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ccRcc diagnosed 08/03/2012

13

Comments

  • garym
    garym Member Posts: 1,647
    Kimmyanne said:

    You have a right to yell at
    You have a right to yell at this cancer all you want...My cancer has a poor prognosis too, atleast that's what statistics say. In jan of this year I was dx with stage 3c ovarian cancer, unfortunalty this cancer most times is dx at an advanced stage (stage 3 and 4) because the symptoms mock other symptoms.The Symptoms whisper...You'll do fine! You seem to have a great support team here...Stay strong

    Ovarian and RCC, much alike...
    Kimmyanne,

    We are all brothers and sisters when it comes to cancer, you are most welcome here. You are spot on about RCC and ovarian cancer, both are called silent killers because there may be no symptoms, or the symptoms are "whispered" away until many times its too late. The advances in recent years are beginning to erase that nick name and give us all new hope. May we live to see it gone for good.

    Good luck and Godspeed,

    Gary
  • Joe_fh
    Joe_fh Member Posts: 50
    Updates and Questions
    Hi folks, wanted to drop a update on my situation, and perhaps seek some insight on future treatments.

    I had the opportunity to speak with a doctor in the VA's oncology department ahead of my first appointment scheduled for 10/18/2012. Among items briefly discussed was a mention of the possibility of Chemo/radiation as a preventative therapy. Brief on my status is T3aNxMx, CC, grade 3, clear margins. Details are in the thread above. From a surgical perspective, all the cancer was removed.

    Oncology believes, correctly so from what I have read, that due to my tumor size as well as some renal vein involvement, that I am at high risk for new growth and/or met development. This Doctor mentioned that some things for me to think about ahead of the first meeting is the possibility of chemo.

    Now here's the part where I am seeking advice from the more experienced among us here.

    Everything I have read since learning of my cancer indicates to me that Chemotherapy and radiation is ineffective in Renal Cell Carcinoma. I am not talking about in one place, but site after site mentions this. So, I am obviously a bit confused why this therapy is being floated as a potential way to go to increase my chances against redevelopment.

    Now I know that none of us are doctors, and I am certainly no expert on anything about this disease - a armchair hack at best. So I am looking to hear from folks who have been through this where Chemo was involved. What was your experiences?, did you find it beneficial? Is there any insights you can provide from personal experience?

    Honestly, I am not sure I want to go through all the downside of chemo if a clear benefit is not indicated. Now I intend to voice this concern at the meeting, but any personal background from the experience ahead of that would be great to have.

    Thoughts?
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Joe_fh said:

    Updates and Questions
    Hi folks, wanted to drop a update on my situation, and perhaps seek some insight on future treatments.

    I had the opportunity to speak with a doctor in the VA's oncology department ahead of my first appointment scheduled for 10/18/2012. Among items briefly discussed was a mention of the possibility of Chemo/radiation as a preventative therapy. Brief on my status is T3aNxMx, CC, grade 3, clear margins. Details are in the thread above. From a surgical perspective, all the cancer was removed.

    Oncology believes, correctly so from what I have read, that due to my tumor size as well as some renal vein involvement, that I am at high risk for new growth and/or met development. This Doctor mentioned that some things for me to think about ahead of the first meeting is the possibility of chemo.

    Now here's the part where I am seeking advice from the more experienced among us here.

    Everything I have read since learning of my cancer indicates to me that Chemotherapy and radiation is ineffective in Renal Cell Carcinoma. I am not talking about in one place, but site after site mentions this. So, I am obviously a bit confused why this therapy is being floated as a potential way to go to increase my chances against redevelopment.

    Now I know that none of us are doctors, and I am certainly no expert on anything about this disease - a armchair hack at best. So I am looking to hear from folks who have been through this where Chemo was involved. What was your experiences?, did you find it beneficial? Is there any insights you can provide from personal experience?

    Honestly, I am not sure I want to go through all the downside of chemo if a clear benefit is not indicated. Now I intend to voice this concern at the meeting, but any personal background from the experience ahead of that would be great to have.

    Thoughts?

