I had more rads...now there are some on this site that say you can't have radiation again but my radiation onc reccomended it. The first time I had IMRT...which is kinda like 3D it zaps it from different angles on a largeer area...the second time I had Electron Beam which zaps a small designated area (where the 2nd lump was found. The oncologist said that more chemo wouldn't do any good, since it didn't get it all the first time.

This has become a very convoluted thread...I am not quite sure where to start but I think I will go backwards...What remains, on my part, is a very strong belief that Bob's thoughts (as presented by Nancy courtesy of Maryjahn), Ms. Bliss's thoughts and Nancy's thoughts all belong in the Alternative Treatment Support section on this forum. This section is found under Support Groups under the heading Alternative Treatment Support. This section was inaugurated in October and I believe was in response to a lot of folks who are interested in alternate ideas to have a forum. To be honest, I went there for the first time tonight and found references to several books, many dietary tips, no radiation suggestions, no chemo suggestions, meditation techniques etc. etc. I have no problem with any of that. Everyone is entitled to deal with cancer as they see fit. As an example there were several studies presented at ASCO re: Vitamin D that were encouraging and perhaps some day it, as an example, will be considered 'standard of care' and who knows the work done by the Greeks and the Germans mentioned by Nancy and Suzanne Somers in her blog may also turn out to be beneficial to our community.

First of all I must say to Bob that my heart goes out to you and I admire the dedication you have for your wife's care. Ms. Bliss, Maryjahn, Nancy...my heart goes out to all of you and in fact to everyone here. And a special welcome to Latricia and good luck with your surgery on the 25th. I will try respond to your questions, and some of the answers unfortunately may be depressing, Latricia..

However, I have some major problems with some things that have been said on this thread..

Most troubling to me, if Bob is quoted correctly, is his statement.."The biggest problem with the status quo is false positives and unnecessary surgeries and treatments and I would suggest that you print out this email and keep it handy for yourself or someone you know before you or they get cut or fried." Pray tell, Bob, what would you recommend specifically for the women here and what are your medical credentials for such a recommendation? I find your recommendation, if followed by the women here extremely dangerous. We know that TNBC is a major problem with few ideal solutions but not treating the cancer with chemo, surgery and radiation could be a clear path to disaster much of the time. Bob, Nancy, Ms. Bliss, Maryjahn my questions remain--
-who is the MD Anderson doc who said this is a "huge success"?
-where is the statement from the Cleveland Clinic?
-where are published, peer-reviewed studies from these companies/labs?
-where are the blinded clinical trials to validate their work?

and some new ones-

-many TN women here do not have metastatic disease (that we know of)..no positive lymph nodes, early Stage TNBC..if there are no "circulating cancer cells" how would they be treated by the German/Greek labs?
-where is the evidence that examining a single cancer cell is equal to examining sections of a much larger tumor?
-Bob, where are the answers from Dr. Prix to your important questions?

The LEF that is shown as a reference is the Life Extension firm, selling what I would call an alternative approach to fighting cancer. They sell supplements etc. and again, anyone interested in their products should be free to look at them on the Alternative Treatment Forum (ATF).

By the way, I did some research on Bio-Focus and found

http://findarticles.com/p/articles/mi_m0ISW/is_277-278/ai_n16702337/pg_3/?tag=content;col1

Townsend Letter for Doctors and Patients, August-Sept, 2006 by Jonathan Collin

who was pro- BioFocus labs wrote in 2006...

"The cutting edge of alternative medicine and cancer treatment: the video every alternative practitioner should see"

Has Bio-Focus moved from "alternative" to "mainstream" in the last four years? where is the proof that they have?

I believe the Townsend Letter is an alternative publication..If they call BioFocus alternative I think that is what they are and again, the Alternative Treatment Support section of this forum is where the information belongs.

Dear Ms. Bliss,

I did not knock MammaPrint or Target Now or chemosensitivity, in general. Why did you infer that I did? What I am specifically questioning is what Nancy presented as fact...that two labs mentioned on Suzanne Somer's blog in October have proven techniques. I have asked questions that are unanswered. What I am 'knocking' is telling women here, on the main forum, that the standard of care this community lives under can be replaced...and yes, all here recognize that the current system is deeply inadequate. Scientists/researchers are working hard to improve things for our community and perhaps the work done at BioFocus and others will make important contributions but we need proof. I would actually welcome such proof. But telling women here to go to some clinic, under present circumstances, brings that advice to a different level...and it scares me.

