Guestbook
Hi folks, Just last night my wife was diagnosed with a form of breast cancer called PAGET'S disease. We can not find any material on this! (other than references to a bone disease). Can anyone help us find information on PAGET's DISEASE OF THE BREAST??? Mitch Barrack - AT&T; Orlando Mitch Barrack <mbarrack@att.com> Orlando, Fl USA - Thursday, October 30, 1997 at 10:53:08 (EST) i am 12. and doing a report for a human disease project in school for 7th grade. your home page was very useful to me. My aunt also had breast cancer but she had surgery and it went away. maria stanley <lstanley@ssti.com> sunnyvale, ca united states of america - Thursday, October 30, 1997 at 01:55:02 (EST) Hi to all breast cancer survivors and significant people! Had a mastectomy July 95 at age 41 after lump undetected by mammogram but detected by me. No lymph node involvement. On tamoxifen even if the benefits for premenopausal women are dubious. So far so good! Neat to see a website and a guestbook for all interested parties. Roxanne Le Blanc <lemieux@magma.ca> Wendover, On Canada - Wednesday, October 29, 1997 at 22:48:27 (EST) Eileen Noakes <auntied@mnsi.net> La Salle, ON Canada - Wednesday, October 29, 1997 at 15:53:01 (EST) i was diagnosed in may of 1997, seem life has been a litlle strange since but i know that i have faith in the lord to do his will and i will continue to do my part. brenda coldewe day jacksonville, fl usa - Wednesday, October 29, 1997 at 10:49:21 (EST) Your site is a ray of light. My wife has been diagnosed with breast cancer in March, 1997 and we are still trying to come to grips with the disease. I shall certainly show her this highly informative homepage. Thank you very much. George F. <ferao@aol.com.> Edmonton, AB Canada - Tuesday, October 28, 1997 at 02:25:08 (EST) My step-sister passed away three years ago from breast cancer, and last night I found out my Mom has it now. Her prognosis looks good but I'm still scared. Thank you for this home page. My prayers of support go out to all the women and families who are fighting this disease. Byron Eldridge <dougsmom@uniserve.com> Abbotsford, BC Canada - Monday, October 27, 1997 at 17:49:40 (EST) I had a mastectomy three years ago and I am looking into reconstructive surgery. If you have chosen this elective, please e-mail me with your positive or negative results. I would really like to be as informed as possible before making my decision. Thanks! Marian Gale <Bigale@worldnet.att.net> Beavercreek, oh - Sunday, October 26, 1997 at 12:52:20 (EST) My good friend has just found out she has breast cancer, so I'm looking for anything at all. I came across you. The doctor says she must have surgery immediately, and decide whether it's to be a lumpectomy or a mastectomy or a biopsy. I wonder why they rush her so in making up her mind. I'd like information about whether it's best to wait and see or to act. Apparently after several faithful years of mammograms, an irregularity showed up a month ago or so. Now the doctor says it's an aggressive cancer and must be dealt with right away. I found a very interesting website from the UK which I highly recommend. There is quite famous woman photographer, Jo Spence, who's own portraits of her and breast cancer are amazing. The website is www.easynet.co.uk/aware/jospence/ An earlier writer said why can't we get together on this somehow -- it's affecting tens of thousands of women. I agree. It's epidemic and why is that? Best wishes and I'd love to hear back from someone. Judy Haiven <jhaiven@link.ca> Saskatoon, SK CANADA - Friday, October 24, 1997 at 15:47:45 (EDT) OR marian gale <bigale@WORLDNET.ATT.NET> BEAVERCREEK, OHIO - Friday, October 24, 1997 at 14:49:37 (EDT) Would appreciate comments from readers who are familiar with the recent studies in the New England Journal of Medicine which suggest long term survival for Stage 1 & 2 breast cancer is increased if both chemo and radiation are taken. I have just finished chemo and I am being refused radiation even though I am willing to take the risks of side effects. I have a stage 2 grade 3 cancer and had a mastecomy. Where can I go from here. The window of opportunity closes quickly. I am told the reason is it is not the protocal in NS. I have not been given reasons that says these studies are not accurate or other studies say the opposite. One study was completed in BC over 10 years I believe and the other 15 years in Denmark. Both studies came to the same conclusion. If anyone can