Breast cancer

[hutchibk]

AA -I know you are heartbroken. Blessings and love during this difficult time...

[mcgle]

So sorry you have had this dreadful loss, AA.

Five years is a great milestone, and I'm sure your friend would have been delighted for you.

Mcgle (UK)

[AlaskaAngel]

I appreciate all the thoughtful replies from ALL of you, and am thankful there is room here for polite expression of our deepest concerns. For whatever reasons, I am more afraid of toxic treatments than of cancer. Like so many others, I do not know if doing toxic treatment was more helpful or more harmful -- but here I am. When I think of those like my friend, who went through the baldness and loss of sexuality and the difficulties of treatment only to pay the highest price of all, there is nothing to take away the ache.

Of course that doesn't mean that some others have not benefitted, only that until some of the many, many theories and studies about targeted therapies are actively applied, those who don't benefit will continue to be stripped of what comfort they could have kept to get them through their hard times. My friend asked me to speak in her behalf about that, and so I do. It is a subject that isn't often mentioned, as if one should be ashamed or embarrassed for speaking about that reality; yet those like my friend who read here daily continue to suffer through it in silence.

I agree with Lani, and I think my friend would have too -- that careful sharing of information (with genuine informed consent) about each of our cancers would be immensely valuable. Is there any way to accomplish such a thing as HER2s through this website?

[Andrea Barnett Budin]

Hi all!

This is so important! I was going to get to this topic Lani brought up, and Alaska Angel helped me move forward.

In '95 when I was first dx -- 4th stage invasive lobular carcinoma w/2 out of 21? nodes -- there was no idea of testing for HER2. But I lived on Long Island in New York and the national 1 woman in 10 at the time was much higher on Long Island! Something like 1 in 9, now 1 in 8. So a major study was underway. I was approached in pre-surgerical testing by a nurse who politely asked if I would donate a small portion of my to be removed tumor (9 cm) toward this study. I immediately agreed! I understood that it was crucial to know all we could possibly find by testing tumor pathology of breast cancer patients. I wanted to help. And I think each of us feels the same. I have participated in further studies since (on psychological investigation into those who survived HER2 metastatic cancer, by a group under Dr. Dennis Slamon at UCLA). Again, vital information that needs to be gathered and analyzed!!

HOW DO WE INSTIGATE ONGOING STUDY? Who needs to be contacted? Has anyone been approached as I was in '95? I was NOT asked in '98 when I metastasized, and I grieve for the loss of such invaluable information! How can we stop this foolish neglect. Lani is so right that the path to a cure would be shortened by the gathering and study of tumor pathologies. It is common sense. I cannot think of any one who wouldn't want to contribute their cells, blood, whatever toward finding a cure for this disease reaching epidemic proportions!
Andi

[Lani]

Michael Clarke the person who first "discovered" the breast cancer stem cell and he was adamant that the best thing one could do would be to try to get breast cancer patients organized in a way to donate their tissues in ways that would get around the bulky constraints imposed by HIPAA (patient privacy laws)

At a recent AACR (cancer researcher association ) meeting on advances in breast cancer about three weeks ago I met Dr. Glenn Deng, who has developed a machine utilizing a different technology than the Cell Search (which uses immunomagnetism and EPCAM as I understand it) to identify circulating tumor cells and then goes on to find the markers/genes on the individual circulating tumor cells. I discussed with him that it was my impression that many of the ladies here would be more than happy to donate some blood and or a bit of their old biopsy to help research into her2+ breast cancer progress faster (even more so if they were informed of their own findings!)

The nice part of his technology is that it can get similar information to gene expression profiles which normally require fresh frozen specimen(for retrieval of DNA), when almost every breast cancer patient has their specimen fixed in paraffin. If indeed they can get information from just circulating tumor cells (from a simple blood draw) and they can follow it during the course of treatment and during the time after treatment, this might potentially save breast cancer patients from having to wait 10 and 15 years before they decide which is the best AI, which tumors are resistant to AIs, which tumors are sensitive to anthracyclines, taxanes, herceptin, tykerb, etc

I have contacted Dr. Deng since meeting him at the AACR meeting and will
ask him to make a specific proposal that I could perhaps bring back to you here. I have also approached Dr. David Hirschberg at Stanford who is looking into the immune system of normal people and those with various cancers which elude the immune system, but such research is still in its infancy as what is normal has not yet been adequately defined.

It is one thing to have an idea, another to be able to get a researcher interested, have the researcher get funding , get people organized to donate their specimen/blood, and yet another to figure out the legality/privacy/ownership issues, etc.

I hope our sorrow at Alaska's loss of her friend motivates enough here to
see if we can do something constructive to move things forward faster!

[Andrea Barnett Budin]

Well I'll be DENG! Pardon the pun. Seriously, TAKE ALL THE BLOOD YOU NEED FROM ME TO FURTHER AND SPEED ALONG BC HER2+ PROFILING AND SENSITIVITY, ETC!! Which of us would not give our blood for such a noble cause??

