Date: Thu, 23 Jan 1997 17:28:45 -0500
From: mike/martha 
To: UKBCA@somewhere.org.uk
Subject: Breast Cancer

I have just finished reading your info on the internet, wanted to let 
you know how informative it is, and the help that you offer to women is 
of great importance, if it be of finacial means or emotional support.  I 
am from Canada, also have breast cancer, have completed my chemo and 
radiation.  I did not find the support that you offer, or perhaps I did 
not look in the right places.  The statistics for Breast Cancer has not 
changed in 20 yrs.  With your dedication and hard work hopefully you can 
help to make a difference.

Sincerely,   Martha McMahon.

Hi Martha,

Thanks for your message. I can only access e-mail from here
 (not web sites), so can't point you to any Canadian sites 
 at the moment, but perhaps you've seen some already.
  Are you aware of the breast cancer e-mail discussion group? I hope the
   following is still current info

To subscribe to BREAST-CANCER send an e-mail message to
Listserv@morgan.ucs.mun.ca
Leave the subject line blank, and in the body of the message put SUBSCRIBE
BREAST-CANCER your_name.

To send a message to the other people subscribed to this mailing list, send
e-mail to
BREAST-CANCER@morgan.ucs.mun.ca

To leave the list, simply send a SIGNOFF BREAST-CANCER command to
Listserv@morgan.ucs.mun.ca.

Beware, you might get a deluge of mail. You can browse the archives at

http://cure.medinfo.org/lists/cancer/bc_search_sl.html

and another visitor to our site has recently recommended

>http://www.mediconsult.com/home/cancer_support/content.html 
> It's a cancer emotional support group in America and I have found it to be >
extremely useful at times.

Stay well! best wishes, Marie

From: "John Bibby" 
To: UKBCA@somewhere.org.uk
Subject: Aware
Date: Thu, 9 Jan 1997 01:10:45 -0000

Just to say keep up the good work. A great and useful site. I will
recommend it to my patients.

John Bibby (GP & GP Tutor Bradford)

Hi John,

Thanks. I wasn't that crazy about the Times piece, the reporter seemed to know
nothing about breast cancer or the Internet. As you can see it is not possible
to"check a diagnosis, etc" but then that is not the intention of the site.

Regards, Marie

Date: Wed, 8 Jan 1997 22:26:46 -0500 (EST)
From: MarkPCL
To: UKBCA@somewhere.org.uk
Subject: Seeking Alternative Cancer Treatment

My name is Mark Chenarides and I have a friend that has just completed full
Chemo and Radiation treatments for breast cancer at the City of Hope here in
Southern California; "We still have a problem, the cancer is still there". If
possible can you reccommend any physician or center currently doing any
new/alternitive treatment for breast cancer anywhere.  

My friend Ms. Darla Atkins made national media attention last year when she
was denied insurance coverage for treatments, City of Hope was kind enough to
accept her for treatment (she now has coverage).  Ms. Atkins is 30 years old
with a 18 month old daughter Stephanie and a great husband David, they live
in Upland, CA in a small apt.   I have known them  for a little over a year.
 Ms. Atkins is the most vibrant and fun loving human being I have ever met
and I WILL NOT allow this disease to deny me the pleasure of her friendship
throughout my life as it did with my mother 11 years ago.

WARNING: The remainder of this message has not been transferred.  Turn off the
Skip Big Messages switch and check mail again to get the whole thing.

To: MarkPCL
From: m.nally@dial.pipex.com (Marie Nally)
Subject: Re: Seeking Alternative Cancer Treatment

Hi Mark,  

I am not able to make any treatment recommendations. Neither Nina nor I is
medically qualified and I can only refer you to the organisations for those
affected by breast cancer in Britain listed on our Cancer Contacts pages. You
could try searching for clinical trial information on the Internet, e.g. via
 
http://www.cancernews.com

Best wishes,

Marie

Date: Wed, 8 Jan 1997 08:50:10 -0500
From: R Alistair Richardson
Subject: Re: Breast Cancer
1/8/97

Many thanks for hosting this information.  A colleague and I at work both
have wives with breast cancer problems.  Reading the points in the 'aware'
page it would seem that if in 1991 34,500 new cases were diagnosed and that
14,000 died in 1996, the percentages are not at all encouraging.....i.e.
40% death rate.