offer me suggestions I would really appreciate it. Gail Muir <gmuir@uccb.ns.ca> Sydney, ns canada - Thursday, October 23, 1997 at 22:03:14 (EDT) I am a 16 year old student in England, and am doing a project on treatments, causes and global distribution of breast cancer. Your page was very informative and helpful, thank you. Sarah Herrmann <Sarah.Herrmann@dial.pipex.com> Hitchin, Herts ENGLAND - Wednesday, October 22, 1997 at 13:35:46 (EDT) My grandmother had breast cancer and died in the summer of '94. Now my physiology class is doing cancer projects using the internet as a resource. Your web page has provided me w/ so much information. Thank you very much! Michelle Fenlon <Shellnov@aol.com> Lakeville, MN - Wednesday, October 22, 1997 at 11:55:03 (EDT) I appreciate your web site very much. I was 41 in June 1995 when I was diagnosed with intraductal carcinoma with 2 invasive tumors that measured .4cm and .2cm...no node involvement. I had a mastectomy with no chemo or radiation therapy and opted not to use tamoxifen...being premenapausal, the research was not encouraging. This July l997, I had another mastectomy...lobular hyperplasia...a precancerous condition. It has been a long and weary road to travel but what can we do but move ahead and hope for the best. I've read lots and lots of books on the topic of cancer, survival, death, and spirituality. There are no true support groups available in the area that I live in. There are so many of us...yet it is difficult to really connect with people who have gone through cancer and continue to deal with it on some level each day. My mother died in 1991 of breast cancer and after reading some of the messages on this page, I worry about my daughters futures. I'm glad to have discovered this page...helps to alleviate that feeling like you're the only one who has been through this. Best wishes to all. Randi Kish <randi@nycap.rr.com> - Friday, October 17, 1997 at 20:40:25 (EDT) Hi! I think this web site is great. Just what I needed. I want to talk to other women like me. I was diagnosed in January and had a lumpectomy, 10 lymph nodes were positive so I had Chemotherapy and Radiation. I finised on August 1st and thought I was doing OK. I have had to deal with a lot of pain. It seems to be getting worse. I found a new lump but was told it is only the radiation side effects. I don`t know what to think, only time will tell. If only I could talk to other women who are going through or have gone through this. Please help. Paulette Dizin <Cat.20@sympatico.ca> Ottawa, Onon Canada - Friday, October 17, 1997 at 17:28:24 (EDT) Please send info on advance breast cancer Shirley Tarr Springfield, IL U S - Friday, October 17, 1997 at 11:22:33 (EDT) Thanks for the web site. My Granddmother died in 1991 of breast cancer. I am trying to work in my community to make women more aware that early detection is the best protection. Eliska Renee McGrew <ermcgre@lliberty.edu> - Wednesday, October 15, 1997 at 12:04:42 (EDT) April, 1995. What a month!! After surgery to remove a lump under my arm, not detected by mammogram, but found by me--malignant. Lump was lymph node with cancer. so, onward, to mastectomy and removal of quite a few more lymph nodes. Stage 2, 2 lymphs involved. CMF for 6 months. Still here, now age 45. Still worried about recurrence. So far, so good. God was quite merciful and prayers of many helped. Feel like I was forced into club I did not want to join. Knowledge about the disease is power. Thanks for this site. Sherry Barron <sbarron@neosoft.com> Mandeville, la usa - Tuesday, October 14, 1997 at 22:29:19 (EDT) I start radiation tomorrow. I have language I never thought I'd have. I need more information..wrong. I need GOOD information. Does anyone really know? I'm "young" (51) with "good" cancer. Does this give you an idea of the population I have joined?! There are so many of us. It seems to me we ought to be more united. Any ideas? Deb <wimberly@ac.net> Pinehurst, NC USA - Tuesday, October 14, 1997 at 20:05:04 (EDT) I start radiation tomorrow. i have language i never thought I'd have. I need more information..wrong. I need GOOD information. Does anyone really know? I', "young" (51) with "good" cancer. Does this give you an idea of the population I have joined?! There are so many of us. It seems to me we ought to be more united. Any ideas? Deb <wimberly@ac.net> Pinehurst, NC USA - Tuesday, October 14, 1997 at 20:02:57 (EDT) Keep up the great work, your dedication and support to people