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  • And to think i was saying Hooray last week!

    Posted by on February 12, 2010 at 4:37 am

    had to postpone my radiologist/oncologist meeting last week due to a foot of snow and terrible roads but i did get there today and she pretty much shot down all the research i had done. Doesn’t want to do the Canadian protocol..but do 4 weeks with a spiffy machine IGRT or Tomography where they do a quick CT scan each time before radiation to adjust to whatever..who knows..my tumor is out. Its the Axilla that needs the radiation. I’d researched the prone position as that does less harm to lung or heart tissue but..yep shot down again…that one is reserved for 36 DD’s…i didn’t make the cut with that one. She wanted me to go back in and have a second operation to remove more nodes….well heck..thats a crap shoot..they’re embedded in fat and they don’t know if they have them all anyway so why bother and then to couple radiation on top of it is just asking for lymphedema..so Pat is not taking that route. I don’t know……think i’m going to get another opinion from some other radiologists who specialize in breast cancer. Problem is she’s it here in Cinti and she also does pediatric cancers. She’s probably good. How would you know. Bladder cancer so much easier to research as there aren’t that many places or top uro/surgeons out there. I’m supposed to go in next week to get marked but hey i might just be on a beach somewhere. The fight has been drained out of me!
    Pat

    mmc replied 14 years, 12 months ago 11 Members · 16 Replies
  • 16 Replies
  • mmc's avatar

    mmc

    Member
    February 16, 2010 at 7:48 pm

    I might ask them to identify blood type…good idea. They’ll think i’ve completely lost it i’m sure.
    They have a ton of places to stay with shuttle service but it will still cost me about $2000 if i decide on treatment there but i’m more likely to comply with the protocol there then if i have to drive 40 miles both ways here!!

    Well if your place has the best toys, why not just stay closer to your place so you don’t have to drive 40 miles each way each day. Maybe stay one or two nights a week close to your hospital. That way, no flights, best toys, incentive to stick to the protocol, treat yourself to a few nice meals out, etc.?

    Just a thought….

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • melodie's avatar

    melodie

    Member
    February 16, 2010 at 6:48 pm

    Pat – Sorry, I’ve fallen behind on the forum updates and haven’t called you like I ought to – bless your heart, after reading this post, I say, set up appts. to get additional opinions…in the meantime, your angels need to pick you up and carry you off to a warm beach somewhere to relax. You need to re-charge your batteries. Hugs, Melodie


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • gkline's avatar

    gkline

    Member
    February 15, 2010 at 8:54 pm

    Pat, I wish I had a magic wand for you. I have reread your first post, and twice I have started a reply. And twice I scrapped it. I was hoping you would regain your fighting spirit and indeed you have started the fight with your classic “be informed and attack” attitude.

    We may not be very well informed on breast cancer but we are part of your extended family and we want to help when we can.
    Thank you for all of your support in the past and I can only hope that we can be some small amount of support for you.

    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • 's avatar

    Guest
    February 14, 2010 at 3:46 am

    Yes Mike..its posted on another thread but my slides were sent to the leading breast cancer pathologist in the country who happens to be at Vanderbilt. He agreed with the local path..but i still keep thinking of what are the odds of two of us being identical……I’m always looking for a way out!!
    I might ask them to identify blood type…good idea. They’ll think i’ve completely lost it i’m sure.
    They have a ton of places to stay with shuttle service but it will still cost me about $2000 if i decide on treatment there but i’m more likely to comply with the protocol there then if i have to drive 40 miles both ways here!!
    Pat

  • mmc's avatar

    mmc

    Member
    February 14, 2010 at 1:24 am

    I was pretty sure that you’d have already checked out everything that I’d be able to find. Sounds like you already have the answers you need to make your decisions.

    So, maybe this is a dumb question but are you having your slides sent out to another pathology lab? I guess your question is probably more of “Are the slides they think are mine, actually mine?” I have no clue on how to figure out that one beyond the way you already mentioned (DNA). I wonder if they can blood type from the slides? Not a sure way to check but at least if you are a different blood type from the other person that had their’s done the same day.

    When I went to MD Anderson, we stayed at a Hilton simply because I travel a lot on business and had enough points to stay using points. Used airline miles for free tickets also. That stuff came in really handy. When I had my surgery in Denver, my wife was able to stay at the nearby Hilton for the whole time using points. Used them all up though. The plan was to use that stuff for vacations but it sure saved a lot for us when we didn’t need to add money problems to everything else we had going on.

    Hopefully, some folks that have been there can chime in with recommendations on places to stay. I think all hospitals have deals with local hotels for discounted stays.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • 's avatar

    Guest
    February 13, 2010 at 11:39 pm

    Mike…..yes the 12 is correct for the kind of tumor it was..very low grade and should not have moved out of the area. Thats what has them scratching their heads. Kind of like a cystectomy where the tumor is in tact but those little cells got out anyway. I’m still skeptical of two pathology reports that were identical for the same day and she only did 2 patients that day which was Dec 29…New Years…makes ya think.
    I have done my due research on the state of the art machines and indeed the computed Tomography is indeed the best machine to tarket the axilla area especially the supraclavicular region which they can’t get to in biopsy anyway. So my place has the best toy. I know the radiation/oncologist has been doing breast and pediatric cancers for a long time and they are one of the first in the country to have this machine so they understand it. I have to hope they have great certified physicists involved with the planning along with a great certified dosimetrist..(those are few and far between)
    I have thought about a consult with MD Anderson if i can get in soon enough. I like Dr. Woodward there.
    Any hints on where to stay? I’ve looked at all their apts for rental but if you have an inside scoop let me know.
    Pat

  • mmc's avatar

    mmc

    Member
    February 13, 2010 at 1:41 pm

    Pat,

    Would a trip to MD Anderson to confirm diagnosis and treatment plans be in order?