Michael Clark sounds like my kind of man. Let's get organized and proceed around the bulky constraints, by all means! AMEN. Please lead the way. I'll sign up today!
Andi

[Chelee]

I know you could certainly count me in. I would welcome the opportunity to help in any way possible. With any lab work necessary, biospy slides, etc. I really like the idea that we would be informed of our own findings...that *would* be a major plus in my book.

I'm actually suprised something like this hasn't been done long before now. But again, I would more then willing to give any thing that's needed. I hope in time they can get this going...its long over do.

Chelee

[Andrea Barnett Budin]

Yes, Chelee,

In every study I agreed to participate in, I was told I would receive the results of their findings, before even asking. It stands to reason that you have a vested interest!

We do this for one another, and for our Children, Sisters, Brothers and the next generation!!!! Knowledge is power.

Andi

[Montana]

Alaska,

Congratulations on your 5 year milestone.

I am sorry for your friend. I lost a good friend to a stroke the day after I was diagnosed. I know what you are feeling...

To all our lost friends.....

[Lani]

Scientists indicate HIPAA privacy rule has had negative influence on health research [Eureka News Service]
About two-thirds of clinical scientists surveyed report that the HIPAA Privacy Rule for patients has had a negative influence on the conduct of health research, often adding uncertainty, cost and delays, according to a study in the November 14 issue of JAMA.
The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule was intended to strike a balance between protecting the privacy of individually identifiable health information and preserving the legitimate use and disclosure of this information for important social goals, according to background information in the article. However, many researchers have expressed concerns that since implementation in April 2003, the Privacy Rule has adversely affected the progress of biomedical research.
Roberta B. Ness, M.D., M.P.H., of the University of Pittsburgh, Penn., and colleagues with the Joint Policy Committee, Societies of Epidemiology, conducted a survey to determine the degree, type, and variability of influence from the HIPAA Privacy Rule experienced by epidemiologists conducting research on U.S. human subjects (participants). Thirteen societies of epidemiology distributed a national Web-based survey and 1,527 eligible professionals anonymously answered questions.
The researchers found that regarding general perceptions of the HIPAA Privacy Rule, a majority of respondents reported that the degree to which the rule made research easier was low, at 1 to 2 (84.1 percent) on a 5-point scale (with 1 = none, 5 = a great deal), and that the degree to which the rule made research more difficult was high (67.8 percent), at 4 to 5 on the scale. Almost 40 percent indicated that the Privacy Rule increased research costs in the high range of 4 to 5, and half indicated that the additional time added by the rule to complete research projects was high.
Almost half indicated that the Privacy Rule had affected research related to public health surveillance at the high level. The perceived benefit of the rule with respect to strengthening public trust was reported as high by only 10.5 percent of respondents, and only 25.9 percent believed that the rule had enhanced participant confidentiality/privacy in the high range of 4 to 5.
Respondents also indicated that the proportion of institutional review board applications in which the Privacy Rule had a negative influence on human subjects (participants) protection was significantly greater than the proportion in which it had a positive influence.
ABSTRACT: Influence of the HIPAA Privacy Rule on Health Research [Journal of the AMA]
Context: Anecdotal reports suggest that the Health Insurance Portability and Accountability Act Privacy Rule (HIPAA Privacy Rule) may be affecting health research in the United States.
Objective: To survey epidemiologists about their experiences with the HIPAA Privacy Rule.
Design, Setting, and Participants: Thirteen societies of epidemiology distributed a national Web-based survey; 2805 respondents accessed the survey Web site and 1527 eligible professionals anonymously answered questions.
Main Outcome Measures: Responses related influences such as research delays and added cost after Privacy Rule implementation, frequency and type of Privacy Rule-related institutional review board modifications, level of difficulty obtaining deidentified data and waivers, experiences with multisite studies, and perceived participant privacy benefits under the rule. Respondents ranked their perceptions of Privacy Rule influence on 5-point Likert scales.
Results: A total of 875 (67.8%) respondents reported that the HIPAA Privacy Rule has made research more difficult at a level of 4 to 5 on a Likert scale, in which 5 indicates a great deal of added cost and time to study completion. A total of 684 (52.1%) of respondents identified a "most affected" protocol. Respondents indicated that the proportion of institutional review board applications in which the Privacy Rule had a negative influence on human subjects (participants) protection was significantly greater than the proportion in which it had a positive influence (P < .001).
Conclusion: In this national survey of clinical scientists, only a quarter perceived that the rule has enhanced participants' confidentiality and privacy, whereas the HIPAA Privacy Rule was perceived to have a substantial, negative influence on the conduct of human subjects health research, often adding uncertainty, cost, and delay.

[StephN]

... get rid of the HIPAA papers we must sign each time we seek medical care. Just had to sign another one this morning.