with breast cancer is wonderful. You have put a great deal of effort into this project, your info is what people need. Larry Sadinsky <bh@b-hdesign.com> Toronto, OONONOOO Canada - Tuesday, October 14, 1997 at 19:20:53 (EDT) HELEN FAULKNER <faulkner@primenet.com> sierra vista, az usa - Monday, October 13, 1997 at 20:44:55 (EDT) I'm the Co-ordinator for a Breast Screening Mammo Program in the Eastern Region og Nova Scotia and I'm interested in any info I can get my hands on. Thanks, great web page. Toni Toni MacNeil <j1472@ns.sympatico.ca> Sydney, NS Canada - Monday, October 13, 1997 at 18:50:59 (EDT) Thank you for a very helpful and informative website. I would also recommend everyone see a documentary made by the Australian Broadcast Corporation and Elle McFeast (seen on CBC's The Passionate eye Oct 12, 1997) called "Breasts". Insightful and funny, it promotes breast cancer awareness in a wonderful way. Pat Caporali <PCaporali@videotron.ca> Montreal, qc Canada - Monday, October 13, 1997 at 01:36:03 (EDT) THIS IS A GREAT IDEA . DIAGNOSED IN JUNE 1995. HAD A LUMPECTOMY AND 3 WEEKS RADIATION. NOW TAKING TAMOXIFEN AND SO FAR SO GOOD. EVERY TIME I GO FOR A CHECK UP I FEEL MORE CONFIDENT ABOUT MY FUTURE. I THANK GOD FOR GREAT FAMILY SUPPORT FROM MY 2 TEENAGERS AND MY HUSBAND I CAN ONLY TELL YOU THAT EVERY DAY GETS THAT MUCH BETTER. MANY THANKS FOR THIS WEBSITE. GOD BLESS Darlene Caven <BEC@NETCOM.CA> BRAMPTON, ON CANADA - Monday, October 13, 1997 at 00:41:44 (EDT) Just visited your website and think its wonderful. I am especially interested in Sally Renwick's letter from the U.K. Could you please let me know what is a Stem Cell Harvest and Stem Cell Transplant. Need all the help I can get for my daughter. Keep up the good work. Sheila Doughty Sheila Doughty <ndoughty@sympatico.ca> Oakville, Ont Canada - Thursday, October 09, 1997 at 13:35:32 (EDT) Got a scare, which hasn't been answered so far. My doctor said,(after a mamogram) that I have small calcium deposits in my breast. What does this mean? I am frightened by the silence in this observation. Marlene Dunning <growly@durham.net> Whitby, Ont Canada - Wednesday, October 08, 1997 at 23:22:08 (EDT) Thank you for your informative and easy to navigate website. My aunt is in her first year of recovery after radical mastectomy and intensive chemo. This issue has been foremost on our collective family minds. I thank you for providing this wonderful service for all of us to access. Donna-Lynn Baskin <dlbaskin@nbnet.nb.ca> Rusagonis, NB Canada - Wednesday, October 08, 1997 at 00:31:42 (EDT) thanks for the stats on how many women had breast cancer in 1997, i needed up-to-date numbers and this helped Julie <jb97ao@badger.ac.brocku.ca> niagara falls, ontario canada - Monday, October 06, 1997 at 16:14:28 (EDT) my mother is 70. diagnosed with breast cancer 10 years ago. Recurrance to the spine 3 years ago, radiate and did well until now . more spinal spots raditated. and old site at L3/ L4 now fast growing. lives in small town. CARE WAS HORRENDOUS! moved her to larger institution. Medical staff so willing to let her believe "well you're going to die anyway....so" s. w. summers <ssummers@i-55.com> covington, la 70433 - Saturday, October 04, 1997 at 10:31:50 (EDT) What is level 4 breast cancer and is there a chance for a cure? What type of medical treatment is available? PAUL FORTUNE <eagle1@ivic.net> HEMET, CA. RIVERSIDE - Thursday, October 02, 1997 at 22:58:50 (EDT) This is a great page!:) I came across it through the Lee's Denim Day page. I'm a Resident Assistant @ the University of Wisconsin-La Crosse and I plan on doing a bulletin board for my residents making them more aware of breast cancer because of all the info I have now found! Thank you very much! I really loved the quilt. It kind of puts things in perspective. Jen Gau <gau_js@students.uwlax.edu> La Crosse, WI USA - Thursday, October 02, 1997 at 02:09:00 (EDT) With your info ,i've learn a lot about breast cancer..you've help on my college project. thanks.can you tell me what are the statistic for the breast cancer?if yes pls e-mail. sharon eelyn lee <lelsharon@hotmail.com> KL, Malaysia - Wednesday, October 01, 1997 at 06:52:38 (EDT) Happy to find a Canadian website and yes I think it is veryimportant to have a positive attitude. However quality of life is more important than quantity. First diagnosed in l980 and had modified radical and in 81 anothe mastectomy and ok until 95 whenit has metastized and am now stage 4. Since going