    Chemo
    Joe, do you know the names of any of the drugs your doc had in mind? In general, you're right that radiation and chemo are ineffective against RCC. The only pathology for which chemo offers possible benefits seems to be sarcomatoid but I don't think you have any sarcomatoid features, do you?

    It may be that your doc has other drugs in mind, such as the newer targeted therapies, or, possibly, immunotherapy. If he really meant chemo, I think you have good reason to doubt whether it's worth the candle.
  • Joe_fh
    Joe_fh Member Posts: 50

    Chemo
    Joe, do you know the names of any of the drugs your doc had in mind? In general, you're right that radiation and chemo are ineffective against RCC. The only pathology for which chemo offers possible benefits seems to be sarcomatoid but I don't think you have any sarcomatoid features, do you?

    It may be that your doc has other drugs in mind, such as the newer targeted therapies, or, possibly, immunotherapy. If he really meant chemo, I think you have good reason to doubt whether it's worth the candle.

    Chemo
    Thanks for the reply Wedge ...

    In regard to a specific drug name, no, he cited no drug name - the conversation was brief. It is also possible he just used the words Chemo/radiation as a frame of reference, and intends newer targeted therapies as you suggest, difficult to say. I guess the appointment next week will reveal more. Just hope they don't press me for an immediate decision on my part, I like to do a little independent research as to what I am getting into before I get into it.

    To the best of my knowledge, there are no sarcomatoid features involved. The pathology report only referred to Clear Cell as the type.

    But you did confirm what I have been reading with regard to chemo/radiation. Much appreciated.
  • Max Power
    Max Power Member Posts: 60
    Joe_fh said:

    Updates and Questions
    Hi folks, wanted to drop a update on my situation, and perhaps seek some insight on future treatments.

    I had the opportunity to speak with a doctor in the VA's oncology department ahead of my first appointment scheduled for 10/18/2012. Among items briefly discussed was a mention of the possibility of Chemo/radiation as a preventative therapy. Brief on my status is T3aNxMx, CC, grade 3, clear margins. Details are in the thread above. From a surgical perspective, all the cancer was removed.

    Oncology believes, correctly so from what I have read, that due to my tumor size as well as some renal vein involvement, that I am at high risk for new growth and/or met development. This Doctor mentioned that some things for me to think about ahead of the first meeting is the possibility of chemo.

    Now here's the part where I am seeking advice from the more experienced among us here.

    Everything I have read since learning of my cancer indicates to me that Chemotherapy and radiation is ineffective in Renal Cell Carcinoma. I am not talking about in one place, but site after site mentions this. So, I am obviously a bit confused why this therapy is being floated as a potential way to go to increase my chances against redevelopment.

    Now I know that none of us are doctors, and I am certainly no expert on anything about this disease - a armchair hack at best. So I am looking to hear from folks who have been through this where Chemo was involved. What was your experiences?, did you find it beneficial? Is there any insights you can provide from personal experience?

    Honestly, I am not sure I want to go through all the downside of chemo if a clear benefit is not indicated. Now I intend to voice this concern at the meeting, but any personal background from the experience ahead of that would be great to have.

    Thoughts?

    radiation
    I remember my onc telling me they used to think that follow-up radiation helped, but they no longer think so. That being said, many of us have successfully had radiation on bone mets, but that's a different topic.

    Along with not coughing and sneezing, you shouldn't laugh so we'll refrain from adding jokes and you need to stay away from the Friday joke thread!
    Max
  • Limelife50
    Limelife50 Member Posts: 476

    Chemo
    Joe, do you know the names of any of the drugs your doc had in mind? In general, you're right that radiation and chemo are ineffective against RCC. The only pathology for which chemo offers possible benefits seems to be sarcomatoid but I don't think you have any sarcomatoid features, do you?

    It may be that your doc has other drugs in mind, such as the newer targeted therapies, or, possibly, immunotherapy. If he really meant chemo, I think you have good reason to doubt whether it's worth the candle.

    Hi Texas
    I am sure i missed this in one of your previous posts but can you please explain to me what the hell does SARCOMATOID mean or what that is.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Hi Texas
    I am sure i missed this in one of your previous posts but can you please explain to me what the hell does SARCOMATOID mean or what that is.

