And to think i was saying Hooray last week!

14 years 1 month ago #30248 by mmc
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...

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14 years 1 month ago #30247 by mmc
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...

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14 years 1 month ago #30241 by Rockyiss
Replied by Rockyiss on topic And to think i was saying Hooray last week!
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

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14 years 1 month ago #30239 by vgau
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

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14 years 1 month ago #30238 by Patricia
Replied by Patricia on topic And to think i was saying Hooray last week!
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

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14 years 1 month ago #30237 by Cynthia
Replied by Cynthia on topic And to think i was saying Hooray last week!
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

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