Is this correct?   Based on statistics only, what is the percentage
expected survival rate?

Best wishes

Alistair Richardson

Date: Thu, 9 Jan 1997 17:13:54 GMT
To: R Alistair Richardson 
From: "M. Nally" 
Subject: Re: Breast Cancer

Hi Alistair,

These figures come from Cancer Research Campaign literature. I am away from
home at present and can not give you more detailed info. You can contact CRC
for their breast cancer info sheet. Survival data is usually quoted as
percentage surviving after 5 years and according to the stage of cancer. I
am not sure if the CRC provide these figures in detail. Sorry not to be of
more help but I would not want to give you incorrect info.

Regards, Marie

Date: Wed, 08 Jan 1997 14:33:57 -0800
From: Professor Avril Henry 
To: UKBCA@somewhere.org.uk
Subject: Congratulations

Dear Marie Nally,
I must congratulate you on filling such a Long Felt Want. Last April I
was mistakenly informed that I had advanced breast cancer--a lumpectomy
showed that the tumour was benign, notwithstanding the unexplained
dimple
associated with it. During the two weeks after my "diagnosis" I dropped
everything to find information on the Web, and was utterly appalled by
the paucity and patronising tone of UK offerings (one more or less
said Do Not Press This Button Unless You can Handle Long Words).
Eventually I built up a list of helpful URLs (attached, just in case 
any of them is new to you): it was the US sites which saved my sanity
(especially the wonderful Oncoline at Univ. Pennsylvania. I am quite
certain that you site will be the saving of 100s of UK and other users.
Well done, and thank you.

WARNING: The remainder of this message has not been transferred.  Turn off the 
ÒSkip Big MessagesÓ switch and check mail again to get the whole thing.

Date: Thu, 9 Jan 1997 17:12:47 GMT
To: Professor Avril Henry 
From: UKBCA@somewhere.org.uk
Subject: Re: Congratulations

Hi Avril,

Thanks for your e-mail. I'll look at some of your bookmarks when I can. We
would be interested in your comments and contributions for our site. Stay well.

Date: Sat, 14 Dec 1996 22:44:29 -0500
From: Judith Hendler 
To: UKBCA@somewhere.org.uk
Subject: Breast incidence and treatment in Ireland

Dear Marie Nally and Nina Pope:

I am a medical writer living in the United States who is interested in
doing a book of case studies on Irish women with breast cancer.  Any
suggestions about where to start would be greatly appreciated.  I would
also be glad to share information with you.

Looking forward to hearing from you--

Judith Hendler

Marie Nally wrote:

> Hi Judith,

> We list a couple of Cancer Contacts in Belfast on our pages (Action Cancer
> and the Ulster Cancer Foundation). We have debated the description of our
> site as "UK" vs. "British." I only have the address of one Irish
> organisation:
> 
> Irish Cancer Society
> 5 Northumber land Road Dublin 4
> Helpline 1 800 200 700
> Admin 003531 66 818 55
> Fax 003531 66 875 99
> 
> "National charity working to save lives from breast cancer and improve the
> quality of life of women with breast cancer through breast cancer research,
> specialist nursing care, breast cancer awareness programmes and Reach to
> Recovery support group."
> 
> We recently had some e-mail correspondence with  a visitor to our site who
> was seeking info on Irish breast cancer support groups and I supplied the
> above. She has offered to seek out and supply us with other info and if we
> receive any we will consider putting it on the site.
> 
> Basically, the unique and significant point about our site is that we
> provide support/info/feedback space for those affected by breast cancer in
> Britain.  Nina and I set up and maintain our site voluntarily with no
> funding other than free web space from Easynet. We are not familiar with
> health care in Ireland. As far as I am aware, there is no similar breast
> cancer WWW site for Ireland. We can put your e-mail on our Feedback page
> when we update the site in late Jan and perhaps that will draw some
> response from visitors to our site.
> 
> Are you on the breast cancer e-mail discussion group? If not, that would be
> a good place to announce you are looking for Irish women with breast
> cancer. To look at the archives of the discussion group:
> 
> http://cure.medinfo.org/lists/cancer/bc_search_sl.html
> Search the Central Archives of the breast cancer mailing list
> 
> http://www.medinfo.org/
> Has all the archives of all the cancer mailing lists
> 
> I do not use these groups myself. I think the info for joining the breast
> cancer group should be on the first URL, if not I could track it down for
> you.
> 
> I would be interested in more information about your project.
> 
> Regards,
> Marie