    Sarcomatoid
    Mike, you've got to remember that I have no medical training, so this is just a lay friend's response in an attempt to answer your question. With luck, someone with real knowledge will come along and correct me where i may be about to mislead you.

    The human body has many different types of cell, specialised for particular sets of functions. Generally they remain distinct so that it's a myth that when strength athletes give up training "their muscle turns to fat" - it just can't happen. (But with my life-long interest in the areas that takes us into, I'd better not expand on that particular one of my hobby horses, or I'll never stop!)

    Originally the cells are in a general, inchoate, form that precedes their specialisation, which the pros call cellular differentiation. (I hope I'll live long enough to learn a bit more about it all but I'm intigued to know how we each come to have our own types of cancer cells. Presumably much has to do with where in our bodies the initial failure to control cellular proliferation kicks off.)

    Whatever, some of us get clear cell RCC, fewer get one of the forms of papillary, fewer still chromophobe and you'll have heard of the still rarer kinds such as collecting duct, oncocytomas, mucinous tubular spindle cell (the unusual form that Cody, Gail's son has - you know, "myboys2", whom we haven't heard from on CSN for a while) translocation Xp 11.2 and so on (the fabulous treasure-house site of the late great Steve Dunn gives a lot of info on some of these at:
    http://cancerguide.org/rcc_subtypes.html

    So, these cells have become differentiated into different RCC types, each with their own wildly different properties, provenances and responses to treatment. However, for whatever reason (anyone able to educate me on such points would be welcomed) and under what triggering circumstances (I have some thoughts on this) any of these specialised cell types can metamorphose by regressing to the earlier, undifferentiated form. This process is termed "de-differentiation", as the opposite of the previous specialisation, though unfortunately many, including those who should know better, often, confusingly, sloppily describe it as sarcomatous 'differentiation', thus obscuring the whole point about it being a process of regression, not progression. (As an arch pedant, this drives me nuts, like people talking of creatine when they are referring to its metabolite creatinine.)

    Until comparatively recently, the sarcomatoid pathology was thought to be another sub-type of RCC. Then it was realised that it is a possible transmogrification of any (?) of the true sub-types of RCC. What's called sarcomatous change is also a game-changer. If, like me, you have underlying chromophobe, which is the most slow-growing form of RCC and therefore escapes detection until it's achieved large tumours and is therefore typically detected in older patients (I probably have had it [unfortunate choice of phrase!] for more than thirty years while being blissfully unaware) it's a particularly unpalatable change. This is because the sarcomatoid form is, for some reason (and I'd love to know the underlying mechanisms), much more aggressive and develops much faster, as I'm all too aware, having just swallowed some more pain killers for my latest recurrence which has grown from nothing to 5cm. (more, by now, I'm sure) in not all that many weeks.

    Unfortunately at this stage, chromophobe, from being the histology with the best prognosis, has become incurable and has less weapons in the arsenal for life extension and quality than other forms. More generally, though, for some reason, the regression to sarcomatoid form makes the cancer more susceptible to intervention by the old chemo drugs, notably doxorubicin and gemcitabine, as a recent paper by the eminent (and wonderful) Dr. Janice Dutcher et al. testifies.

    The more the sarcomatoid component takes over, the worse the prognosis, so a diagnosis of simply 'sarcomatoid' is pretty bad news, as is the inability to type the RCC even as that, leading to a path report that says "undifferentiated" - a rag-bag description for whenever the pathologist is completely foxed by the appearance. Our friend Kathy here (her with the lovely dawg, Checkers) is just such a case, if I remember correctly.

    At risk of looking too self-regarding, I can record that at this very moment, I'm facing having to make urgent decisions which are, to my mind, somewhat contingent on how far I pay attention to the promise of treatments for chromophobe and how far I regard that as history and focus on treatments for sarcomatoid histology. Matt, on ACOR, is one valuable source of academic info on this issue and I'm very appreciative of some of the care-givers here who are so kindly helping me, such as Clara, Ange and, of course, Alice, as well as patients with their own battles such as our plucky Paula and I am alive (another chromophobe with whom I have a lot in common).

    So, your question about sarcomatoid is very timely.