on the internet have l ost the feeling of isolation that is so draining. Am 69 and have a verysupportive family and especially luckyto have sucha helpful husband, Doreen Doreen Jaskela <doreen_jaskela@bc.sympatico.ca> Kelowna, BC Canada - Wednesday, October 01, 1997 at 01:40:23 (EDT) Over the past few months we have come to believe that individually, each one of the following helps you. Used together, they form a powerful tool. 1) Be positive. Count your blessings. You will live better this way; 2) Keep stress to a minimum. Try to maintain an even temperament. It costs nothing to be nice. 3) Prayer helps. There is good substantiating data, that people with some form of belief do better. Perhaps the meditation aspect is the key. 4) Eat healthy. It is difficult during chemotherapy. There is no excuse afterwards. 5) Take regular exercise. A short walk a few times a day is good for you. If you are tired you need to take it easy. 6) Visualization helps. There has been much written about this. Thought for today:- While the genetic and environmental aspects of cancer are cause for concern, there is evidence that all people get cancer on a regular basis. Most people fight it off without realizing it. Others do not. It seems reasonable that when we get treatment for breast cancer we first remove the central site. Then we use chemotherapy to "knock back what is left". Suppose there is a threshold below which the body can beat back the cancer. Suppose that chemotherapy gives your body a chance by bringing the level of cancer into a defeatable range. Suppose that we can help our body defeat the cancer that remains by using 1) to 6) as a weapon - using our mind and body against the cancer. It would seem reasonable that we should continue our fight by using these tools always. Mary B. <brian.hatchett@irap.nrc.ca> halifax, NS Canada - Tuesday, September 30, 1997 at 21:28:33 (EDT) I'm doing a project for school and I feel more confident about the topic now thanks a lot!!!!!!! Kelsey <AthenaGIT> Durham, NH U.S.A. - Tuesday, September 30, 1997 at 15:50:15 (EDT) Hi, I've had cancer at aged 42,(now 69) My oldest daughter died of breast cancer at age 42,after 13 years battle. Daughter no 3, now has had a double mastectomy and lymph nodes remover,6 months of chemo,only CA found in her lymph nodes,original site unknown. Anyone else experience this and what can I do to help. Daughter no 3 was 42 when diagnosed. It is now a wait and see situation, whatelse can we do? Regards Sheila Sheila Doughty <ndoughty@sympatico.ca> Oakville, Ont Canada - Tuesday, September 30, 1997 at 15:10:40 (EDT) What a beautiful site you have created with a wealth of helpful information. Keep up the good work!! Thank you. Anne Eerdmans <help@newapproachestocancer.com> Pointe Claire, Quebec Canada - Tuesday, September 30, 1997 at 15:02:57 (EDT) Hi! I was diagnosed on May 20,1997 with INFLAMMATORY BREAST CANCER. On, 5/23/97, I began high dose Chemo (Adriamycin/Cytoxan). I am scheduled for surgery (a bilateral mast.) tomorrow, 10/1/97. Inflammatory bc is a rare form of this dreadful disease with only 4% of the bc patients therefore, the survival rates haven't been too good...in the past that is. They are getting better and I plan on being around at least 15 - 20 more years! After all I'm only 32! I hope and pray that they will find a cure for this. Any and all information on this disease is helpful so Iam very thakful for this page. For more info on Inflammatory Breast Cancer (you are not alone), please look up www.bestiary.com or write to us at ibc@bestiary.com Thanks and God bless each and every one of us! Spring Thorpe Spring Thorpe <sthorpe@shore.intercom.net> East New Market, MD USA - Tuesday, September 30, 1997 at 13:58:49 (EDT) Thanks for the site. I am a 54 year old woman who was diagnosed 14 yeaars ago. I had a recurrence 4 years ago to the scar line and 7 bone mets. CAF and Taxol didn't work for me. I was told I had 18 - 22 months to live in Iowa City. That was almost 4 years ago. I know I could die at any time, but right now I am still doing well. No new spots since first recurrence and 3 spots have disappeared from the bone scans. I use Michio Kushi's book The Cancer Prevention Diet and Anne Frahm's book The Cancer Battle Plan for detoxiing the body plus tamoxifen. I feel like there is more I should be doing but don't know what as being chemo resistant means I am not eligible for a BMT. Any one out there have natural alternatives that seem to be working.? I also