Nancy wrote "There are two testing centers for chemosensitivity and it does not have to be trial and error when it comes to which chemotherapy agents will sucessfully treat your breast cancer." Nancy, where is the proof for this statement? A woman joins this forum facing surgery and is basically told "go to Greece or Germany because some unnamed doctor says it's wonderful and don't get cut and/or fried." Is that what this forum is all about? I pray that will never be the case.

TNBC is a very difficult cancer. I am totally convinced that many, many brilliant minds, like Drs. Winer and Carey and many others, are working on this problem. I spoke to about 25 oncologists at ASCO. They impressed me with their concern for our community and I believe are completely dedicated to treating TNBC more effectively. It is inconceivable to me that these physicians/researchers would let anyone block a major breakthrough such as a blood test that would determine which chemo would work. They recognize that a blood test, if accurate, would be a nice improvement to neoadjuvant therapy. I don't care how much money has been invested in various chemotherapies...if something vastly better is discovered it will see the light of day.

and that brings me to your questions Latricia...There is no precise, effective treatment that works for every case of TNBC. My daughter was diagnosed at age 36 and treated with surgery, and four monhts of AC + Taxol. She is cancer-free five years later. Others here have not been as fortunate while other have. Much work remains to be done. There is no guarantee with any of this. Do you have the ability, even at this late date, to get a second opinion from a medical oncologist regarding your treatment plan? I hope your surgery goes well and my prayers are with you.

I hope my thread does not start an unfortunate back and forth..we have had them here before (and they have not helped this forum in my opinion) and that is one reason why the ATF was initiated. I have spent several hours now trying to research the labs mentioned and in writing this reply..

I tried my best to write with the respect I have for everyone here and the love I have for TNBCF. If I have personally offended anyone that was not my intention and I apologize.

In an effort to avoid the back and forth I will no longer write on this topic. You are welcome to have the last word. I mean that in a positive way.

wishing you all the best,

Steve

what Nancy wrote-

May God bless you, Steve, Ms. Bliss, Nancy, Carol, and others that are all encouraging me and definately making me feel like I am not alone in this or forgotten.  May God give each of you wisdom and insight in all of this.  Thank you, for your advice and prayers, Steve.  I hope to begin phone calls on Monday.  Unfortunately, I have Medicaid, and I fear that will be a hindrance.  It was suggested that get my second opinion at Vanderbilt (my daughter lives an hour or so away).  So, hopefully, they will listen to me (Medicaid insecurities here) and allow a 2nd opinion.  I would hope that I could get something going perhaps before my surgery on the 25th.  Some are saying they can't believe the breast wasn't taken off at the onset of the dx.  This has been a year now since I first saw a lump.  Why is it there are such vast differences of opinions regarding the timing of the chemo/rads to be done before surgery or after surgery?  Still just so unbelievable.

Hello everyone, Latricia,

Hi,

Hi to all,

Hi Kelly,

It might be helpful to use more info for your "tie breaker".  Some other features to reference are:
What was the location of your tumor--was it under or adjacent to the nipple, or very close to the axilla, or very close to the chest wall? (which would increase risk). 
Did your tumor have abundant lymphocytes, synctial sheets, or a well defined boundary?
(this would be favorable).
Have you had a Breast MRI to determine if there are any other masses or DCIS?

Kerry OK wrote: Hi to all,   Today is my first day to post anything about my Breast Cancer.  I was diagnosed with  Breast Cancer on November 11, 2009.   I had a lumpectomy on November 27th.  The results were Stage 1 Grade 3 invasive ductile Triple Negative Breast Cancer.  The tumor was <.5 with negative sentinel nodes.  My oncologist recommended radiation only.  He attended a BC conference and discussed my case.  There was a split decision on whether or not to do chemo.  I go for a second opinion on Monday the 18th.  I would appreciate any feedback on similiar cases.   Thank you,   Kerry OK

Kerry,

With your tumor being small, there may be no clear cut decision on treatment.  Some believe that any portion of tnbc that is invasive, no matter how small, should be treated with chemo.  It's good that you went for a second opinion.  I understand how confusing it is with getting different opinions from different doctors.    If you're willing, another opinion from MD Anderson may help you decide on your course of treatment.  Steve and/or Donna Z from this forum may be able to suggest an oncologist.  There also may be others who've received treatment from MD Anderson that will offer suggestions. 

Keep us posted on your treatment.

http://www.adjuvantonline.com/index.jsp

Hi Kerry,