    Well, Mike, you did ask!
  • Joe_fh
    Joe_fh Member Posts: 50
    ... And the good news is ...
    First post surgery appointment with Oncology was decent news.

    Still holding fast with the N0Mx, the morning scan showed NED. He confirmed the Pathology report that indicated the margins were clean which was a very good thing. He did feel that I was in a higher risk group so the Doctor placed me on an aggressive scan schedule mostly due to Tumor size and Renal Vein invasion. So we're gonna be doing scans every third month at first watching for anything that looks like growth. At this point he saw no benefit in any additional therapy.

    But at this early stage post-surgery, it's all looking good, and I am feeling good. Crossing my fingers that it stays that way.
  • angec
    angec Member Posts: 924
    Joe_fh said:

    ... And the good news is ...
    First post surgery appointment with Oncology was decent news.

    Still holding fast with the N0Mx, the morning scan showed NED. He confirmed the Pathology report that indicated the margins were clean which was a very good thing. He did feel that I was in a higher risk group so the Doctor placed me on an aggressive scan schedule mostly due to Tumor size and Renal Vein invasion. So we're gonna be doing scans every third month at first watching for anything that looks like growth. At this point he saw no benefit in any additional therapy.

    But at this early stage post-surgery, it's all looking good, and I am feeling good. Crossing my fingers that it stays that way.

    YAHOO! I LOVE IT!! GOOD FOR
    YAHOO! I LOVE IT!! GOOD FOR YOU! GO RELAX AND HUG YOUR KIDS!!
  • foxhd
    foxhd Member Posts: 3,181
    angec said:

    YAHOO! I LOVE IT!! GOOD FOR
    YAHOO! I LOVE IT!! GOOD FOR YOU! GO RELAX AND HUG YOUR KIDS!!

    yeah!
    Everything that Ange says! With as much enthusiasm! Good job Joe!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Joe_fh said:

    ... And the good news is ...
    First post surgery appointment with Oncology was decent news.

    Still holding fast with the N0Mx, the morning scan showed NED. He confirmed the Pathology report that indicated the margins were clean which was a very good thing. He did feel that I was in a higher risk group so the Doctor placed me on an aggressive scan schedule mostly due to Tumor size and Renal Vein invasion. So we're gonna be doing scans every third month at first watching for anything that looks like growth. At this point he saw no benefit in any additional therapy.

    But at this early stage post-surgery, it's all looking good, and I am feeling good. Crossing my fingers that it stays that way.

    Good news
    And we're all crossing our fingers for you too, Joe.
  • garym
    garym Member Posts: 1,647
    Joe_fh said:

    ... And the good news is ...
    First post surgery appointment with Oncology was decent news.

    Still holding fast with the N0Mx, the morning scan showed NED. He confirmed the Pathology report that indicated the margins were clean which was a very good thing. He did feel that I was in a higher risk group so the Doctor placed me on an aggressive scan schedule mostly due to Tumor size and Renal Vein invasion. So we're gonna be doing scans every third month at first watching for anything that looks like growth. At this point he saw no benefit in any additional therapy.

    But at this early stage post-surgery, it's all looking good, and I am feeling good. Crossing my fingers that it stays that way.

    Way to go Joe!!!
    Congrats...and may you remain NED for the next few decades!!!
  • Joe_fh
    Joe_fh Member Posts: 50
    New Update - 12/06/2012
    It's been a while since I posted, albeit I read the forum frequently.

    Had my second full follow-up with all the scans and blood work stuff. I am happy to report no new growth, holding steady at NED status. Just cause for optimism.
  • garym
    garym Member Posts: 1,647
    Joe_fh said:

    New Update - 12/06/2012
    It's been a while since I posted, albeit I read the forum frequently.

    Had my second full follow-up with all the scans and blood work stuff. I am happy to report no new growth, holding steady at NED status. Just cause for optimism.

    Great news Joe...
    and just in time for a very Merry Christmas, it doesn't get any better.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Great news Joe...
    and just in time for a very Merry Christmas, it doesn't get any better.

    Update
    Excellent news Joe.
  • RichardB63
    RichardB63 Member Posts: 59
    Joe_fh said:

    New Update - 12/06/2012
    It's been a while since I posted, albeit I read the forum frequently.

