Not Sure What 2 Do Next?????

Hi my name is lou, my husband has rcc it has went to his lung now to his brain. Just got done with radiation treatments. Q. In 2 weeks he will have a mri done to see if the tumor has got smaller if it has do we have some kind of surgery???? Or some kind of treatment like sutent??? But now what do we do about the smaller ones that the surgeon won't touch??????? I stop in to the dr's office every day to get these answers but the resep. Keeps telling me she'll leave the message with the dr. Thanks lou

My friend, maybe it's time to seek a second opinion. Usually a second opinion is needed to confirm a condition. However, if a doctor in not being "pro-active" then it's time to change doctors.

Lou, Kewlsense gave you some good advice. I am a RRC participant for now 2 years. I've left many postings on this website under both Kidney and Renal outlining my experiences and successes. Given those experiences I have some additonal suggestions: 1) find an oncologist who specializes in RCC. We have discovered through our journey that not all cancers are the same and not all oncologists are fimiliar with RCC---it makes a big difference. For example, (please keep in mind that I am not a doctor) we have been told by many doctors and read many articles that state--RCC does not respond to chemo or radiation. 2) not to scare you but RCC is a fairly agressive form of cancer and time is not your friend. Again, Kewlsense gave you some good advice. Try to find a proactive rather than reactive oncologist. The first oncologist that we met with knew less about RCC than we did and we quickly decided not to waste our time. My expectation was to find a doctor who would treat my cancer as if he/she had it themselves. We luckliy found such a oncologist at the University of Minnesota Hospital in Minneapolis. I'm sure that there are other fine faciliites available. My experience and success has been with the drug Sutent (made by Pfizer). I understand that there is another drug approved for RCC called Nexavar (made by Bayer). There are multiple postings on this message board for both drugs but please feel free to contact me if you have questions regarding Sutent. In response to your question "smaller ones that the surgeon won't touch"---the new drugs, such as Sutent and Nexavar have had excellent results with smaller tumors. Please keep a positive outlook and stay in touch.

Received a phone call from the dr's office today my husband has an appt. On the 19th for a mri. Then we go to another dr. On the 24th to view the cd. We really dont have a problem with our oncologist its the lady at the front desk that seems to have a problem getting the messages to the dr in a timely manor.
Q...if on the mri shows that the larger tumor did not shrink what do you think we should do next as far as a treatment (sterotatic, gama ???)
Q...if the mri shows shrinkage do you think the next step should be surgery?
Thanks lou

Good morning Lou. I'm glad to hear that your doctor got back to you and your husband. I'll give you my opinion on your two questions but please remember---I am not a doctor---but simply basing my answers on my experience and questions that we have asked. I would strongly recommend that you ask your doctor these same questions. Q#1: I'm sure that I don't know all of your husband's medical history but if it were me I would try the most proative/aggressive treatment available. As I said before, we have been told that RCC is normally a very aggressive form of cancer. I'm not familar with sterotatic but gama sounds like radiation. Radiation is not an effective treatment for RCC. Q#2: I beleive that surgery has always been the most favored treatment for RRC in the past. However, things have changed dramatically in the past 2-3 years. First, is surgery to that part of the body (brain) too risky? I don't know and I don't know your husband's situation well enough to give an opinion--yes or no. There have been new drugs developed; tested and approved by the FDA. They are Sutent and Nexavar. My experience has been with Sutent and I am a walking example--it does work. Now that I have answered both questions I would like to take this converstion in a slightly different direction. Normally, I try to be very postive on this message board and I never "lecture". I'm going to take a chance in your situation because I feel so strongly that I was given a second chance to help others. If I offend you please keep in mind that I am only trying to help you and your husband. Here goes---I'm basing some of my comments off your wording in your posting. I realize that a person can get bombardied with a lot of new information and terms under these conditions but I'm going to respond to your wording. First, you mentioned no problem with your doctor but only with the lady at the front desk. I'm sorry but this is a package deal. If you cannot get through to your doctor on a timiely basis it really doesn't matter what the reason. I would discuss this with your doctor if you have not already. Your husband deserves their undivided attention. Second, you've mentioned radiation multiple times. Again, I apologize but that concerns me greatly. Unfortunately, I'm probably now challenging your doctor's knowledge of RCC. We have been told many many times that radiation and chemo are NOT effective treatments for RCC. Third, an MRI on the 19th. My non-medical understanding of an MRI is that this scan will show a dark spot or mass. Throughout my whole journey I think I only had one MRI---at the very beginning which is how they discovered the mass on my kidney and diagnosed me with RCC. Since then, I have had numerous CT scans and numerous PET scans. If you read the many postings on this message board everyone refers to a CT scan, not an MRI. My doctor actually prefers a PET scan over a CT scan. They are similar tests but we understand that while the CT scan works well on large tumors the PET scan works better on small tumors PLUS the PET scan shows metabolic activity (meaning whether the tumor is alive or not). Back to the MRI---again this worries me. If I were the patient I would view this approach as not aggressive enough and I strongly feel that time is not your friend. Future treatment? I'm a BIG fan of the new drugs Nexavar and Sutent. While they may not be a fit for everyone they have had amazing results---just read some of the postings on this message board. I was treated with Sutent and can speak to it's fantastic results. Please make sure that your husband has a knowledgable doctor and again I apologize about the "lecture" but I feel so passionate about this disease. Hope to hear from you again.

