDA approved and have shown to work.  I understand this and partially agree, but my concern is, what if the drugs do NOT work the first time around.. wouldnt this give the kidney the opportunity to spit out more cancer cells ?? I think we would rather take 1 site out first, since my dad is in great health right now, and worry about 1 less site... then go on the drugs soon after to stop the growth of the cancer anwhere else.. I do not like the "lets wait and see " thought process.    We are seeing a Orthopedic Onchologist very soon to see if he recomends touching the met on his iliac bone.. and will decide from there I suppose.   But if this doc says he'd rather not touch it as my dad may have a tough recovery afterward, then I think we take the kidney out... or oart of it, and start on the Meds...  Im so frustrated that its been almost 4 weeks and we still dont have a plan of attack that will be executed soon. Your opinions would be TRULY appreciated.. God BlessLaura, NY So sorry to hear about your Dad. Since the tumor is small and he has just one metastasis, it appears they have caught it early, which is good.I was diagnosed with rcc july 2nd, 07 and still have not had my kidney  removed. I have 3 tumors in L kidney,each one larger than your dad's, that have not advanced in size since I've been on Nexavar. I'm going to M.D. Anderson in Houston and it's rated the #1 Center of Excellence for Cancer treatment in the States. People come here from all over the world!!. I have full faith in my Oncologist & he wants me to be on the Nexavar at least a year before they consider taking out the kidney. His reasoning is that the tumor will, hopefully, shrink and will be "less angry" and likely to spread when they do remove it.  I've read all I can about the new drugs for rcc and I believe what he say's. He said before these drugs, the kidney was always removed and then there would always be a metastasis somewhere else. I also have a metastasis to the brain and two sml ones to L lung. The brain tumor was treated with Stereotactic Radio Surgery in Aug &, initially it shrunk by 1/3. Last 2 CT's showed enlargement so I'm being treated with steroids for 3 weeks to see if its actual tumor growth or inflammation. If it is smaller, they'll know its swelling or inflammation. If not, they plan to remove it. The 2 lung tumors have stayed the same.Since your dad's metastasis is to the bone, they will probably treat with the radiation. From everything I've read and all I heard from my doctors, I think your oncologist is correct in not taking out the kidney now. Your Dad could be taking the Sutent or Nexavar while having the iliac treated. I'm thankful for the new drugs approved by the FDA in the last three years...drugs we didn't have in the past to fight this type of cancer. And, remember, they are working on new drugs as I write this.My thoughts and prayers are with your Dad & all of your family.He's also fortunate to have such a loving daughter. I'm also blessed in this way, Barbara Texas   Barbalan Mon, 28 Jan 2008 00:00:00 GMT