Chromophobe RCC and Upcoming Cedars Sinai Conference

sblairc
sblairc Member Posts: 585 Member
in Kidney Cancer #1

Hello everyone, 

I have been lurking for a while, trying to decide if it was a good idea or a bad idea to join and connect online with others. Well, here I am.  My 47 year old husband had a radical nephrectomy (and adrenal gland removed) in October for what turned out to be stage three chromophobe renal carcinoma. His tumor had clear margins, did go into the perenrphretic fat and "appeared to have invaded the renal vein." Lymph node biopsy from most sentinel node was negative, bone scan and lung xray negative. Abdominal CT scans revealed nothing noteworthy other than the tumor (7X6X6) There was "extensive necrosis present" in the tumor, but nobody said anything about the relevance of that. I have been slowly learning more about his diagnosis including the knowledge from many of you wonderful individuals. What I have learned from many of you is that it is important to become an advocate for yourself and stay informed. 

 

That being said, how do I find out if the Kidney Cancer Conference at Cedars Sinai will have information geared toward chromophobe cancer? I don't want to take my husband and have all the information be only applicable to the most common forms of renal cancer. 

If anyone knows how I can find out, that would be great. I'm also open to good resources for caretakers/spouses/children if anyone would like to share.  I am currently in therapy to deal with my anxiety and depression following the cancer surgery of my husband and it is helping immensely. 

Comments

  • todd121
    todd121 Member Posts: 1,448 Member
    #2
    Kidney Cancer Association Website

    There's a list of the speakers and topics on the KCA website.

    https://secure.kidneycancer.org/np/clients/kca/event.jsp;jsessionid=44A3233961019C61B378F13A5B67C187?event=3523

    Most of the topics are general enough that I wouldn't say they are clear cell specific. However, if you look at the topics list and have more questions, you could try emailing the individual speaker or the kidney cancer association to try and get more information. Several of the speakers are top in the field of RCC in general, and I would hope they will have a question/answer session so you could ask questions. I didn't notice anything that addressed chromopobe type in particular either.

    Todd

  • sblairc
    sblairc Member Posts: 585 Member
    #3
    todd121 said:

    Kidney Cancer Association Website

    There's a list of the speakers and topics on the KCA website.

    https://secure.kidneycancer.org/np/clients/kca/event.jsp;jsessionid=44A3233961019C61B378F13A5B67C187?event=3523

    Most of the topics are general enough that I wouldn't say they are clear cell specific. However, if you look at the topics list and have more questions, you could try emailing the individual speaker or the kidney cancer association to try and get more information. Several of the speakers are top in the field of RCC in general, and I would hope they will have a question/answer session so you could ask questions. I didn't notice anything that addressed chromopobe type in particular either.

    Todd

    Thanks

    Thanks for the reply, Todd. I looked over the speaker list and thought it seemed pretty geared toward generic topics. When I emailed it to my husband, he looked over the topics and wants to go anyways so we are going. I guess my fear is we end up listening to a topic on future treatments, promising new drugs, etc, and "good news" ends up not being applicable to his type of cancer. He goes for his first set of post op scans in April with an oncologist (switching from the urologist that has been treating him) so we just want to be as knowledgeable as possible. Everyone here has great information and I'm thankful for that. 

  • I am alive
    I am alive Member Posts: 315
    #4
    Non-clear cell experts

    I am a chromophobe and know your frustration. Using the list of doctors who will be talking at the Cedars conference, I would call each and ask the question: who on the West Coast where you are is an expert in non-clear cell RCC, specifically chromophobe? Can't hurt and you may stumble upon a bonafide expert in chromophobe. It's so rare that a lot of regular oncologists are not up on the latest treatment options. I am in a clinical trial specifically for non-clear RCC but it is based in NYC, at Memorial Sloan Kettering Cancer Center. But it might be worth your time to call Sloan and ask for a West Coast recommendation - these doctors who routinely attend and lecture at RCC conferences tend to know each other, the national experts and specialists and  even, sometimes, local experts. Good luck in your search. I know you will reap valuable info, just keep at it. The good news is that chromophobe is usually indolent. I've been dealing with mine for almost 9 1/2 years now. 

  • I am alive
    I am alive Member Posts: 315
    #5
    Necrosis

    P.s. Like your husband's, my original tumor was also extensively necrotic.

  • sblairc
    sblairc Member Posts: 585 Member
    #6
    I am alive said:

    Necrosis

    P.s. Like your husband's, my original tumor was also extensively necrotic.