take vitamins and flax seed. Shirley shirley perry <sperry@galesburg.net> galesburg, IL USA - Tuesday, September 30, 1997 at 12:59:12 (EDT) It's nice to find some letters from other women who have had Breast Cancer.I am 39 years old, with 2 little boys and a very supportive husband and network of friends, all of which has helped me to get through the last year of pretty intensive treatment. But however sympathetic friends and family are they do not and cannot know what it is really like to have been through all this. It is very helpful to read other peoples experiences and to know that there are some survivors out there! I have high risk cancer as they found it had spread to 17 lymph nodes. I have had a lumpectomy, segmentectomy and mastectomy. Then high dose chemo,(Adriamyacin) followed by a Stem cell harvest, a Hickman line put in, and a Stem cell Transplant which was pretty grim, but I survived it! Then I had 5 weeks of Radiotherapy. I finished my treatment in July 97 and feel great now. The oncologist reckons I have a 70% chance of living the next 5 years. Without the Stem cell transplant it would have been a 40% chance. I want at least 20 years! I want to see my grandchildren and here's hoping! Sally Renwick <PRenwick@aol.com> UK - Tuesday, September 30, 1997 at 12:40:19 (EDT) I had my first breast ca at age 29 while nursing. Since I have had 5 recurrances with doctors saying: "Oh well it is no big deal people get hit by cars everyday." That of course has made me really want to fight the whole breast cancer system. I want to know all I can do to make the system know that we are FIGHTING FOR OUR LIVES. I want breast cancer victims to be treated as though someone is trying to save their lives and work for a cure. Berdyne Hoover <Crafty1221@aol.com> Lennon, MI USA - Monday, September 29, 1997 at 23:50:52 (EDT) My daughter is a CANADIAN CANCER SOCIETY volunteer, and I am in the process of collecting related web site information, both national and private. Most countrys have national and private cancer research and support organizations, which, in addition to private sites like this one, contribute significantly to the knowledge base. KEEP UP THE GOOD WORK. J. Fraser <fraserj@sympatico.ca> Toronto, Ontario Canada - Monday, September 29, 1997 at 17:42:07 (EDT) Hello, I also found your Web Site address in Chatelaine. I went through mastectomy surgery and reconstruction 7 weeks ago. I am awaiting a decision on Chemotherapy. Has anyone heard of Paget's Disease. I had never heard of it until my diagnosis. Please contact me at this e-mail address if you have any insights. Thanks in advance. Keep smiling!! Deb Menary <jmcguire@interhop.net> Tottenham, On Can. - Sunday, September 28, 1997 at 20:08:52 (EDT) Hi my name is Jane Eisener, I experienced breast cancer when I was 27. I am now 8 years well and feeling great. Jane Eisener <jmcguire@interhop.net> Barrie, on Canada - Sunday, September 28, 1997 at 20:01:21 (EDT) Visited your web site for the first time today. I got the internet address from the Chatelaine magazine. I will be visiting your site and plan to forward my comments later. I am a four year survivor. Great to see a resource such as this. Nancy Dupas <dupasj@mczcr.gov.on.ca> St. Catharines, ON Canada - Saturday, September 27, 1997 at 09:31:21 (EDT) My sister is nurse here in Bennettsville, S.C. and is working on project for National Breast Cancer Awareness Month through the local hospital. She asked me to try and find some information and/or pictures about breast cancer on the Internet. Thanks for the use of your web site and good luck in the fight against this disease. Jeffrey A. Brigman <bubba@pdn.net> Bennettsville, SC United States - Friday, September 26, 1997 at 20:41:46 (EDT) A very wonderful friend is currently recovering from radical mastectomy with tram reconstruction. She's in her early 30's with a diagnosis of adenocarcinoma, highly invasive with 10+ nodes. She found the first lump by breast self-exam the week before July 4, 1997, and by mid August there were three lumps. No response to chemo so far - she's been told her only hope is massive chemo and bone marrow transplant. She's an incredibly upbeat person with a loving husband, two adorable daughters, and lots of friends - and every single one of us is terrified. Anyone with words of encouragement or wisdom, or better yet, hope, please contact me! Debbie McConnaha <mcconnah@indiana.edu> Greenwood, IN USA - Sunday, September 21, 1997 at 20:22:41 (EDT) |