Dear Marie:

My project is still in its earliest infancy.  While vacationing in
Connemara this past August, I met an Irish-American breast cancer
survivor who told me that women in Ireland who are diagnosed with breast
cancer have a much lower survival rate than their American counterparts,
regardless of the stage at which they are diagnosed.  From the
information I gleaned from your web pages, it seems that the same is
true in the UK.  Why should that be?  This the question we'd like to
address.

I am a social worker by background, and trained in research methodology
(including survey research) while working toward my MSW degree.  Using
this orientation as a starting point, it seems most natural to me to
develop some sort of probability sample of Irish women with breast
cancer and to follow them from initial diagnosis to recurrence.  I would
also select a sample of Irish-American matched controls.  This is the
crux of the idea.  Obviously, to attract funding, I'd have to develop a
full proposal, and I have experience in that area as well.  The book (or
a series of articles reporting the progress of the longitudinal study)
would be based on the results of the research project and (as mentioned
in the initial message) on case studies of individual women.

Would you and Nina be interested in collaborating with me and my friend
Marj?  I think a great deal of good could come from a group working
together on this.

Thank you for getting back to me so quickly.

Regards - and happy Christmas,
Judith

Hi Marie,

I'm afraid I wasn't specific enough about the endpoints that I want to
look at.  All of the factors you mentioned are covariates that can be
controlled if 1) a large enough sample is selected, 2) the sample is
selected carefully, and 3) if "Irish" and "Irish-American" are
specifically defined in ways that have some degree of face validity  
(e.g., all of the first-degree relatives of an "Irish-American" woman
would be of Irish descent only). After doing some exploratory research,
I'd like to design an experiment that would permit identification of 
factors in the healthcare system that contribute to the poor prognosis
for Irish women, regardless of the stage at which they are diagnosed. 
The idea would be to control for as many of the confounding factors as
possible in order to detect flaws in the healthcare system that lead to
increased mortality in these women.  The process of collecting the case
studies could serve the additional purpose of generating hypotheses to
be tested.

I definitely have an ax to grind here.  Under managed care - public in
the UK, private in the US - with bureaucrats and primary-care physicians
acting as gatekeepers, women are prevented from getting the specialized
care that they need in order to survive.  Do we know this already?  Of
course, we surmise it from everything we hear about through the media. 
But a study of this kind might focus the medical establishment's
attention on the problem in a new way, because it would be scientific -
and not just "a bunch of women complaining."  I think it would also be a
powerful tool for community organization among the women of Ireland
around the issue of breast cancer.

Best regards,
Judith

Hi Judith,

OK, you could define Irish and Irish-American but how do you identify and
control all of the possible factors (genetic, lifestyle, etc.) which could
contribute to the occurence of breast cancer or compare each of these
factors between the two populations?

I am no champion of medical culture but I do not believe 'specialized care'
exists that can prevent recurrence or metastases or improve survival
significantly when these occur. What evidence is there?

>and not just "a bunch of women complaining."  I think it would also be a
>powerful tool for community organization among the women of Ireland
>around the issue of breast cancer.