    Thanks, I am alive

    That is great information about reaching out for contact information. I would move across the country if it meant getting my husband into the right protocol, should it ever come to that. We love our urologist, but are very very happy we went with our gut to get a post-op consultation with an oncologist. As far as the urologist was concerned, my husband didn't have cancer anymore. Seeing the onc doctor pushed my husband's first set of scans up to 6 months in stead of 1 year which is fine by me. I will definately see which doctor in Southern California are considered experts in chromophobe type.

     

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
    sblairc said:

    Thanks, I am alive

    That is great information about reaching out for contact information. I would move across the country if it meant getting my husband into the right protocol, should it ever come to that. We love our urologist, but are very very happy we went with our gut to get a post-op consultation with an oncologist. As far as the urologist was concerned, my husband didn't have cancer anymore. Seeing the onc doctor pushed my husband's first set of scans up to 6 months in stead of 1 year which is fine by me. I will definately see which doctor in Southern California are considered experts in chromophobe type.

     

    I don't know about chromophobe type experts, but I do know a couple of the top RCC medical oncologists in the southern California area: Dr. Figlin at Cedars Sinai and Dr. Pal at City of Hope. There are probably others at UCLA and USC that I don't know (perhaps more in San Diego), but these were the closest to me and who I consulted, but I have the more common clear cell type. There are none with RCC expertise in Orange County that I'm aware of nearer to where I live.

    My urologic oncologist also considered me cured. Stage 3 needs to be more closely monitored than Stage 1. I don't think waiting 1 year post op meets the standard of care for Stage 3 RCC. I've been scanned every 4 months and will have my 1 year scan next week, then go to every 6 months for another year, then every year. I thought standard of care was CT abdomen/pelvis and chest xray every 6 months for first 2 years, then yearly to 5 years.

    I hope you're seeing a good medical oncologist. There should be a few options in the LA area.

    Todd

  • sblairc
    sblairc Member Posts: 585 Member
    #8
    todd121 said:

    I don't know about chromophobe type experts, but I do know a couple of the top RCC medical oncologists in the southern California area: Dr. Figlin at Cedars Sinai and Dr. Pal at City of Hope. There are probably others at UCLA and USC that I don't know (perhaps more in San Diego), but these were the closest to me and who I consulted, but I have the more common clear cell type. There are none with RCC expertise in Orange County that I'm aware of nearer to where I live.

    My urologic oncologist also considered me cured. Stage 3 needs to be more closely monitored than Stage 1. I don't think waiting 1 year post op meets the standard of care for Stage 3 RCC. I've been scanned every 4 months and will have my 1 year scan next week, then go to every 6 months for another year, then every year. I thought standard of care was CT abdomen/pelvis and chest xray every 6 months for first 2 years, then yearly to 5 years.

    I hope you're seeing a good medical oncologist. There should be a few options in the LA area.

    Todd

    So far my husband likes him

    He seems to like his oncologist. I was glad we went when I found out that that the urologist was wrong about the scan schedule. I opted out of the "meet and greet" with the onc since I think sometimes it's good for him to have time to talk to his doctors without me around. 

    Unrelated: It's a tell tale sign you are getting older though when your doctors are starting to be younger than you. 

  • todd121
    todd121 Member Posts: 1,448 Member
    #9
    sblairc said:

    So far my husband likes him

    He seems to like his oncologist. I was glad we went when I found out that that the urologist was wrong about the scan schedule. I opted out of the "meet and greet" with the onc since I think sometimes it's good for him to have time to talk to his doctors without me around. 

    Unrelated: It's a tell tale sign you are getting older though when your doctors are starting to be younger than you. 

    My Oncologist and Age

    My oncologist is in his early 30's. I still haven't decided if this is good or not. Lol. I've noticed pluses and minuses, but obviously more pluses or I would have bailed.

    He's very inspiring. Graduated UCLA at 17, UCLA medical school by 22, and is chair of the kidney cancer program at City of Hope somewhere around the age of 31 or 32.

    It's a tell tale sign you're getting older when you notice a lot of people walking around younger than you. And when you notice people you consider children pushing strollers themselves. Haha. My kids (30 and 27) just hate it when I even hint that I consider them kids. I never thought I'd feel proud and happy to see my kids angry, but I do! (At least about some things...)

    My youngest son got mad at me in September and told me he wants a break from me. He has barely talked to me since September. It bothers me at times, but most of the time I know that it's ok. In fact, I kind of admire him for doing it. Lol. I never had the guts to tell my parents that!

    Todd

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