Need some info...

Buzzard Member Posts: 3,043 Member
I need to find notable hospitals that are noted for their expertise in different areas of protocol...

First RFA, Nanoknife, Cyberknife, .maybe a rough draft of what each reasoning is that if it comes to this that instead of complete removal of the left lung I am heading to where ever I have to to have something less invasive to the lung done..she is looking at a possibility of maintenance chemo. Firstly she is looking at having a pulmonary surgeon do a bronchioscope then we will know what we have. She said it would be less invasive that a biopsy. If anyone has had any of the above and if you know any requirements you have to meet that these can be done under or reasons why they may not could do this either pm or put it out in here.
I want to try and do the ultimate to get rid of disease but yet save as much lung tissue as possible to the area....
Or is it simply to get on maintenance chemo and try to control it for ever ?
This is something that has been mulled over by several in here and done by several. You will know the ins and outs and anything that you may have wished you had done or hadn't...
Just trying to cover all my bases before I make a decision on what protocol I will take ...If you think PMing this info would be a better situation then by all means do so...
I don't want to cross any line that may subject me to being stuck in the corner so any issue that comes up or something that needs not to be posted simply pm or I can contact through normal


  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Hi Buzz
    Sloan Kettering has been doing alright by me for a very long time as you know. I've only had the RFA done from what you've mentioned above but I've also had wedge resections done in my lungs. That was successful too. I've always approached my cancer aggressively and we are still talking the "C" word (Cure) although it might seem that after all of this time I am on maintenance chemo. I just see it as still trying to beat it and keep it from being too intrusive in my life and that has been the case so far. Those few node don't seem to want to hit the road (yet).
    I would certainly look into less invasive methods first over removal of a lung.
    I have never had anything biopsied prior to surgery with the idea being that if they miss their target and get a "false negative" then that would....suck?
    Hope this helps you
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Nanoknife locations

    The website address above gives a list of the 16 Nanoknife locations in the U.S. I don't know if there are actually more now, as this was from 2010, but there aren't very many in the U.S. The one nearest to you would probably be the one in Louisville, Kentucky. Check out the list. UCI in Irvine, CA is where I am going to have my consultation on nanoknife after I get back from the cruise.

    Best wishes in looking into all your options.

    Take care-
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Hey Buddy:)
    I'm in complete agreement with you and Phil on trying to spare the lung. That's an unnerving proposition - although I can tell you, Buzz that my uncle (had primary lung cancer) had one of his lungs removed and seems to be doing pretty good.

    I don't know how I would feel about that - makes me think right now though. I suppose as both of you guys know we would consider this option if it became a matter of life and death. Probably no question there. But less invasive certainly feels better coming on.

    As far as hopsitals go:

    You know I'm quite fond of UT Southwestern here in Dallas, TX. You already know the story about the groundbreaking deal we did with da Vinci and opening up the door for patients to have lung surgery via robot here in North Texas. You've seen the magazine that I mailed out and inside was the picture of my surgeon, Dr. D, Assistant Professor of Thoracic and Cardio surgery. Highly recommended and I trust him with my life.

    Last year we had to do a full open thoracotomy, so safe to say I've trusted him twice with my life and I would do it all over again and not think twice about it. I believe in this guy very strongly.

    With my lung surgeries we did one wedge resection with Da Vinci - with the open procedure we ended up doing 5-wedge resections.

    And I radiated the rest of the tumor due to proximity to the spine. I also know a good radiation oncologist who is at the top of his field and been a pioneer with IMRT radiation and Cyberknife. Also highly regarded.

    As far as what I wished I had done - I wish this last time that I had jumped on it sooner and became aware that I was in deeper trouble than I knew. I waited to get the initial can and then once I saw growth, I delayed a couple more times to finish some projects at work. At the end, I was in so much pain, I was barely able to work a 1/2 day and had to got to bed and take pain killers. That was a big regret but with the economy and jobs hard to find, I made a decision.... but it cost me. I often wonder if I had acted sooner would I have better success.

    Because of that blunder, it cost me the rads treatment and "a 6'er" with chemo.

    Phil's the pro with RFA on the lungs and he's doing better than I am, LOL:) I like his suggestions and his hospital is obviously very good and top rated.

    But keep Texas on your radar - we were recently promoted to NCI status for our cancer center, so we're considered the MD Anderson of North Texas. I'm proud to be here. We're doing all the latest stuff here.

    If I think of anything else, I'll let you know. We're gonna' get this thing handled, Buzz, just wish I had more to help you with right now.


  • scouty
    scouty Member Posts: 1,965 Member
    Dang Buzz!!!
    Sorry I didn't see your other message until today. I don't come here much anymore, the anger and nastiness bring out the worst in me so it is better for me to stay away. But for you my friend I am happy to try to help.

    I totally agree with your doc about being more concerned about the hilum then the liver for now. I think you are on the right track about looking for some sort of surgical procedure for it too. My lung met went away with chemo and my diet changes so I can't really help with the surgical options but hope other semi-colons can.

    Given where you live and that the Cancer Treatment Centers of American location outside of Chicago is the one that specializes in CRC cancers I would definitely give them a call. I know some here don't like them since they are a private hospital (for profit) just like Duke and all other private centers but I have never understood that reasoning and why we would ever rule out a place that might be able to help us. The 2 people I know that have gone there raved about their experiences. I also like that you can get a great deal of info over the phone without having to be there in person unless you are sure you want to go. Something else they do that you won't find in many centers is support and help with diet and other therapeutical approaches. They treat the whole person, not just the cookie cutter stuff everyone else does.

    Please read AntiCancer by Dr David Servan-Schreiber who recently lost his fight against a recurrence of brain cancer. He has some great recent data on diet and mental approaches against all kinds of cancers that many have had success with. I found his book to be very uplifting too. He originally got brain cancer in 1990 and as a doctor got the best of the best treatment and was NED for 17 years and then had a relapse. He was really surprised and disappointed that 17 years later his only treatment options were the same as the ones he had in 1990 even though he knew much more about cancer had been learned. His whole book is about ways to beat the stats that you can do without docs or meds, things totally in your control.

    As far as dietary stuff, if I were you I would cut back on added sugars and starchy veggies and grains yesterday! I will probably get blasted by some here (don't care anymore) but too many recent studies prove that cancer cells love that stuff! A high protein, low carb (loads of veggies, some fruit, and limited grains), good fat diet will help you build up your immune system and get your body ready for chemo and/or surgery if that is what you chose to do. Once on chemo, diet changes are really hard to maintain since your number one goal is to eat and maintain weight. If you are interested in more about diet etc. let me know and we can talk by PM (I'm not really interested in the BS I will get by posting it here).

    Clift, you've got my personal info so let me know if there anything I can do, I'm honored to be able to help. Again, I can't wait to hug your neck in Chi-town my friend and like I've told you before, you will kick this to the curb just like you've done before.

    Lisa P.
  • geotina
    geotina Member Posts: 2,111 Member
    Don't know if this helps but Nana2's husband Jim is currently being treated for his Stage IV at the CTCA facility outside Chicago (Zion, Illinois). She may be a source of some info on this facility. She doesn't post much and her last update on caringbridge is a few months old but you could send her a pm.

    Take care - Tina