From what I hear, that is much needed. But as an American, I am always
conscious in Britain that I am an "outsider" (though I have lived here 18
years). As I said, I think you need to collaborate with women based in
Ireland.

Sorry if I sound negative and kvetching. I have no problem in sounding like
"a bunch of women complaining" and no desire to spend my time trying to
have my views validated by the medical establishment. The gross information
which already exists about incidence and survival rates demonstrates that
breast cancer is inadequately researched and poorly treated. But research
which looks primarily at the effects of treatment usually gets bound up in
the search for the "magic bullet" cure, preferably one which will make huge
profits for drug companies. Personally, I am more interested in research
into prevention of breast cancer and into improvement of quality of life
for those women with breast cancer. But as I said, I would like to hear how
your proposal progresses.

 Best wishes,
 Marie

Marie,

Call me a cockeyed optimist, but I'm a great believer in research as an
advocacy tool - it's a belief that made me go into social work research
in the first place.  So, I'm going to proceed, and will keep you posted
as the project progresses.  

If, by chance, you should hear about someone in Ireland who would be
interested in working with me and Marj, please let me know.

Thanks and best wishes,
Judith

Hi Judith,

Did you look at the Europa Donna page under Contacts on our site? 

http://www.easynet.co.uk/aware/contacts/

This is a pan-European breast cancer coalition. The rep for Eire is 

Wilma Ormiston
phone number 01 453 7941 or 01 453 0557

She is also on the Europa Donna Executive Board. I do not have an address for her,
 and Europa Donna's HQ address is in Milan:

Via Ripamonti 66
20141 Milano, Italy

Phone 39 2 57 30 54 16
Fax   39 2 57 30 71 43

Hope this helps and will let you know if anyone else comes to mind.

Now I really am away for the holidays!

Best wishes, 
Marie

Date: Fri, 13 Dec 1996 22:33:30 -0500
To: UKBCA@somewhere.org.uk
From: Richard Brown 

"Cancer News on the Net" is an internet publication for cancer patients and
>their families. Our address is 
http://www.cancernews.com 
>Would you consider giving us a link from your site?
>
>Thanks in advance.
>
>Sincerely,
>
>Richard K. J. Brown, M.D.
>Editor, Cancer News on the Net


Hello Richard,

At last I have had a chance to look at you site. The site does look useful and we
will link to you when we next upload our site with changes (prob last week in
Jan). Perhaps you could link to us from your breast cancer section or to our
contacts page from your support groups section.

http://www.easynet.co.uk/aware/

Regards, Marie

Date: Tue, 3 Dec 1996 22:53:37 GMT
To: UKBCA@somewhere.org.uk
From: Trial Account

just found your pages and am delighted. I am very new to this network
business so before  I write a lot I would appreciate if you had the time to
send brief ac  knowledgement of email; this would encourage me to get in
touch again.Thanks  Elizabeth

Hi Elizabeth

>just found your pages and am delighted.

Good. Let us know what you think when you've had time to browse.

Marie

Date: Fri, 6 Dec 1996 23:48:00 GMT
From: Trial Account 

Marie. Thanks for the prompt reply.  I really admire your pages. Have not
found any sign of Irish notices as yet. Perhaps they are in there somewhere;
if not I may make enquiries and maybe could do something about it.   I know
how helpful it can be to link up with others. good luck . Elizabeth

Hi Elizabeth,

>Thanks for the prompt reply.  I really admire your pages.

Thank you.

>Have not
>found any sign of Irish notices as yet. Perhaps they are in there somewhere

I haven't seen any. We list a couple of Cancer Contacts in Belfast on our pages
(Action Cancer and the Ulster Cancer Foundation). We have debated the description
of our site as "UK" vs. "British." I only have the address of one Irish organiation,
perhaps you know them already:

Irish Cancer Society
5 Northumber land Road Dublin 4
Helpline 1 800 200 700
Admin 003531 66 818 55
Fax 003531 66 875 99

"National charity working to save lives from breast cancer and improve the
 quality of life of women with breast cancer through breast cancer research,
 specialist nursing care, breast cancer awareness programmes and Reach to
 Recovery support group."