    Had my second full follow-up with all the scans and blood work stuff. I am happy to report no new growth, holding steady at NED status. Just cause for optimism.

    Update
    That is great news, perfect for the Holidays.

    Richard
  • alice124
    alice124 Member Posts: 896
    Joe_fh said:

    ... And the good news is ...
    First post surgery appointment with Oncology was decent news.

    Still holding fast with the N0Mx, the morning scan showed NED. He confirmed the Pathology report that indicated the margins were clean which was a very good thing. He did feel that I was in a higher risk group so the Doctor placed me on an aggressive scan schedule mostly due to Tumor size and Renal Vein invasion. So we're gonna be doing scans every third month at first watching for anything that looks like growth. At this point he saw no benefit in any additional therapy.

    But at this early stage post-surgery, it's all looking good, and I am feeling good. Crossing my fingers that it stays that way.

    Good News!
    Sounds wonderful Joe. Grab those kids, give them tons of hugs, and start what will undoubtedly be the best holiday ever! Happy for you.
  • foxhd
    foxhd Member Posts: 3,181

    Update
    That is great news, perfect for the Holidays.

    Richard

    Nice
    Good for you! What's the secret?
  • Joe_fh
    Joe_fh Member Posts: 50
    foxhd said:

    Nice
    Good for you! What's the secret?

    Secret?
    There's a secret? Dumb luck is more probable. As we all know this is - in comparison - early in the curve. It's my understanding we are not considered a 'survivor' until we hit that 5 year mark with NED/Remission. At least that is the extent of the watch plan that oncology outlined in my case.

    But for now, today, I am breathing a tad easier.

    It's also a bit bittersweet. I read these forums often since my diagnosis and realize the tough hand dealt to many others. It's kinda of humbling to recognize that in the scope of things, I have thus far got off easy.
  • therapture
    therapture Member Posts: 25
    Joe_fh said:

    Secret?
    There's a secret? Dumb luck is more probable. As we all know this is - in comparison - early in the curve. It's my understanding we are not considered a 'survivor' until we hit that 5 year mark with NED/Remission. At least that is the extent of the watch plan that oncology outlined in my case.

    But for now, today, I am breathing a tad easier.

    It's also a bit bittersweet. I read these forums often since my diagnosis and realize the tough hand dealt to many others. It's kinda of humbling to recognize that in the scope of things, I have thus far got off easy.

    No secret here, just more dumb luck :-)
    Joe, like you, I had a sudden diagnosis which came out of nowhere on 11-27-12, with lots of urine bleeding and sudden pain, in my case my 7.3cm tumor grew into the duct of my right kidney and brought about surgery just 6 days after my diagnosis. Clear Cell RCC stage 2, grade 3, relatively "good" as far as RCC goes, and after hand assisted laporoscopic surgery, everything looks good for NED status. I read about RCC online and literally scared myself to the point I stopped reading for a few days, way too much doom and gloom as you noted. Then I found this site and dove in, looked for better info on reputable sites, and started learning what to ask, how to ask, and my vocabulary got alot deeper. My particular story is mixed deep in this thread (direct link)

    http://csn.cancer.org/node/170619#comment-1314645

    The 5 year mark seems a long way off, but I guess I consider myself to be "surviving", or one could say "living" with cancer, really a lifelong mission to stay cancer free.

    The emotional roller coaster was wild the first week. It helped me to talk to everyone about it and be kind of comical about it, but at some point it's just good to really let the sadness OUT and deal with it, cry, whatever it takes. Then go on fighting and surviving with a great attitude. I was "tough" in front of my kids, we told them the truth the entire time, and they dealt with it better than I expected. I had many an examination of worst case scenarios in my mind late at night, with a few tears spilled here and there, alone in the dark. My wife was strong for me, and we had a few good cries together as well.

    In the scheme of things, we are early in the curve for this kind of cancer, and things look good long term. But I'll be here in this forum for years, trying to help others deal with this. It's one of my new hobbies I guess I could say.

    Glad to hear from you doing well, and as other's noted, all of the above posted sentiments/feelings/fears come with the price of admission to this club.