    Seems like if they would do basically the same treatment locally, it would be fine but it would be good to have confirmation of the plan.

    MD Anderson has a cadre of top radiation oncology docs.
    MD Anderson Breast Cancer Docs

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • mmc's avatar

    mmc

    Member
    February 13, 2010 at 12:37 pm

    Pat,

    The Oncotype DX web site says it is an assay for lymph node negative. Is the 12 valid if there is in fact lymph node involvement?

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • rockyiss's avatar

    rockyiss

    Member
    February 13, 2010 at 2:33 am

    Pat , If chocolate cured cancer I NEVER would have got bladder cancer !
    Have you tried to get on some breast cancer sites and see what the people that go thru it have to say about the treatments your checking into . How about a second opinune at John hopkins? I wish there was something I could do for you but I guess the best thing to do is keep praying for you and behave myself on this web site so you don.t have to police me ! lol Rocky

  • vgau's avatar

    vgau

    Member
    February 12, 2010 at 11:12 pm

    Every time I hit a road block on getting that second opinion, I know it is crazy, but I think of you and know you would just tell me to get off the pot and find another way to get there. After you get this all figured out, I’ll share my latest plan to beat the insurance.

    Good luck in finding that second opinion and though we don’t have the history that you have with others on this site, I am thinking of you often and wish I could help.

    Vi


    Dx 10/5 Non Invasive Papillary
  • 's avatar

    Guest
    February 12, 2010 at 11:06 pm

    Cynthia…you had me laughing and crying at the same time! :silly:
    And yes i do believe in Citizens Arrest!!
    OK ..research…how do you find the best toy for breast cancer radiation….Is it the Tomography or Is the Varian 21 EX and Varian 6-100 which some use. Do they use it because they have the physicists that can set it (tomography) or not use it because they don’t have the money to buy it or are they just comfortable with what they’ve been using??? Who knows…they will all hard sell their way of doing things. 4 weeks of radiation a long time so it restricts most of us from going anywhere far away so are we getting the best treatment if we don’t go to a major facility or are most of these protocols the same whereever?…and what about the technicians…are they happy?? Been there a long time?? See i get caught up in the most minute detail don’t I? Don’t answer that.
    And i keep getting hung up on my very low OncotypeDX of 12 which indicates a non-aggressive cancer ..how the heck did it get into one of my sentenal nodes? Thats just not right.
    I think the pathologist was in a hurry to celebrate New Years Eve and got mine mixed up with anothers. My surgeon even said she got 2 identical pathologies from that day..the only 2 she did that day….thats suspicious. I want my DNA checked…..ok thats ridiculous….but hey, stranger things have happened.
    And why doesn’t Chocolate cure cancer? Have they tried that on the mice yet? I’ll keep eating it just in case.
    i love you all
    Pat

  • cynthia's avatar

    cynthia

    Administrator
    February 12, 2010 at 8:32 pm

    Since the forum became my baby I have learnt a lot most of it wonderful with a very small percentage I really didn’t want to know about it has been an experience. One of the most wonderful has been how unbelievable giving the people of this forum are. A decision made about the running of this forum was not to ask people to be full time monitors. We wanted the forum to be a community and when you make a citizen a police officer their role changes. Every community is built on its citizen’s talents and character. I could go on and on about many of you who make this forum a living place but I would like to talk about just one at the moment. Our Pat, now talk about a character, a delightful one. I couldn’t make Pat a moderator because I would have her trying to arrest people and have them taken to a major bladder cancer center and deposited on the door step of a top doc. But I have always said she will get the first award from the ABLCS when we have our first conference. When I first started working with the forum I would watch Pat try with all her might to make someone see how important it is to not take a obvious misstep. She would keep trying long after I would have given up her tenacity remarkable. For Pat it is like seeing someone walking in front of a car, you would do anything in your power to stop them. If someone has a need she searches until she finds it. The ABLCS finds her so valuable that we have offered to pay for her internet service so she could have the fastest service available to help her out with the research she does but she refuses as she does not wish us to use our resources, she does all her research using dial up.

    Even with all she is going through she has been very busy trying to help me. Even though she knows me and that I can do it she has been sending me things to look at. Even when she should be doing research for herself…………… Pat tell us what you need researched and we will do it for you. Just tell us what you need and we will try as hard as you do for us.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • sara.anne's avatar

    sara.anne

    Member
    February 12, 2010 at 7:48 pm

    Pat, I agree 100% with Nancy’s advice. GET A SECOND OPINION.
    Why does she want more lymph nodes now? Did they do a sentinal node biopsy at the surgery?
    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • webs's avatar

    webs

    Member
    February 12, 2010 at 4:47 pm

    Pat,
    Beaches are great but second opinions are better! If your not happy with the her assessment of the situation keep looking. It is your body, your life, and your choice. If the 2nd opinion agrees with her you will feel much better with the treatment plan.

    Pretty sure that is what you would tell me. B)

    Char

  • cljjlk's avatar

    cljjlk

    Member
    February 12, 2010 at 4:00 pm

    Pat,
    I’m sorry to hear about your disappointment. Hey, come on down here to South Florida. It’s not toasty today or for the weekend, but they are predicting sunny and warmer weather by next week once the front moves through. The change in scenery will do you good. Hopefully all the good wishes and support here at this forum will be a return for all that you have given to us. It’s hard, but keep the spirits up and that positive attitude, we all know that is best. Thanks for keeping us up to date. You are in my prayers.
    Chuck :)


    dx – Aug 2005
    Five reoccurences (last 12/09 Ta high grade)
    BCG Started 10/09 (2 6wk treatment)
    BCG Maintenance started 4/10
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