This info is from a booklet Channel 4 put out in Oct 1995. Maybe you could let
me know if this info is current/correct and we'll put your e-mail on our 
Feedback page.

>if not I may make enquiries and maybe could do something about it.   I know
>how helpful it can be to link up with others. 

Let us know how you get on. Good luck.

Marie

Date: Sun, 8 Dec 1996 16:38:20 GMT
From: Trial Account 

Thanks Marie. That address is correct. I will try to find out the best
person to contact and have a chat about it. I shall get  back to you. Elizabeth

>Date: Sat, 30 Nov 96 17:12:17 -0800
>From: "Benjamin B. Wechsler, II" 
>Subject: New potential link for your site
>
>Please be advised that the Breast Cancer Information Service 
(http://trfn.clpgh.org/bcis) offers a broad spectrum of information on breast
cancer and breast health for patients, survivors, family members and other 
interested persons. I think this will add a valuable resource for anyone coming 
to your site.
>
>Ben Wechsler
>Webmaster
>BCIS

Date: Thu, 24 Oct 1996 10:03:47 -0600
From: Colleen Norris 

My name in Colleen Norris. My sister Fran Norris has recently published a book
of poetry which is a journal of her experiences with her diagnosis and
treatment of breast cancer. She lives in Victoria Canada. The book is
titled " A Voice to be Heard". Those with Breast Cancer will truly
relateto her poems. Those who love people with Breast Cancer get a
better perspective the experience of cancer. It is wonderfully written and 
can be ordered thru the internet. The web site to order the book is

http://www.trafford.com 

Take care.

Colleen

From: kemoshark@kidscope.org
Subject: Re: KIDSCOPE

>Today I visited your excellent web site at www.easynet.co.uk/aware/. I 
>wouldlike to introduce you to and invite you to visit our web site at
>www.kidscope.org.

Hello,
I have now had a chance to take a brief look at your site. Swimming sharks - 
very fancy. I couldn't see prices for your products. I presume the video 
would not work in Britain (US ones usually don't).

regards, Marie

Dear Marie,
Thanks for the compliment on our web site. You didn't see any pries because
we don't sell either the comic or the video. We rely on contributions from
the public for funding. We have videos in production that are compatible
with the machines used throughout Europe and Australia.

Sincerely, Charles Center

>Hello,
>
>I would like to request that you send me an information 
>packet, if this is possible.  I am interested in information 
>on communityhealth education, facts (ie, incidence) about 
>breast cancer and materials on teaching breast self exams. I 
>am a consultant in health care development - and am working 
>in Gaza. 
>
>Nancy Dinsmore

Hi Nancy,

We do not have an info pack to send you. Our web site is run voluntarily 
in our spare time by myself and another women. You can gets facts about 
incidence for Britain from the Cancer Research Campaign, but they make a 
charge for their publications so it is best to request a list and sample 
from the CRC (at 610 Cambridge Terr, London NW1).

As far as I am aware, the Health Education Authority in Britain does not 
produce an information pack on breast cancer. You should contact some of 
the organisations listed on our Cancer Contacts for more info, esp BACUP, 
Breast Cancer Care and CancerLink. Only CancerLink is on e-mail 
(cancerlink@canlink.demon.co.uk). There is a BACUP-related web site on 
our Hotlist.

You are welcome to reproduce our Breast Self-Examination page. The 
information was supplied to us in the Estee Lauder Press pack. I think 
both the Breast Care Campaign,the Women's Nationwide Cancer 
Control Campaign and probably others on our Cancer Contacts list
produce BSE information. 
I hope this helps.