good morning to you to greg,i'm sorry, i'm just so confused right now. my husband told me yesterday that he had a bloody stool. i cried all day at work. i thought when we fisrt found out that my husband had to have his kidney removed, i thought maybe we had caught this disease on time. but i guessed wrong. we both thought that surgery would be our best chance at life.but it seems when we want to hear some good news it never comes.my husband goes to see a neo.surgeon tommorrow, again maybe for more surgery, i don't think he can handle another surgery. i can't get him to eat hardly anything he says things just don't taste good, whats up with that????????? thats been going on for quit a while now?? i viewed the cd's that we're suppose to take to the dr tommorrow and read his report. it sounds like the bigger mass has gone down but now the smaller one (8mm) is now 16mm.i'm not really sure where these are located at yet we're hoping this dr will go over the cd's with us. we're still waiting for the insurance co. to ok the drug sutent but we haven't heard anything back yet.q...if this has reached his colon/ bowel area will this drug sutent or nexavar help him more than surgery???
thanks again for your help, lou

Lou, take a deep breath and understand----you and your husband have had a lot thrown at you recently. You will get through this. I've often said that I think my journey was tougher on my wife than it was on me. As the patient I knew how I felt but as the spouse she just got to worry and worry. I think this is normal but not fair. I also wanted to apologize for being so frank in my last posting. I've felt bad ever since I hit the send button. Let's start this time with some more questions. Are you working with a renal cell cancer specialist? Not just a doctor or surgeon but an oncologist who specializes in RCC? You mentioned "surgery before"; "more surgery" and "another surgery". What types of surgeries has your husband already had? I read that he had radiation treatments, correct? Is he taking any type of treatment right now? On the comment "we're still waiting for the insurance company to OK the drug Sutent". My advice there would be to call them, and then call them, and then call them. Be polite but be persistent. Don't take---we'll get back to you----as an answer. Renal cell cancer is very aggressive and you should not have to wait for an answer. I will give you my opinion on whether or not Sutent can work if the cancer has spread. Please remember, I'm not a doctor but a patient. Sutent did work for me (and has for many others that I talk to or read about) even after the cancer has appeared somewhere other than the kidney. I don't know so much about Nexavar but I've read about some good results as well. As a Sutent success story, I call it my wonderdrug.

hey greg don't worry about your last posting to me. i like when someone can just come out and say what they mean and answer my questions straight up!!so don't apologize i'm fine with your answers.this all started with my husband in april 2006. question#1-you know i'm not really sure if his a rcc specialist??but his appt. yesterday with this dr.he seemed to be a rcc specialist.i guess i've never really asked.he talked to us like he knew something and said alot of thing i wanted to hear and not.
q. #2-surgeries: kidney removal andlower lung lobe removal and now their talking about doing brain surgery within the next week. q.#3-radiaton treatments: yes, whole brain, but it did know good which i knew it won't.q.#4-no he's not taking any kind of treatment right now. my question to you is don't you think he should have been on some kind of treatment plan by now? q.-did your rcc spread else where? if you don't mind me asking. later lou

Thanks Lou. I'm a pretty straight "shooter". I also know that this disease is very aggressive and not one to wait around. I always tell people with RCC that "Time Is Not Your Friend". Based on just what you've told me yes, I do believe that your husband should already have been on some kind of treatment. The doctors seem to be moving too slow. However, that is in the past and you can't change that. What about your husband's immediate future? Are they starting some type of treatment immediately? If not, I would really demand a different answer. If yes, what are they planning to do? My RCC did spread somewhere else. It started in my left kidney (which was removed) and then reappeared in just 5 months on the lower tip of my liver. That tumor and a portion of my liver were removed and then 3 months later it was back in the same spot on my liver---see how fast it moves!! That is when I started on Sutent. If your husband is a candidate for Sutent I would certainly recommend he try it. One last recommedation just because I am persistent. Please find out what your new doctor's background is relative to RCC--is he a specialist? Simply ask him. The reason I keep bringing this up is that the first oncologist we met whith had NO clue about RCC. I'm sure he was competant with other cancers but had to read from a book on RCC. We only went to one appointment and started looking immediately for another oncologist. Please let me know if you have other questions.

hi greg, my husband has a pet scan tomorrow but the insurance co. just called and said it's not approved yet,shortly after the dr. that wanted this test done called and was very p-o-ed with the ins. co. because they won't approve this test.he's been on them for 5 days now. the only thing is that this test as you know is very costly(about $3,000) i called our primary dr. to do some pushing with the ins. co.to see if he can get the pet scan approved. i don't know if its gonna do any good but i have to try something. i told my husband if the ins. co. won't okay this test we're gonna have to find some way to come up with the money. i don't know i'm getting really scared now all i want to do is cry and cry and cry. we kinda got oked by the ins. co. for sutent we're just waiting on one more paper that needs to be signed.i'm sorry for blabing on i just needed someone to talk to thanks lou