Regards,

Marie

>I am Juliette Sletten, Senior Liaison for the National Action Plan on
>Breast Cancer's Information Action Council.  We have recently launched a
>web site at http://www.napbc.org, and we have included a link to your
>organization in our Breast Cancer Resources section.  I am writing to
>ask for a link to our site from yours.  
>
>Here's some information about the NAPBC and the web site:
>
>The National Action Plan on Breast Cancer (NAPBC) was initiated in
>response to the National Breast Cancer Coalition's 2.6 million signature
>petition which was presented to President Clinton  in October, 1993.
>This petition called for a coordinated national strategy to combat
>breast cancer through public/private partnerships.  Since this request,
>the NAPBC has organized to stimulate rapid progress in eradicating
>breast cancer by advancing knowledge, research, policy, and services.
>The Plan has served as a catalyst for national efforts, coordinating
>activities of government and non-government organizations, agencies, and
>individuals, and encouraging new ideas and mobilizing partnerships to
>"jump-start" innovative, long-term efforts that will result in rapid
>progress in the fight against breast cancer.  The NAPBC is co-chaired by
>Susan J. Blumenthal, M.D., M.P.A., Deputy Assistant Secretary for Health
>(Women's Health) in the U.S. Department of Health and Human Services,
>and Fran M. Visco, Esq., President of The National Breast Cancer
>Coalition.
>
>The NAPBC Internet Web site provides an exciting forum for learning more
>about the NAPBC and gaining easy access to the most up-to-date, credible
>sources of  breast cancer information on the Internet.  The Web site
>provides information about the many exciting activities and
>accomplishments of the Plan, its organization and the more than 150
>participants of the NAPBC Steering Committee and Working Groups, and
>provides an opportunity to send messages to the NAPBC.  
>
>The Web site presents NAPBC products, such as the position paper on
>hereditary susceptibility testing for breast cancer, educational
>curriculum guidelines for health care professionals on genetic testing
>for breast cancer, and guidelines on the ethical use of biological
>materials, such as breast tissue, in research.  Information about other
>products, such as the NAPBC educational video on genetic testing will
>also be available.
>
>The Web site also provides "one-stop shopping" for credible information
>and answers to frequently asked questions about breast cancer.  The site
>serves as a gateway to information on the Internet about clinical
>trials, new scientific discoveries, ongoing breast cancer research as
>well as information about breast cancer advocacy and other organizations
>and events and online breast cancer newsgroups.

Hi Juliette,

>web site at http://www.napbc.org


Looked at your site yesterday, which I found to be well designed and
useful. We are happy for you to link to us
(http://www.easynet.co.uk/aware/). I could only see a link to the Breast
Cancer Care page in our Cancer Contacts section
(http://www.easynet.co.uk/aware/contacts/bccare/index.html) but perhaps I
missed a link to our home page? This might be useful as our site is the
first and only site dedicated to providing information and support for
those affected by breast cancer in Britain and we list 25 Cancer Contacts.
Our hotlist links to several other British cancer sites.

We will link to your site from our hotlist
when we next up-load our site in early Dec.

Regards, Marie

Dear Site Manager -
I was visiting your web site http://www.easynet.co.uk/aware/
>recently and noticed it would be a prime candidate for an ad campaign we are
>running for DHEA, a new drug that protects against heart disease. We are
>looking for high quality sites to accept GIF banner ads that will take
>interested individuals to DHEA Central, a place to buy and find more 
>information about DHEA.  We are currently paying a nickel for each unique 
>click on these ads.  There are also eAds for stock quotes, Internet 
>advertising, and hot stock picks available for your use.
>
>       To run the ads, all you have to do is post some HTML code (displayed
>below) in one or more places on your site...we do the rest. Our tracking
>software starts tracking clicks from your site with the first click
>generated. You can register for payment by going to our site and
>completing the Host Site Registration Form. 
>
>        For additional information, please feel free to contact me.
>
>Best regards,
>
>John Nail

Dear John Nail,

Keep your nickels. We are not interesting in advertising drugs. Perhaps you
would have realised that if you had actually read the text on our site.

Marie Nally